Page 1

From Blog to Book.

BRUCEANDBARB. BLOGSPOT. COM


BlogBook

2

c 2013 bruceandbarb.blogspot.com


Contents 1 2010

9

1.1 May . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

9

1.1.1

May 1, 2010 (2010-05-01 19:20) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

9

1.1.2

05-04-2010 (2010-05-04 08:24) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

9

1.1.3

May 4, 2010 (2010-05-04 18:36) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

10

1.1.4

05-07-2010 (2010-05-08 11:11) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

12

1.1.5

05-10-2010 (2010-05-10 18:16) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

12

1.1.6

05-11-2010 (2010-05-11 10:57) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

14

1.1.7

05-11-2010 GOOD NEWS DAY (2010-05-11 11:31) . . . . . . . . . . . . . . . .

15

1.1.8

05-12-2010 (2010-05-12 20:36) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

15

1.1.9

5-15-10 (2010-05-15 11:43) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

17

1.1.10

5-16-2010 (2010-05-16 17:03) . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

18

1.1.11

(2010-05-17 13:44) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

19

1.1.12

May 25, 2010 (2010-05-25 17:09) . . . . . . . . . . . . . . . . . . . . . . . . . . .

20

1.1.13

5-25-010 second entry (2010-05-25 22:25) . . . . . . . . . . . . . . . . . . . . . .

22

1.1.14

5-27-2010 (2010-05-27 20:06) . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

23

1.1.15

05-28-2010 (2010-05-28 21:02) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

23

1.2 June . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

24

1.2.1

June 2, 2010 (2010-06-02 19:32) . . . . . . . . . . . . . . . . . . . . . . . . . . .

24

1.2.2

June 3, 2010 (2010-06-03 23:57) . . . . . . . . . . . . . . . . . . . . . . . . . . .

27

1.2.3

June 10, 2010 (2010-06-10 23:03) . . . . . . . . . . . . . . . . . . . . . . . . . . .

31

1.2.4

June 14, 2010 (2010-06-14 16:16) . . . . . . . . . . . . . . . . . . . . . . . . . . .

32

1.2.5

June 21, 2010 (2010-06-21 19:15) . . . . . . . . . . . . . . . . . . . . . . . . . . .

33

1.2.6

June 26, 2010 (2010-06-26 11:35) . . . . . . . . . . . . . . . . . . . . . . . . . . .

35

1.2.7

June 27, 2010 (2010-06-27 21:38) . . . . . . . . . . . . . . . . . . . . . . . . . . .

36

1.3 July . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

37

1.3.1

July 1, 2010 (2010-07-01 12:37) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

c 2013 bruceandbarb.blogspot.com

37 3


BlogBook

4

CONTENTS

1.3.2

July 4, 2010 (2010-07-04 10:48) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

38

1.3.3

July 6, 2010 GREAT NEWS (2010-07-06 16:27) . . . . . . . . . . . . . . . . . .

39

1.3.4

July 9, 2010 (2010-07-09 11:54) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

40

1.3.5

July 10, 2010 (2010-07-09 23:02) . . . . . . . . . . . . . . . . . . . . . . . . . . .

40

1.3.6

July 12, 2010 (2010-07-12 21:35) . . . . . . . . . . . . . . . . . . . . . . . . . . .

42

1.3.7

July 13, 2010 (2010-07-13 22:38) . . . . . . . . . . . . . . . . . . . . . . . . . . .

43

1.3.8

July 15, 2010 (2010-07-15 23:51) . . . . . . . . . . . . . . . . . . . . . . . . . . .

44

1.3.9

July 18, 2010 (2010-07-18 14:21) . . . . . . . . . . . . . . . . . . . . . . . . . . .

46

1.3.10

July 21, 2010 (2010-07-21 22:14) . . . . . . . . . . . . . . . . . . . . . . . . . . .

46

1.3.11

(2010-07-21 23:55) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

47

1.3.12

July 22, 2010 (2010-07-22 18:22) . . . . . . . . . . . . . . . . . . . . . . . . . . .

47

1.3.13

July 22, 2010 (2) (2010-07-22 22:48) . . . . . . . . . . . . . . . . . . . . . . . . .

48

1.3.14

July 23, 2010 (2010-07-23 04:44) . . . . . . . . . . . . . . . . . . . . . . . . . . .

48

1.3.15

July 23, 2010 (2010-07-23 17:03) . . . . . . . . . . . . . . . . . . . . . . . . . . .

49

1.3.16

July 24, 2010 1:00 a.m. (2010-07-24 01:29) . . . . . . . . . . . . . . . . . . . . .

50

1.3.17

July 24, 2010 12:30 p.m. (2010-07-24 12:36) . . . . . . . . . . . . . . . . . . . .

51

1.3.18

(2010-07-25 07:34) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

51

1.3.19

July 25, 2010 7:55 p.m. (2010-07-25 20:40) . . . . . . . . . . . . . . . . . . . . .

51

1.3.20

July 27, 2010 (2010-07-27 13:54) . . . . . . . . . . . . . . . . . . . . . . . . . . .

52

1.3.21

July 28, 2010 (2010-07-28 15:06) . . . . . . . . . . . . . . . . . . . . . . . . . . .

52

1.3.22

July 29, 2010 (2010-07-29 20:09) . . . . . . . . . . . . . . . . . . . . . . . . . . .

53

1.3.23

July 30, 2010 (2010-07-30 12:06) . . . . . . . . . . . . . . . . . . . . . . . . . . .

54

1.3.24

July 31, 2010 (2010-07-31 14:07) . . . . . . . . . . . . . . . . . . . . . . . . . . .

55

1.4 August . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

55

1.4.1

August 1, 2010 (2010-08-01 11:41) . . . . . . . . . . . . . . . . . . . . . . . . . .

55

1.4.2

August 3, 2010 (2010-08-03 20:49) . . . . . . . . . . . . . . . . . . . . . . . . . .

57

1.4.3

August 5, 2010 (2010-08-05 00:12) . . . . . . . . . . . . . . . . . . . . . . . . . .

59

1.4.4

August 9, 2010 (2010-08-09 12:58) . . . . . . . . . . . . . . . . . . . . . . . . . .

61

1.4.5

August 10, 2010 (2010-08-10 22:28) . . . . . . . . . . . . . . . . . . . . . . . . .

62

1.4.6

August 13, 2010 (2010-08-13 17:27) . . . . . . . . . . . . . . . . . . . . . . . . .

64

1.4.7

(2010-08-17 20:26) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

64

1.4.8

August 21, 2010 (2010-08-21 12:06) . . . . . . . . . . . . . . . . . . . . . . . . .

65

1.4.9

August 23, 2010 (2010-08-23 11:35) . . . . . . . . . . . . . . . . . . . . . . . . .

65

1.4.10

August 25, 2010 (2010-08-25 17:52) . . . . . . . . . . . . . . . . . . . . . . . . .

66

1.4.11

August 31, 2010 (2010-08-31 00:20) . . . . . . . . . . . . . . . . . . . . . . . . .

66

c 2013 bruceandbarb.blogspot.com


CONTENTS 1.4.12

BlogBook August 31(b), 2010 (2010-08-31 19:56) . . . . . . . . . . . . . . . . . . . . . . . .

66

1.5 September . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

67

1.5.1

September 8, 2010 (2010-09-08 19:20) . . . . . . . . . . . . . . . . . . . . . . . .

67

1.5.2

September 12, 2010 (2010-09-12 16:02) . . . . . . . . . . . . . . . . . . . . . . .

69

1.5.3

September 14, 2010 (2010-09-14 11:52) . . . . . . . . . . . . . . . . . . . . . . .

71

1.5.4

September 16, 2010 (2010-09-16 10:38) . . . . . . . . . . . . . . . . . . . . . . .

72

1.5.5

September 21, 2010 (2010-09-21 15:13) . . . . . . . . . . . . . . . . . . . . . . .

72

1.5.6

September 27, 2010 (2010-09-27 17:04) . . . . . . . . . . . . . . . . . . . . . . .

73

1.5.7

September 29, 2010 (2010-09-29 16:45) . . . . . . . . . . . . . . . . . . . . . . .

73

1.6 October . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

74

1.6.1

October 1, 2010 (2010-10-01 21:15) . . . . . . . . . . . . . . . . . . . . . . . . . .

74

1.6.2

October 4, 2010 (2010-10-04 09:09) . . . . . . . . . . . . . . . . . . . . . . . . . .

74

1.6.3

October 5, 2010 (2010-10-05 21:18) . . . . . . . . . . . . . . . . . . . . . . . . . .

75

1.6.4

October 8, 2010 (2010-10-08 17:31) . . . . . . . . . . . . . . . . . . . . . . . . . .

76

1.6.5

October 8, 2010 (2010-10-08 21:58) . . . . . . . . . . . . . . . . . . . . . . . . . .

77

1.6.6

October 11, 2010 (2010-10-11 19:50) . . . . . . . . . . . . . . . . . . . . . . . . .

78

1.6.7

October 24, 2010 (2010-10-24 14:33) . . . . . . . . . . . . . . . . . . . . . . . . .

78

1.7 November . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

79

1.7.1

November 13, 2010 (2010-11-13 01:07) . . . . . . . . . . . . . . . . . . . . . . .

79

1.7.2

November 20, 2010 (2010-11-20 12:44) . . . . . . . . . . . . . . . . . . . . . . .

80

1.7.3

November 23, 2010 (2010-11-23 19:13) . . . . . . . . . . . . . . . . . . . . . . .

80

1.7.4

November 24, 2010 (2010-11-24 22:36) . . . . . . . . . . . . . . . . . . . . . . .

81

1.7.5

November 29, 2010 (2010-11-29 00:10) . . . . . . . . . . . . . . . . . . . . . . .

81

1.8 December . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

82

1.8.1

December 3, 2010 (2010-12-03 23:24) . . . . . . . . . . . . . . . . . . . . . . . .

82

1.8.2

December 8, 2010 (2010-12-08 19:49) . . . . . . . . . . . . . . . . . . . . . . . .

82

1.8.3

December 14, 2010 (2010-12-14 13:46) . . . . . . . . . . . . . . . . . . . . . . . .

83

1.8.4

December 24, 2010 (2010-12-26 00:24) . . . . . . . . . . . . . . . . . . . . . . . .

86

1.8.5

December 30, 2010 (2010-12-30 00:45) . . . . . . . . . . . . . . . . . . . . . . . .

88

2 2011

91

2.1 January . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

91

2.1.1

January 8, 2011 (2011-01-08 15:00) . . . . . . . . . . . . . . . . . . . . . . . . .

91

2.1.2

January 14, 2011 (2011-01-14 11:28) . . . . . . . . . . . . . . . . . . . . . . . . .

91

2.1.3

January 19, 2011 (2011-01-19 08:08) . . . . . . . . . . . . . . . . . . . . . . . . .

92

2.1.4

January 20, 2011 (2011-01-20 22:47) . . . . . . . . . . . . . . . . . . . . . . . . .

93

c 2013 bruceandbarb.blogspot.com

5


BlogBook

6

CONTENTS

2.1.5

January 23, 2011 (2011-01-23 21:01) . . . . . . . . . . . . . . . . . . . . . . . . .

93

2.1.6

January 29, 2011 Dad’s 70th Birthday (2011-01-31 21:00) . . . . . . . . . . . .

95

2.2 February . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

96

2.2.1

February 16, 2011 (2011-02-17 00:32) . . . . . . . . . . . . . . . . . . . . . . . .

96

2.2.2

February 21, 2011 (2011-02-21 18:21) . . . . . . . . . . . . . . . . . . . . . . . .

99

2.2.3

February 23, 2011 (2011-02-23 05:23) . . . . . . . . . . . . . . . . . . . . . . . .

100

2.2.4

February 24, 2011 (2011-02-24 21:23) . . . . . . . . . . . . . . . . . . . . . . . .

101

2.3 March . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

101

2.3.1

March 17, 2011 (2011-03-17 16:34) . . . . . . . . . . . . . . . . . . . . . . . . . .

101

2.3.2

Pitter Patter of Little Feet (2011-03-30 17:36) . . . . . . . . . . . . . . . . . . .

102

2.4 April . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

104

2.4.1

Update (2011-04-10 13:57) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

104

2.4.2

(2011-04-25 00:19) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

104

2.5 May . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

104

2.5.1

May 9, 2011 (2011-05-09 22:58) . . . . . . . . . . . . . . . . . . . . . . . . . . . .

104

2.5.2

May 20, 2011 (2011-05-20 17:27) . . . . . . . . . . . . . . . . . . . . . . . . . . .

106

2.6 June . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

107

2.6.1

Walk To End Alzheimer’s (2011-06-07 19:18) . . . . . . . . . . . . . . . . . . . .

107

2.6.2

(2011-06-11 23:39) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

108

2.6.3

Another CT Scan (2011-06-12 21:43) . . . . . . . . . . . . . . . . . . . . . . . . .

108

2.6.4

Update: June 15, 2011 (2011-06-15 23:57) . . . . . . . . . . . . . . . . . . . . .

108

2.7 November . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

109

2.7.1

Update on Mom and Dad (2011-11-10 22:30) . . . . . . . . . . . . . . . . . . . .

109

2.7.2

The Fight Resumes (2011-11-12 01:43) . . . . . . . . . . . . . . . . . . . . . . .

110

2.7.3

The Night Before Surgery (2011-11-13 00:45) . . . . . . . . . . . . . . . . . . .

111

2.7.4

Turn My Grief to Grace (2011-11-13 20:59) . . . . . . . . . . . . . . . . . . . . .

111

2.7.5

(2011-11-14 23:18) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

111

2.7.6

(2011-11-15 23:46) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

111

2.7.7

CyberKnife: Futuristic Treatment NOW (2011-11-29 18:12) . . . . . . . . . . .

112

2.8 December . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

113

2.8.1

Mixed News Day (2011-12-07 00:02) . . . . . . . . . . . . . . . . . . . . . . . . .

113

2.8.2

(2011-12-22 18:30) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

115

c 2013 bruceandbarb.blogspot.com


CONTENTS

BlogBook

3 2012

117

3.1 January . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.1.1

117

(2012-01-16 15:53) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

117

3.2 February . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

118

3.2.1

Proactive Patient Care (2012-02-07 21:15) . . . . . . . . . . . . . . . . . . . . .

118

3.2.2

The Battle Continues... (2012-02-15 22:38) . . . . . . . . . . . . . . . . . . . . .

119

3.2.3

The Final Days (2012-02-26 03:23) . . . . . . . . . . . . . . . . . . . . . . . . . .

120

3.2.4

Keep Fighting (2012-02-28 20:31) . . . . . . . . . . . . . . . . . . . . . . . . . .

120

3.2.5

With Every Breath... (2012-02-29 08:23) . . . . . . . . . . . . . . . . . . . . . .

122

3.2.6

Continued Blessings (2012-02-29 09:24) . . . . . . . . . . . . . . . . . . . . . . .

122

3.2.7

(2012-02-29 20:21) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

123

3.3 March . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

124

3.3.1

(2012-03-04 22:20) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

124

3.3.2

Transition (2012-03-04 22:53) . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

125

3.3.3

(2012-03-09 00:20) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

127

3.3.4

It’s Not the Ending But How You Get There That Matters (2012-03-12 08:57) .

128

3.3.5

It’s not about yesterday or tomorrow – it is only about right now, in the present. (2012-03-21 12:57) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 130

3.3.6

Evidently Far-Off is Now Close-By (2012-03-24 23:23) . . . . . . . . . . . . . .

132

3.3.7

To Wear It or Not To Wear It - That Is The Question (2012-03-27 13:53) . . . .

134

3.4 April . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

135

3.4.1

Another Day of Surprises (2012-04-20 22:43) . . . . . . . . . . . . . . . . . . . .

135

3.4.2

Ethical Training (2012-04-29 12:42) . . . . . . . . . . . . . . . . . . . . . . . . .

136

3.5 May . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

137

3.5.1

Mother’s Day (2012-05-14 14:49) . . . . . . . . . . . . . . . . . . . . . . . . . . .

137

3.6 June . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

139

3.6.1

A Moment and a Day with Dad (2012-06-07 21:51) . . . . . . . . . . . . . . . .

139

3.6.2

(2012-06-19 12:34) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

141

3.7 July . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

142

3.7.1

Hydrocephalus - Not Our Friend (2012-07-17 16:08)

. . . . . . . . . . . . . . .

142

3.8 September . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

144

3.8.1

Another Day in the Life Of... (2012-09-03 22:49) . . . . . . . . . . . . . . . . . .

144

3.8.2

The Results from the Neurosurgeon (2012-09-04 20:26) . . . . . . . . . . . . . .

146

3.8.3

The Night Before... (2012-09-06 21:28) . . . . . . . . . . . . . . . . . . . . . . .

147

3.8.4

May I Have the Envelope, Please? (2012-09-07 16:31) . . . . . . . . . . . . . . .

150

3.8.5

The Day the Coffee Died (2012-09-24 11:46) . . . . . . . . . . . . . . . . . . . .

153

c 2013 bruceandbarb.blogspot.com

7


BlogBook

CONTENTS

3.9 October . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3.9.1

The Day the Coffee Died...Part Two (2012-10-20 11:17) . . . . . . . . . . . . . .

155

3.10 November . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

156

3.10.1

Lord Grant Me the Grace to Tell Them So (2012-11-04 13:58) . . . . . . . . . .

156

3.10.2

Inside the Mind of Alzheimer’s (2012-11-06 17:08) . . . . . . . . . . . . . . . . .

157

3.10.3

A Visit to A.L. Facility #1 (2012-11-18 12:56) . . . . . . . . . . . . . . . . . . . .

159

3.11 December . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

161

3.11.1

A "Little" Housework (2012-12-16 20:06) . . . . . . . . . . . . . . . . . . . . . .

161

3.11.2

Foot Care Day (2012-12-18 17:34) . . . . . . . . . . . . . . . . . . . . . . . . . .

162

4 2013

165

4.1 January . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4.1.1

165

Changes (2013-01-09 22:12) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

165

4.2 February . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

167

4.2.1

8

155

Decisions Are Hard to Make (2013-02-04 21:46) . . . . . . . . . . . . . . . . . .

167

c 2013 bruceandbarb.blogspot.com


Chapter 1

2010 1.1 1.1.1

May May 1, 2010 (2010-05-01 19:20)

Welcome to my blog. I hope to talk about my journey through cancer. I was diagnosed with cancer in mid April, 2010 and at this writing we don’t even have a name for it. I had a small tumor removed from my left neck just under the jaw bone. This is the journal of my journey.

1.1.2

05-04-2010 (2010-05-04 08:24)

Entry by Kurt: We arrived at Waukesha Hospital radiology this morning at 7:30 a.m. Took just under an hour to get here this morning. Beautiful day, sun shining really bright and should be in the 70’s today. Mom is in radiology for her PTscan. We’re all pretty anxious about it but at least mom was able to get some medicaton to relax her this morning. she was pretty anxious about being put in to an MRI tube but the PTscan is a little different so she felt better about that. The procedure will take about 3 hours so Dad and I are having a cup of coffee at the "java coast coffee kiosk". Hopefuly mom will be up to having a light lunch after the procedure and before the meeting with the oncologist. that’s at 1:15. We’re all hoping he’ll have results from the PTScan today but we’re not holding our breath. Thanks to everyone for your continued prayers and emails of support. Some have sent cards and I hope you all know how important those communications are at this time. So some people have asked the question, "how are you REALLY doing?". so I’ll tell you. We’re all pretty scared. Facing unknowns is not fun and no one likes it. But Mom is a very strong lady and she’s ready to face whatever she needs to. c 2013 bruceandbarb.blogspot.com

9


BlogBook

1.1.3

1.1. May

May 4, 2010 (2010-05-04 18:36)

Entry by Kurt: The morning started at 5:30 a.m. A very long day at the hospital today. The PTscan was not as horrible as mom thought it would be. It wasn’t like an MRI tube but they managed to give her some valium to relax her anyway. They injected high levels of glucose in to her blood stream. The glucose will attach itself to cancer cells and tumors and make it a lot easier to visualize in a scan.

to Gyros West in Waukesha for brunch.

After the scan we had a few hours so we went we had some good laughs and amazing french toast!

The scan showed that mom’s tumors are in her neck lymph nodes. There are no visible tumors elsewhere in her body. That’s VERY good news. 10

c 2013 bruceandbarb.blogspot.com


1.1. May

BlogBook

The type of cancer is a neuroendocrince tumor. This is a very rare form of cancer and is only seen in about 1 in every 200,000 cases. Leave it to Barb to get the rare forms. Some of you may recall that years ago while camping in Montana the locals assured us that a bear had not been spotted in that area in 20 years. We left for a morning outing and came back to our tent completely mauled by a black bear! And then there was the time that Grandma and Grandpa (Dad’s parents) used their attic for storage and never once saw a bat. You guessed it. Mom headed up the stairs first only to be greeted half-way down by a bat! So when it comes to the not-so-popular things in life – you can be assured that Mom will find it. That’s what she did in this case. This cancer (abbreviated NET) falls under two classifications. 1) carcinoids and 2)pancreatic. So you can imagine how blessed we were to hear that it is not pancreatic cancer as the survival rate for that is pretty low. We did not get particular survival rates for the NET carcinoid that has taken up residence in moms’ neck but 50-60 % of the patients who survive the first 3 to 5 years will have beaten the disease. So we’re in for a long fight. The treatment will begin on Monday, May 10th with the placement of a subcutaneous port under the skin near the collar bone. This will actually make life a lot more pleasant for mom. This is the port (we’re likening it to a beer-keg tap!) in to which they can put medications and draw her blood. No IV needles for mom. She will being chemotherapy treatment on May 11th. We will be at the hospital most of the day. The chemo will be three days and then wait a week, then three more days, wait a week etc. During this time she will also be receiving radiation treatments 5 days a week for about 3-5 months. Yes, it’s a long haul. This can be an aggressive form of cancer but they feel that they have caught it early enough to attack with full guns and full army-reserves.

We would like you to meet her oncologist and allaround nice guy, Dr. Christopher R. Hake. He is a graduate of the University of Wisconsin – Madison and did his residency and internship at the Medical College of Wisconsin here in Milwaukee. So how are we doing? Well we are very tired from today and we’re in for some very long days. The hospital is about an hours’ drive from here and we’ll be there 5 days a week for the next couple of

c 2013 bruceandbarb.blogspot.com

11


BlogBook

1.1. May

months. she’s still got her sense of humor. Scared is a good word but as I told Mom in the car ride home – we usually gain all of our strength and courage from our fears.

1.1.4

05-07-2010 (2010-05-08 11:11)

Entry by Kurt: Met with the radiologist today. Mom has been very nervous about the radiation and the side affects. The doctor and one of the nurses did a pretty good job of outlining the side affects but more importantly, how they treat those side affects. we got to see the room she will be in to receive radiation. They will make a mask with this high-tech plastic stuff that will be placed over her head and shoulders each time she receives radiation. Feels a little like Star Trek. The weather is pretty depressing here as well. Snow just north of us and cold temps and rain here makes for a dreary day and outlook. But we’re all managing to keep it strong. Mom is in a very fighting mood which is key. Now we just have to get her to gain some weight. THAT’S the hard part. She needs to gain some weight and keep nutrition going in during this entire time. So we’re making sure she eats a lot of proteins and high calorie foods while keeping down the cholesterol and salts. It’s a challenge.

1.1.5

05-10-2010 (2010-05-10 18:16)

entry by Kurt: Long day today. Started out ok but Mom couldn’t eat anything as she prepared for a surgery to put the med-port in. We had amazing doctors and nurses at Waukesha Hospital. We were

all VERY impressed. 12

c 2013 bruceandbarb.blogspot.com


1.1. May

BlogBook

It started in the waiting room but we did not have to wait very long at all. They took mom in after about two minutes of waiting. She weighed in and has not lost weight yet which is critical. We’re actually trying to get her to gain some which she fights because she has done sooooo well at loosing a LOT of weight. But we’re feeding her as much as she can take. after visits with the nurses and the doctor and the anesthesiologist they administered the "knock you on your ass" drug and Dad and I quickly kissed her and told her we loved her as they wheeled her down to the O.R. It’s never easy on either party participating in that ritual but we got through it. Dad and I ventured upstairs to the grill and ordered a chicken salad sandwich. Two sandwiches and 2 coffees came to just under $13.00 so during lunch we agreed that we’ll be packing lunches for us on our longer days. The whole procedure took about an hour and they came and got us. Mom didn’t mind her picture being taken as she was all wrapped up in a cacoon of warm blankets fresh from the "toaster oven".

The two nurses on duty were amazing. They answered all our questions and attended to mom very well. Unfortunately we weren’t able to get pictures of everyone but this is one of her RN, Dawn. Dawn ROCKS and gave us all hugs as we left. Kim wheeled mom out and did an incredible job, too, but we didn’t get a photo of her :-(

The trip home was pretty rough. It takes about 45 minutes and mom was not enjoying the ride at all. She is pretty nauseus and once we got home we were able to get some crackers and some soup broth in to her. We’ll take a photo of the med port on another day. It is pretty amazing and for mom it means no more IV needles! It is a small metal disk placed just under the skin near her right collar bone. Inside there is a tube connected to an artery. There is also a tube outside right now to make her first chemo go c 2013 bruceandbarb.blogspot.com

13


BlogBook

1.1. May

smooth with no pokes! Eventually the outer tube will be removed and in the future they simply insert a needle in the skin directly in to the port. We leave tomorrow morning around 7:00 a.m. to get to the hospital. We will be there most of the day as mom has her first chemo treatment. she’s pretty nervous about it as any of us would be but she is still in a very fighting mood. We all have our moments of tears being shed. We can’t thank all of you enough for your prayers and support and I know you’ll keep them coming during her treatments. Please invite your friends and family to follow her blog. she absolutely lights up when people decide to follow it.

1.1.6

05-11-2010 (2010-05-11 10:57)

We arrived at 8:00 a.m. to the oncology reception area. Here’s mom with Fluffy the Bear. A gift from the grandkids!

They took some blood and then gave her some IV fluids for about an hour. Then 20 minutes of some pre-medication. Then 2 hours of the first chemo medication and then 2 hours of another medication.

The nurses here are wonderful. We’ve had such a positive experience here at Waukesha Memorial Hospital. Here is a picture of Jessica and Sally. Sally is a regular RN on this floor, Jessica is here part-time and spends the rest of the time on the in-patient chemo department. They are both great people. 14

c 2013 bruceandbarb.blogspot.com


1.1. May

1.1.7

BlogBook

05-11-2010 GOOD NEWS DAY (2010-05-11 11:31)

The doctor just came in to see us. Simply put, we were hoping that this was not PNET but only NET cancer and he confirmed it is NOT PNET! That’s very good news. It’s still a merkel-cell cancer of the lymphnodes and the fight is definetly on. But so far she’s doing fine. Wanted to share that bit of good news with everyone. By the way - Mom LOVES reading your comments on the blog!

1.1.8

05-12-2010 (2010-05-12 20:36)

As you an see, mom is in pretty good spirits. No side affects yet but that won’t come right away. She takes frequent walks around the chemo ward and visits with patients. She talked for awhile with a lady that was just receiving her first day of treatment. She was pretty nervous and mom did a great job of relieving some of her first-time fears. Another day of chemo and this one not as long as the other. So the schedule for the chemo is 3 days in a row, every three weeks, for about 3 months. The first day of each cycle will take about 6 hours, the other two will take 3 hours each. When the radiation begins, she will go in 5 days a week for a few hours each. Dad decided to get a jump start on support by having his head completely shaved.

You may be saying, "what hair?" but he did have some in the back that he shaved off. Now father and son look even MORE alike! c 2013 bruceandbarb.blogspot.com

15


BlogBook

1.1. May

Here are some pictures of the other great nurses we met today and of mom receiving her chemo.

16

c 2013 bruceandbarb.blogspot.com


1.1. May

1.1.9

BlogBook

5-15-10 (2010-05-15 11:43)

Today was a milestone on the journey - it was haircut day. So all three of us piled in to the car

and headed to West Bend.

Here’s the before shot.

And here is one with Cindy, the hair stylist. She was a lot of fun! They ALL were. We had a good time talking and telling jokes and a tiny bit of gossip along the way, too!

We took a few during shots and then the great after c 2013 bruceandbarb.blogspot.com

17


1.1. May

BlogBook shots! Mom LOVES the new cut and we all agree she looks GREAT. And now the big unveiling...ladies and gentlemen, give HAIRDOOOOOO..............................

it

up

for

BARB’S

NEW

You probably notice the bruising on the first picture near mom’s collarbone on her right side. That’s where the med-port was put in. She has no pain there anymore, just the bruising which will go away over time. You’ll notice one of the cancer lumps just under her right jawbone on the last picture. that’s one of the tumours. We should see that get smaller very early on in treatment. This was a HUGE step for mom and she pretty apprehensive but she absolutely loves the new look. It’s safe to say she has found a hair dresser she really likes and when her hair grows back, that’s where we’ll be headed. Thanks, Cindy and everyone at A Touch of Class hair salon in West Bend, Wisconsin. They ALL ROCK!!

1.1.10

5-16-2010 (2010-05-16 17:03)

Today has been a slow day. Mom has a few side affects from the first round of chemo. She is very tired and has done a good deal of sleeping. when she’s not sleeping she feels hungry and has a few stomach pains. All of these symptoms are expected and we have some things on hand to help her with that. the biggest fear, nauseu, has not shown it’s evil face around here yet and we’re trying very hard not to let that happen. Terri and Ryan stopped by for a great visit. Terri is a great artist and has drawn an idea that Mom had. Mom wanted a logo to print on hats and buttons and things. so mom came up with the idea and Terri drew it on her hat. We’ll also be getting them done in pins and maybe a few t-shirts as well. This is a photo of the hand drawn image. 18

c 2013 bruceandbarb.blogspot.com


1.1. May

1.1.11

BlogBook

(2010-05-17 13:44)

Entry by Kurt: We got to the doctor very early this morning. Mom got a shot to help keep her white blood cell counts high. She had a mask taken of her today which she will wear every time they administer the radiation therapy. They are mapping out the exact points where the tumors are and the mask helps them keep the same spot. Today it took about 45 minutes but each radiation treatment will only take about 15 minutes.

c 2013 bruceandbarb.blogspot.com

19


BlogBook

1.1. May

This is the head mask she’ll be wearing on the table and the special radiation tube she’ll be in during each treatment.

1.1.12

May 25, 2010 (2010-05-25 17:09)

Entry by Kurt: We started the day again at 6:00 a.m. with a ride to Waukesha Memorial Hospital for yet another surgical procedure. This time they prepared mom for the feeding tube that we will use in the event that radiation causes difficulty in swallowing. It is called a percutaneous endoscopic gastrostomy (PEG) tube. Feeding tubes are not painful and are not easily visible when wearing normal clothes. When not in use, they can simple be taped to the patients stomach to prevent them from moving around under clothing.

PEG tubes are placed with the aid of an endoscope, the scope going down the throat to assist in guiding the placement of the tube through the wall of the stomach. Once the scope is in the stomach the doctor first checks for any signs of bleeding or ulcers. The doctor reports that all is great with mom’s stomach. Then a light is turned on inside and is pressed against the outer wall of the stomach up against the abdomen. the light is bright enough for the doctor 20

c 2013 bruceandbarb.blogspot.com


1.1. May

BlogBook

to see it through the adbomen, and a small incision is then made. The surgery is simple and involves little risk or discomfort. The procedure takes about 20 minutes. The PEG tube extends from the interior of the stomach to outside the body through a small incision only slightly larger than the tube itself in the abdominal wall. The tube is prevented from coming out of the stomach by a very small balloon at the end of the tube which is inflated within the stomach after insertion. Removal of the tube involves deflating the balloon section of the tube allowing it to slip easily from the stomach. About three inches of tubing will protrude from the incision area. Initially, there may be some discomfort while getting used to using the system, from gas or air, or from adjusting to the liquid foods themselves.

I’ve included a diagram and a photo. there’s also a photo of the PEG tube in a person - no this isn’t Mom hee hee hee. It’s a clinic photo.

c 2013 bruceandbarb.blogspot.com

21


BlogBook

1.1. May

Mom is in a lot of pain this afternoon and she has some medication to help with that. She’s an amazingly strong woman though. I had a little fun by putting on some scrubs, a stethascope and mask and taking mom’s pulse. It made her smile and that’s all that matters.

Dad is hanging in there as well. At times the information shared is a little overwhelming and hard to remember but that’s why I’m here. Mom hopes that this blog will help people - maybe someone you know is going through or about to go through treatment and would like to know that someone is out there who understands. mom’s a trooper. Even in her pain she is always lifting people’s spirits, checking in on how they are doing, and she remembers to hug and thank EVERY nurse and doctor that is caring for her.

1.1.13

5-25-010 second entry (2010-05-25 22:25)

Entry by Kurt: I think it’s safe to say that I will be making most of these entries for mom. It is 10:25 p.m. and we’re all pretty tired. Mom has been sitting in a recliner all day and we discovered about an hour ago that that probably was not good for her particular case. She’s been off any blood thinners for 5 days but blood thinners (including baby aspirin) will stay in your system for 7 to ten days. So...that 22

c 2013 bruceandbarb.blogspot.com


1.1. May

BlogBook

means that bleeding is more prevalent. And that was the case. Went through about a box of 4 inch gauze pads but once I got her laying down everything slowed down. Talked to the doctor on the phone and everything is fine. We’ll keep an eye on her through-out the night to make sure it is healing well. Now - for those of you who know strong-willed Barbara. here’s a story you might not believe. This afternoon Mom declared the schedule for tomorrow which would include my taking dad to the bank and a few errands and grocery shopping. Mom proclaimed she will be fine. So tonight, while I’m pretty much playing the doctor role - I looked at mom and said, "it’s time that I start making a few decisions around here and I’m telling you that we will not leave you alone tomorrow. The errands can wait a day"...now...for those of you who know Barbara - I’ll give you a few minutes to create in your minds what you suppose happened next.... .... .... .... believe it or not - she said, "you are the boss". :-) I think I will wear my doctor scrubs more often. hee hee hee Thank you to everyone for your prayers. Please pray for a quick healing of the PEG tube so we can move forward with treatment and get mom through the difficult months of June and July. We love you all!

1.1.14

5-27-2010 (2010-05-27 20:06)

The feeding tube is healing very nicely. It’s been a pretty painful ordeal but that’s because she pulled a rib muscle on the same side and just a few inches from where the tube goes in. the tube isn’t painful it’s just the mental picture and the whole "this is freaky" ness of the whole ordeal. It’s weird to see a tube sticking out of you and everytime i flush it with water (4 times a day) she doesn’t feel it but it kind of freaks her out a bit! the hardest part was getting the tube turned. We are suppose to give it a whole turn everyday. You can imagine the anxiety over THAT one. But we did it. I actually did it twice today but she doesn’t know that until she reads this blog. LOVE YA MOM!! So tomorrow afternoon is the dry-run for the radiation. She’ll put on the pretty, stylish and fashionably appropriate white fence-looking material over her head, neck and shoulders and then they will make sure the machine is programmed correctly to get the exact spots. It kind of reminds me of the whole Family Guy episode when Luke is an eye surgeon and is being prompted to use the force instead of the lazer - but this will have better outcomes. It is pretty Star-Trek-like though. amazing things they are doing with technology and healing.

1.1.15

05-28-2010 (2010-05-28 21:02)

Today was a good realty-check day. Not that we’ve needed it but it’s good to have todays’ experience in the "bank" when we need to pull it out for a reminder. We went to radiology today for a dry-run of the treatment mom will start on tuesday. we met a wonderful lady in the waiting room. She has a beautiful smile and warming spirit. We didn’t even catch her name but we all talked. She has a tumor in her brain and went through 30 radiation and 30 chemo treatments. The tumor is still there and now she’s in a study group in Chicago. She says she has about a year left. What a trip to humility - this lady knows she has about a year left on this planet. And yet she was smiling - was talking with us like we were old friends - and she was encourating mom. It reminds me of the old saying, "I was mad because I had no shoes - and then I meant a man who had no feet". Perspective - we all need it from time to time. So here is Mom and Dad in the waiting room at radiology. They have many books and resources c 2013 bruceandbarb.blogspot.com

23


BlogBook

1.2. June

you can borrow. They had a beautiful basket of scarfs and head wraps that were free for the taking so we hunted around and found a beautiful colored one for mom. we’ll get pictures of that later.

As you can see, Mom is cracking a smile. I promised her that every single day I would make her laugh about something. Not sure what I did to get this one but does it matter? Just as long as we all crack a smile once a day. The PEG tube looks great. It causes a lot of anxiety for mom when I have to clean it for her and turn it. the turning today was nothing. She’s a trooper. The cleaning was a little uncomfortable but with Dad as my assistant we did a pretty good job of it. She’s resting comfortably now. This weekend is a time of rest and some light exercise for mom. The weather here is supposed to be beautiful so hopefully she can get outside and get some fresh air. We hope that all of you have a wonderfully safe holiday. Don’t forget about all of those who sacrificed everything so that we may have all that we do. And God Bless our Troops.

1.2 1.2.1

June June 2, 2010 (2010-06-02 19:32)

It has been one heck of a week so far. It started on Tuesday with the second round of chemo and the first day of radiation. Dad was having a pretty horrible day in the morning so we decided it was best that he stay home and get some rest. Reluctantly he agreed and ended up sleeping a good portion of the day. He needed the rest. So Mom and I were off to the doctors, leaving here around 8:15 a.m. and headed, once again, to Waukesha Memorial Hospital. The waiting room was pretty packed with people and we were able to get in and get a window seat. they have small rooms where they administer the treatments and some are along the inside wall and others have an outside view. We cross our fingers each time for the outside view and it worked that day, too. Getting mom settled in was good and then they had to put the needle in the med-port. The med-port had been in for almost a month but had not been used. Healing has gone pretty slowly due in part to mom’s fibromyalgia and some blood thinners she was on. We got mom some lydocaine to the numb the area and the needle went in with not much difficulty and only a little bit of pain. But the pump kept stopping and stating there was an occlusion in the line but no one could see it. We feared the med-port might not be acting propertly so they flushed it and it worked, but a little slower than we want. After the first 3 hour treatment we decided to give mom a brief rest from the chemo and head down to radiation. The morning as way off schedule and things were running pretty late. We got mom down to radiation and - well - it wasn’t pretty. 24

c 2013 bruceandbarb.blogspot.com


1.2. June

BlogBook

The new mask is a very tight fit and it has to be - but it’s not fun getting it on and locked (yes, I said LOCKED) down in to place. They put it down pretty tight and it hurt...a lot. And it was freaky. And we were nervous. and it was not a fun place to be. But she got through it with only a few tears. We then headed back upstairs where we continued to have issues with the med-port tube. They finally decided it was the needle and IV so they took it out - and put in a new one. WithOUT the lydocaine. THAT one hurt. Poor was had been poked, squished, pulled, stretched, caged, locked down, tubed, drugged, and now poked again. she also pulled a rib muscle right near the PEG tube in her stomach AND the PEG tube was still healing and kinda hurt like heck. Things were getting tough so the GREAT Doctor Hake ordered some pretty heavy doses of a relaxer and mom went to beddy-by for the rest of the afternoon. She was in a very happy place but when she came around she was not exactly sure where she was. Fortunately I was right there to give her a hard time, crack a few jokes, and keep her mind off the fact that we had been there almost TEN hours. We finally headed for home. But once we got home it was time to lay down and let Dr. Kurt go to work again. We changed dressing, flushed and cleaned the wound, flushed the PEG tube with water, re-dressed the wound, turned the PEG tube (THAT’S never fun but it’s not painful - it’s just...REALLY FREAKY!). Then I gave mom 2 more happy pills and she slept the rest of the night. That brought us to today. Dad was up to going and we headed back to the hospital for more chemo and

day 2 of radiation. Today it went a LOT better. No pokes, not nuch stretching, and only minor lock-down for radiation. It went a LOT smoother than the day before. Here are some

pictures of two more of the amazing nurses. They do a great job of checking in with you and you never have to wait for them to come get you when the first bag of chemo is empty - they are always right there! They are angels walking among us. We brought a lunch with us and here’s a photo of dad unwrapping the sandwiches c 2013 bruceandbarb.blogspot.com

25


BlogBook we made the night before.

1.2. June We all had a bite to eat before mom took another nap.

Then a big surprise at night Terri and one of her daughters, Crystal, came by to take Dad out to McDonald’s for dinner. Mom and I stayed home and had some scrambled egg sandwiches. Crystal got to play nurse and took mom’s blood pressure and listened to her heart. They had a great time. It’s tough seeing your grandma like this and knowing she has cancer gets us all a little emotional. But it was a GREAT visit and Crystal was a true blessing to come visit. So it has been a hard week so far. We have another day of it tomorrow and then radiation on Friday. Next week we’re at the hospital five days a week for radiation. The effects of chemo are slowly showing their evil little faces. Mom’s hair is starting to come out and is getting very thin. We are actually pretty excited to showcase her new scarf she’ll wear! She has had a little chemo-fog today. For years people undergoing cancer treatment have described their minds as being in a fog unable to concentrate and remember details about their everyday lives. Research now shows that what these people are experiencing is called mild cognitive impairment the loss of the ability to remember certain things, learn new skills and complete certain tasks. The cause of mild cognitive impairment during cancer treatment still isn’t clear, nor is it clear how often it happens or what may trigger it. Doctors aren’t sure what they can do about it. In 2007 the New York Times printed a series of articles helping to break the chemo-brain theory. Years ago it was all considered to be, well, "in their head". It was thought that because of the brain blood barrier in the brain that the harmful chemicals of chemo did not enter the brain but now it is considered more likely that some of them slip past and cause temporary issues. These are all temporary and as long as you know about it it is easy enough to handle. Through it all, Mom and Dad are still standing by each other, still holding hands, and still in love. This September they celebrate 49 years and are bound and determined to make it to the 50th and beyond.

26

c 2013 bruceandbarb.blogspot.com


1.2. June

BlogBook

I think they’ll do it - but I’m a little biased!

1.2.2

June 3, 2010 (2010-06-03 23:57)

Today was another day at the hospital and the end of day 6 of chemo. It went well and the day was made a little easier with a wonderful visit by Jayden. He stayed with us all day today and helped mom and dad to laugh a lot. We shared stories and talked. Nurse Lisa said mom’s white blood cell count is still pretty high which is good news. Her liver enzymes are fine and kidney function is great. Everything is moving a long pretty smoothly. The radiation treatment was less stressful today. The nurses and assistants were very kind and took their time to make sure the mask was as comfortable as possible. Today was the great unveiling of mom’s hats. We had two to unveil today and the pictures are below. I think I’ll let the pictures tell the story about how mom is doing and as you can see by her eyes, she is a little tired but VERY strong. Dad had an appointment with a dermatologist today and I was in the room with him when the doctor gave us the news that they needed to do a biopsy on a mark on his back as it appears to be a skin cancer. we’ll have the biopsy results back in a week but now I add dad to the list of people in the house who needs a bandage changed everyday :-) that’s ok - they have done so much for me in the past that I am honored to be available to help them now. Enjoy the pictures and thank you to EVERYone for your wonderful messages in emails, cards, letters, and here on the comments of the blog. Please rest assured that each one is read and great memories are shared between mom and dad when ANY of your names are mentioned. They both truly have an amazing circle of friends and family and your prayers, thoughts and support are an amazing source of strength for all of us. c 2013 bruceandbarb.blogspot.com

27


BlogBook

1.2. June

Some of you may not know this but in years past I was a crisis intervention counselor and teen counselor. I spent many years with both teens and adults through illness, disease and even passing. What amazes me is that even though I hurt deeply for each and every one of them - I was still able to leave to my home and retreat away from those issues. I hope I never forgot that even though I left their presence - they still had to deal with the issues every waking moment of every single day. It is in remembering that fact that I am now even more touched by your comments each day. You are all truly walking this journey with Mom and Dad. You are all a true blessing. Enjoy the photos.

28

c 2013 bruceandbarb.blogspot.com


1.2. June

c 2013 bruceandbarb.blogspot.com

BlogBook

29


BlogBook

30

1.2. June

c 2013 bruceandbarb.blogspot.com


1.2. June

1.2.3

BlogBook

June 10, 2010 (2010-06-10 23:03)

It’s been a long week. No one warned us that the first sign that you are starting to lose your hair would be pain. The top of mom’s head was very painful to the touch and over the past 5 days she has lost a significant amount of hair. Like most people it’s been pretty emotional but we are reminding one another that it will grow back and this is a temporary issue. She has some beautiful hats to wear and around the house she is comfortable enough not to wear anything. As she said a week ago, “all vanity goes aside at times like these”. Please keep in mind that some of these entries may be a little graphic but it is Mom’s hope that someone out there may be able to benefit from this information. There’s really no way to tell people EVERYthing that will happen to them but information sharing is the most powerful tool we have and that’s our goal. Tomorrow morning we’ll find out the results of the biopsy done on a small patch of skin on Dad’s back. We’re hoping that we won’t hear the word melanoma’. We’ll get up early in the morning and take him to the doctor by 8:00 and then mom’s radiation later in the day. We had a GREAT victory today during radiation. Mom was finally able to handle the radiation mask and table without the assistance of medication. We’re all very proud of her. It has been a pretty emotionally difficult journey to date but mom continues to handle it like a pro. Eating has taken a different turn this week. The taste buds are beginning to go on strike and issuing their demands. It’s been a challenge with some foods to even get the hand to bring it to the mouth. So we keep adjusting the diet. Mom knows that even if she does not like the taste or the smell, as long as she can keep it down, she has to keep eating. We’ve been experimenting with energy and nutrition shakes this week and have found that by freezing large banana chunks, they make great ice cubes in shakes. We had one large frozen banana, a cup of almond milk, three tablespoons of vanilla yogurt and a ¼ cup of frozen blueberries. Great way to get some energy and feels good on the mouth and throat. We’ll be adding some protein powder to give it some more nutritional value. The PEG Tube is healing GREAT. Mom gets to take a shower this weekend because the PEG tube area has finally healed. We spent 3 – 4 times a day washing the area with a syringe of water and hydrogen peroxide, then using q-tips and gauze, gently keeping the area dry and clean. It’s been a heck of a task but the doctor said it looks fantastic and he’s very pleased and proud of the way we’ve been keeping c 2013 bruceandbarb.blogspot.com

31


BlogBook

1.2. June

up with it. We flush the tube with about 100 cc’s of water four times a day to keep it open and flowing correctly. Mom doesn’t feel it going in which is amazing to us. I try not to cut jokes during the process because sometimes things come back up the tube and that can really be an issue for anyone a little on the queasy side of life! All in all it’s been a good week. Mom spent the weekend sleeping a lot from the chemo but now we have a break for two more weeks before we have another round of chemo. So now it’s just daily trips to the hospital for radiation. Five days a week. Mom and Dad were both up to going by themselves the past two days which has been a nice break for Kurt. It also helps mom stay alert and keep focusing on things like the wonderful job of being co-pilot that she does when Dad drives. Thanks to everyone for your continued support, prayers and love. It really is the thing that keeps us all going.

1.2.4

June 14, 2010 (2010-06-14 16:16)

Life is interesting no matter how you define or label your situation. Our lives change more often than BP’s strategies to clean up the Gulf. The problem is that the more it changes the more we are resistant to that change. We need to welcome change in all its forms in order to embrace life and continue moving forward with the surrounding rhythm of the planet. Otherwise we hang out at the stagnant waters with other grumpy people. Marcus Aurelius wrote that "at the moment of change, a man’s soul takes flight". Change also makes us realize that someday we will leave all that we have worked (or begged) for. At the moment of chance we can not fear what others will think or say and we must be "...ready and welcome it when it is (y)our turn to experience change. For there is nothing like it to heighten your sensibilities and elevate your mind".

Cancer is change. It is change we would rather not face but it happens even in spite of ourselves. What matters is how we face it - with what attitude we raise our shields and swords in battle. Charles Stanley once wrote that "we are in charge of our attitudes" and although we would LOVE to blame our attitudes on other people and situations the bottom line is that we are responsible for them. It is tough being a son and watching your mom go through this change in life. The temporary changes that it brings to the body are so difficult but the spirit and heart changes are also happening and 32

c 2013 bruceandbarb.blogspot.com


1.2. June

BlogBook

challenging her everyday to decide how she is going to face it. IN and THROUGH this journey she will continue to change. Her smile may get lazy somedays, she will sleep during the brightest of summer days, and sadness may overcome her heart and mind - but you know what MY mom still does? She thanks people. In the midst of all of this...not only her cancer but watching her husband, the love of her life, fade slowly in to the dusk of Alzheimers - she still manages to say, ’Thank you’.

If you know Barb the word humility may not come immediately to mind. She speaks what she thinks most of the time and she’s not apologetic for it, that’s for sure. (perhaps more of us should be that way). But there is still a wonderful stream of humility that pulses through her soul. I’ve seen it. And it reminds me that although change WILL come - in whatever form - take a moment to be thankful for what you have today.

1.2.5

June 21, 2010 (2010-06-21 19:15)

It has been a few days but Mom checks all your comments everyday. thank you so much for leaving them and for taking the time to do that. It truly does mean so much. It has been a rough week. Mom is not able to eat much food. The smells of food make her a little edgy and her taste buds are making everything taste like metal. There is not much motivation to eat when it tastes and feels like you are chewing on tin foil. We are thanking God that her doctor had the hindsite and wisdom to have the PEG tube (feeding tube) put in right away. We are up to 2 tube feedings a day now. She can still tolerate oatmeal and has that twice a day. This week begins another round of chemo. We are still going 5 days a week to radiation but now we have the chemo on Tuesday, Wednesday and Thursday to deal with. We are anticipating a tiring week and weekend coming up. It’s nice to know kind of what to expect at this point although cancer treatment always has a few surprises and tricks up its’ sleeve when you least expect it. We had a nice Father’s Day with my sister Terri and her daughter Crystal stopping

by. c 2013 bruceandbarb.blogspot.com

She also had her boyfriend, Ryan with her. 33


BlogBook

1.2. June

He is a very nice guy and dad enjoys talking with him a lot. From Left to Right that’s Mom, Dad, Terri, Ryan and Crystal. Here’s a great one of Grandpa Bruce and Crystal.

Mom has been enjoying weekly phone calls from her brother, Uncle Bob, in Florida. He calls every weekend to check up on his little sister. It is truly interesting how people come in to our lives. Some people stay for a short period of time while others linger and then a very few will remain throughout the autumn seasons of life. We have met some really great people who are traveling a very similar road through chemo and radiation. It was such a blessing to meet Cheryl and her husband, Terry (I hope I spelled those right!) in radiation. She is about at the halfway point of treatment which involves more surgery for her. Her smile and personality are amazing. she also has some GREAT tips for dealing with things like the burn from radiation. She brought her daughter and her daughter’s best friend in the other day but my apologies to them for not remembering their names. I think I was to busy looking at the fish in the fish tank that morning. So we’re off and running tomorrow. We have our "luggage" all prepared for the week. We bring an assortment of things to make the long treatments a little bit more comfortable. And tonight is Dad’s job of making sandwiches for lunches. I’ll be bringing the equipment to give mom some of the food feeding.

Here’s a picture of the food I give her. Luckily she can’t taste it. If it smells anything like it tastes there’s no way ANYone would willingly drink this stuff. But it’s full of great proteins and calories and nutrition to keep her healthy. We also bring along two important friends with us. Fluffy and Jamaica. Fluffy is a gift from the grandkids, Stephen, Nicole, Crystal, Ryan and Kayla. Jamaica is a gift from the hospital. 34

c 2013 bruceandbarb.blogspot.com


1.2. June

BlogBook

We think the two are now dating but we don’t mention much. For some reason every time we ask them they don’t say a word about it. Maybe they are shy. Again a HUGE thank you to everyone for your comments. PLEASE know they are being read by Mom and by Dad. There are up days and there are down days and this week during her down days it was nice to know that people are praying, and thinking, and reaching out. It is greatly appreciated and is not going un-noticed at all. I have often said, and will probably make reference to it again and again, that every one we come in to contact with becomes an important thread in the fabric of who we are. Whether for a fleeting moment or a lifetime - we are who we are today, at this moment, due in part to the people and experiences that have been added to the quilt of our individual life. We are truly blessed.

1.2.6

June 26, 2010 (2010-06-26 11:35)

If you knew that tomorrow was going to be a horrible day, what would your response be like today? Mom woke up this morning and the effects of radiation are now getting worse. she is having difficulty talking today and swallowing. Nutrition is now being done almost 100 % through the PEG tube. She is able to sip on a shake I made her but that’s not going down well. So what exactly is happening to her at this point? Radiation kills fast multiplying cells like tumor cells. But there are some normal tissues of the body, like the mucosa of the mouth and throat, which also have fast multiplying cells. These cells are also prone to more damage with radiation. The damaged cells cannot be replaced soon enough by the body and rawness develops in the mouth and throat leading to problems in swallowing. This is only multiplied when you are receiving chemo treatments at the same time. The skin begins to get brown at first, almost like a rich tan. But it itches and of course you aren’t suppose to scratch it. Eventually the skin on the neck and throat gets more red and it is apparent that a burn is taking place. So back to my original question. Have you thought about what your reaction would be if you knew tomorrow was going to be horrible? A lot of people I am sure would say that you need to change the outcome of tomorrow but what if you can not. No matter what you do today, tomorrow is going to be a bad day. We learn in some therapy treatments that you first develop an immediate thought, followed by feelings and then followed by a behavior. So the initial thought for many would be, "Oh sh**". The feelings would no doubt include dread, some sadness, frustration, and an overall feeling of helplessness. But what’s important here is the behavior that comes out of these thoughts and feelings. The thought always comes first followed by those feelings, but it’s the impending behavior that is the important thing to focus on. What will our behavior be like today with the knowledge that tomorrow will, well, bite? What will be our behavior tomorrow while the day comes crashing in around us? I am proud of mom for her behaviors through this. Yes, there are some really rough times and a deluge of thoughts and emotions during this journey. But ultimately she is still in charge of her own attitude and our attitude is what drives our behavior at the moment. Mom knows this will get worse. She knew c 2013 bruceandbarb.blogspot.com

35


BlogBook

1.2. June

that the involuntary act of swallowing and making saliva was suddenly going to come to screaming stop. But she’s trying. Today she said she felt like crying but was trying really hard not to. I told her it’s ok to cry, it doesn’t make you weak and sometimes it can give you strength. She knows it’s not a sign of weakness but sometimes the behavior that comes out includes a really good cry. The composer Carol Hall, as featured on the 1970’s very first Free To Be You and Me album wrote a song called, "It’s Alright To Cry". Rosey Grier actually sang the song on the album. Check out the video on youtube. http://www.youtube.com/watch?v=KqFuhCfb3Fk It’s all right to cry Crying gets the sad out of you It’s all right to cry It might make you feel better Raindrops from your eyes Washing all the mad out of you Raindrops from your eyes It’s gonna make you feel better So Mom I know you are reading this cause you like to make sure I don’t talk about things you don’t want advertise! hee hee hee Just know that its ok to feel whatever you are feeling. YOU are the one walking this journey - just know that you do not walk it alone. We love you.

1.2.7

June 27, 2010 (2010-06-27 21:38)

It’s been a hard weekend. Mom’s throat is burning and hurts very bad. We’ll be talking to the doctor in the morning to see what else, if anything, they can give her for the pain. What’s your breaking point? at what point do you finally say, "enough"? What would push you to the ultimate edge that causes you to surrender? No one really knows that answer until they are walking down that path. Some people walk to the edge while others crawl, hands callused, body beaten and bruised. Jesus Christ walked to the edge and he had a breaking point. "My God, my God, why have you foresaken me?" is pretty much a breaking point...the edge of the preverbial cliff. He KNEW he had to walk whatever path was placed in front of him. And so it is with us - we walk, sometimes crawl, sometimes we are pushed. But we continue down the path that we are called upon not really knowing where the edge is or if we’ll ever get there. Some people arrive quickly while others never arrive and they see yet another beautiful sunrise. Some people beg for the edge to arrive quickly so they can jump while others spend every step hoping it doesn’t. when I was a young child we lived for awhile in the mountains in Montana. The school house we attended was about 1/4 mile down the road from where we lived. It was a large building because at the turn of the 1900’s the town was booming with miners and loggers and their kids. when the mining dried up, the town did as well. When I was there we had 13 kids in grades 1 through 8 and I was the only 5th grader. We all shared one teacher. My older brother started a community volleyball game in the gymnasium and I would attend for awhile but I had to be home by a certain time. I fought my curfew so hard but my parents wouldn’t budge. I didn’t care about being home early - what I really wanted was someone to walk me home. You see, in the mountains at that time, down that narrow two-lane highway that plowed through the center of the one-bar, one-gas station town; it was dark. we didn’t have street lights. It was REALLY dark. So I would set out on my way home. I would walk right down the center of the highway to avoid anything jumping out from the side of the road. Once in awhile a freightened deer or small furry animal would scare the crap outta me by dashing across the road. But you know what I did? I prayed. I would 36

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

say this little prayer and I would time it with my steps. Each word was a step. "Lord guide my feet now step by step". I always made it home. Was there a point when Mary looked at her son and didn’t recognize his beaten down body? Was there a point when she gazed upon his face and her heart said, "he is already gone"? If Jesus had a mirror would he have had a hard time recognizing that energenic, charismatic preacher or would he have also seen a beaten-down man? This is a tough time for us. For those who are not watching mom on a daily basis it is easier. You read, you pray, you feel pain and you care deeply. But when you gaze in to the eyes of someone who suddenly wants the edge to arrive - it looks dark. There seems to be no light. You KNOW there is light and you KNOW that the future will arrive brighter than today and you’ll be fine but wow - getting there sure doesn’t feel worth it, does it? Thank God that Jesus decided it was worth it. And thank God that so many other people have said it is worth it. I know Mom says it is worth it but sometimes, when that last thorn has been thrust in to your brow, when you just can’t tolerate one more hit of the whip, you’ll try anything not to face the nails in your hands. Mom we are proud of you. You can fight this fight and we know you are walking down a dark and lonely road. But we all want you to hear our foot steps keeping perfect rhythm with yours as we all chant, "Lord guide our feet now, step by step".

1.3 1.3.1

July July 1, 2010 (2010-07-01 12:37)

The drive takes us first past an alpaca farm and we look everyday to see how many are there and if they have recently received a haircut. We wonder about the people in the house and how much of their lives are taken up by the care for the alpacas. We wonder if we’ll see them at the County or State Fair were we to go to these events. Not this year – maybe next year. Several miles down the road, over a railroad track and pass an obscure little bar in the middle of nowhere, we pass by a typical Wisconsin farm. Grain silos, red barn, and black and white speckled cows in the field. The smell of manure seems to always catch us and there really is no way to avoid it. You can almost see it looking down the road waiting for someone to pass by. Each time, dad and I will reminisce about the days on the ranch in Montana and how that smell is not necessarily as vile to some of us as it may be to so many other people. The hills roll back and forth during our journey and we pass by young corn stretching it’s neck towards the heavens as if competing with one another to see who can get there first – totally unaware of their impending doom. Corn on the east side of the road and soy beans nestled closely to the ground on the west side of the road. There’s another farm, and then another, then a small sub-division where a farm once stood, it’s old barn half fallen in the middle of the field as if telling us that this is the place to live for that old Wisconsin farm feeling&we don’t buy it but it sure makes for a pretty pictures. One of the farms has an old car in the driveway and every day Dad mentions it and points it out to all of us. We wonder what type it is but it comes and goes so fast that we just don’t know. Perhaps one day we’ll remember to pull over and look at it but we never seem to remember that in time. We all wave at the veterinary’s office where Maxwell used to go for his checkups and his occasional overnight stays. His presence is still felt even though he’s been gone for awhile now. As we approach the town of Brookfield we are welcomed by the grand master of commerce – the big cheese of merchandising – the royal highness of retail – Wal-Mart. It appears on the horizon as we round the bend with its parking lot always full, people coming and going with bags of this and that and no doubt lots of things that will never be used again. c 2013 bruceandbarb.blogspot.com

37


BlogBook

1.3. July

We take a detour around the small Waukesha airport. One day we rounded the bend just as a small private jet came in for a landing. It went right over our car and we swear we could have reached out and touched the bottom of it. How lucky we were that day to be right there at that spot. It’s not a very busy airport. Perhaps we should have bought a lottery ticket that day. We snake our way through the neighborhoods, past the elementary school and that cute house that’s been for sale forever – take a left then the next right and there is the hospital. We find parking close to the doors thanks to the handicapped parking placard we have. We tried parking far away one day for exercise but quickly realized that the sun combined with even a small amount of walking is not a good combination when you are going through what mom’s going through. So we park close. The welcome desk greets us with a smile and a cheery, “good morning” as we walk past it to the elevators. Going down, please. We go down one level and walk through the doors of oncology, right past physical therapy and the prostate labs which always makes Dad and I just a tad bit leery. As if someone’s going to jump out and scream, “it’s your turn!!”. The receptionist in oncology always has a smile and if mom looks down or just not right she will always take the time to ask what’s wrong. Then she’ll make a call to let the team know how she’s feeling today. Paul is an amazing person. Paul stands at least 6, 2”. A gentle giant. A man you don’t want to get in a fight with but as calm, gentle, and caring as they come. Mom feels tremendously safe in his care and we know he’s watching mom the entire time. He comes to the waiting room and grabs mom by the hand and we watch as they walk down the hall. Dad and I look through magazines or watch the fish. We have our conversations, many of them repeats from the day before but conversation nonetheless. She lays on the table with the assistance of Paul and his team. A small head rest and a triangle shaped slab of foam go under her knees. They loop a small, round, blue piece of steel and rubber around her feet and hands. This helps keep her perfectly still for the radiation. A rubber mouth guard goes in to protect her teeth and gums from the radiation. Then the mask. A plastic, mesh shaped like her head, is locked down in to place. Movement is impossible and mom works very hard to fend off claustrophobia. The room is cleared of all staff members and Paul takes his place with everyone else in a control room watching mom. Paul never takes an eye off of mom. Three cameras capture her from different angles and he can see the slightest finger wave. They have a system set up should she feel anxious or feels a cough coming on. Meanwhile, dad enjoys his daily graham cracker and cup of coffee in the waiting room. I look through magazines to distract my mind from all the things happening – mom’s treatments and dad’s mind. Fifteen minutes later mom walks out, takes dad’s hand and together we retrace the steps we took just twenty minutes earlier. Past physical therapy, past the “butt doctor” as my mom likes to call them, in the elevator and up to reception. A stop at the restroom doesn’t make the trip complete. When we get home its feeding time again for everyone – mom first while dad makes a lunch for himself. I’ll get something, sometime&not sure what or when. In my own time. Tomorrow this story will rewind and start playing again. We’ll have the weekend off and since Monday is a holiday, mom will have 3 days off of treatments. Which is nice but it also sets us back a day. The routine goes on – I think I’ll make cookies this weekend.

1.3.2

July 4, 2010 (2010-07-04 10:48)

What a couple of days we have had around here. I’ll start this on a positive note - as i type this I’m sitting in the dining room watching dad AND mom make chocolate chip cookies! So that should tell you that this story has a happy ending. :-) On Thursday night mom went to lie down and immediately went into AFIB (atrial firbrillation). Her heart was beating rapidly and irregularly, she was sweating and clammy to the touch and was feeling dizzy and nauseus. I took her blood pressure and it was all over the place so immediately called 911. They transported her to St Joseph’s hospital in West Bend, Wisconsin which is only ten minutes from 38

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

where we live. They were able to stabilize her by around 2:00 a.m. Around 3:30 as she drifted to sleep I took dad back home to get him cleaned up and rested. We both slept for about 2 hours and then returned to the hospital. They released mom and we drove to Waukesha for her radiation treatment. Amazingly enough her radiology doctor was standing by waiting to see mom and stayed with her during the entire treatment! She also got hugs and prayers from people in radiology and oncology and the cardiologist’s office. they all knew what she went through that night and were all concerned. What a wonderful blessing. So she is doing fine today. As I finish this she is in her chair resting now. She’s had her morning food and I’ll be giving her lunch food in just a little bit. Unfortunately she has to watch dad and I enjoy the cookies today but she knows that soon enough she’ll be well enough to eat foods again. I’m very proud of her - she’s still swallowing water which she says feels like swallowing chards of glass. But she knows that if she stops using those muscles she will loose them and then have to go to rehab to relearn how to do it. Dad is doing ok. I think the stress is definetly weighing on him but he tries to get through each day. We come up with different ways to help him remember short term tasks. So I won’t get all philosophical in this note, hee hee. I’m to tired for that right now.

1.3.3

July 6, 2010 GREAT NEWS (2010-07-06 16:27)

Mom had another round of radiation today and then we spent time with Dr. Hake the Oncologist. (Yes,

Terri, he’s the cute doctor!) He said he’s very happy with her progress and that next week will be the last week of chemotherapy! Only 8 more radiation treatments to go and then she has time off to recupirate. We have already scheduled a follow-up scan on August 25th to take a look around and make sure all that nasty cancer is outta there! Mom is flying high today and this was such a needed dose of energy and encouragement. We can expect continued side-effects including more difficulty swallowing and redness in the neck. Fatigue will be a huge factor the next coming weeks. She will still require 6 tube feedings a day but we’re closing in on the final stretch! What a trip this has been. So let’s keep the prayers and support going because she has said time and time again that without it - she’s not sure if she would have made it this far. Love to everyone and if you get a chance, please send her a note either by leaving a comment here or emailing me kurtdanskin@officeremotecontrol.com and let her know you’re cheering her on to the finish line!! c 2013 bruceandbarb.blogspot.com

39


BlogBook

1.3.4

1.3. July

July 9, 2010 (2010-07-09 11:54)

Another visit and now only 5 more radiation treatments to go. mom’s neck is looking very red, first glance and one would think it’s incredibly painful. It’s not as painful as it looks on the outside - it’s the pain on the inside that matters. The outside of the neck will continue getting redder and looking more and more like a burn. It itches but mom’s been great and hasn’t scratched - she’ll fan it and we put cream on it every single day, several times a day. We pretty much have our routine down. Mom and Dad together are able to give mom her morning food through the tube. 80 cc’s of water, followed by 2 cups of nutritional supplement (80 cc’s at a time) in to the tube. Followed by 80 more cc’s of water. that’s pretty much it. Then around noon I crush all of the medications in to a fine powder, mix it with water and set that aside. Get a container of fresh water to flush the tube well, and 2 more cans of ’food’...water, half of the food, medications, water, rest of the food, water...check the tube to make sure its clear. reverse the tube flow for a few seconds - flush with more water. clean the end of the tube - put the stopper on, clamp it, and it’s done. the medications take affect pretty quickly. If pain pills are involved like they are today she is out within 30 minutes. She is feeling very tired and she doesn’t like that. who would. I spend a great deal of my time resting because of my disability but i’m used to it. Mom - she’s not used to that. she is always up in the morning around 6:00, doing housework, running errands, cooking food, taking walks...now she does none of that except that waking up part. But that’s ok - the doctors and nurses say it’s normal and she’ll be feeling pretty fatigued in the next couple of weeks. But it’s almost at the finish line...light at the end of the tunnel. Next week is the last week of chemotherapy. Tuesday will be the longest day, then wed and thurs...radiation friday and a shot to boost the white blood cells...then rest for several weeks. your cards and letters and emails have been so wonderful. You have stuck with her this entire time! You haven’t grown weary or bored with the updates and you let her know at every step she’s being thought of. THAT is a blessing and THAT is how you get through this...every day...step by step. God bless each and every one of you.

1.3.5

July 10, 2010 (2010-07-09 23:02)

We know we do not travel this alone and today I’m going to send a special note of prayer for my friend Leslee. I went to undergraduate school with her and there is one thing that ALWAYS sticks in my mind when I think about her – laughter. When I as at my lowest I could count on Leslee to make me laugh. Without a doubt she was there with a smile as bright as the morning sun and something to laugh about. I’m not even sure if Leslee knows or remembers hanging around me that much – I was somewhat of a loner in college, struggling to find my own way. But she was a very influential thread in the fabric of who I am. Now Leslee is facing chemotherapy. I saw a photo of her in the chair of the hairdresser as she got her hair cut short. It brought back memories of mom doing the same thing. Mom is so very thankful that she did that and I know Leslee will be as well. I know some of the trials that she will be facing and I pray for her and I know that as long as she is able to laugh at least once a day – she will beat this. But what about the pain? That’s what scares us, ultimately. Even our ultimate fear of what’s on the other side of this life has more to do with the pain of getting there than the arrival. Pain and fear are wonderful motivators. That’s what mom has been facing as the effects of chemo and radiation at the same time are starting to kick in to high gear. We can do it as long as there is no pain involved, right? My favorite scene in Rocky III is when the ringside interviewer asks Mr. T what his prediction is for his fight against Rocky Balboa. Mr. T answers "My prediction? Pain." The ability to harness pain depends to a great extent on your personality. Introverts are interested in avoiding pain whereas extraverts are more concerned with possible rewards. An example is the intro40

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

vert likely choosing the fat-free lunch option because he wants to avoid the pain of being overweight. Whereas the extravert will probably dive in to the chocolate cake because the reward now is far more exciting than the possible pain in the future! Everything we do is based on an economic mindset. I’m not talking finances but value. We always look to maximize our pleasure and minimize our pain. When I was in the 6th grade my Sunday school class took a climb up a mountain. Technically it’s a butte but to me it was a mountain. Square Butte stands guard to the west as you cross Little Battle, Butte and Cowboy Steele Creeks to the east. six miles past the old town of Square Butte you cross Flat Creek right before you arrive in the town of Geraldine. And that’s where I was for the 6th grade.

I did not want to climb the stupid butte. But I did. I really wanted to see what the view was like from the top but getting there is what caused me duress. Anyone who knows me will smile when I say that I wasn’t exactly the roughest and toughest of kids. I preferred to stay home or drive the truck rather than actually get out and do something. But we took the climb up that stupid mountain and wouldn’t you know it, I fell at the top. I scraped my arm and wanted to cry until I saw the view. My brother is an avid mountain climber and in 2005 he and some of his friends got to the summit of the Mt of the Holy Cross. And right before you get there, before the whole world opens up before you and you can see for miles and miles...this is what it looks like.

Lots of rocks to cut yourself on and trip over - lots of obstacles and, well, pain. But the view from the

c 2013 bruceandbarb.blogspot.com

41


BlogBook

1.3. July

top... This is a steep, hard, difficult climb for anyone going through cancer. Mom is battling it and my friend Leslee is just starting her battle. But we all need to remember, whether we are battling cancer or anything else in our lives – the steeper the mountain, the harder the climb, but better the view from the finishing line! Hey Mom&and Leslee&SEE YOU AT THE TOP!

1.3.6

July 12, 2010 (2010-07-12 21:35)

It is 9:30 p.m. and Mom is just fading off to sleep with Dad sitting next to the bed in the chair watching television. One of the interesting aspects of the Alzheimer’s that my father has is the adherence to a schedule. Everything works better if there is a schedule. For me - I go to bed when I want to. For dad - he watches the news and then goes to bed. God love him for it but I don’t know how he does it. He’s an amazing man though and as I’ve mentioned before we are assuming this blog will morph from my mom’s cancer journey, to the journey in to Alzheimer’s. So today my dad stayed home while Mom and I ventured to the hospital. Dad is ok at home by himself for a few hours at a time as long as it’s the daytime. We left lots for him to do and when we returned the house was dusted and cleaned. he did his chores! yeah Dad! I’m so proud. On the way to the hospital mom and I tried to have some fun so we began waving at every car that passed by. Some waved back but most of them didn’t. It was fun. Mom had her radiation and the mask was a very tight fit today. Mom was holding a little bit of water today and that made it really tight. The neck is really burned now and tender to the touch. We’ll be taking pictures this week and will post them. We met with the oncologist and he is very happy with mom’s progress. He was afraid that after the heart episode it was going to be very tough to complete all 33 treatments. But we told him today we’re in it to win it so full speed ahead. Let’s get it done! I asked the doctor point-blank what we can expect in the weeks after radiation, while mom is ’resting’. He said the neck will get worse before it’s better. we can expect it to start feeling hot like a really bad sunburn, itching and maybe some blistering and then peeling. He didn’t sugar coat anything - he said it’s going to ba a touch couple of weeks but the big news is - she’s made it this far. Tomorrow morning we leave around 6:45 a.m. to get dad to his doctor to check the skin cancer that was removed from his back. Hopefully it’s all been taken care of and that’s the end of that one. Then off to the hospital for a very long day. six hours of chemo and then radiation so tag on about an hour on both ends and we’re looking at a full 8 - 9 hour day. Long day but we’re on the home stretch. 42

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

I was talking to a friend of mine tonight from new york. He is a friend that intrigues me. He is doing a lot of things in his life that I wanted to do but either didn’t follow through with things or didn’t have the same opportunities as he. He is a professional actor and singer and has cd’s and does tv and...ok so basically he’s a star, ok? He has an amazing voice and a face that can play a variety of roles. I’m anxious to see him in action one day. I’ve never met him face to face but I feel a connection to him. we can talk about stuff that matters, not just exchange pleasantries. The reason I bring him up is this: if you had the chance to make one dream come true today, what would it be? You know that when we work hard to make one dream come true, I believe that we are awarded a few additional ones on top of that. But what happens when people or circumstances get in your way and try to block you - either on purpose or just by their mere existence? Maybe the thing that’s blocking us is our inability to say "no" when we really needed to say it. My mom said, "NO" to cancer. Not everyone who says no will get their way but she took a stand and said, "NO" (ok, it’s barbara...she said, "HELL NO"). We don’t know if she’s fully done and beaten it 100 % but the important thing is, she’s had a great "run" so far. We’ll get the "reviews" the end of august and see if the critics feel we’ve won but we know that we did the absolute best we did and were we to do it all over again - we really wouldn’t change a thing. Sometimes we need to stop and care for ourselves. To hell with what the world wants of us - they can’t have us if we’re not taking care of ourselves. You are the only you, you will ever get. Because you do that doesn’t guarantee your outcome - it just makes the getting there, a little easier.

1.3.7

July 13, 2010 (2010-07-13 22:38)

Satchel Paige once said, “You win some, you lose some, and some get rained out; but you have to suit up for them all.” Interestingly enough this quote is often attributed to J. Askenberg but it was Satchel that originally said it. Well today it felt like a little bit of losing and some rain but we all suited up and hit it anyway. First stop at 7:30 this morning was the dermatologist concerning Dad’s skin cancer. The good news is – they got it all. The doctor was very happy with how we have been caring for the wound and we need to continue that for the next couple of weeks. Then Dad needs to get checked every 6 months because once you have skin cancer, it likes to reappear in other places. Then it was off to the hospital. We chatted with the nice lady at the reception desk for awhile and then went to sit in the coffee shop as we were pretty early for chemo. I had a juice, dad had his coffee, and mom had a bottle of water. It truly is amazing that she’s still able to swallow down water and a majority of any medications. She’s doing great. As the day progressed things started going downhill. The neck was hurting pretty bad and right now it’s starting to look like a 3rd degree burn. The goal this week is not for the light-stomach people. The goal is to get through to Friday afternoon without her neck blistering to the point where some of them are open. Once the blisters open, the radiation has to stop. We’re so very close so we’re treating her neck as often as we can. She’s keeping it very moist with creams from the doctor. We had the opportunity to talk to some nurses today and I asked the nurse down in the reception area of the radiology clinic how she copes seeing so much pain walk in to the office every day. She says that some days they don’t cope well and that some days the take it home with them. How can you not? But they all comment on the tremendous support group that mom has. Her daily care is what’s getting her through this. There are days when mom doesn’t want to be bothered with getting a tube feeding but I have to tell her to just lay in her chair and think of something else while I feed her. As long as it’s my watch – she is going to drink water and take in at least 6 cans of nutrition a day until this is completely done. And it’s working. The care on top of her desire is what’s driving her. Those of you who have known me for more than 20 years will recognize how I’m going to end this. I may have already quoted this in the blog earlier on and if so, it bears repeating. c 2013 bruceandbarb.blogspot.com

43


BlogBook

1.3. July

There is a song by the Christian recording artist, Carmen, that says: Your desire is a confirmation. Your destination is there. God wouldn’t have put it in your spirit, If it wasn’t going no where. So set your sights on the promises, And don’t be scared. Because your desire is a confirmation...your destination is there. I’m almost to the finish line. So tired – thirsty – my sides hurt and feet are burning in to the asphalt. The sun is baking my forehead and i’m afraid if I touch it, the skin will peel right off. The sweat is stinging my eyes and I find myself crying, whimpering...I fall to the ground and the gravel and dirt get lodged in to my knees, the palms of my hands and under my fingernails. I think at any minute I’ll swallow my tongue and it will be over. I see no one –I hear nothing – I feel nothing but pain. I KNOW the finish line is there but I can’t see it. come on - where is it?? Is that blood I’m tasting? Surely it’s from my lungs..it has to be, they are hurting so bad. With every pound of my foot on the ground my knee begs to buckle. My whole body has put in multiple requests to shut down. Maybe I need to honor their request...where is that d*** finish line!! Oh no - stomach cramps...that can only be really bad news...I swear my heart is pounding so hard it’s not only going to explode, but it’s going to come shooting through my chest like an unstrapped victim of some horrible car accident. . What am i doing? I’ve been abusing my body. I’m done. let’s start to approve my bodys’ request for all systems to begin shutting down ...wait, what’s that...DESTINATION IN RANGE... but what if I get there and they tell me that the race is not over and I have to keep going? There’s just no way I can run again... Maybe if i don’t cross the finish line that would be better. I’ll just fall over now — Do this AGAIN? What are you crazy? You have to be kidding me...why would I do it over again, I’ve done my job, I’ve run this freakin’ race, followed all the stupid rules...wait...no one said I WILL have to keep running...it’s just a possibility...maybe it’s not a run but now a slow jog or better yet, a comfortable walk...I think I will reach my destination and finish this race but I suppose after that I’ll have a new destination to reach. This bizarre desire I have to beat this and cross the finish line - maybe that really is the Holy Spirit telling me that my destination - my finish line - my victory - my moment that I can yell I DID IT...is right around the corner. The breeze picked up a bit, didn’t it? Did you feel that? And I think my feet are numb cause I can’t feel much down there —- SLAP...ah yes...the breaking of the finish line tape...now THAT’S a destination worth fighting for...just...a...few....more....steps....

1.3.8

July 15, 2010 (2010-07-15 23:51)

A quick note about the photos in this entry - they were all taken right before any treatment was started. It’s tough for mom to think of photos being taken right now but we’ll be getting some current ones posted soon. This has been a tough journey and it’s not over but we celebrate an amazing milestone today. LAST DAY OF CHEMOTHERAPY!! Just amazing how fast it flew by once we got started. Tomorrow is the last day of radiation and then on Monday we’ll drop by some treats for the wonderful team in oncology and radiation. What a tremendous circle of people. You should see their faces light up when they come in to Mom’s room. She STILL manages to smile and try to make people smile as well. She truly is an inspiration to so many people. So what’s next? Well - she’ll be spending the next month recuperating and that will probably mean a lot of sleeping. she is...well..exhausted. And rightfully so. She still fights sleeping so much but I told her today she needs to listen to her body and allow it to heal. She’s been bombarded with poisons and toxic chemicals to fight the cancer and it’s destroyed a lot of good things BUT the human body is 44

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

an amazing creation - God made it to come back. So she’ll get some much needed rest. I told dad to let her sleep but it’s so hard for him right now. They have a routine, you know. And breakfast just isn’t breakfast when Mom is asleep. But he said he’ll do his best. So Dad, thank you for all of YOUR sacrifices during this time. Breakfast alone isn’t much fun we know but the gift you are giving mom in allowing her to rest is priceless. Your gift to her does not go unrecognized! For those of you who know them, they are two of the most connected people I have ever known. They

still hold hands, they still snuggle. Every night before bed one of them gets up from their respective chair and goes to sit next to the other one. They watch some news, and then head to bed. Lately mom goes to bed early and you know what my father does? He doesn’t stay in the living room to keep watching tv. He brings a chair in to the room, sets it next to their bed, holds mom’s hand and they watch it together. Mom tells me at night they still tell each

other how much they love and respect the other one. They still talk about their dreams for the future. And I still catch them smooching in the kitchen! We should all be so lucky. I bet most of us are, but we’re just not taking advantage of it like mom and dad. I hope you have a circle of life around you - not just a circle of friends but of LIFE. I hope you have someone’s hand to hold. Kahlil Gibran, the Lebanese-American poet and writer once wrote, "Love is the only freedom in the world because it so elevates the spirit that the laws of humanity and the phenomena of nature do not alter its course". It truly does elevate the spirit. There is much in this world to bring us sorrow. So many experiences and events to write sad, mourning songs about. For so many there is a symphony of requiem’s playing as the background music in their lives. There is so much pain and even today there are so many of us hurting - but perhaps we can

c 2013 bruceandbarb.blogspot.com

45


BlogBook

1.3. July

learn just a little bit from my parents. About how to hold hands - feeling that connection to the spirit that dwells within all of us. Thank you, Mom and Dad even though this summer has been such a difficult journey you have walked this path with integrity. Each step has been on purpose and we are so very proud to be your children. You ARE our circle of life and we love and adore you. So keep fighting, Mom. Sense us all around you, reaching out to you with our thoughts and prayers.

1.3.9

July 18, 2010 (2010-07-18 14:21)

Kahlil Gibran once said, “A friend who is far away is sometimes much nearer than one who is at hand. Is not the mountain far more awe-inspiring and more clearly visible to one passing through the valley than to those who inhabit the mountain?” This statement has been proven time and time again for us in the past couple of months. Thank you to those of you who continue to read this blog and for playing such a CRUCIAL role in mom’s journey through cancer. This weekend has been rough but we knew it would be. After weeks and weeks toxins continually pushed in to mom’s system her body is starting to react. Her body has been assaulted by IV toxins, radiation waves, and countless pills. She is sleeping a lot which is great because it helps with the pain. Her neck is starting to peel and blister a little bit but it is still manageable at this point. Her stomach is taking most of the hits this weekend but we’re trying to get her over that hurdle. This entry is short but also reflective of the status of the household. Dad is resting, mom is resting, and I’m going to go take a nap. We just wanted to post for you that all is going as scheduled at this point. Mom is in a lot of pain and the tears come pretty freely at times. Thank you for your prayers and for your continued support. It means a great deal to all of us.

1.3.10

July 21, 2010 (2010-07-21 22:14)

There are many names for God. You probably have your own set of names you use to reference your God. Lately I have been calling the name Jehovah-Rapha which means the God that heals. When the children of Israel came to Marah, they found themselves in great trouble. The waters were bitter. They were dying of thirst. And they had nothing to drink. They seemed to be mocked. There was plenty of water, but not an ounce to drink. Then God intervened. He delivered them from their trouble by 46

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

healing Marah’s bitter waters. The Lord our God has many ways by which he makes our bitter waters of trouble, sweet. Tonight I received a moving email from a new friend. His name is Ralph and he is the son-in-law of one of my mom’s high school friends. They have managed to stay in touch all these years. Well, Ralph learned about mom’s battle and was moved to send me an email. His email tonight told me of how his congregation dedicated an entire hour of prayer today – just for my mom. Here is an excerpt from his email: We had service tonight and a solid hour of prayer was dedicated for your mother. A solid hour of people on their knees in prayer, no fly by night stuff. This is just the beginning of the task before us. Your mother is prayed on constantly by myself and several others on a constant basis, every waking moment . First prayers of comfort and peace, freedom of pain and finally a removal of any and all sickness. A restoration of the mind body and spirit. Peace and freedom of the constant worry for family and friends. Be strong. In the middle of the night do not think of what may be, think of the blessing of having her here now. Stay positive. And in a more grand gesture, mind you not giving in to this situation, sometimes these words comfort me. Do not be sad because this is over, smile because it happened. I’m not sure if I’ll be smiling right now because this happened but I do know that God allows things like this to happen. I’m not convinced he wants it to happen but when it does he sometimes allows it so that people may get a fuller understanding of who Jehovah-Rapha truly is. So they may know that God can heal. The reality of this earthly life is that God DOES answer prayer. It’s either YES, or WAIT, or NO. Of course we pray that God will answer yes and heal mom fully in this lifetime and in this place and in this space. To have absolute strangers praying God’s healing for you – it brings the world in closer to you. Tonight I was watching my mom for awhile lying in bed, resting. I was totally struck by the role reversal and imagined how many times she and dad stood at my doorway when I was little and watched me. Then I walked to the other side of the bed and laid down. She woke up and we watched tv, we chatted a bit and held hands. Mom knows how much I love and adore her. And now as she continues to heal she knows that other people love her as well – even ones that have never met her. And no matter how powerful your position becomes, no matter how powerful your friends are, and no matter how powerful your political influences may be – nothing is stronger or can stand the winds of adversity like love can. I close a lot of my greetings to my friends who have birthdays in this manner and I’ll use it to close this entry: may you be surrounded by people who love you.

1.3.11

(2010-07-21 23:55)

1.3.12

July 22, 2010 (2010-07-22 18:22)

Bad rains this morning and then they stopped just as dad and I left for the doctor. As soon as we got home the tornado sirens went off. Major flooding all over the place including upwards of 4 feet of c 2013 bruceandbarb.blogspot.com

47


BlogBook

1.3. July

water closing I43 in Milwaukee. just amazing. We spent about 20 minutes in the basement/garage area. Here’s a photo of the deluge running in to the basement through the garage door. Mom has been spending most of the day resting in and out of sleeping. moving to the basement made her a little more nauseus than we would have liked but better to be safe than sorry. Dad’s appt went well. They are going to be scheduling an MRI and a few additional tests. The doctor asked him some basic questions and the only one he couldn’t answer right away was to name the current president. He was on the Echelon patch but we all decided it wasn’t doing any good so we stopped usage of that today. We had a great talk and one of the oddest parts of Alzheimer’s is knowing that you "have something" but not being aware of what that something is. He knows he forgets once in awhile but other than that is not really aware of any of his other symptoms. We made the difficult decision today to take Dad’s driving privileges away. He isn’t happy about that but he trusts us. Both the doctor and I talked to him about it and Dad agrees that if we both feel that his short term memory issues could mean he is a danger behind the wheel, then he will not drive. That’s a tough talk for anyone to have with an older parent. I didn’t expect to have that kind of talk for at least another 10 15 years. Dad is only 69 and in the world of dementia that is not old at all. So we will continue to work on as much as possible. As I have mentioned often, this blog is for both my parents and our hope is that someone will find some comfort or affirmation from this blog. We do not go through cancer or Alzheimer’s or any of these life-altering diseases alone - at least we pray that we’ll never have to do it alone. If you have comments or personal stories to share I encourage you to share them in the comments area of this blog or email me directly at billcurtis119@yahoo.com

1.3.13

July 22, 2010 (2) (2010-07-22 22:48)

So the three of us are doing what we do every night - gathered in mom and dad’s bedroom, recapping the days’ events, planning for the next day - and counting our blessings. As we are watching the news about the horrible storms that blew through southeastern Wisconsin and BARELY missed us here in little ole Jackson (although a funnel cloud was RIGHT over head!)...the three of us once again agreed that we have so many things to be thankful for —- each other, a roof, food in our stomach...and the ability to dance...I hope you enjoy this video and remember this saying: I cried because I had no shoes - until I met a man who had no feet. God bless. [EMBED]

1.3.14

July 23, 2010 (2010-07-23 04:44)

The time is 4:15 a.m., and the sound of the lonely train is sneaking through the village. I find myself sitting in a chair next to mom, holding her hand, praying, begging God for some rest and relief from the pain for mom. She came to my room to get me which, for mom, is a huge deal. She will do anything not to disturb anyone. But the pain is just to much. Every swallow and movement in her throat feels like shards of glass followed by a glass of pure alcohol. The salivary glands are officially on strike and what remains is a thick, unmanageable string of something. It’s easier to try to spit it out but it’s more of a task of pulling it out then just spitting. The thrush coats her tongue and mouth and won’t seem to disappear. For the first time I almost cry for her. I’ll call the doctor as soon as regular operating hours commence. I’ll tell him we have to have something more to get her past this. I have no doubt they have something else. They have been amazed that the only thing for pain she has used so far is hydrocodone and some nausea medication. It works for a few hours but something has to give. she still does her mouth rinses like she is supposed to - but can 48

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

you imagine how it feels knowing you are going to rinse your mouth and instinctively sometime in the process your throat muscles are going to try to swallow - and the immense pain that follows... Please pray for continued healing and relief from this pain she is in. Thank you.

1.3.15

July 23, 2010 (2010-07-23 17:03)

Pain is an intensely unpleasant feeling that only the person experiencing it can know. The causes are many and it can be compounded by anxiety or fear. When it lasts for a long time it can cause depression and sleep issues which only multiplies the pain.

Morphine. One word conjures up different images for people. I recall parts of the great movie, Band of Brothers, in which Cpl Eugene Roe as played by the brilliant actor Shane Taylor, distributes morphine to his fallen comrades. Morphine was a gift in war time. It is fast acting and is a potent opiate analgesic psychoactive drug. It is often regarded as the gold standard or benchmark of analgesics used to relieve severe or agonizing pain and suffering. The pain medications that mom has been taking are not working so I drove to the hospital today and they released morphine to me to give to mom. I’ll be setting my alarm clock for every 3 hours to check on her and administer more if she needs it. The whole objective now is to keep her calm, quiet, and comfortable. c 2013 bruceandbarb.blogspot.com

49


BlogBook

1.3. July

For the first couple of days she will probably sleep right through the Morphine doses. We’ll be monitoring her blood pressure, pulse, temperature, and breathing every 3 hours and make necessary adjustments. She may feel like she is in some type of mental fog for a few days but once her body adjusts to the morphine, those will lessen and she will tolerate it a lot better. Addiction is always an issue with Morphine but when administered and monitored correctly, addiction usually doesn’t start to kick in for a few months. We only anticipate needing the Morphine for a few weeks. Many have asked how Dad is doing through all of this. To be honest, I’m sure that this has not been helpful to his dementia. The doctor is not happy with what appears to be a fairly rapid decline in his cognitive health. But he knows that Mom needs to fight this. There is a lot to remember to care for Mom and he admits he doesn’t know most of it and that’s ok. That’s why I’m here. He is able to do some tube feeding which is a huge help for me. He will give mom some food in the morning through her g-tube and then for lunch. I administer the medications and monitor the feeding. We have increased greatly the amount of access we have to the g-tube and it seems that we are constantly giving her something. We give her a lot of water because she is unable to swallow right now. Mom typically drinks 8 - 10 full glasses a day, maybe more. So we’ve increased the water through the tube. We’re going through more rubber gloves than I ever imagined possible! We use on average 16 to 24 in one day. On a brighter note, Dad’s back is healing really well. The place where they took the skin cancer is almost closed up completely. I will continue dressing the wound every night for about another two weeks. And the g-tube for mom is looking great. We still clean around it twice a day but yesterday there was nothing to clean and today it’s looking the same. So her body is still fighting and working, and that’s very good news. She has not spiked a temperature at all and her blood pressure, besides the night she decided to go into atrial fibrillation, has been great. We monitor her weight as well and she’s maintaining. We’re still on the road to recovery. And to let you all know that we are still managing to crack at least one smile in this household everyday (a requirement I made in to law when this ordeal began)...I’ll leave you with this thought which will hopefully put a smile on your face. Never criticize someone unless you walk a mile in his or her shoes, and then when you criticize them you’ll be a mile away and have their shoes!

1.3.16

July 24, 2010 1:00 a.m. (2010-07-24 01:29)

Alarm goes off and at first I think it’s a joke. Mom is mildly coherent. Has some extra coughing early this morning that’s been upsetting her throat. I think her salivary glands might be trying to kick back in. Very thick and stringy but there seems to be more tonight then there has been in awhile. That is possibly a good sign. Checked her lungs really carefully and they are clear as a bell. Pulse fine, BP 50

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

great, no temperature. she gets shaky which is something to keep an eye on but completely normal. I Administered 4cc’s of morphine. Will check on her again in 3 hours. Morphine affects the central nervous system. Interestingly enough it is also used to control a person’s breathing if they cannot get that under control. I had morphine once for that exact reason. Good stuff, I must admit, so she’s getting the cadillac of medications. Strange time of the day - when I cannot sleep and I’m awake at 1:00 a.m. it feels totally different than when you wake up at 1:00 a.m. I feel like I should be more creative right now for some reason - like maybe tonight is a good night to write a song. Probably would be but that would mean I have to put the keyboard up and plug it in and I’m not exactly there right now. I hope you have the chance to read the other blog entries. Some have been updated twice a day. I’ll try to update this at each step of the way but no promises. Mom said she may be open to some photos being taken of me administering medications or food or morphine so we’ll see. Quiet time of the day - perhaps I need to spend a few extra moments with God on this quiet Saturday morning and thank him for granting me the grace, wisdom and strength to care for my parents. And thanking him for giving me such wonderful parents in the first place and granting me the privilege of caring for them.

1.3.17

July 24, 2010 12:30 p.m. (2010-07-24 12:36)

Mom slept until about 10:00 a.m. this morning. I chose not to wake her and let her sleep but now I’m thinking I should have gotten her up to at least feed her this morning. She is very sick right now. nauseu, dizzy, vomiting. She has a temperature that I’m monitoring very closely as these could be signs of an infection of some sort. Her white blood cell count is probably very low so we have to watch things very closely. I attemped some nausea medication and a little bit of food in the g-tube this morning but that pushed her over the edge. She is sitting up now with a cold cloth on her forehead and the garbage bucket very close at hand. I will try a minute bit of food in her g-tube in about another 1/2 hour. I also have a call in to the doctor as her nausea medication is not working very well. These are what they call trying times, I guess. Trying to stay focused and stay well and take care of both mom and dad and myself is a little taxing but I’m managing so far. I decided that if Mom doesn’t begin to show improvement next week that I’ll probably call hospice to come help for a few days to give us a break, kinda mix up the routine a bit. I must admit that the thought of having a nurse here for a few days is very enticing. I’ll give that some serious prayer.

1.3.18

(2010-07-25 07:34)

1.3.19

July 25, 2010 7:55 p.m. (2010-07-25 20:40)

I’m sitting here at home with Dad watching MASH. He absolutely loves the show. He even said to me that he supposes a benefit of having dementia issues is that although he is sure he has seen every episode of MASH – each one is totally new to him. But he loves the show. He works on his puzzle books during the commercials. Mom is still at the hospital. We absolutely hate leaving her there but we all know it would be much harder on Dad to be at the hospital 24 hours a day. Mom is in great hands. They will take more tests tomorrow to try and determine if she truly has pneumonia or not. One of the concerns is that the fluid on the x-rays may actually be fluid on the heart which would be a good reason she went in to atrial fibrillation again today. So we’ll wait until tomorrow. The good news is that her oncologist is not totally surprised this is happening. It is common that the patient takes a few steps down right after treatment. He says she will be feeling better and be bouncing back in a few weeks – we just have to help her get there. c 2013 bruceandbarb.blogspot.com

51


BlogBook

1.3. July

Terri spent this morning with Mom at the hospital while I was home with Dad. We were able to sleep in a little bit this morning before going to the hospital. We’ll leave in the morning around 8:00 and spend the day at the hospital waiting for test results. They want mom to walk around tomorrow with assistance. Dad and I will manage to scrape up enough change to get a muffin and cup of coffee at the Java Hut on the second floor. And I’ll work on my joke-of-the-day to bring a smile to mom’s face. I hope that something today will bring a smile to your face. And thanks once again for your kind words and prayers. A few people have sent or brought flowers recently and those are amazing to bring a smile to someone’s heart. "Today, give a stranger one of your smiles. It might be the only sunshine he sees all day."...author unknown

1.3.20

July 27, 2010 (2010-07-27 13:54)

Dad and I are here at the hospital with mom. She will be here a few more days. She has pneumonia in both lungs. Not sure how they developed but we are treating it which is important. She managed to tolerate a little bit of the food supplement through the g-tube today and she got to take a short walk with dad down the hall. I haven’t seen the doctor yet today but will hopefully run in to him before we leave. Not much time (or energy) to do much writing today. Mom received several beautiful cards in the mail and we brought them in to show her. she loved them all. Included was a photo of us when we were really little and mom is holding me. It was sent by her brother-and-sister-in-law, my Uncle Keith and Aunt Sylvia and it said, "who is holding who now?" It was really cool. Thank you to everyone who has sent cards. It brightens things up a lot.

1.3.21

July 28, 2010 (2010-07-28 15:06)

Today marks day five for mom being in the hospital. she has pneumonia and although she is not getting worse, she is not getting any better. She is still suffering from pretty bad nausea and we continue trying to get the right combination of things to stop that. the doctor says he may release her on Friday but not to hold our breath. on top of all of this we discovered mold on the walls and under the carpet of the common area between our condo and the neighbors. We’re trying to figure out if that’s how mom acquired pneumonia and I’m thinking yes. They are scheduled to take out the drywall and replace the wall and carpet on Friday and that’s a very big reason to keep mom away from there on Friday. I’ll talk to the doctor about that later. Consulting with the doctor about dad two weeks ago we agreed to take him off the Exelon patch. Now I’m not sure that was a good idea. He was declining with the patch but now I’m noticing that the very short term memory is really having problems kicking in. We went to the bank and about fifteen minutes later he asked, "when are we going to stop at the bank and do what we need to do?" Then we got gas - he pumped the gas. We got in the car and were about 15 minutes down the road when he asked when and where i was planning to stop and get gas. when i told him we just filled it he said he couldn’t remember doing that at all. he’s also not recognizing things on the way home from the hospital. we’ve been taking this trip almost daily now for close to three months. this Alzheimer’s/dementia stuff is so hard to grasp. We’re going to get some tests when mom gets better. The doctor is not happy with the rate of decline. Fortunately, Dad doesn’t realize that he’s forgetting these things. the incident of ocd-like characteristics are increasing. He constantly checks his wallet for items and his little notebook that he has always kept in his shirt pocket. He also goes to the bathroom a lot but doesn’t do anything when he’s in there. He goes in because he can’t remember the last time 52

c 2013 bruceandbarb.blogspot.com


1.3. July

BlogBook

he went. It’s like security blanket right now. I have heard from a few people who have read this blog and have offered advice and input on people they have known with this disease. I greatly appreciate it all and if you are one of them I would love to hear from you. You can either respond to this blog in the comments area or simply email me at kurtdanskin@yahoo.com Some of you have started sending handwritten cards and letters to Dad. I cannot begin to express to you the importance of these things. He reads them and keeps them near his chair to read again next week and the next. Mom and Dad went for a short walk down the hallway today. mom was pushing the IV stand and they were holding hands. A nurse walked by and said, "now that’s real love". And almost immediately I found myself in the midst of about 6 other nurses and they were all watching them walk down the hall, hand in hand. The nurses here admire both of my parents. their love for one another is unmatched. mom got very tired quickly and Dad helped her back in to bed, straightening the sheets before she got in, covering her with the sheet and blanket, fluffing her pillows, and making sure her water and other items were within reach. He kissed her lips, then her nose, then her forward, and made his way back to her lips the same direction...a ritual i have seen repeated on multiple occasions. Even as mom is right now asleep, Dad is seated right next to her, working on one of his puzzle books and every two or three minutes he looks over at her - stares at her for a few minutes - then returns to his book. He told me today that he hopes and prays that if God decides to take mom that he would take him at the same time. Mom has said the same thing about dad - neither one of them cares on inch to exist without the other one. That is an amazing testament to the love of two people who have overcome amazing obstacles. I pray their love continues to conquer cancer - pneumonia - and dementia.

1.3.22

July 29, 2010 (2010-07-29 20:09)

Mom showed minimual progress today. temperature is lower but the infection is still there. She is up to 1 full can of food a day so only 4 more to go. We are all pretty sure she will be there through the weekend but we all want her better so we’re not in a rush just to get her out the door of the hospital. You know - there are people all around us that notice us. But its usually not how we think they notice us - we worry about our hair and our weight but I think more people notice our spirit. That’s true for mom - people notice her spirit above anything else. Let’s face it - she has no hair, she has a tube sticking out of her belly, her neck is red and peeling, and all sorts of other things that would make any of us scared to be seen in public - but once mom got past the vanity part (like we all would have to) her spirit began to shine through a little brighter. Nurses aren’t so reluctant to come to her room. they don’t mind bringing an extra pillow and even bring Dad a cup of coffee each morning. They don’t mind because her spirit is shining through. She has left enough of her self behind in the radiology room that now people are seeing, well, love. we could all stand to learn a few lessons from this experience. Smile more, open a few doors for people more often, stop complaining about what we dont have and focus more on what we do have – keep in mind that there’s a good possibility that, like Michael W. Smith once wrote, we may be completely unaware that we are entertaining angels. Maybe there’s a light in my soul Maybe it flickers like a neon sign outside an abandoned hotel Maybe there are things you just can’t know But can you say there are no mysteries in the house you choose to dwell Maybe we are entertaining angels unaware Maybe there’s a place where we will fly But some say god is dead like nietzsche said and faith has made me a fool But maybe there is more than meets the eye c 2013 bruceandbarb.blogspot.com

53


BlogBook

1.3. July

Who’s that stranger there beside you? don’t be smug and don’t be cruel Maybe we are entertaining angels unaware Battles of the heart and of the mind We stay caught in mental purgatory ’til our existence can be defined Meanwhile on the shores of parallel There may be a holy conference held somewhere discussing all mankind Maybe we are entertaining angels unaware

1.3.23

July 30, 2010 (2010-07-30 12:06)

Dad and I arrived at the hospital this morning about 10:00 a.m. and found mom walking with a nurse, free of any IV’s tubes, and with a smile on her face. So very good to see her up and walking around. She is very tired but feels better. They want to see a few things happen today and then may release her as early as tomorrow. We spoke to the doctor about the mold removal process at the condos and he said it’s fine as long as we don’t go in the hallway. We’ll block the door off and we have a very strong air purifier in their bedroom so he said she will be fine. Terri and her boyfriend, Ryan, are on their way here to visit with mom. Mom and Dad are in her room and I’m sitting in the little coffee shop having a break. I still feel guilty for even thinking about ’taking a break’ from people I love but I am more in need of some quiet, me time. There’s a great song that I used to sing and one line from it said, "it’s good to be lonely every now and again, to be parted from the ones you adore; to sit at table for two all alone, take a look at the world around you". so very true.

Many of my friends are dealing with stress in their lives and one of my favorite things to do when I’m stressed is to go find a pine tree - you heard me right - a pine tree. And i get under the pine tree and wait for a breeze - or a strong wind - something to make the pine needles sing. to me that is one of the most soothing, centering sounds in the world. When I was younger I would get these random post cards and notes from my father and sometimes he would just write, "don’t forget to watch the clouds". He was referring to the fine art of sitting under a tree, or on a park bench, or even in your car - and simply watch the clouds roll by for awhile. It helps to keep the head clear and put life on hold for a few minutes. I hope you get the chance to watch the clouds roll by today - or the pine needles sing in the wind - or 54

c 2013 bruceandbarb.blogspot.com


1.4. August

BlogBook

the leaves on the trees clapping their hands - and if you listen even closer, you can sometimes hear the tall grass singing hymns...but you have to be very still to hear it.

1.3.24

July 31, 2010 (2010-07-31 14:07)

sometimes - the simplest things need only be said. MOM IS HOME FROM THE HOSPITAL! she’s resting well.

1.4 1.4.1

August August 1, 2010 (2010-08-01 11:41)

Now that mom is back home and appears to be resting well, I’ve been taking the morning and thinking about all that has happened in the past couple of months. It really has been very over-whelming and I am looking forward to my own little vacation someday soon. I’m not afraid to say that there were some of us who thought we might actually loose mom this past week. It seems that when faced with our own or a loved-ones possible or imminent death we actually become psychologically stronger – although we may not feel it right away. Our brains begin to fill with images and memories and, if you are a musician like myself, it may even be accompanied by an orchestrated soundtrack! “It again speaks to how resilient humans are and how this tendency to cope with threats is some sort of indicator of mental health," says Nathan DeWall, assistant professor of psychology at the University of Kentucky. DeWall and others believe that as we develop our awareness of death, we also evolve what has been termed a “psychological immune system”. This is what tilts thoughts and attitudes towards the positive especially in times of crisis. DeWall conducted a very interesting test and took two groups of people and asked one group to spend some time thinking about an unpleasant event such as getting a root canal done. The other group was asked to think about their own death. This is where the psychological immune system comes in to play. Now, for those of you still reading – thanks for hanging in there with me because there really is a point to all of this. The groups were given word tests and other exams and the results are pretty interesting. The group that thought about an unpleasant event tended to be more negative or just not has pleasant. For example, when asked to pair the word bird’ to either a beetle or a puppy, the unpleasant event group chose beetle. While the death-thinking group chose puppy. Puppy typically brings happier images than a beetle would. As the events of the past couple of months have unfolded I have felt my own psychological heaviness. The weight that this puts on anyone is tremendous and during it I never really considered how I was coping with it all. But as I look back and read through my blog entries, I find it fascinating that I was focused on the positive. I, too, experienced my own psychological immune system. c 2013 bruceandbarb.blogspot.com

55


BlogBook

1.4. August

So in the end it comes down to this: most humans, when faced with mortality, go to their happy place. My happy place is filled with lots of images, events, and emotions that make my heart smile. They bring me comfort and peace. Our spirits prepare us for every stage of life and when we are faced with the possibility of the end of this life – our spirits seem very well equipped to handle that. I started a list of the scenes, people and places found in my happy place. " Music " Pine trees " Mountains " rivers and streams " Wheat fields and hay bails " Wildlife " Family camping trips " Christmas at Great Aunt Barbara’s " Cape Cod with the Kenneys and the Danskins " The stage at the Kirk " The applause of the audience at Brevard Symphony Orchestra " Stetson University " Dunedin High " Belt School " 21 and 23 Union street " Orlando Opera " Walt Disney World " Hugs from nephews and nieces

One of my friends, who was always and continues to be an inspiration to me, is Jay. Jay is a singer and he lives in Orlando and he, like myself, holds his family and heritage close to his heart. Recently he attended the 100th anniversary of his church. One of his relatives was among the founding members and Jay was amazed to meet even more people that he is related to. He took lots of photos (another trait we have in common) and made some great memories. I have included a beautiful photo that Jay took on his journey. It transported me, almost immediately, to a happy place. Perhaps it is a common 56

c 2013 bruceandbarb.blogspot.com


1.4. August

BlogBook

happy place item for you, as well. Bare feet through green grass. Isn’t that a nice thought? As mom continues to recover and as we continue to help Dad hang on to as much as possible on his journey through dementia – we all need to attend to our happy places. You are invited to spend some time there and then if you are so inclined – we would love to hear about YOUR happy place. Please send us an email and tell us all about it. It sure would bring a smile to our faces – and I know it would bring a smile to your heart as well. You can email them to billcurtis119@yahoo.com

1.4.2

August 3, 2010 (2010-08-03 20:49)

The power of the human body to overcome even some of the harshest assaults is amazing and yet, for some people, even the smallest of things can bring them down. Maybe it is survival of the fitness but I would like to think not. I have known some amazingly strong and fit people brought down by some of the ugliest diseases out there. I watched a friend in Florida die a slow, agonizing death from AIDS. I’ve held the hand of a dying elderly man while he took his last breath as lung cancer consumed him. I still visit his grave every chance I get. I snuck in a 90 year old lady’s favorite lemonade to her hospital bed and drizzled it on her lips just days before they were to draw her last breath. And I have sat with countless people who have lost a loved one from an accident or illness. As a professional church organist and soloist I have provided musical reflection for over 400 funerals and memorial services. I have officiated at nine of them. I remember one of the bed-side experiences I had with the man I mentioned earlier that passed of lunch cancer. For a few years before his body gave up the fight I had the honor and privilege of sitting in his house and talking with him. We talked, we did a little bit of gossiping, and we prayed.

When I walked in to his hospital room that final day, his loving and adoring wife at his side, she said he had not woken in several hours. I had just received the call that he was there an hour earlier and raced over to the hospital. His room was darkened but not in some macabre fashion – it was – well, appropriate. The door was kept closed and there he lay, perfectly still with the exception of his chest raising up and lowering with each labored breath. I took his hand and kissed his forehead and low and behold he woke up. He muttered, “Kurt, thank you. I love you”. And then I leaned down and whispered in his ear, “I love you, too, and it’s OK if you want to leave us now.” Within the hour he was gone. Was he waiting for permission? Possibly but I think it was just a wonderful way for God to write that chapter in his life. But his story is long and wonderful with many colorful characters. He admitted that the lung cancer was his own doing as he continually smoked right up until his diagnosis. He said he often felt like a fool because he knew better but kept it up anyway. He battled alcohol for years and was sure either that or his family’s genes would take him from this world. He often said he was never surprised to hear the words lung cancer’ because he gave himself that diagnosis years ago when he started smoking. c 2013 bruceandbarb.blogspot.com

57


BlogBook

1.4. August

This story is getting long, I realize, but I want – no I need – to tell you an important conversation I had with him one afternoon. I drove to his house and parked in the driveway. It was summer and his wife had planted wonderful flowers all around the front of the house. When I walked in the house the usual smell of moth balls was replaced with the scent of banana bread (anyone who knows me will tell you that I have this thing for banana bread!). She had a hug in one hand and a slice of bread in the other. I joined my friend in the living room where he was seated in his chair that overlooked the back yard, the big stone fireplace right behind him was decorated with pictures of family and friends. They had no children but were blessed with hundreds of young people they were honored to call theirs. The heritage was apparent. I sat down and asked him the same question I did every time I saw him, “my friend, how is it with your soul today?” (a popular Wesleyan spiritual question for all you die-hard Methodist’s out there!). His response caught me totally off guard. He said, “I am healed, my dear friend, I am healed”. Of course I knew this didn’t mean the cancer – he had one lung removed and a small portion of the other one and to my knowledge, the lung does not have the talent to regrow. I asked him how is it that he is healed and he said, very simply, “because it is my will”. We sat for awhile, not speaking, watching the flowers and the birds in the bird feeder. We talked about people in the church, about the music from Sunday that he heard on the church recording. He asked if I would sing a song so I sang, “On Eagle’s Wings” for him and his wife. He cried. He said he wanted me to sing that at his funeral and I gave him my word. It was that winter, in January, with ice and snow on the ground, gathered around his grave, that I sang “On Eagle’s Wings” for my friend for the last time, just as I had promised. There’s a reason for this story. You see, medicine is a tremendous gift to humanity and it is great to treat so many things but let us never forget that the HEALING comes from within. That’s what he was talking about when he proclaimed he was healed. He was ready – he had come to peace with all the things in his life and he was ready when that day came because he was healed on the inside. A band aid protects a cut but does not cure it: your body does. A cast immobilizes a broken bone, but it does not mend the bone: your body does. Chemotherapy and radiation can attack cancer cells, but they do not cure cancer: your body does. “Cancer treatment focuses on destroying a tumor. Your response to that treatment will determine the outcome of your illness. Unchecked stress, depression and fear reduce the success rate of medical treatment because they block the internal healing mechanisms needed to win the battle against cancer. Conversely, your positive state of mind, your will to live and your excitement about your future stimulate your healing abilities. That is why research has repeatedly shown that patients who received a psychological intervention on top of their medical treatment live twice as long as those who received medical treatment alone.” (Dr. Claude Lambert, MD, Copyright © 2009, peopleovercomingcancer.org) My mother is healed. Oh we don’t know what the MRI will show at the end of this month. And even if it is clear we are told we have a long, five-year window of tests every 6 months to make sure we have actually conquered this one. Remember, this is a rare and aggressive cancer – a fact my mother has not forgotten for one single day. But I have seen a tremendous healing in my mother these past couple of months. True, the last two weeks scared the crap outta me and I seriously thought for a few days we might actually lose her – but I didn’t realize that just as the treatments had started moths earlier, my mother was already healed on the inside. My mother looks healed today. The burn marks on her neck are all but gone when just two weeks ago it hurt just to look at it. Her energy levels wax and wane but the highs are higher now than they have been for awhile. We actually took a car ride today and she walked around a store for the first time in three months! She is back to swallowing her medication, something she couldn’t do for several weeks. She’s even trying food but we’re not there&yet. She’s been doing an outstanding job of avoiding 58

c 2013 bruceandbarb.blogspot.com


1.4. August

BlogBook

people with possible illnesses, using a face mask and always, and I mean ALWAYS washing her hands whenever she touches anything another human hand has. She has fought this fight with both guns a blazin’. I have been wanting to ask my mother how this has changed her life but I haven’t yet – although if she’s reading this, I hope she begins to think about it. If something this traumatic DOESN’T change your life then what’s the whole reason for surviving it in the first place? Maybe you aren’t dealing with something that feels or sounds as traumatic as cancer or Alzheimer’s but of all those negative’ things that have happened in your life how have they changed you? I always said that everything small and large that has happened, every person and every event that has come in to and out of our lives, is now a thread in the fabric of who we are. But what would happen if we removed one of those threads? What would happen if that particular event never happened to you? Were you able to be changed and transformed by that experience – or simply consumed by it. And He will raise you up on eagle’s wings, Bear you on the breath of dawn, Make you to shine like the sun, And hold you in the palm of His Hand.

1.4.3

August 5, 2010 (2010-08-05 00:12)

Today has been a rough day. Mom is fine and Dad is having a pretty good day today. But it has been a rough one for me. As you know we are all trying to help Dad cope with the affects of Alzheimer’s Disease but it is so difficult when you are just starting out. As I have been reading and researching and trying to empower myself about this damned disease it just gets – well – depressing. My mother and I have spoken about it and we are both really not sure what the future holds or how to face the future. But unfortunately, the future is here. You may recall in an earlier blog entry a few weeks ago that Dad and I went to his doctor and it was at that appointment that the doctor made three very big decisions. 1) The Excelon patch was not working very well so we’ll discontinue that, 2) Dad seems to be experiencing (and I quote the doctor here) a rapid decline, and 3) Dad should not be driving a vehicle. Well, the three of us were in the car yesterday and I was driving when Mom suggested that Dad could drive for awhile. I reminded them what the doctor said. They both had absolutely no recollection of it. In fact, to the point that it was just on the verge of defensive. Dad was absolutely sure that conversation never happened and Mom went on that she had absolutely no memory of that decision. Puzzling. I was SURE it would have been such an enormous change in what my father is used to that he would have surely remembered how much time and care and consideration both the Doctor and I took when bringing it up to him. Well as you can imagine it was frustrating not only for me, but for both of them. Not remembering that such a powerful, important decision had been made is so difficult for any of us to wrap our brain around. And when you don’t recall you are suddenly desperate for what you perceive to be a lack of truth. You want a definitive answer and having one person telling you, “this is the way it was” just doesn’t cut it. You know how that goes – you swear it didn’t happen that way so you go back to the people who were there and lo and behold they confirm that it actually did happen that way. But you need proof – no, you require it. Now the question is looming over my head: will they now remember this decision or do I have to step in and take my Dad’s drivers license away? Dear God in heaven, please do not put me in that position. To add fuel to this potentially explosive decision – mom and dad both still read this blog. So I’m going on what some of the experts say and I hope that Mom and Dad both understand that this is simply a tool to help them remember. I’m putting it in writing and when they read this I pray that it is engraved in to their memory in a place that is easily and readily accessible. c 2013 bruceandbarb.blogspot.com

59


BlogBook

1.4. August

Chemo fog has been a debate for many years but doctors have now all agreed that chemo can affect cognitive abilities. They include: a) word finding difficulties during conversations, b) short term memory lapses, c) processing speed. I’ve seen it the past couple of weeks especially looking for words. I remember that during the entire hospital stay last week Mom could not recall the word morphine. She knew the medicine and knew the word but the connection between her mouth and where that word was stored in her brain was not working. I could see the frustration on her face. Mom has always, and I mean ALWAYS had a wonderful memory. And she knew that chemo fog was affecting her ability to find certain words during conversations. She still has some issues with that but we are hopeful that will clear up as the recovery process continues. Short term memory lapses are not frequent but they have occurred. A couple of times she has asked if we did X, Y and Z and we had just performed them that day or the day before. It is ok and I tell her it really is not big deal – it happens to most chemo patients and with what’s she has been through in the past couple of months no one would blame her if her brain took a vacation. She laughed – stuck her tongue out at me and made a raspberry. Knowing is easier than not knowing. So for mom she pretty much knows the cognitive impairment affects of chemo and we know that it should pass in a few more weeks. But what about Alzheimer’s patients? If you ask my father if he is sick or has a disease he will tell you no. He feels fine but knows that every once in a while he may forget a few things. Mr Miller was my high school history teacher. He was pretty tough but I loved his classes tremendously. I remember that one day he said that if we ever had the opportunity to rule over a kingdom the one thing we should never, ever let the people do is learn. I’d like to take that same idea and put a different twist on it. If you ever have the opportunity to develop and spread a disease – never, ever let the people know they have it. Mom KNOWS she has cancer. I KNOW I have psoriatic and rheumatoid arthritis. But Dad doesn’t really KNOW he has a disease. Oh we talk about it a lot. He’s been put in the uncomfortable position of having his son tell nurses and doctors and even bankers that his father has a disease. But at least mom and I can wrap our brain around the concept that we have something wrong. We can read about it. We engage people in conversation about it. But Dad – he does his puzzle books and watches his programs on television. He has his daily routines and his rituals but he isn’t running to the computer or library to research what is going on with him because it hasn’t fully dawned on him that there’s something to research. How can I put this another way? You and I have a software program that is already loaded in our brain. When we are told something is wrong with us, we immediately begin asking questions and taking a proactive stance to learn about it and fight it. When my mother was first diagnosed with fibromyalgia years ago, they both did heavy research. They read books, papers, and asked doctors and nurses and friends what to expect and how to treat it. The same with me when I began getting ill and then finally after my diagnosis I researched and am still involved in learning how to conquer it. The software was already there in our brains guiding us to a typical, proactive response. Somewhere along the line did my father loose the software? Did the trial version of his software expire and he is no longer able to access it? I adore my father. I love him with all of my heart and I care about him so deeply it hurts sometimes. I hate seeing this damned disease play its little tricks on the man who held me as a little boy. He taught me how to fish. He taught me how to escape the house should it ever catch fire (which came in handy when our house did exactly that in the 5th grade). He taught me to slow down once in awhile and enjoy the little things life has to offer. He taught me how to change a tire, change my oil, and the best way to wash a windshield. He taught me that its ok if you get cow crap on your pants and no, you don’t need to wash it off right away. He taught me to drive a stick shift and how to drive with your eyes AND your 60

c 2013 bruceandbarb.blogspot.com


1.4. August

BlogBook

ears. He taught me how to tie a knot and how to tie my shoes. He taught me how to fry an egg and the best way to butter your toast. So Dad, it is ok if sometimes you are not remembering things exactly how they should be. It’s ok if there are days you don’t FEEL like you have some disease. I give you my word, though, that I will continue to learn all I can so that you and I, together, can conquer whatever is happening to you. We will figure out how to cope with it and we will play Chinese checkers once in awhile. We’ll watch reruns of MASH and I’ll still bitch that you don’t put enough lunch meat in the sandwiches. I’ll still sneak you some cookies when Mom isn’t looking if you will make your spice cookies once in awhile. And I’ll always have a hug ready and waiting for you whenever you feel the need – and sometimes, when you least expect one!

1.4.4

August 9, 2010 (2010-08-09 12:58)

On Saturday we managed to get out of the house again for a short ride to the store. Mom is battling nausea all day today so the ride was short. Her stomach hurts and she wants to eat desperately. Her throat is pretty much healed now from the onslaught of radiation but her taste buds are another story. She can barely stand the taste of water but she is still drinking it. If we could only give one bit of advice for anyone going through chemo and radiation it would be to never stop drinking water. There were about two weeks at the end of treatment that mom’s throat was too painful to even swallow water. We gave her more water than usual through her g-tube. I think the amount of water she continually takes in has a lot to do with how quickly she is healing. We hope that the taste buds will return sometime this week which means I get to go back to cooking those gourmet meals to which they were so accustomed! Last night she spent most of the night coughing and suffering from the dry heaves. Her tongue still shows signs of thrust which is more than frustrating all of us now. She’s had it three times during treatment and this time she’s been on antibiotics for 3 weeks solid and she still has thrust. We are waiting to hear from the doctor this afternoon to find out what is his analysis of the situation. Patience is such an important part of this journey. We were patient in waiting for the test results. Patiently awaited mom to recover from both the med-port and then the g-tube surgery. Patient as the affects of chemo and radiation together began their brutal assault. And now comes what seems to be the hardest part yet – patiently waiting until we get the MRI done on the 25th and then waiting for the test results. So many things go through our mind when we wait that it is hard to be patient. And today we are patiently awaiting a call back from the doctor. Wikipedia.org has a unique definition of patience. It states that patience is “the state of endurance under difficult circumstances, which can mean persevering in the face of delay or provocation without acting on annoyance/anger in a negative way&” When you actually think about the meaning of patience, you really began to understand that it truly is an art form! Is this a test of patience or endurance? I think endurance is fueled by human pride. Endurance celebrates the self-sufficiency and self-reliance of the individual, who relies on natural strength and will power to fuel his or her pride. While patience seems to derive from humility, and the recognition of our dependence upon God and other human beings. I’m not suggesting that endurance is not Godly, surely many Christians do endure for the sake of the mission – but it is patience that will truly reward a person. Patience means reliance upon any being or source of power other than our own while endurance comes from within. The human need to endure the onslaught of disease and to endure the hardships of the great fight is often a state of being that we honor and praise. Lance Armstrong comes to mind as do most Olympic athletes and cancer survivors. But endurance doesn’t get us anywhere when we lose control – Lance c 2013 bruceandbarb.blogspot.com

61


BlogBook

1.4. August

has control of when he can train, where he can train and if his bike is not working he gets another one. But what of the need to wait? When we don’t have a choice but to wait.

We are patient but it wears thin because it fights with our human pride. So I would argue wikipedia’s definition and instead of saying that patience is “the state of endurance” how about “the state of being”. If we are enduring than we are in a state of being under difficult circumstances. We are face-to-face with a delay to our pride being fulfilled – we want that answer and we want it now, we want the solution and want it to be fixed and done! But can we do that “without acting on annoyance/anger”? Oh but that is a contradiction, is it not? Can human pride actually wait, while face-to-face with this seemingly impossible situation, and maintain a sense of calm and the appearance of, well, being patient?

It is a fine line and so far Mom has walked it pretty well. There are times of frustration but she knows that she has to be patient enough to allow the medication to run its course. She needs to be patient enough to allow the great Healer to do his role and she needs enough patience to allow herself to rest when needed. So far she’s doing an amazing job of it. It begs to ask the question, would we do as well if face-to-face with the same challenge that Barb has? I am reminded of the Bible verse, “they that wait upon the Lord will renew their strength” (Isaiah 40:31).

1.4.5

August 10, 2010 (2010-08-10 22:28)

I’ve been trying to focus on things that I’m learning through this experience. But it’s so hard to come up with them when you’re walking in the middle of it all. I new friend of ours that we met in radiation told me that Mom will have to begin learning how to define her life as a cancer survivor - and the first phase that people go through is trying really hard to forget that they have/had cancer. She also said that we will all be looking to get back to life the way it was before cancer but that we will be looking in vain - because it won’t happen. What’s important in the next coming weeks and months is for all of us to figure out how to continue moving forward but NOT backing up to where we were before this happened and trying to move on from there - THAT is the temptation. Mom looks better today. Her neck is all but healed from the horrible burns and blistering. Her taste has not returned yet which is driving her crazy because all she wants to do is eat some food! but the fact that she WANTS to eat is a huge step forward. She did some work around the house today and wasn’t sleeping as much during the day as she has been. In fact, this morning they both slept in until 7:00 a.m.! That’s GREAT news. So now that we see little glimpses of "the way it used to be" - why can’t we set our sites on that as a goal? I’m in the midst of this so I’m not sure I can actually answer that question. But I do know that we will never go back to the way we were because we aren’t the same after cancer. We can beat cancer and we’re trying so hard to do that - but it will always be a part of our lives from this day forward. 62

c 2013 bruceandbarb.blogspot.com


1.4. August

BlogBook

I remember the days of church camps that I would be asked on occasion to give my "metal" sermon. I would talk about how God is continually creating us - we were not just creatED one day and that was it - but we were made in to a creatING being. We were meant to create - and change - we were meant to be verbs! In order to make something with mettle - we had to be treated like metal. To be a creature of courage and fortitude (mettle) we had to be fired up - placed in the burning hot coals - than pounded with a heavy hammer and then slammed in to the cold, icy water. Then as the relief of the steam began rising up (what I referred to as the holy ’ahhhhhhhhhhhhhhhh phew’)...we would be thrust right back in to the fire. Of course this entire time I’m using an old cattle iron and sledge hammer to drive home my points. The sparks would fly when I thrust the metal in to the burning hot coals - I reminded the listeners that in order to pound through our tough exterior, God allows us to be softened by fire something, well, painful. Then when we are soft, the hits of the world and our emotions and our state of being and our health and so on and so on are continually pounding away at us causing even more hurt.

It’s hard to hear when you are being pounded on, it’s hard to focus when you are still as hot as the hot coals of the fire, it’s hard to keep your eyes open when suddenly slammed in to a bucket of ice water and then finally, and you can hear it if you listen closely - the SIGH of relief accompanied by the steam and the new creature is revealed. c 2013 bruceandbarb.blogspot.com

63


BlogBook

1.4. August

None of us are immune to the Master’s creatING Spirit. Oh we can try to run but we just end up in the coals ourselves and then who is there to pull us out? So the only joy we have is the knowledge that once we get through this series of firing and pounding and reshaping and sighs...what will be before us is a new creation. I’m pretty sure that’s what our friend was trying to tell us.

1.4.6

August 13, 2010 (2010-08-13 17:27)

No matter how old we get, we will always be our momma’s baby, right? I have been accused and found guilty of being a mama’s boy and I’m not ashamed to admit I agree about the verdict. Today we all got in to the car and drove to Wal-Mart and bought a printer for our computer. It was great to see mom walking around the store. We took our time and looked at other items. She had the energy to do it all. Then this afternoon, after we got the printer all set up, I asked mom to make me a grilled cheese sandwich. Nothing is better in this world to me than a grilled cheese sandwich made by mom. Oh, many people have tried to make the same thing for me and I graciously ate them – but nothing beats the way my mom makes it. What’s so special about it? Mom made it. And food made with love truly does taste better. I have become a pretty good cook over the past couple of years but grilled cheese – I don’t make them because no one makes it like Mom. I know what you’re thinking, it’s just bread, butter and a piece of cheese. But have you ever had a bad grilled cheese sandwich? Oh yeah – and when they are bad they are really horrible. So although I really love them I won’t order them when I go out. I won’t try to make it on my own. I won’t even ask the one that I love to make one for me – I’ll just wait for mom. So thank you, Lord, for making my mom feel better today and up to the task of making a grilled cheese sandwich.

1.4.7

(2010-08-17 20:26)

Mom is being patient in waiting for the 24thto come along. That’s when we get the MRI done so as a request from her, we’re going to spend some time to focus on Alzheimer’s. As you know if you are a regular reader, my father has what his doctor has defined as “rapid declining dementia”. It is time for me to do something about it. So I decided to join a walk. To tell you the truth, I have never been a big fan of walk-for-this events. Walking seems so trivial compared to the cause. But in this case it is a little different because not only am I walking to raise awareness and funds, but also for my own benefit. I know the health benefits of walking. There are not only physical benefits but emotional as well. My dad will be with us. I will be there with my cane and when I can no longer walk someone will be pushing my wheel chair. I want that someone to be YOU. Please visit this website and consider making a donation. 64

c 2013 bruceandbarb.blogspot.com


1.4. August

BlogBook

http://memorywalk2010.kintera.org/faf/donorReg/donorPledge.asp?ieven t=341647 &lis=1 &kntae341647=6ADF48F15B1B48DE9FAB287819F0F7F4 &supId=294673428 If you are in the Milwaukee area on October 2 at 9:30 a.m. please consider walking with us and taking a turn to push my chair as I walk for my father and for the millions of people facing Alzheimer’s. Here is my Team Page which will give you the chance to sign up to walk. In the center of the page click the "join my team" link. http://Memorywalk2010.kintera.org/milwaukee/officeremotecontrol More information to follow. Please strongly consider making a small donation and pray about walking with us on this special day. Mom is already cleaning her walking shoes and she has promised to be there even if her hair hasn’t grown back in by then.

1.4.8

August 21, 2010 (2010-08-21 12:06)

It’s been a few days but things around here are pretty much at a stand still. Mom is still not able to eat foods so she takes nutrition through her g-tube. This is her third round of thrush since treatment started and she’s pretty tired of it. But she’s able to tolerate the smells of a lot of foods and that is a HUGE step forward. This week is all about waiting. I can tell that mom is trying hard not to think about what’s coming up this week but it’s not working. We have an MRI on Tuesday then we meet with the oncologist on Wednesday to get the results. The question is: did we get all the cancer or did it run and hide somewhere else? So to keep things pretty simple right now please pray that mom stats focused on continuing to get better and that the news we will here on Wednesday is the news we all want to hear.

1.4.9

August 23, 2010 (2010-08-23 11:35)

Mom and Dad had some visitors yesterday. It was nice to see Terri and Ryan and two of the grandkids. Also was very nice to meet Jamie. Here’s a little group photo. One of the grandkids doesn’t like to participate in anything remotely associated with family so she’s not in this photo. But Crystal jumped at the chance to have her photo taken next to grammy! So tomorrow we will travel to the doctor and mom will have a full MRI scan. Then we wait...and wait...will be a very long day and night for all of us...then at 9:00 a.m. the next morning we meet with the oncologist to find out if the cancer is gone or if it relocated. c 2013 bruceandbarb.blogspot.com

65


BlogBook

1.4.10

1.4. August

August 25, 2010 (2010-08-25 17:52)

What an emotional day today. After what felt like HOURS sitting in the doctors office waiting for his arrival, Dr. Hake finally came in to see us about the MRI results. The results are in: the MRI shows NO cancer! It appears she is cancer free and has beaten this very rare form of cancer in only one round. HOWEVER... This is a very trick and sneaky form of cancer. What happens frequently is that some of the cells decide to ’head for the hills’ and can show up months later in another part of the body. That’s why mom will be going for pt scans every THREE months for the next couple of years. The rough news is that this cancer typically runs and hides in the brain. We will have an in-depth meeting with the radiologist on Friday but the plan of action is to do a careful brain scan to see if any small areas of cancer are detected. If they are - then pinpoint radiation. If no sign - then a ’bath’ of radiation will be given to the entire brain. They call his prophylactic radiation, or preventative. Now - why would you purposely submit to radiation to the brain if it absolutely is not necessary? That is one of the many questions we will have for the doctor. What long term effects could we expect? Will this bring about any cognitive issues? You weight the options and make a decision. Mom had a round of antibiotics today because her body is not responding to any of the other treatments for her thrush. Since she’s not able to eat and swallow foods yet, even taking a 100 % natural approach is not an option. So today, tomorrow and the next day she will receive intravenous medication. We will keep everyone posted on what is decided on Friday. Either way we take a few days to rejoice that Mom is an amazing fighter and it appears she has won the first round in this fight.

1.4.11

August 31, 2010 (2010-08-31 00:20)

At the writing of this blog it is only 14 minutes in to August 31 - the last day of August. I would ask the typical "where did summer go" question but for us here in Wisconsin it has been a long, grueling, sometimes scary summer. Mom’s hair is showing signs of coming back but the reality is that it will disappear before it gets a chance to come in because radiation begins soon. We don’t have a start date yet but we’re just waiting for the phone call so we can start that process. The doctor and nurses tell us that the burn won’t be anywhere near what it was on her neck. They say the side affects are minimal. We have to watch her eyes closely as radiation to the brain can cause cataracts. We also have to watch her hearing which has already been affected a little bit by the radiation. A trip to the hearing guy will be in order for both mom and dad in the early fall. It must be extremely tough for mom right now - she has overcome yet she feels a huge setback by having to go through yet another round of radiation. She knows it is the smart thing to do and it is safe but still you have questions and afterall its her body - not ours. It’s her brain being radiated, not ours. The doctors assure us that no cognitive affects will occur. We did some shopping this morning and tomorrow we’ll go for a drive in to Milwaukee and do some window shopping and maybe a short walk along the lake depending on the weather. It has been pretty darn hot here in Wisconsin the past couple of days and mom has to say out of the direct sun. We are in such a holding pattern right now but as soon as we hear about the next step we’ll let everyone know. More to come soon on the Alzheimer’s but suffice it to say that Dad is doing ok. He has an appointment with the neurologist next week and hopefully we’ll get some answers.

1.4.12

August 31(b), 2010 (2010-08-31 19:56)

no one told us about this part. It might be easier to understand and follow and accept had they given us an idea that this is what would be next. Radiation to the brain? The whole brain? I totally get it 66

c 2013 bruceandbarb.blogspot.com


1.5. September

BlogBook

that it’s preventative because the cancer cells love to migrate there. So here are the options: Brain radiation - 60 % of patients who do NOT get this, will get a tumor in the brain. of the people who DO this, 20 % will still get a tumor. You can only radiate the brain ONCE. No brain radiation - do MRI’S regularly. If tumor shows up and its not to big and hasn’t fully attached itself to important brain parts: cyber knife is an option. Mom is not a happy camper right now. You fight and fight - you win the battle. Just to find out another enemy has been waiting for you around the corner. Please pray for Mom. This is not an easy decision and we’re seeking advice, input, prayers, research, etc. We’ll get another opinion. I’ve gone online and have joined a few doctor-supported support groups and am collecting their opinions as well. 1) Does it make sense to radiate the brain when nothing is wrong? 2) Preventative is one thing but radiation can do damage and will kill brain cells - is the cognitive risk worth it? 3) If we do nothing and the cancer does decide to show up, it could have some long-term cognitive consequences as well as consequences from any procedures to get rid of the cancer. 4) If it was your brain - you think clearly - you have no cognitive issues - would you agree to preventative radiation of the brain?

1.5 1.5.1

September September 8, 2010 (2010-09-08 19:20)

We took a trip today to the Ear, Nose and Throat Doctor and he said that Mom looks GREAT. No damage to anything and he encouraged her to try a little harder to eat some solid foods even if it doesn’t take good. I made some chicken and rice and corn tonight and guess who ate? From a plate? MOM!! I’m so proud of her that we took a photo. Taste is slowly coming back but after a few bites the throat starts to hurt. She needs to start slow but she’s doing so well.

Mom and Dad celebrated their 49th wedding anniversary on the 6th by purchasing a fish tank. It looks pretty and I’ve included a photo of that as well.

On Friday I’m sending them both to get their heads examined! Hee hee hee Seriously – they are both getting an MRI. Dad will have one of the brain at 1:05 p.m. just to rule out tumors, cysts, clots and c 2013 bruceandbarb.blogspot.com

67


BlogBook

1.5. September

silent strokes which could all lead to the same symptoms as dementia. Mom is having an MRI of her brain at 1:30 p.m. to see if the cancer ran and hid out in the brain. That’s where cancer likes to go when it starts to get beat up by chemo drugs. If the cancer is there – then we attack. If it is not – the decision is up to her as to whether or not to go through prophylactic radiation to the brain. Why radiate a good brain? Right now all the studies and research shows that the benefits far outweigh the risks. But the decision is Mom’s and we have told her she has our full support no matter what she chooses. I have had the privilege of speaking with several Oncologist’s around the country via email and some on medical blogs. They all say the same thing: although it’s a new approach, since it is a rare cancer, the benefits of this procedure are greater than the risks. So please keep her in your prayers as I know you have been. She is doing so amazingly well but this decision and next step is very scary. I’ll try to answer a few questions here on the blog and if you have any you would like me to post here and answer just email them to me please at kurtdanskin@officeremotecontrol.com What are the potential risks of prophylactic radiation to the brain? · Cataracts · Hearing loss and possible fluid retention in the ears · Slight skin irritation to the head · Hair loss which may or may not come back · Minor cognitive impairment but not to the extent one would notice in casual conversation What are the potential risks if we do NOT do this procedure? · The cancer can grow and metastasize anywhere in the brain and cause severe cognitive impairment and death Could she still get brain cancer if the do the procedure? · Yes. There is a chance especially if the cancer is hiding deep inside the brain or near the brain stem (the brain stem is NOT radiated during this procedure) If she gets this procedure, and gets brain cancer, can they then get the cancer with more radiation or chemo? · No. That’s the hard one. Our research says (and if you hear otherwise PLEASE tell us) that radiation to the brain can take place once. Any more than that and cognitive impairment is very likely. · Chemo for brain cancer is tough. Since most of the chemical won’t get through the blood barrier of the brain, the chemo would have to be administered directly in to the brain via a shunt in the skull. Did you just shudder a bit? So did we. That, again, would be a decision that Mom would have to make. So the good news again is that the cancer appears’ to have gone away with the first round of chemo and radiation. The rough news is that just because it doesn’t show up on a PTscan, doesn’t mean it isn’t lurking right around the corner. That’s why she will get PTscan’s every couple of months for the next 5, yes count them, FIVE years. Once we get past the 5 year mark with no more cancer – we’re home free. I’ve spent countless hours and lots of very late evenings researching our options online. Nutrition is a HUGE part of this and Mom has a great diet schedule and with only a few minor adjustments here and there her nutrition intake should be able to battle most things. But we all know that cancer is never pretty, it changes and adapts, and once it is in you, its probably always hiding out just wondering if it is safe’ to come out and start gathering friends and setting up shop. 68

c 2013 bruceandbarb.blogspot.com


1.5. September

BlogBook

Mom is doing well. She has been walking with Dad again like they used to. She was cooking some breads and rolls this past week and has been active around the house. It is nice to see her getting back to some sense of normalcy. However, life is never back to what it was before we got the original diagnosis. And so Mom’s strength will continue to serve her well as she seeks out new ways to live – new ways to fight – and new ways to stay on top of her game. GO MOM!

1.5.2

September 12, 2010 (2010-09-12 16:02)

Today was one of those days where you get to forget, just for a bit, that you are battling cancer - and Alzheimer’s. we got up this morning, packed a lunch, and headed to the Milwaukee lakeshore to the annual KiteFest. We had a great time and more importantly, mom and dad had a WONDERFUL time. We met up with some friends, saw some amazing kites and kite flying acrobatics, walked in the sun, sat in the shade, met the Milwaukee County Sheriff, David Clark, ate our lunch, and the entire time a gentle, warm breeze was coming off the lake. Absolutely beautiful. So I will let the pictures do the talking. Rejoice with us, won’t you, that today we got to play - and be very thankful for not only another day, but another beautiful day with loved ones.

[GEDC0841.JPG] Barb and Allen McAllen

[GEDC0851.JPG] You Just Can’t Stop These Two!

c 2013 bruceandbarb.blogspot.com

69


1.5. September

BlogBook

[GEDC0858.JPG] Kurt, Sheriff David Clark, Barb, Bruce

[GEDC0860.JPG] Barb and Dear Friend, Olivia

[GEDC0866.JPG] Olivia, Salsa (Chinese Crestid), and Barb

[GEDC0874.JPG] Barb and Bruce, Lake Michigan, 9-12-10

70

c 2013 bruceandbarb.blogspot.com


1.5. September

BlogBook [GEDC0867.JPG] Part of the Great Milwaukee Skyline

[GEDC0830.JPG] Walking Along Lake Michigan, Milwaukee

[GEDC0878.JPG] Bruce and Kurt, Lake Michigan

1.5.3

September 14, 2010 (2010-09-14 11:52)

Well I did it. I pulled off a surprise for my dad today. It WAS going to be a surprise for both my parents but I needed to let Mom in on it. Their dear friend from Dad’s Forest Service days, MaryPat, was flying from Boston to St Louis and had a 3 hour layover in, of all places, Milwaukee! MaryPat and I chat all the time and I told her that since she had the layover, how about I bring Mom and Dad to the airport for coffee and to see her!

Boy was dad surprised! He was soooo happy to see her. He had this huge smile on his face all morning. And still does. It truly was a great time and I got to meet her face-to-face for the first time. MaryPat we love you! It was so great to see you. It wasn’t easy getting Dad to get up that early and get in the truck and then face the rush hour traffic of Milwaukee. In fact, he HATES traffic. But he was a trooper and didn’t say anything. It took us a little while to get there but when we did, it was great. MaryPat was getting off the plane and then we told dad, "We aren’t here to pick anyone up today. We lied about that just as an excuse to get you to the airport...but don’t worry, we aren’t putting you on a plane today". "We told him we brought him there to meet someone special today. We didn’t tell him c 2013 bruceandbarb.blogspot.com

71


BlogBook

1.5. September

who but about 2 minutes later, up the ramp walks MaryPat. Dad almost fell over he was so surprised.

Life is all about making memories. It is what we have when all else is gone. Each and everyday of our life we have the opportunity to make a great memory for ourselves and for our loved ones and sometimes even for a stranger. So keep the camera handy all the time - and look for those chances to make a memory. Because when all that is left behind is a cosmic whisper - we will still have our memories.

1.5.4

September 16, 2010 (2010-09-16 10:38)

It usually is a very bad sign when the Doctor, not the nurse, but the Doctor, calls your house. I got a phone call from the radiologist this morning around 8:15 a.m. I was shocked to hear his voice on the other end. He said, "I know you are all scheduled to see me today about the results of the MRI but I wanted to give you a call first"... that can’t be good, right? Then he said, "I know you all drive about an hour so I wanted to see if you had any questions I could answer on the phone. Otherwise, your Mom’s MRI scan is clear and there are no signs of cancer cells in the brain." YEAH!!! YIPPEE!!! WAHOO!!!!! WAY TO GO!!!! CELEBRATION!!! So now on to prophylactic radiation. We have all thought, prayed, discussed, cried, yelled, screamed, and of course - researched. And the overwhelming response is this: the benefits of prophylactic radiation to the brain FAR outweigh the negative. And if we don’t do this, and the cancer decides to show itself in the brain - there’s the chance it could show up and be to late. So we’ll keep you posted. Mom is emotionally set for ten rounds of radiation to the brain as a preventative measure. We will let you know when that is scheduled. For now - YAY!!!!!!!!

1.5.5

September 21, 2010 (2010-09-21 15:13)

This morning we all got up pretty early (6:30) to get ready for what we were told was going to be a long morning in radiology. It didn’t take very long at all and we were out of there in about 45 minutes. The procedure they did today was to fit mom’s head with yet another mask to keep her head perfectly still during the ten treatments of radiation to the brain. The machine mapped its course today during a couple of "dry" runs and we were out of there. The procedures begin this coming Tuesday. During these procedures we do not anticipate may side affects. The hair that has been slowly regrowing 72

c 2013 bruceandbarb.blogspot.com


1.5. September

BlogBook

will probably pack up and go on vacation again. They tend to not like radioactive environments but it should grow back once the "landscape" is clear of radiation. Mom will have a little skin irritation or burning but should not be anywhere near what she went through for her neck. As today is the last day of summer, 2010, taking a look back over the past couple of months is tiring. There have been so many ups and downs that it is hard to track all of it. Still, she made it through what seems to be the hardest part. So we will keep you posted on the procedures next week.

1.5.6

September 27, 2010 (2010-09-27 17:04)

It turned in to a beautiful, early fall day today in Wisconsin. Just a few of the trees have started to change colors and hopefully throughout the next couple of weeks the landscape will explode with brilliant colors. Someone once said that God has the best box of crayons - and that is so evident especially in the fall. I hope you are able to enjoy this season with someone special and that you can take time to enjoy the transition of the seasons. We received a wonderful gift this week from the hospital where mom has been getting her treatments. They know it is a 75 mile round trip for us each time we go to the hospital and so for the next two weeks of treatments, they are putting mom and dad up in a hospital-owned fully furnished apartment right next door to the hospital. We got them checked in today and its a very nice place. They have settled in and although it doesn’t have internet access, it has all the other features of home. We decided that I would stay in Jackson to tend to the fish tank. It seems our little swimming friends decided to come down with a little cold and I have to attend to them this week with daily medication in their tank. But it works out well and we are saving a lot of gas funds. Mom will begin her prophylactic cranial radiation treatments tomorrow morning at 7:45 a.m. The procedure only takes 15 minutes and will take place this week, next week, and end the following Monday. Please keep her in your prayers - this is the hard part, actually. Not so much physically but emotionally. They had to do another mask that will be used to actually lock her head in to place on the table. It can cause a good deal of anxiety. I know it’s hard for her to be in a strange apartment as well but I know they’ll do fine.

1.5.7

September 29, 2010 (2010-09-29 16:45)

If you have been following along with barb’s journey from the beginning, you will recall that before anything happened she had a gastric tube put in to her stomach in order to receive nutrition. Thank the Lord it was there because for about ten weeks that is the only way she was able to "eat". Now she has reached a milestone in that she has not required the tube for two weeks - she has been eating solid foods. So here is the question I will pose to you: You have this plastic tube sticking out of your stomach - through the skin, just below the rib cage. a little unnerving, wouldn’t you say? Now think about this - they have to remove it. Do they put you out to do that? The answer...no. It’s a quick trip to the doctor. the doctor pulls the tube out - they throw some bandages over the wound, and you are done. How much anxiety would this cause you? For mom, controlling her anxiety levels has been a challenge but one that she has successfully done all summer. Each time a new procedure is introduced the anxiety level goes up - what do you expect, how long will it take, how will this change my life, will it hurt, how long to heal...the list goes on. So I would request your prayers for mom’s anxiety levels. There is enough right now while she goes through the prophylactic cranial radiation - radiation of the brain - but now we throw this right in the middle, "Hey, why don’t you stop by and we’ll yank out the tube"...Doesn’t sound like much fun, right? c 2013 bruceandbarb.blogspot.com

73


BlogBook

1.6. October

My prayer today is this: Lord, send your Holy Spirit to calm the beating of mom’s heart, and the racing of her mind, and bring her a tremendous peace - that peace which does, indeed, pass ALL of our understanding. Continue to grant her the courage and strength to face each new obstacle with the determination and spirit she had when this process began. Amen.

1.6 1.6.1

October October 1, 2010 (2010-10-01 21:15)

Today was the big day - the gastric tube came out. And for those of you wondering - yes, it hurts. No sedation, just a one-two-three YANK and out it comes. Mom was seeing stars but it happens so quickly. I’ll be monitoring the bandage for probably a good week or two while the hole magically heals on its own. What’s it like, you ask? It’s a hole - about the size of a normal pinky finger - you could probably stick a pencil in there if you wanted to but you would incur the wrath of Barbara. It should heal up within a week. It is very nice to have it out. Mom is sore and we have her sedated with some mild relaxing meds and she has been resting and sleeping on and off all afternoon. That’s about it. I’m just not in the mood to write much today. It’s been a long journey and its not over yet. I’ll write more later.

1.6.2

October 4, 2010 (2010-10-04 09:09)

Today we head to the hospital once again for more radiation. We have six more treatments and then hopefully that’s the last we’ll have to see of that. There is always the haunting question which will be answered each time Mom has an MRI: is it gone? We pray, we stay positive, and we hope. Dad had an eventful day yesterday. It is so vitally important for people with Alzheimer’s to try and create new memories. It’s so tough because short term memory loss is what we are battling.

Terri, Ryan and her daughter Crystal took Dad to a farm to see the animals and pick out pumpkins. Dad brought home a 13.5 pound pumpkin! They spent time with chickens, bunnies, goats and even 74

c 2013 bruceandbarb.blogspot.com


1.6. October

BlogBook

saw a camel. A trip to McDonald’s at the end was the perfect way to wrap things up. Dad had a great time as you can see from this photo! There is a song from the 80’s that was popular in church groups and for some reason one line continues to ring in my head lately: "I may not know what the future holds but I know who holds the future". That is so true and when you are walking in to the abyss of Alzheimer’s you really don’t know what to expect. We hear stories, we have friends who have experienced it - but each case seems to be different. We have no idea what bumps will appear in the road, what obstacles, or even if those evil flying monkeys will even appear! But what we do know is that Dad made a memory yesterday and with continued conversation and photos, we pray it is a memory he will continue to hold on to and treasure. Remember to go make a wonderful memory with your loved ones today. Your memories are one of the few things that no one can take from you.

1.6.3

October 5, 2010 (2010-10-05 21:18)

Today was a long day, but a good one. We started out around 11:15 this morning and got home around 6:30. Mom had her radiation treatment which went well as usual. We met with the doctor and he is pleased with how things are progressing. Mom is a little fixated on her weight - she is down to an incredible weight and everyone agrees she looks GREAT. But the nutritionist and the doctor were able to offer me some support this time. They fully agreed that mom can NOT be fixed on her weight - that she must focus on eating, on nutrition, and NOT loosing weight. Mom finally agreed but for those of us who have been in the weight battle before know how hard it is especially if you suddenly find yourself at a low weight - you want to keep it there. However, the doctors agree that if she gained a few pounds, it won’t be a bad thing. So we won’t shy away from butter or focus on counting calories. It’s tough when your stomach has shrunk. You’ll recall that mom just got her g-tube removed. Since she was on liquids for several months you can imagine that her stomach is now a little smaller and taking in whole foods is a challenge. But she’s fighting for her life and she knows it - she does great and will even take a little nudging from her loving son to "finish what’s on your plate". Dad had an EEG today. This is the second test the neurologist ordered. He had an MRI as well, last week. These tests will rule out silent strokes, blood clots, aneurysms, tumors and growths as possible reasons why Dad’s short term memory is slipping in what has been defined by his doctors as ’rapid decline’. Unfortunately those of us around him would agree and are working feverishly to help him remember the day-to-day activities. For those of you who continue to send dad cards and letters with memories, photos, stories, etc., we send a huge thank you. Some people have called Dad once a week to quickly talk to him. they understand that Dad doesn’t have much to say but that’s not the important part - it’s not about quantity, it’s about quality. And a phone call once a week to remind him he is loved goes a tremendous distance. Those stories of days gone by, those photos, those little snippets of memories are so valuable and so important. You are all a part of creating more positive memories for Dad. Thank you so much for your part. As we wait for the test results (which we will have next week) both Mom and I are torn. There is a small part of us that, although we want dad to be ok, are hoping there is a curable reason rather than Alzheimer’s. We picked up some books today at the neurologists’ and mom and I are reading all about nutrition, activities, exercise, etc. to benefit Dad. Thanks for your prayers, your thoughts, your support. Remember that you are all a part of our CaringTeam...and trust me - I know that sometimes you can forget how quickly time passes, you can too easily push the troubles of other people out of your mind for one more day, you can make an excuse of why you didn’t call last week: trust me, I know. I’ve been there. - but for those living with this disease, there isn’t time to sit back and think about what to do, or what to say, or how to approach it. You just do it. c 2013 bruceandbarb.blogspot.com

75


BlogBook

1.6. October

As I close I will introduce you to a man that I have called my Mentor for years. I met him in 1988 as I was called to minister in music at a small, Florida country church in Zellwood. His name was Pastor Harold. He taught me so much about life, and faith, and making the right decisions. And when I made the wrong ones, he still loved me. I allowed some time to pass before I sat down to write him a letter to tell him how much he meant to me - to touch base with him - to remind him that I cared and loved him. But by the time I finally got around to it, Pastor Harold had passed away. In fact, I found out about his passing almost 8 months after the fact. My heart is still so wrinkled over that. The point I’m trying to make here is this: no, neither Mom or Dad is not on their last legs - no one has told us that the end is near - they are both still young; but the fact is you just never know. You don’t - and I sure don’t want to know that any of you will live with the heartache that I do, now, over Pastor Harold. Oh I know that he knows - but I didn’t take the extra step to continually tell him. so love your family and friends - remind them daily that you love them. Don’t let an angel fly away untouched.

1.6.4

October 8, 2010 (2010-10-08 17:31)

Our morning started off with some positive news for some personal family business. We won’t get in to the details but suffice it to say, that God came through in a powerful way this morning!

Mom went for number 9 of ten cranial radiation treatments. Her last one will be this Monday. We took time earlier in the week to take a walk along Pewaukee lake and stop for ice cream. Today mom had a monitor placed on her heart for the weekend. The cardiologist said he detected a slight irregularity and would rather err on the side of caution.

Afterwards on the drive home I decided to take a short-cut and took them to Holy Hill to see the changing leaves. 76

c 2013 bruceandbarb.blogspot.com


1.6. October

1.6.5

BlogBook

October 8, 2010 (2010-10-08 21:58)

Sometimes you just have to not follow the plan. Sometimes you have to suddenly decide to take a left turn when you normally would keep going forward. That’s what we did today. The colors of the trees beckoned us towards small hill, which led to a bigger hill, which led to an even bigger one. We traveled around the beautiful Holy Hill area in Wisconsin and even stepped out to take some photos. It was a great time and one of those moments you’ll always remember. Mom had a heart monitor put on her for the weekend. The cardiologist heard a few ’interesting things’ when he listened to her heart so the monitor will record her heart for the next 48 hours. We’ll get the test results back in a few days. Mom’s feeling very tired but that is expected. We went through that when she had radiation the last time. Dad is doing fine. We try to keep talking about the days’ events so he will recall them. Once in awhile he does but for the most part he is forgetting some of the day-to-day activities that we do. Perhaps things will get better in the winter when we spend time indoors to keep warm, and not so many trips to the hospital. Enjoy the photos from our outdoor visit. Mom said today that she seems to be so much more aware of her surroundings and that she has learned not to take anything for granted. She said that the trees look so beautiful to her that she cannot stop watching them. It is nice to see her slow down to enjoy them.

[2010-10-08_14-31-21_798.jpg] Barb and Bruce enjoying a short walk through the woods

[2010-10-08_14-32-28_2.jpg] Barb and Bruce Fall 2010

[2010-10-08_14-32-50_435.jpg] They are so sweet, aren’t they??

[2010-10-08_14-35-07_217.jpg] I quick shot of Kurt.

[2010-10-08_14-39-38_553.jpg] Kicking and Throwing Leaves

c 2013 bruceandbarb.blogspot.com

77


BlogBook

1.6.6

1.6. October

October 11, 2010 (2010-10-11 19:50)

No more chemo. No more radiation. No more daily trips to the hospital (70 miles round trip). No more packing lunches. No more g-tube feeding. And no more cancer. Today the doctor declared mom to be cancer free. What a milestone in all of our lives. Just because we are cancer free today does not mean we are out of the woods and every three months we will go for tests to make sure it does not come back. If she is clear for 5 years, we are 100 % cancer free. Today was a fun day for dad. After a pretty rough day of not really being sure of where he was (we did a lot of driving around today) and with some short term issues this afternoon around the house, we had a GREAT blessing from his brother and my Uncle, Keith, in New Hampshire. Uncle Keith went to his high school reunion and sent photos of where he and dad grew up, where they played, where they picked up newspapers for their newspaper route, and where they bought 25 cent ice cream cones and sat on the sidewalk to eat them. Uncle Keith has been sending a lot of photos to help dad walk down memory lane. He does a pretty good job of recalling them. It’s also great that he has the opportunity to share that with his children, too. And some of the stories we have heard already should be written down! Our prayers are not over - the fight is not over - we have a rest while mom gains her strength (and her hair!). We are all hoping for a quiet winter. Blessings to you all. This blog will continue to keep you up to date on mom and we’ll be including more about dad’s Alzheimer’s as we travel down that road. And Mom, in case I have not told you lately, I’m very proud of you. You put up one hell of a fight and you won. So rest for the coming month or so - regain your strength. And as you and dad taught me don’t forget to stop and watch the clouds roll by once in awhile. We love you.

1.6.7

October 24, 2010 (2010-10-24 14:33)

There are always life lessons to be learned. They are all around us in the people we meet, the news reports, our neighbors, our co-workers, our situations, and our decisions. We may read an inspiring story in our email or hear a heartfelt song on the radio that almost moves us to action. But not quite. We know in our hearts that it would benefit us to take these life lessons to heart but we often fail to do that. Oh we think they are pretty, they are cute, they are special, and oh so true. But to take them to heart would require me to reflect on it and consider its application to my life. How many of us feel that it is true virtue to "do unto others as you would have done unto you" but in reality, don’t follow this simple rule of life? Sure is a great morale at the end of a heartbreaking email story though, isn’t it? I spent almost twenty years teaching private voice and piano lessons. Many times I would enhance the lesson with some stories or examples and hope that the student would internalize the experience and grow as a result. I can still remember some of the blank stares or the absent smiles. My grandfather had many wise comments to say (and wise cracks as well!). I often regret not writing down the things he said. But I do remember one of the many lessons he taught me: if you don’t grow with the experience it was a total waste of time. What decisions are you making lately that bring about change in yourself? It is tough to change because many times it involves admitting that we are at fault or lacking something. I’m just fine if I don’t change. But isn’t it really a waste of time, indeed a waste of a LIFEtime, if I don’t at least acknowledge the fact that I could be a better person today than I was yesterday? I know that I am a totally different person than who I was say, oh, five or six years ago. In fact, I like the person I am becoming BECAUSE of the decisions I have made. they were not all easy decisions. To be honest with you, the ones that make the biggest improvements in our lives are often the hardest ones to make...especially if it means breaking a long-running habit. What this has to do with mom’s cancer and dad’s Alzheimer’s I hope is pretty clear to you but in case it is not, I will spell it out for you. 78

c 2013 bruceandbarb.blogspot.com


1.7. November

BlogBook

Eat the right foods. Drink enough water. Don’t play the blame game (no one is responsible for your health but you) Stop smoking. Get some exercise once a day that increases your heart rate. And don’t forget to keep an eye on your own health - physical and mental. This body is the only one we get and although it has a tendency to break down it is still our responsibility to take care of it. If you have cancer in your family then take a pro-active stance for YOUR health with regular check-ups. If you have Alzheimer’s in the family take a pro-active stance for YOUR mental health and study it, learn about it, feed your brain and let it keep growing, and tell your doctor.

1.7 1.7.1

November November 13, 2010 (2010-11-13 01:07)

I took a little time away on a road trip but now I’m back. So I’ll update you on both mom and dad. Mom is doing well. The only symptom she is still having is hair loss from the cranial radiation. It’s not a 100 % guarantee it will grow back BUT we did spot what appears to be new hair sprouts coming in so we are holding on to hope in the hair department. Mom did develop some leg issues which we do not know if it is a result of the cancer, the treatments, or if it is unrelated. The good news is that they did an ultra sound on her leg to make sure it’s not a blood clot. I was there when they did the ultrasound and we’re happy to report that there are no blood clots. I then asked the nurse if it was going to be a girl or a boy and mom almost fell off the table laughing. I guess laughter is great medicine until it threatens bodily harm. Luckily she did not fall off the table and we all had a great laugh. A blog this time of year would not be complete without some solute to either Veterans, All Saints Day or Thanksgiving. Today I will solute our Veterans. My dad and my brother are veterans. They both served in times of war and they both have stories to tell. Some of those stories are forever hidden in the archives of Dad’s memories and access to them becomes more and more restricted as time goes by. But whether or not we hear all the stories does not matter. Both my father and my brother wrote a blank check to the United States at one time that included a payout of their life, if required. We thank God that they both arrived back on US soil safely and unharmed. Many are not so lucky. Have you ever had the chance to stare in to the eyes of a current soldier serving overseas? I know a young man who is stationed in Kandahar and every single day is faced with the possibility of losing his friends and his own life. I see his photos on Facebook and his eyes tell so many stories. I also have a dear friend from college serving as a physician assistant in Jalalabad and by the photos it appears she spends a lot of time in a helicopter. I look at her photos on Facebook as well and I see her brave face and think that I’m not sure I could be that brave. When she has a busy day or night it means that many of our service men and women were hurt. They count on her to save them and she rises to the occasion with so much pride and confidence. When I look at the photos of my two friends in Kandahar and Jalalabad, and of my brother when he was part of Desert Storm, and my father during the start of the Vietnam war – they have one thing in common. In their daily face-off with death – they continue to smile. Their smiles are beautiful. And now I watch both of my parents fighting their own wars. Mom has cancer and Dad has Alzheimer’s. They have not seen their enemy face-to-face and may never have that chance. Their enemy strikes at any time with a variety of assaults. But in the face of their enemies they can still round up a smile. So what brings a smile to your face today? What war are you battling right now that you can battle with a brave smile? Oh you don’t have to smile all the time. There are times of crying, shouting, c 2013 bruceandbarb.blogspot.com

79


BlogBook

1.7. November

screaming, sadness and frowning – but can you muster the strength today to show the world that, in the midst of your own war, in the heat of the battle and the rush of the fire-fight, you are still able to flash a smile?

1.7.2

November 20, 2010 (2010-11-20 12:44)

Someone casually mentioned the other day that now we can get on with a normal life now that chemo and radiation are behind us. Interesting - it was very apparent that this person, although they meant well, has had no dramatic event happen in their life that was life-changing. There is no normal. Now at first we can have a good laugh about it and makes jokes about none of us being normal and so on. But really, there is no normal. On Tuesday we go to the doctor for Mom’s scan. This is the first scan after treatment that will look for any signs of the cancer returning. This will happen every couple of month for the next five years. Once we reach five years she will truly be considered ’cancer free’. That isn’t exactly a normal life now, is it? when you are faced with your own mortality, and I mean face -to-face with death itself, you tend to have a different outlook on life. Things you took for granted you seem to appreciate that much more. But why do we need these traumatic events to do that? My father has always said to us that it is important to take time and watch the clouds roll by. When I was in college he would occasionally send me a note to urge me to sit under a tree and watch the clouds. Even today I have been known to pull over on the side of the road and stand under the pine trees and listen to the wind going through it for awhile. I would hate to wish any traumatic event on anyone. But I would love it if we could all just stop for a moment and focus on something we take for granted. The tree outside your window. The birds busy in the air preparing for winter. The snow falling and the miracle that is taking place under the blanket of snow, already preparing for spring. Sounds like a hallmark card or one of those chain emails, doesn’t it? But you know - sometimes you truly have to stop and smell the roses or you’ll miss it. We drive the back roads to the hospital on Tuesday. I know what the mood will be on the way to and from the test. Then we go back on Wednesday for the results and hope for the best but prepare for the worse. Whatever the results we will truly have a reason to be thankful not just on Thanksgiving but everyday because today is one more full day that we have with one another. One more chance to say I love you. One more chance to hug the ones you love. One more chance to smell the roses and one more chance to look up and watch the clouds roll by.

1.7.3

November 23, 2010 (2010-11-23 19:13)

What a weird day it was today - yesterday we were outside walking and enjoying 60+ degree weather and this morning, it dropped 40 degrees! We had ice on the driveway and snow flurries through out the day. We arrived at the hospital today for mom’s ct-scan to determine if the cancer is still gone or if it has decided to show up again. No results until tomorrow. We were immediately greeted by the wonderful volunteer coordinator at the main desk. She and mom say hi every single time we go there and today was no exception. This lady truly makes your day when you walk in the door. Always a smile, always a hello, and willing to point the way should you get lost. It is hard to find GREAT people and to find them that volunteer their time is even better. My grandmother, Dad’s mom, was a volunteer at the hospital in Florida for years. She received many awards and praises for her work. I always knew her as someone with a quick smile. She may have had a lot on her mind and thinking about this and that but she always knew when you needed a smile. And on those very rare days that it may have been difficult to smile, a simple hug and kiss on the cheek was all that was needed to brighten her day. I remember the smile of all of my grandparents and my 80

c 2013 bruceandbarb.blogspot.com


1.7. November

BlogBook

great aunts, and even my uncles and aunts. Such a simple thing to do, isn’t it? Smile. But so hard to find them these days. I like it when I throw people off. You walk down the hallway or in the store, and coming at you is someone with a lot on their mind, a grumpy old face, and an attitude to match. And then they make the mistake of looking at you for just a quick moment. That’s when I flash them a smile. Ruins their bad mood - I love it! and I never had to say anything. Sometimes you can hear them grumbling, "what you got to be smiling about, mister?" Hee hee hee So today’s test took about 30 minutes and we will go tomorrow for the results. A few shopping errands on the way there will help take our minds off of the current health issues for a bit. Smiles from the the volunteer lady and a few people on the walk down the hallway. A smile from the doctor’s nurses. And a smile from the nurse who takes mom’s blood pressure and asks her questions before the doctor comes in - and then the doctors’ smile. And then the news...we wait. We all wait. Waiting...but with a smile.

1.7.4

November 24, 2010 (2010-11-24 22:36)

You ever run through a yellow light just as it turns red and think, "Phew, I made it!"? Ever get to the gas station just before it closes in time to fill your tank? Phew, I made it. Ever drop something breakable and reach out and catch it right before it shatters in to a million pieces? Phew, I made it! We had a PHEW, I made it moment today. Mom’s tests came back clear. So far - cancer free! In fact, her blood work doesn’t even look typical of someone who went through what she did this summer. All her blood counts are within normal ranges. The next step is to remove the med-port, which will happen sometime in December. Then in midFebruary is her next CT scan. She will need to have a CT Scan every 3 months for the next five years. But for now - Phew, We Made It. God is good all the time. And all the time, God is good. Happy Thanksgiving everyone. And don’t forget to hug those you love.

1.7.5

November 29, 2010 (2010-11-29 00:10)

It is late on a Sunday night, almost midnight, and I have to get up early today to take dad to the neurologist. We finally have our follow-up meeting after dad had his MRI and CTscan to determine if there is an identifiable health issue or if we are confirming a diagnosis of Alzheimer’s. I have been doing some research on this disease and I feel like I’m getting a disease just by reading all the materials. My head aches after reading so many medical journals and reviews and blogs. It is all pretty overwhelming but they all end with the same line: there is no cure. Why does this happen to people? And what cosmic comedian thought it would be a good idea to inflict this type of illness on the people we love? What life elements attributed to this disease or is it just something you will get and nothing can stop it? The latest research involves an imaging of the brain at the very moment a memory is made. It is absolutely fascinating to consider. You can actually see the strands of protein being formed. Check out this article for yourself: http://www.msnbc.msn.com/id/31570902/ns/technology _and _science-science/ We know that nutrition plays an enormous role in keeping us healthy or making us unhealthy. We believe that mom’s strict diet during chemo and radiation have added to her recovery. Her blood test results this early in the process are NOT indicative of someone who just when through both treatments - at the same time. Her blood counts are within normal range with just a slight dip in potassium. In fact her oncologist was pretty surprised because the report ’should’ have showed a lot of lows in other areas. So what does Dad’s blood say about him? And what nutritional changes can we be making? That is one of the things we will discuss with the doctor. Unfortunately, most of them right now just seem to c 2013 bruceandbarb.blogspot.com

81


BlogBook

1.8. December

make the patient feel a little better but not actually GET better. And it makes those of us doing the care giving feel a lot better as well. But feel-good does not equal BE-good. I have met a lot of people who seem to have the answers but no one has the cure. Bits and pieces of information are important but what is the ultimate answer and what is the right path to choose? We don’t know yet but hope to find out. In the meantime we continue to support him, love him, and watch him. To make every day a special day and one to remember.

1.8 1.8.1

December December 3, 2010 (2010-12-03 23:24)

The Thyroid is located in the neck, around the area of the Adam’s apple. Since mom had radiation to the neck, it stands to reason that the thyroid may be affected. Mom has developed hypothyroidism which means her body is not making enough thyroid hormones. So she is on some medication that will hopefully kick-start her thyroid in to working property. Several symptoms occur with hypothyroidism and many times can go undetected for months because they can take awhile to appear. At first they may seem like small annoyances but after awhile they start to pile up. Feeling tired and weak is a typical symptom but because mom as on chemo and radiation at the same time, who knows what was caused by a thyroid taking a vacation and the treatments. Dry skin and brittle nails is another sign, mild memory issues, and not being able to stand cold. Mom has spent pretty much the entire time in the house under a few blankets and a space heater aimed at her. It is a mild obstacle and one that we will get through just fine. They’ll keep monitoring it and making adjustments as needed. We are hopeful the thyroid will come back in full function soon enough. A simple question for our readers: since you know someone going through cancer, are you now more likely to take better care of your health and avoid known cancer-causing habits and environments or do you just feel lucky?

1.8.2

December 8, 2010 (2010-12-08 19:49)

No big news to report on mom today. She is doing well but she’s cold a lot which is partially the treatments she went through and partially the decrease in her thyroid functioning. Her eating habits are improving thanks in part to her care-giver (yours truly) checking her plate at the end of each meal to make sure she eats the proteins and veggies. I know it must bug her when I do that but she thanks me for it each time. Dad has extensive psychological testing tomorrow afternoon. He will undergo a series of exams and tests to determine the level of his cognitive abilities. The results will tell us if he is truly experiencing Alzheimer’s or if this is dementia. Why would we want to know the difference? Dementia leads to Alzheimer’s and either way it’s a horrible thing to go through. But we need to know so we know how to treat it. And we know how to best care for Dad - that’s the most important thing. I have to be honest with you that it has been hard to write on this blog lately. One of those reasons is that I really honestly do not want to face Alzheimer’s. I want to wake up tomorrow and have it gone. I do not want to know what’s coming but it is too late because I have done all the reading. I studied Geriatrics at the University of South Florida and I want this to stay in those text books. I don’t want to see it - hear it - feel it. But above all - I don’t want my daddy to have it. Period. End of discussion. I wish it was that easy. We have no choice. We have to walk this journey and we have to walk it well, 82

c 2013 bruceandbarb.blogspot.com


1.8. December

BlogBook

with faith, with love and with hope. One of my favorite Biblical scenes is also one of my favorite songs from a musical. The musical is Jesus Christ, Superstar and the song is Gethsemane. Jesus goes off to the garden of Gethsemane to pray and this song is EXACTLY how I picture Jesus and exactly how I imagine he conversed with his Father. "I only want to say, if there is a way, take this cup away from, for I don’t want to taste it’s poison, feel it burn me...I don’t care, I’m not as sure...as when we started". If you get a chance check this video out of Steve Balsamo singing this song. When Andrew Lloyd Weber heard him, he WEPT. http://www.youtube.com/watch?v=3-rre _BXxC0 Dad - you are loved and through the power of love we will get through ANYthing that is thrown our way, ok?

1.8.3

December 14, 2010 (2010-12-14 13:46)

So Dad’s test is done. The results, although contradictory to the other doctors’ we have had, are pretty good. Dad definitely has Alzheimer’s but as to the particular stage, well that is still to be debated. His primary area of concern is memory. Remind you now that Alzheimer’s not only affects memory but also daily function, reasoning, logic, skills, and more. Dad did great on some of the tests but his short-term memory has difficulty. What is short-term memory? Thanks to Medicine.net for this great explanation:

Short-term memory: A system for temporarily storing and managing information required to carry out complex cognitive tasks such as learning, reasoning, and comprehension. Short-term memory is involved in the selection, initiation, and termination of information-processing functions such as encoding, storing, and retrieving data. c 2013 bruceandbarb.blogspot.com

83


BlogBook

1.8. December

One test of short-term memory is memory span, the number of items, usually words or numbers, that a person can hold onto and recall. In a typical test of memory span, an examiner reads a list of random numbers aloud at about the rate of one number per second. At the end of a sequence, the person being tested is asked to recall the items in order. The average memory span for normal adults is 7. Short-term memory is also termed recent or working memory. But how LONG are we talking? Is this a few hours, a few days, weeks or years? That is another issue for great debate and varies patient to patient. For Dad, it seems to span a few years. That is to say that he has difficulty recalling names and places about five years ago. Before that the memories are pretty much still intact. We will return to the Neurologist in a few weeks and hopefully then we will have at least enough answers to make sure we are doing the right type of care for this disease.

So this week the Senate passed the Alzheimer’s Breakthrough Act. We are not waiting on the House to pass it. What this does is very important not only to patients, but also to those of us in the sandwich generation – taking care of ourselves and our kids and our parents. It will provide a lot more resources and support. It also calls for doubling of the funding for 84

c 2013 bruceandbarb.blogspot.com


1.8. December

BlogBook

Alzheimer’s research at the National Institutes of Health (NIH) from $640 million to $1.3 billion. Why is that so important and necessary? Consider our aging society. Right now there are about 5 million living with this disease and by 2050 the number is expected to be around 16 million! If you want to encourage your Representative to vote for this Act, here is a link to do that. http://www.kintera.org/siteapps/advocacy /ActionItem.aspx?c=mmKXLbP8E &b=6390849

So now on to Mom. Mom has been feeling out of sorts the past couple of days. Dizzy, nausea, a general feeling of uneasiness, difficulty eating and feeling hungry a lot, and she has been fairly unstable walking and getting up. So we talked to the doctors and they said it sounds like she is dehydrated. So off to the supermarket I went (superhero cape tied on tightly!) in the freezing temperatures and snowstorm to get Gatorade. We also went to the ENT doctor today just to make sure she doesn’t have fluid on the ears – a common problem with people who experience the radiation that mom had to go through. Good news – no fluid. So we’ll give it another day or two and hopefully get her electrolytes up and running.

By the way, in case you are wondering, electrolytes are basically sodium. They are what maintains voltage in the cells so they can fire and send messages to parts of the body.

If we don’t see improvement in about 48-72 hours then it’s off to get her blood checked – again (this poor lady has been poked so many times with needles she looks like she’s been on crack). Then they can actually count things like sodium levels and we can be more specific in treatment. But for now it is all about fluids so we’ll force her to drink more fluids and keep eating her veggies. c 2013 bruceandbarb.blogspot.com

85


BlogBook

1.8. December

And thank you to those of you who continue to offer your support of me, as well. It is such a blessing, it truly is. Some people may not be able to understand why or how I do all this for both my parents. My answer is simple: why wouldn’t I? Afterall, the best things in life are not things at all.

1.8.4

December 24, 2010 (2010-12-26 00:24)

The night before Christmas we bundled up in our warm jackets, grabbed a few blankets for the truck, and headed to the County Fairgrounds to go see the Holiday Lights. It was a nice display. Admission was either $10 or a bag of groceries. We found two bags of groceries to bring from things we have had on the shelf and have not been eating. We know there are so many hungry people out there and we were happy to be able to do that.

Dad had a great time especially remembering holidays as a child and the lights. He was talking about how his mom used to put up the electric candles in all the windows every year. We drove around and looked at holiday lights. The lack of them is probably reflective of the economy. No money to spend on lights and decorations and no money to pay for the extra electric bills. 86

c 2013 bruceandbarb.blogspot.com


1.8. December

BlogBook

[2010-12-25_12-12-43_904.jpg] even the fish had a good Christmas!

Afterwards we went to my sisters’ house to say Merry Christmas to all the kids. It’s tough to visit because they have little colds so we had to stay in the truck and pass ’virtual hugs’ through the window. We are very thankful that Terri continues to explain to the kids all about cancer and the immune system. They do a good job of helping to keep Nana healthy. It was a quiet Christmas day at home, just the three of us. Lovely phone call from my brother then my sister. And Dad’s brother, Uncle Keith and his family called. That was great to speak with them. I made a turkey and some veggies and pies. I was proud that mom did a pretty good job of eating today. GO MOM! It’s so hard when the taste and smell of food just turns your stomach.

[2010-12-25_08-55-24_234.jpg] Mom got her snuggie!

Mom got a Snuggie and a few other gifts this year. We only had one Santa hat so each time it was your turn to have a photo taken, we threw the hat at you! The Snuggie works at helping to keep her warm. She is so cold all the time. But she used it today and it worked. We didn’t have the heat up near as high as we have had to.

[2010-12-25_08-54-16_184.jpg] Dad got a puzzle with BIG pieces

Dad got a puzzle with BIG pieces this time. The one we got him a few months ago had small pieces and that was pretty much a disaster. He got some other games and books to keep him busy and some nice shirts. All in all it was a nice quiet day. Mom is still dealing with the cold and it is very tough for her this year. I must admit the cold is being pretty brutal to me this year as well and my psoriatic arthritis is in full force this month. Mom has also been dealing with shakiness and trembling, a result of the radiation. We are told it will pass but for us it can’t pass soon enough. It really bothers her. c 2013 bruceandbarb.blogspot.com

87


BlogBook

1.8. December

Needless to say, I’m sure, but we are all so extra thankful to be with one another this Christmas. We have truly been exploring the true meaning of family and friends and Christ. We are thankful that through Him we receive our strength. We are thankful that God’s grace has been sufficient for all of us and that He continues to heal all of us. I am remembered that God will never lead us where His Grace cannot keep us and for that Grace we say, AMEN!

1.8.5

December 30, 2010 (2010-12-30 00:45)

Have you ever done something and then thought afterwards if that was really the right thing to do? Of course you have. Everyone has at one time or another. It only becomes a problem if the consequences of that action (or non-action) have a negative impact on our lives. So you will recall that after weeks of praying, researching, thinking and talking, Mom bravely opted for the cranial radiation. She was all done with radiation and chemo and then we had the option of doing preventative cranial radiation. This was to hopefully kill off any cancer cells that may have secretly migrated to the brain to hide out, which is what they often like to do. The arguments about the consequences of cranial radiation are about as varied as the opinions as to 88

c 2013 bruceandbarb.blogspot.com


1.8. December

BlogBook

whether or not to do it. Both patients and doctors are really on the fence about it. I spent many sleepless nights pawing through tons of research materials. I emailed doctors in several hospitals around the country and even one in Holland. We knew that memory and cognitive issues may come up as a result of this procedure. The bottom line is no one could tell for sure one way or another. So Mom bravely did it. And we think it was the right thing to do. Afterall, there was a 70 % chance the cancer would go to the brain and as of right now, the brain scans are 100 % clear! Praise God! Mom has been experiencing some shaky arms and hands. It’s been frustrating for her as it affects her ability to write and sometimes to do things in the kitchen. Lately she’s been having some minor, and I mean MINOR memory issues and some difficulty concentrating. A recent email she sent out had to be explained because the words and sentences just didn’t match up right. This is all so hard for Mom. We know what a tremendously strong woman she is and to have this happen to your body and mind is so hard. We see Dad going through some mind issues but he doesn’t know/remember that he has a disease called Alzheimer’s. For Mom, she is completely aware that she’s having some issues and that just adds to the frustration. We are confident this will pass and her doctors are confident that things will return to normal. We wish we could speak to someone who has had chemo and radiation at the same time and cranial radiation so we can share our experiences and feelings. At times this road is horribly quiet. We continue to work very hard to get Mom past this hurdle. We know we will pass over it and move on but when you are walking in the muck and the mire it just never feels like you’ll get to the other side.

As we end the year 2010 we have so much to be thankful for and then again so much that we would like to forget ever happened. But we cannot. It all continues to weave itself in to the fabric of who we are. I’m very proud of my mother. I don’t hear many kids say that about their parents but I’m not afraid to tell anyone I’m proud of BOTH my parents. Through all the hardships they have endured, when the odds were not in their favor and the cards were stacked against them they fought and came out winners. Next year will be 50 years of marriage for them and I could not be more proud. As you reflect on 2010 I pray that you will take a moment to tell the people in your life how proud you are that they are in your life and how proud you are of all that they have accomplished. Don’t delay. Do it now.

c 2013 bruceandbarb.blogspot.com

89


BlogBook

90

1.8. December

c 2013 bruceandbarb.blogspot.com


Chapter 2

2011 2.1 2.1.1

January January 8, 2011 (2011-01-08 15:00)

One of the goals of this website is to share information. The cost of medication is a nationwide crisis. Personally I have been off of my medication because I simply cannot afford it. Thankfully Mom was able to get some tremendous assistance to help with medical bills. With some pushing and research you can help

2.1.2

January 14, 2011 (2011-01-14 11:28)

Does anyone really understand Medicare? There is no possible way that one human being can wrap their brain around the entire concept and rules and regulations of Medicare. Now we’re in a donut hole? Oh joy - so let me get this straight. I paid for Medicare all these years when I worked and now that I need it, it isn’t there for me. Ok - just as long as I completely understand THAT fact then there really is not reason to sweat it out. Kurt’s been doing a lot of researching on prescription assistance and shopping around for the best prices. CVS Pharmacy so far seems to be the one most willing to take the time to help you find the best discounts. They didn’t mind weeding through the multiple discount programs we have signed up for. In fact, one lady took 20 minutes to find us a great deal. c 2013 bruceandbarb.blogspot.com

91


BlogBook

2.1. January

We want to share some of the websites that we use to get prescription assistance. There are more and the first place anyone wants to look is the manufacturer of the medication. Many times you can get up to 120 days worth shipped free to your doctor. So check the manufacturer first. I know Kurt would be more than happy to help anyone so you can email him at kurtdanskin@orcvirtual.com if you need help. http://www.togetherrxaccess.com/Tx/jsp/home.jsp (so far this seems to be the best. Of 6 programs researched at the Pharmacy, this one gave us an almost 80 % discount over any other program) http://www.rxassist.org/ http://www.pparx.org/ http://www.needymeds.org/ https://www.rxhope.com/home.aspx

2.1.3

January 19, 2011 (2011-01-19 08:08)

Dehydration is not a single event. It is a combination of particular events over a period of time that result in your body removing more liquid than it takes in. The serum part of the blood, the water, becomes less (obviously) and then the affects begin to pile on. Dry mouth, light headed feeling, dry skin, dry lips, sometimes a bluish tint to the lips. The list can get worse. What a complete bummer. Seriously. What’s worse is that when your body’s immune system has been compromised and while it heals, you can drink all the water you want and its not going to cure dehydration. Today we are braving the cold weather and snow to travel back to the doctor to get mom some IV fluids. I think I’ll increase her intake of vegetable juices. Seems that there are reports supporting that veggie and fruit juices may be a little better at helping you over the dehydration bump. It can’t hurt and its better than slugging 8 to 12 glasses of water a day. And let’s not talk about Gatorade - after one bottle of the stuff the gag reflect kicks in and its all over. Curious mouth sores have appeared as well which we will get checked out today. Probably due to the 92

c 2013 bruceandbarb.blogspot.com


2.1. January

BlogBook

dehydration but we’ll hopefully find out for sure today. We will hopefully have a few answers by the end of the day. You would think that with the number of people who have cancer and the number of treatments, that there would be one manual out there to tell you everything. No such thing.

2.1.4

January 20, 2011 (2011-01-20 22:47)

[GEDC0584.JPG] Dr Chris Hake and Mom; May 2010

So what we thought was going to be a quick in-and-out at the doctors yesterday ended up being a all-day event. They took some blood from mom and got her hooked up to IV fluids. They knew by just looking at her that she was dehydrated. I felt bad - honestly, I’m suppose to be watching her. I saw signs of it about two days earlier but I think I was in denial. Then by day two Mom was in denial. By day three - reality check and that’s when I called the doctor. Anyway - the good news is that we got her in there on time. They also noticed that her potassium levels were way low AGAIN. If you’ve been following along you know this has been a particular difficult area to control. But guess what? Our brilliant doctor, Chris Hake finally figured it out. It’s Mom’s medications. For YEARS mom has been on the very popular blood pressure medication hydrochlorathizide, also known as HCTZ. Well guess what. It seems that chemo and radiation can make positive changes in the body chemistry and Mom’s blood pressure has been affected for the better. It’s low! What does HCTZ do exactly? It lowers blood pressure, it removes water (a diuretic) AND, get this, it sucks up potassium! So by removing mom from HCTZ, she should no longer be loosing water and potassium. PHEW. What a journey. They are monitoring her very closely and we take her blood pressure every single day to be alert to any sudden changes. So what started out as something negative turned in to something positive. I adore Dr Hake and mom does, too. He practices what I try to practice everyday - let’s not look for problems, let’s look for opportunities. Thank you Dr Hake and Paula and the nursing staff in medical oncology. Once again you all proved to be angels walking among us.

2.1.5

January 23, 2011 (2011-01-23 21:01)

Mom, Dad and I sat and watched the Packers beat the Bears today. Great game and Mom and I made lots of noise during the game. Dad however, didn’t care much for the game. He played a computer c 2013 bruceandbarb.blogspot.com

93


BlogBook

2.1. January

game during the entire football game. One of the side affects of Alzheimer’s we don’t like to witness. Dad was on Namenda, otherwise known as Memantine. It is used to treat the symptoms of Alzheimer’s disease. Memantine is in a class of medications called NMDA receptor antagonists. It works by decreasing abnormal activity in the brain. Memantine can help people with Alzheimer’s disease to think more clearly and perform daily activities more easily, but it is not a cure and does not stop the progression of the disease. We took him off the medication for a variety of reasons about a month ago and now the question at hand is this: are the personality changes and short term memory changes we see in Dad a direct result of being off this medication? I have to be frank with everyone that I really do not buy the diagnosis that Dad received after a series of diagnostic tests. They reported that Dad has a very mild form of dementia and that it’s more likely Stage I Alzheimer’s. We had previous diagnosis of Stage III before this so why the large gap?

Based on what the Alzheimer’s Association has put out as to the Seven Stages of Alzheimer’s, I am absolutely convinced that this latest round of testing was a waste of time (and money). The Alzheimer’s Association tells us that Stage I is normal function. "The person does not experience any memory problems. An interview with a medical professional does not show any evidence of symptoms." (2010 ALZ.org) In fact, Stage II states that family and medical profession still can not detect any decline (2010 ALZ.org). In fact, Stage III does not define Dad either. What defines him is between Stage IV and Stage V. So why the big difference according to someone who is trained to test cognitive abilities? I don’t get it. I really don’t. So what is Stage IV and why am I convinced that Dad has Stage IV? Clearly he forgets recent events, he has difficulty recalling his own personal history, he has difficulty planning tasks, and he becomes moody and withdrawn especially in social settings. So why am I fixating on the stages? Of all the work that the ALZ Organization has done, they are the ones who can truly help us help Dad. We aren’t going to help him through medical diagnosis and more testing. Mom and I see the affects of this STUPID disease every single day. He does not recall Vietnam, of which he is a veteran. He performs certain acts here at home that he has no recollection of 2 or three hours later. My dad was a HUGE history-buff but not anymore. Recalling historical facts is very hard if not plain impossible. He does not recall how much time we spent going back and forth to the hospital for mom’s treatments this summer. He told me the other day that he thought we went about twice a week for a month. We actually traveled five days a week from May to October. That is not Stage I. Although the stages do overlap, I think Dad overlaps between Stage IV and Stage V. Now that I’m done with the technical side of it - let me tell you that if you are experiencing this horrible journey I would love for you to contact me. The only way we can help those most affected is through information sharing. 94

c 2013 bruceandbarb.blogspot.com


2.1. January

BlogBook

Dad is an amazing man. I don’t want you to get the idea that he sits there all day doing nothing. He and mom played a game of cards today. He engages in conversations and he helps out around the house with regular chores. I have always admired my father and always will and its because I love him so much that I keep trying to figure this whole thing out. We’ll put him back on the Namenda and see what happens. It’s not a cure but it may slow things down a bit. We appreciate your on-going prayers and letters and cards of support.

2.1.6

January 29, 2011 Dad’s 70th Birthday (2011-01-31 21:00)

What a tremendous time we had to celebrate Dad’s 70th birthday. Some of the grandkids were here as were Terri and her boyfriend, Ryan, and Jayden was able to be here for it. We had a great time talking and playing games and opening presents. Dad got a Wii for his birthday and they are loving it. They spent almost 3 hours playing golf and bowling today. I know the energy did Dad a lot of good. He seemed to be smiling more today and this afternoon. He was actually up to joking around a little bit today - something we haven’t seen in awhile. c 2013 bruceandbarb.blogspot.com

95


2.2. February

BlogBook [Alice+1.png] It’s KAYLE IN WONDERFUL!!!

LOL LOL LOL

Enjoy the photos - they speak for themselves.

[barb%252C+bruce%252C+kurt.JPG] No candles so we stuck a match in the cake and had to sing Happy Birthday really, really fast!

[terri%252C+ryan%252C+crystal%252C+bruce%252C+kayla%252C+barb%252C+kur t%252C+jayden.JPG] Terri, Ryan, Crystal, Kayla, Bruce, Barb, Kurt, Jayden

[GEDC4440.JPG] First introduction to the Wii gaming system

[Ryan%252C+Nana%252C+Kayla+and+Crystal.JPG] Think the kids are more excited about the Wii

2.2 2.2.1

February February 16, 2011 (2011-02-17 00:32)

It has been a little while since we’ve done an update and that usually means that things are going along pretty well. Still, that’s no excuse I suppose and I will try to remedy that in the future. 96

c 2013 bruceandbarb.blogspot.com


2.2. February

BlogBook

So a quick update: Kurt was sick for about a week with a cold and then he got a sinus infection but he managed to stay in his room the entire time with a can of Lysol spray close by his side. Unfortunately it did not prevent Mom from getting sick. She came down with a scratchy throat but it quickly developed in to a sinus infection so what we are assuming is that Kurt and Mom got an allergic reaction to the same thing while Dad has just been going through the motions of daily life untouched and undisturbed by any virus or bacteria. He has always been very resilient, something he inherited from his Mother as Grandma was hardly ever ill.

We are tiring of the weather here in Wisconsin. It has been brutally cold this year and we have found ourselves pretty much stranded indoors. Not a good place to be when you are accustomed to being active. I know Mom and Dad are both so anxious to get outside and walk. Today was a beautiful day though and they did manage to get out for a short walk even as Mom was suffering from the ill-effects of sinus issues. Still the walk did them good. We hope this weather is a sign of things to come now and that we have perhaps seen the last of the horrible, icy, cold, frozen Wisconsin winter for this year. c 2013 bruceandbarb.blogspot.com

97


BlogBook

2.2. February

We do want to put a plug in for Kurt’s upcoming concert. He is returning to the Kirk Church of Dunedin for a special benefit concert. He will be singing on stage with Terry Charles at the console of the Grand Duchess organ. If you are in the Dunedin, Florida area on March 5, you should stop by around 2:00 p.m. for this great concert. The cost is $5.00 at the door and you may want to plan on arriving early to get good seats! We did receive word this past week that Dad’s cousin, Sylvia Longua, passed from this life into life eternal. She and Mom spoke frequently and even did games and crafts long-distance over the years. Dad remembers many wonderful outings and family events with cousin Sylvia. She always greeted you with a huge, warm smile and a great hug. She had a heart larger than life itself and we will miss her dearly. Our thoughts and prayers are with her husband, Bill, in this time of transition.

We also want to mention that if you are looking for a giving opportunity, that we have given to a wonderful cause we think you may like as well. Pastor Vicki Gladding (www.vgladding.blogspot.com) (www.vickigladding.org) She will be traveling this summer to teach in a Christian College and out in to the communities in Kenya and Rwanda. If God places it on your heart to send a tax deductible gift to help her finance this trip, please visit the link below.

Your help is needed TODAY! Please donate to support the Africa Mission!

Visit http://www.firstgiving.com/fundraiser/vicki-gladding/emmanuel-conn ections 98

c 2013 bruceandbarb.blogspot.com


2.2. February

2.2.2

BlogBook

February 21, 2011 (2011-02-21 18:21)

I took Dad to the eye doctor today because he was complaining that he could not see out the left side of his left eye. So glad we were able to get him in today to see Dr. Timothy Seifert. Dad has a detached retina and if left untouched, will cause complete blindness in that eye. We will take him to the surgeon in the morning. They still want me to fly out on Wednesday and Terri is all set to do whatever is necessary to help out. A retinal detachment occurs when the retina is pulled away from its normal position in the back of the eye. The retina sends visual images to the brain through the optic nerve. When detachment occurs, vision is blurred. A detached retina is a very serious problem that almost always causes blindness unless it is treated. The retina normally lies smoothly and firmly against the inside back wall of the eyeball and functions much like the film in the back of a camera. Millions of light-sensitive retinal cells receive optical images, instantly "develop" them, and send them on to the brain to be seen. If any part of the retina is lifted or pulled from its normal position, it is considered detached and will cause some vision loss. The vitreous is the clear collagen gel that fills the back of the eye between the retina and the lens. As we get older the vitreous may pull away from its attachment to the retina at the back of the eye. Usually the vitreous separates from the retina without causing a problem. But sometimes the vitreous pulls hard enough to tear the retina in one or more places. Fluid may pass through the retinal tear and lift the retina off the back of the eye like wallpaper can peel off a wall. Retinal detachment can occur at any age, but it is more common in midlife and later. Conditions that can increase the chance of a retinal detachment include nearsightedness; previous cataract surgery; glaucoma; severe trauma; previous retinal detachment in your other eye; family history of retinal detachment; or weak areas in your retina that can be seen by your ophthalmologist. Symptoms Floaters Gray curtain or veil moving across your field of vision The symptoms described above may not necessarily mean that you have a detached retina. However, if you experience one or more of these symptoms, contact your eye doctor for a complete exam. Treatment Retinal tears will usually need to be treated with laser surgery or cryotherapy (freezing), to seal the retina to the back wall of the eye again. These treatments cause little or no discomfort and may be performed in your ophthalmologist’s office. This treatment will usually prevent progression to a retinal detachment. Occasionally retinal tears are watched without treatment. Retinal detachments may require surgery to return the retina to its proper position in the back of the eye. There are several ways to fix a detached retina. The decision of which type of surgery and anesthesia (local or general) to use depends upon the characteristics of the retinal detachment. In each of the following methods, your ophthalmologist will locate any retinal tears and use laser surgery or cryotherapy (freezing) around them to seal the tear. Pneumatic retinopexy describes the injection of a gas bubble into the vitreous space inside the eye enabling the gas bubble to push the retinal tear back against the wall of the eye and close the tear. Laser or cryo-surgery is used to secure the retina to the eye wall around the retinal tear. Your ophthalmologist will ask you to maintain a certain head position for several days. The gas bubble will gradually disappear. Sometimes this procedure can be done in the ophthalmologist’s office. A scleral buckle or flexible band, which is probably the procedure that will be used for Dad, is placed around the equator of the eye to counterbalance any force pulling the retina out of place. Often the ophthalmologist will drain the fluid from under the detached retina allowing the retina to return back to its normal position against the back wall of the eye. This procedure is performed in the operating room, usually on an outpatient basis. Vitrectomy may be necessary to remove any vitreous gel which is pulling on the retina. This may also c 2013 bruceandbarb.blogspot.com

99


BlogBook

2.2. February

be necessary if the vitreous is to be replaced with a gas bubble. Your body’s own fluids will gradually replace this gas bubble, but the vitreous gel does not return. Sometimes a vitrectomy may be combined with a scleral buckle. After Surgery You can expect some discomfort after retinal surgery. Your ophthalmologist will prescribe any necessary medications for you and advise you when to resume normal activity. You will need to wear an eye patch for a short time. If a gas bubble was placed in the eye, your ophthalmologist may recommend that you keep your head in special positions for a time. A change of glasses may be necessary after the retina has been reattached. What Are The Risks Of Surgery? Any surgery has risks; however, an untreated retinal detachment will usually result in permanent severe vision loss or blindness. Some of these surgical risks include infection; bleeding; high pressure inside the eye; or cataract. Most retinal detachment surgery is successful, although a second operation is sometimes needed. If the retina cannot be reattached, the eye will continue to lose sight and ultimately become blind. Will Your Vision Improve? Vision may take many months to improve and in some cases may never fully return. Unfortunately, some patients, particularly those with chronic retinal detachment, do not recover any vision. The more severe the detachment, and the longer it has been present, the less vision may be expected to return. For this reason, it is very important to see your ophthalmologist at the first sign of trouble.

2.2.3

February 23, 2011 (2011-02-23 05:23)

Well it is 5:00 a.m and Dad, Mom and Terri just left to take dad to surgery today. He will have a retinal re-attachment surgery on his left eye, an emergency process to hopefully restore or at least maintain the sight in his left eye. This occured quickly over the past two weeks. It started out with Dad feeling like something was in his eye for a day and seeing ’floaters’.

As you age, your vitreous humor may change in consistency and shrink or become more liquid. Eventually, the vitreous may sag and separate from the surface of the retina a common condition called posterior vitreous detachment (PVD), or vitreous collapse. As the vitreous separates or peels off the retina, it may tug on the retina with enough force to create a retinal tear. This is where we are now. So dad will have the surgery this morning. They will re-attach the retina, place what is known as a Scleral Buckling. Scleral buckling is a common surgical treatment for a detached retina. This procedure is done under local anesthesia, and you will also be given a mild sedative. Your eye will be completely numbed and you will remain comfortable during your surgical experience. Your surgeon will first treat the tear or detachment with cryopexy. Depending on the severity of your detachment, he will then enclose all or part of the sclera – the white part of your eye, with a silicone band or buckle. This buckle will be stitched to the sclera and will hold the retina in place. Usually, the buckle will permanently remain in your eye. 100

c 2013 bruceandbarb.blogspot.com


2.3. March

BlogBook

The doctor will insert a gas bubble in to Dad’s eye. This will actually serve to push the retina in to place and keep it there during healing. Lasers will secure the retina but the gas bubble is like a bandaid until complete healing occurs. during the healing process, from 3-4 weeks, dad will need to keep his head down to the floor at all times. You can imagine this will be a challenge! We went to a store yesterday and rented some special equipment to help him sit during the days, eat, and sleep in that position. The chair comes with a mirror so that he can watch tv and interact with people. The bed unit is similar but he will sleep on his stomach. Fortunately Dad has been a tummy-sleeper all his life so he should be able to get some rest even with his face stuck in a vice every night. My sister is an angel. She is raising 4 kids, has a full-time job, and works very hard. She and her boyfriend Ryan are a HUGE blessing and I can’t thank them enough.

2.2.4

February 24, 2011 (2011-02-24 21:23)

A huge round of applause for Terri, Ryan and Jayden. they have all gone out of their way to assist Mom and Dad the past couple of days while I’m away. Dad is recovering slowly from surgery. the problem is that at this stage of the game he has short term memory issues and forgets how important it is to keep his head down. He has to keep facing the floor for the eye to mend properly but he is fighting that almost on the hour. Mom is trying to come up with as many ways as possible to remind him but it is so hard.

2.3 2.3.1

March March 17, 2011 (2011-03-17 16:34)

Mom had a CT Scan on the 14th and results came back yesterday. Clean report. In fact, her blood work does not look like she ever had chemo or radiation! We could not be more excited and more proud of the work she has done! Dad’s eye has healed and the retina has now fully reattached itself. We were able to return the "ugly chair" that he had to sit in for three weeks. His eye is still blurry but we are hopeful that his sight will return in the coming weeks. He could not be happier that he doesn’t have to have his head down any more! The weather is improving here and we hope it is where you are as well. We are sure that another spring snow storm will fall upon us before it is all over but knowing that spring and summer are getting closer does us all well. c 2013 bruceandbarb.blogspot.com

101


BlogBook

2.3.2

2.3. March

Pitter Patter of Little Feet (2011-03-30 17:36)

What a fun two days it has been. Well we did it - ok, Kurt and sister-in-law Linda did it. They have been in cahoots for awhile now planning this out. Yesterday Kurt said he would be gone for the day and actually drove to Indiana to meet Linda half-way where they transferred a big surprise from Linda’s car to Kurt’s.

We got a dog. she is a full-bred bishon, white, female, 5 years old. and just adorable! her name is Rita. We went to the doctor today. Here is Rita’s doctor, Eli, with his two dogs...obviously they are not as brilliant as Rita is but they’ll do in a pinch! (Rita made me type that!). He’s really great and gentle and according to Rita he has warm hands which is always appreciated. He did a great examination and she passed with flying colors.

Here is a picture of the GREAT staff they have. They didn’t pose for us here but that would have been nice. This is a photo from their website. If you need a Vet in this area you have to look them up. amazing people! www.pewaukeeveterinaryservice.com So now Rita is home and resting. she is a GREAT dog. We have had absolutley no issues with her. She loves to ride in the car but sits in her own seat and doesn’t try to run around or get in your lap. She is content. We’re off to the beauty salon and puppy day spa on Saturday for a morning workout, bathe, trim, nails, 102

c 2013 bruceandbarb.blogspot.com


2.3. March

BlogBook

etc. She’s looking forward to it but we’re looking forward to that new-doggie smell! so here she is:

We’ll publish more later. She’s a bit camera shy right now! c 2013 bruceandbarb.blogspot.com

103


BlogBook

2.4 2.4.1

2.4. April

April Update (2011-04-10 13:57)

As you can imagine, things have been running pretty smoothly around here lately. All of Mom’s tests continue to come back negative for cancer. She continues to exercise daily and is doing a great job of maintaining her weight. Dad is doing well. His fuse is pretty short these days and he seems to get frustrated very quickly. We have a follow-up appointment later this month to see if there is anything we can do to help with these sudden mood changes. It isn’t fun and it cannot be fun for him, either. We struggle on a daily basis with participation and conversation. he still sticks to his morning and noontime rituals which is a great thing to have. Rita has been a tremendous source of companionship and joy. She is a great dog and doesn’t get in to things she shouldn’t. She loves to play but only for short periods of time and then is content to lay down. Mom, Dad and Rita take a couple of walks everyday not that the weather is nice. It is nice to see them walking again. They have missed that during the cold, icy winter months.

Rita had a nice time at the beauty parlor and spa. She received a nice warm bath, her nails were worked on and she got a nice cut. She opted for a nice tight cut this time but we’ll convince her to grow it out a little more next time. Not so sure she’s keen on the bow in her hair.

2.4.2

2.5 2.5.1

(2011-04-25 00:19)

May May 9, 2011 (2011-05-09 22:58)

Wow has it been awhile since we’ve posted here! Everything has been running pretty smooth around here. Having the new dog, Rita, helps a LOT. The doctor has actually prescribed her as a therapeutic dog for both mom and dad. 104

c 2013 bruceandbarb.blogspot.com


2.5. May

BlogBook

So we took mom to the eye doctor today. She’s been having a little bit of an issue. Now you may recall early on in the cancer treatments they said that eye and ear issues can occur when doing so much radiation to the neck and brain. Well the hearing has suffered some loss and today we discovered she has a choroidal nevus. Sounds pretty serious, right? Well actually right now its not - it’s literally a freckle on the inside of the eyeball. Weird, eh? An actual freckle. But like all freckles on your skin you have to watch them because if they start to grow then we have a problem. We have a photo of Mom’s freckle...I think we’ll call it....Chuck....So anyway -we have a photo of Chuck a year ago and one today and he hasn’t changed or moved or built a garden or made any additions to his house. NOTHING. So that’s really good. We’ll take another photo of Chuck in about three months and keep doing that for a year or two until we can establish that Chuck is not very active. Oh - here’s a photo of Chuck. You’ll see the bright spot in the middle, looks like the sun - well Chuck is to the right of that. Looks pretty big and as you can see, if Chuck decides to moves west one block, he’ll block moms’ vision and then we’ll have to ask Chuck to move out. Now, if you look north-west of Chuck, you may see what appears to be a small planet...at about 11 o’clock – see it? Nope - not that...there you go...that one there. yep - that’s what we’re going to be watching even closer than Chuck. That my friends is a hemorrhage. Not an issue now BUT if the little bugger decides he wants to let off some stream and start to bleed, than we’ll have some vision problems for sure. So we have these two things to watch. Chuck the Freckle, and then a little planet we’ll call...Hamlet...not sure why - it’s the name that just came to me. Hamlet the Hemorrhage. So there you have it, folks. The continuing saga of a tough lady named Barbara, fighting cancer and all that it has to throw at her - and she’s kicking its butt!

c 2013 bruceandbarb.blogspot.com

105


BlogBook

2.5.2

2.5. May

May 20, 2011 (2011-05-20 17:27)

Living with Alzheimer’s is a difficult journey. What is unclear is how difficult it is for the person who has the disease. For those who are living and caring for the one afflicted - there is a lot of stress. It is difficult watching someone go down this path. We don’t understand what is going on. There is a disconnect in the brain, a lack of apathy, a lack of desire to participate in conversation, a lack of attention, and a lack of memory especially immediate situations. In the coming months my mother and I will be looking more closely at what resources are available through the South Eastern Wisconsin Alzheimer’s Association. We have signed up once again for the walk. Last year we missed it due to cancer treatments but this year we are hitting it full force. Through my company, Office Remote Control, LLC, we have started a team and we are hoping that many people will go online and join our team. You can pledge money to help us reach our goal of $3500 by October 1. If you are in the area we hope you will join us for the walk. 106

c 2013 bruceandbarb.blogspot.com


2.6. June

BlogBook

Neither Mom or I have ever been big on fund raising events. Through the years we have donated and given, supported and participated in some but admittedly not as many as we should. Now we need answers and we need support and so we not only look to the Association but we also look at ways we can help support them. If you visit this link CLICK HERE, you can choose ’register’ and then when it asks you, please join the ORCVirtual team. That’s our team and we want people to join us. Pledge as much as you are led - it could be five dollars, or fifty, or 500 - the amount does not matter, it truly doesn’t. what matters is that you are taking a leap of faith with us - joining with us as we seek answers. Would you please prayerfully consider joining the ORCVirtual team as we gear up for the October 1, 2011 walk for Alzheimer’s. I am committing to be there. Mom and Dad are committed. We are committed to helping raise funds and we are all committed to seeing our goal come to fruition. Thank you for taking the time to read this and consider this worthy cause. Only together are we able to get through this. Only together can we possibly shed a light on this horribly dark and lonely disease. We have to have hope because many days we have nothing else.

2.6 2.6.1

June Walk To End Alzheimer’s (2011-06-07 19:18)

Most of you are aware that this past year has been a difficult journey for our family as Alzheimer’s disease continues to battle against my father every moment of every day. There is not a moment that goes by that we are not reminded of this ugly disease head on. But we know there are people who are trying to make a difference. I want to extend to each of you an invitation to join my team. You may not live near here and may not be able to join us on the actual walk, but knowing that you are on the team and praying for us and thinking about us is so important. IF you are lead to give money to help us make our goal that’s great but if not – we know you are joining us in spirit. Please strongly consider joining the Office Remote Control (my company) team as we Walk To End Alzheimer’s this coming fall. [GEDC0578.JPG] Bruce and Barb, one year ago - right before Mom started her chemo and radiation. They celebrate 50 years this September!

Thank you for considering. You are all a blessing. c 2013 bruceandbarb.blogspot.com

107


BlogBook

2.6. June

Here is a link to join my team. http://2011walktoendalzheimers.kintera.org/faf/search/searchTeamPart .asp?ievent=451249 &team=4195072 Click “join our team” and take a five minutes to complete the online form. I thank you, my mother thanks you, and my father appreciates EVERY step each of us takes. Thank you. "With an aging baby boomer generation, the Alzheimer’s disease crisis will continue to touch more lives and create an unsustainable fiscal toll on the nation’s healthcare system – particularly Medicare and Medicaid," said William Thies, PhD, Chief Medical and Scientific Officer at the Alzheimer’s Association.

2.6.2

(2011-06-11 23:39)

2.6.3

Another CT Scan (2011-06-12 21:43)

So tomorrow morning we get up early and head back to the hospital for another CT Scan. These occur every 3 months but if the results from this are negative than we may be able to space them out to every 6 months. You’ll recall that this type of cancer is aggressive but they don’t know enough about it to say for certain if it is fully gone. There are no symptoms but there weren’t any the first time around either.

2.6.4

Update: June 15, 2011 (2011-06-15 23:57)

A successful trip to the doctor this week for mom. Her CT Scan came back clean as can be! absolutely no signs of cancer or even that she’s been through treatments! WAHOO!!! Very good news. She doesn’t have to have the next CT Scan until October. They are telling us that once we can get past the 2 year 108

c 2013 bruceandbarb.blogspot.com


2.7. November

BlogBook

mark the chances of it returning are greatly reduced. That’s exciting news for sure.

Mom’s hair is starting to come back very nicely. Still a few bare spots but we figure in another month we’ll get her to the hair dresser and she’ll be like new again. It’s getting tiring wearing that hat especially on their daily walks. Mom, Dad and the dog, Rita, are up to 2 miles of walking a day. Good job, Mom! Now we’re all focused on the Alzheimer’s Walk.

2.7 2.7.1

November Update on Mom and Dad (2011-11-10 22:30)

We managed to get mom and dad moved in to a senior living place about a month ago. They seem to really like it there. They have multiple activities they can be involved with which helps keep them social. Lots of shops nearby and great places to walk. There’s a path right from their back door that leads around a church and they walk Rita every day. We are hopeful that some of the issues mom has been having lately are NOT a result of the brain radiation but of something else that is easily managed. Right now she tends to list to one side occasionally and she is having some vision problems. She has also been having difficulty getting some words out and it frustrates her tremendously. Today while visiting with me she showed me that even when she hand writes something she cannot read what it is. She wrote something and showed me - and I have no clue what she was trying to write. I still remember about one solid month of very little sleep for me while I researched the pros and cons of prophylactic brain radiation. As you may or may not recall they doctors strongly suggested it because, although they do not know much at all about this form of cancer, they know that it acts a lot like certain lung cancers, especially the ones that like to hide out in the brain during treatment. Because treatment does not get past the blood barrier to the brain, radiation to the brain will typically kill any hidden cells. The risks included vision and hearing issues and a possibility that it could "ignite" dementia. I truly don’t think its dementia primarily due to the fact that she is completely aware of what’s going on and aware of her current issues. A trip to the doctor next week will hopefully help us gain insight. c 2013 bruceandbarb.blogspot.com

109


BlogBook

2.7. November

This journey never ends. Although I have taken several months off of blog updates the fact remains that Mom is a cancer patient. Although there is no sign of the cancer, she is still a cancer patient and lives every day with a little bit of uncertainty. Did we really beat this cancer? Is it truly gone or is it hiding out? Will we experience consequences of so much radiation and chemo even though she responded amazingly well to the treatments? The list goes on. But one thing stands: my mother’s strength.

2.7.2

The Fight Resumes (2011-11-12 01:43)

This morning I drove to mom and dad’s house and greeted them as they pulled in from running some errands. Rita met them with the usual glee and vigor and led Mom out for a brief walk down the path outside. We helped Dad unload some groceries and were almost done when Mom came back in. I sat Mom down and told her that I talked to her primary doctor about the physical issues she’s been having and that the doctor wanted her to go to the ER and get a CT scan. This was to rule out a stroke as most of mom’s symptoms were indicative of a stroke. Within a few hours we had our test results back and confirmed. No stroke - but a significantly sized tumor on her brain. The look of shock on Mom’s face is still burned in to my mind. I held her hand tightly. Dad was at home with the dog because we all assumed this would be a routine doctor visit. Since we were at the emergency room of a different hospital than our usual one we immediately began making preparations to have mom transported to her doctors and her hospital. We assumed I would transport her. We assumed wrong. Because mom’s blood pressure had become elevated it was critical that we decrease and stabilize her pressure before transport. Any drastic change could cause major conflicts with the tumor and blood and swelling had already begun to gather around the tumor. Mom responded really well to the medication and her blood pressure dropped to normal ranges. We met up a few hours later in room 2013 where we were met an hour later by an oncologist. He delivered the news to us. Yes there is a significantly sized tumor. Yes it’s probably causing all your symptoms. We need to run more tests and begin preparing you for brain surgery to remove the tumor. If you choose not to have the surgery - you will have approximately 2 months to live.... Just like that...no "envelope please", no drum roll...but come on...how do you deliver that kind of news? He did it the best way he knew how. Just say it... We don’t know what type of tumor - don’t know if its cancer or not - in fact, we are not 100 % sure it is completely operable although the odds are in our favor. Mom is resting well tonight. Dad is in a cot about 5 feet from the foot of her bed. The lights are dimmed and the floor and staff are quiet. I’m in the family lounge with Robb doing research and preparing our questions for the surgeon in the morning. The coffee isn’t the best - smells, well, old. I had a cup of chicken broth which actually tasted really good but it was basically a cup of salt. We will pause throughout the evening to play scrabble. The nurses are watching out for us. We don’t plan on sleeping because we have lots of questions. Terri is back home but will be here tomorrow to stay the night so Robb and I can return home for a nights’ sleep. We will take turns being here with Mom with the goal of never leaving her. We will care for Dad and get him home to shower and nap and then return to the side of his bride of 50 years. Their love is still as strong as ever. Mom is tough. You can see the fight in her eyes. She’s angry and wants to fight. She will fight. She will win. 110

c 2013 bruceandbarb.blogspot.com


2.7. November

2.7.3

BlogBook

The Night Before Surgery (2011-11-13 00:45)

we met with the neuro-surgeon today. Actually, Mom, Dad, Terri, and Crystal met with her, i was on speakerphone as I had to step out for a bit. The surgeon is optimistic. Optimism is important and it is always apprecaited. She explained to us how the suurgery would proceed, the steps she would take and what she expets tofind. They will remove he tumor then she will be in ICU to heal. Tey have seen healings as quick as three days so

2.7.4

Turn My Grief to Grace (2011-11-13 20:59)

2.7.5

(2011-11-14 23:18)

Mom is still tough. She still wants to fight. I need to keep it simple. Sometimes it IS possible to share news without going in to great detail – without trying to solicit a moment or a response or an emotion. So here it is: simple. The doctors performed surgery on Sunday morning to remove a 3.5 mm X 5.7 mm tumor from Mom’s brain. It was sitting on the outer edge of the brain placing pressure on both the skull and the occipital lobe (which controls sight). They spent 12 hours working to get the swelling down and once it did they went it. Four hours later we got the news that the surgery was successful. Mom spent 48 hours in ICU and then was transferred to the 4th floor – neurology. The work now begins over the next 2 to three days to map if any of her brain was damaged by the tumor or the surgery. Many of you have asked how I am doing and that moves me every time. I will write more – I promise myself, and you, and my mom and dad.

2.7.6

(2011-11-15 23:46)

I am blessed to be a witness to God’s grace and mercy poured out in abundance. It is rare in this life that we see these moments even when we are intentionally seeking them out. I was not seeking them but i found them, experienced them first-hand, and embraced them. At each turn during the past couple of days - ever since we first took Mom to the emergency room on Friday - God’s mercy and grace have been extended to Mom, Dad, and their kids and loved ones. The preliminary test results of the tumor that was removed from mom’s brain are back: cancer. It really isn’t a surprise but we know what we are facing now. We have a name and it happens to be the same exact name we had two years ago: neo endocrine tumor. Rare and aggressive, we will treat this one just like the other one: radiation. We will treat it quickly and heavily. We will fight this and we will continue to win. Mom is a fighter and she is telling everyone that we will kick this. We will meet with the providers tomorrow and talk about our plan of action. She will be evaluated and we will establish an action plan to get her back home. And we will continue seeing and feeling mercy and grace at every corner. We hope as Christians to be able to see some type of good thing come from every experience, bad or good. we hope that somehow, someone will be a witness to the mercy and grace-full-ness of God even in the midst of sorrow, of grief, of pain...I have seen it and know it is even happening right now in spite of our humanity. I do not believe that God causes bad things to happen. I do believe that God can and does work with all situations and works them out to good. c 2013 bruceandbarb.blogspot.com

111


BlogBook

2.7.7

2.7. November

CyberKnife: Futuristic Treatment NOW (2011-11-29 18:12)

CyberKnife is robotic radiosurgery which offers a non-invasive alternative to surgery for the treatment of both cancerous and non-cancerous tumors anywhere in the body. It delivers beams of high dose radiation to tumors with extreme accuracy. An expert team of radiation oncologists, specialized surgeons, radiation therapists, medical physicist and a specialized oncology nurse care coordinator all collaborate together. Mom is in great hands with the people at Waukesha Memorial Hospital. The radiologist, Doctor Jones, was surprised as we were to find that the cancer had waited this long to come back. We would have expected this at about two or 3 months out but not 13 months. Another testament to the strength and aggressive nature of neoendocrine carcinoma. The tumor in mom’s brain grew fast (app 1.2 mm per week) and would have killed her by Christmas had we not caught it two weeks ago. Mom will have another MRI and CTScan next week. The team of specialists will actually place those images together and map out the exact coordinates for the cyberknife. During the cyberknife the system will be taking pictures all along the way to track progress.

The procedure is painless. She will need to wear another soft-plastic mask to keep her head perfectly still. The mast will be secured to the table for about an hour and a half. Fortunately we will only do this three times. That’s all – no multiple weeks, 5-day-a-week visits to radiation. Three days is all it will take. 112

c 2013 bruceandbarb.blogspot.com


2.8. December

BlogBook

Dr Jones is very positive about the outcome. Mom is strong and her will to fight is what’s going to continue getting her through this. You may be asking what we asked: what was the point of the radiation treatments to the brain that mom had to endure at the end of her regular chemo and radiation? We knew at that time that the studies showed that with no radiation to the brain the patient has a 76 % chance of it occurring in the brain. But with radiation the chances reduce to about 10 %. Not bad odds – obviously the odds were against us BUT we got this quickly and we are on the road to success. Several side effects are still occurring and we do not have definitive answers as to their cause. Mom is experiencing some day-time hallucinations expected to be a side effect of the medication. They occur frequently throughout the day but are not scary nor do they cause her anxiety. She has seen people, animals, even a team of white horses going past their window (they live on the second floor, mind you). This is a little unsettling but we are assured that these should subside as the medication is decreased. Mom’s eyesight has been affected the most. A majority of the damage occurred in the last two weeks the tumor was in her brain. She has limited field of vision in the right eye with floaters and several dark spots. Sometimes it is difficult for her to reach for objects to her right without turning almost past the object in order to see it. She has no pain or discomfort – it is just annoying. We don’t anticipate mom being able to return to driving for at least 8 to ten months and there is the possibility that she may never be able to drive again. Surprisingly enough (or not so much, for Mom) this does not bother her. She is happy to be alive and has been overcome with emotions including joy, happiness and an overall sense of peace.

2.8 2.8.1

December Mixed News Day (2011-12-07 00:02)

The day started with a cup of coffee. Not much was said about the day ahead just the fact that it would be a long day. Robb and I made the drive to pick up Mom and Dad. Mom looked great and she wore her teal hat to hide the scar on the back of her head. She thought it might startle people so she wanted to cover it up, taking a little extra time to weave a few of the front pieces out the front so people would see that she does, indeed, have hair. It’s cute. She was so proud this morning to show everyone that she could walk around the apartment without the walker but she knew I wouldn’t be especially happy. She was right. I told her it was great and if she insisted than at least use a cane just in case. She agreed that she is probably to “wobbly” to be flying solo right now. We made some joke about the word “wobbly”&something about Thanksgiving, wobbly gobbly&sometimes I’m not sure of the jokes in her head but they make her smile that big, beautiful smile of hers and that’s all that matters. We laughed. She put on her black coat and started down the hallway. Dad was his usual positive self, repeating, “Everything will be fine&You’re still with us”. Sometimes it gets me frustrated to hear him repeat that every single day but then I feel bad when I do. It’s beautiful and he is scared to lose the one constant that has been by his side for fifty years. I watch him, sometimes, watching mom. So in love, the two of them. Mom is claustrophobic so medication to get a 45 minutes MRI is necessary. Mom was half baked by the time they came to get her. I kissed her on the forehead like I usually do and assured her I would look after Dad during the procedure. She is always thinking of others and especially her honey. Dad, Robb and I sat in the waiting room for about an hour. Dad worked his puzzle book, a fantastic refuge for him whenever he needs to feel active or when life gets a little too confusing. He was content. c 2013 bruceandbarb.blogspot.com

113


BlogBook

2.8. December

Robb played with his electronic equipment and I found myself watching an old episode of Smallville, the contemporary Superman series. An hour later they came to get us. When I turned down the hallway I noticed mom in the wheelchair, her head down, shoulders wrapped in a toasty warm blanket. She was still pretty baked from the medication but we greeted her and she immediately asked about father’. He took her hand while the nurse wheeled us to our next destination – radiation oncology. The ladies in radiation oncology are amazing people. The stories they hear and see every single day must be, at times, too much to bare. We have talked on occasion about how important it is to recharge the personal batteries and how sometimes you just can’t take it personally. They did not want to see Mom back after a year being free of cancer. They held her hand, they hugged Dad. Mom had a quick scan and was fitted for the head mask they will use to keep her head very still during the radiation procedure. She will have CyberKnife procedure done in about a month. She is in very good hands. We left the hospital and stopped by the volunteer desk to see Sandy, our new friend. Every single day during the first round of chemo and radiation Sandy was right there inside the main doors – with a smile for Mom. When it’s not busy she comes out from the desk and gives Mom a hug. She sent her a wonderful card on the day of surgery three weeks ago. A warm soul and loving heart. All a part of the healing process and a gift from God. We all had a quick lunch and then made our way to the neuro-surgeon’s office. This was a follow-up from Mom’s brain surgery and to get her assessment of the mornings’ MRI and CT. She was twenty minutes late&just makes for our creative minds to carry us away in to worlds we shouldn’t be visiting, especially when cancer is bearing down on you. She walked in, all five feet and some odd inches of her. She pulled up the images on the computer and showed us the results. Plain, simple, matter-of-fact&I guess it doesn’t pay to warm up to it, right? Nothing you can say beforehand will soften the blow so get to it and get it done. The surgery was successful but there is a chance, as evidenced in the scans, that there may be some residual cancer in the brain. You could almost hear the corporate sigh as we all took a breath and tried to remain composed. The doctor picked up on it very quickly and immediately went in to a barrage of questions for mom&some necessary I’m sure&others perhaps to get us all re-focused on the task at hand: beating cancer. The doctor is pretty amazing. She has an incredible reputation and her father is a leading neurosurgeon as well. She has 2 kids and enjoys skiing, watching movies and traveling, in her spare time. She addressed our concerns head-on and told us that, as she had suspected and stated before the surgery, Mom’s eyesight in her right eye, which is gone about 35 %, will not return. It shouldn’t get rapidly worse but with all eye issues you have to, well, keep an eye on them. Mom’s immediate reaction was to look over at me and recite the name of the regular eye doctor we go to and hinted to set up an appointment. I told her we’ll get that set up in the near future. The hardest part was to listen to the other damage that Mom sustained as a result of the tumor and the brain surgery. There is some cognitive damage done that is not reversible. Her recall and association has been compromised. She knows when it doesn’t make sense which is good, I guess. It’s just scary to talk with her and realize that we have to repeat ourselves often and that she gets facts screwed up a lot. That gets her upset and I’m sure it won’t be long before she thinks that we are just toying with her. As an example, Mom has two major appointments on the calendar this month; todays and one in two weeks. It’s on the calendar by the door: scans/surgeon and then on the 21stblood work, scans and Dr. Hake. She continually gets them mixed up. One day she’s confident that today was blood work and a scan and that the 21stwas a doctor follow-up. When corrected she gets visibly upset with herself and you can see her trying to fix that part of her mind that keeps betraying her. She has always been in 100 % control of her mind and all the inner workings of the household, finances, health, etc. Now she isn’t and that may take some time for her to adjust to. 114

c 2013 bruceandbarb.blogspot.com


2.8. December

BlogBook

The surgeon agreed to back off of the pain medication. What mom is reporting for her pain levels should be controllable with some simple Tylenol and maybe a heat pack or two. When we got home the medication issues got Mom pretty confused but she kept trying to take control and show us that she really did know what was going on. I took her hand and told her to forget about it – it wasn’t important because “she had people for that”. She smiled but I know it hurts her to have to rely on anyone. Thankfully the medication was still kicking in and I’m sure she slept it off for the rest of the afternoon. The radiologist called me and confirmed that after our meeting with the surgeon, the two of them talked and agreed to wait one month to do CyberKnife. I will make the appointment in the morning for her. The next step: we will find out on the 21stof this month if the cancer has spread anywhere else besides the brain. We’re all nervous. Who wouldn’t be? It’s natural, right? We talk about it. We talk about all scenarios: no cancer we celebrate. Cancer and we attack and fight with chemo. Widespread cancer and we cry a lot and talk about other options. Mom continues to fight. She continues to be strong. Mom and Dad together are an incredible force to be reckoned with, proving once again that love does, indeed, prevail in all situations. Their love is a love that is patient and kind – a love that has never envied or been over proud. Their love is one that honors one another deeply and profoundly. Their love is never quick to anger and by the close of every day any wrongs are forgiven. Their love is a love that protects them both&it always hopes&and it always perseveres.

2.8.2

(2011-12-22 18:30)

Mom had a CT done and we received the results that day: the cancer has NOT spread to other parts of the body. It appears it is only in the brain. What a relief - what a miracle - what a reason to rejoice. This news along with the reality that, had treatment not been sought, mom may not have made it through to this Christmas. It brings a whole new light to the moment - the celebration - the birth of the Christ child. All those burdens wrapped up in a little tiny blanket to keep him warm. We rejoice and we know you are rejoicing with us at this Christmas miracle. This year we are still with one another, a roof over our heads, food in our stomach, and we continue to fight the good fight. All is well - as it should be - this Christmas. May the Light of the Christmas Spirit be with all of you this season and may you find ways to celebrate Him through the ordinary and everyday.

c 2013 bruceandbarb.blogspot.com

115


BlogBook

116

2.8. December

c 2013 bruceandbarb.blogspot.com


Chapter 3

2012 3.1 3.1.1

January (2012-01-16 15:53)

It has been awhile since we have sent out an update on Bruce and Barbara. Lots of things have been happening and I apologize for what may be a glitch in communication. As you recall the cancer came back and this time it came back in the form of a large tumor on mom’s brain. Surgery occurred in November and she has been recovering well since then. Her speech has improved and is back to normal, a huge relief to her as it was an obvious sign that something was wrong. Her eyesight, as mentioned, will not improve. I do all the driving for both of them now as neither one can drive. Initially following the surgery mom was having ocular hallucinations which are no longer occurring. They were a little unsettling to those of us around her but Mom thought they were pretty entertaining so we laughed with her when she saw a team of large white horses and a carriage drive past their second-story apartment window. And when she saw Santa Claus on top of the train they can see outside their window we joined her in waving to Santa. Small Needless to say we had our own little meltdowns after that and away from her. But they are no longer happening – a side effect of the medication required to keep the swelling of the brain controlled. She is no longer leaning further to the right than usual although she still requires a cane and someone close by to catch her should she loose her balance. Dad has been trained on how to do that and because his Alzheimer’s makes him more OCD than normal, you bet that Dad is always there, in position, ready to catch her. He’s doing a great job. So mom had a CTScan today and the scan has detected five new clusters of cancer in various areas of the brain. Three near the skull and two deeper down inside. The doctor is confident that the cyber knife will eradicate these cells. But here’s the problem: we knew this was a very aggressive cancer from the beginning. It’s smart. It can adapt and move around and even hide out. She had a scan mid-December that showed absolutely no clusters and no cancer in the brain (after the surgery). Four weeks later there are 5 clusters, two of which are 3 mm in size. They will do cyber knife probably the first of three sessions later this week. The side effects are tired and possible hair loss. They will do another scan 4 to six weeks after that procedure. Here’s the plan right now. Each time a cluster appears we’ll attack it with the cyber knife. If a large cluster or too many clusters appear at one time (we haven’t chosen a magic number yet) than complete brain radiation would be the next choice. We’re not crazy about that option either is mom. Complete brain radiation can lead to a plethora of issues. At that point it becomes a matter of quality of life vs quantity. c 2013 bruceandbarb.blogspot.com

117


BlogBook

3.2. February

Mom is a fighter. Fortunately right now because of the medication she’s on to keep the brain swelling down from the surgery she seems to be not 100 % aware of the importance of today’s findings. I’m in a hard spot lately and am trying hard to cope. Mom’s short-term memory is very weak and when she gets things wrong and is corrected, she gets very combative. Today she was told there were five new clusters. When I addressed it with her 4 hours later she said there were three. When I told her there were five she got combative and told me to get my facts straight. It now comes down to how to manage things when information is re-arranged in mom’s head. Do I try to keep up with her and convince her she right? That’s hard to do because it changes frequently and is next to impossible to keep up with. Do I stick with the truth at all times even though it makes her frustrated and combative? I’m not sure how to handle that situation and will be continuing to research and pray about it. I promised mom I would tell her the truth the entire time and not hold anything back from her. But when push comes to shove – do you go back on your word for the emotional well-being of all involved or do you stick with the truths. Surely there is a fine line between what we share and what doesn’t need to be shared. That, my friends, is one of the most difficult fine lines I have ever tried to find. I haven’t found it yet and possibly may never find it. I pray that Mom continues to know (and so far she does) how much she is loved and that we are doing everything in our power to help her fight this.

3.2 3.2.1

February Proactive Patient Care (2012-02-07 21:15)

It has been a long couple of weeks since we last posted an update. Mom has been in a pretty hard battle with pain. She is experiencing a tremendous amount of pain in her hip and lower back. Bladder control issues have become a problem. Walking is labored because of the hip and back pain and she uses mostly the walker right now. Her eyesight is really bothering her and some of the daytime hallucinations are back again. She can barely see out of her right eye and her left one is weak and tired from compensating. The steroid is causing her face to bloat and her appetite is not the best. These are, indeed, difficult times but ones we trust will get better. We took an x-ray and it showed a little arthritis in the hip and no dark shadows which would indicate cancer. After a few days of being on some strong pain medication mom was still not sleeping and still not getting relief from the pain. We went back to the drawing board and this time did a bone scan. A possible side effect of steroids (required still to keep brain swelling to a minimum after surgery) is AVN (Avascular necrosis). This is also known as osteonecrosis, bone death caused my poor blood supply to an area. The bone scan showed sufficient blood flow to all areas in the hip and back. We seem to have ruled out AVN. But the pain she is having is not indicative of early on-set arthritis. We felt at first that the doctors may have just been trying to blow us off, indicating that it is arthritis and giving her pain medication. However, many patients do not have a slightly neurotic and over-bearing son to step in when needed! I spoke with the radiologist and he seemed to agree with me that it is appropriate to do an MRI; two in fact - one specifically for the hip and pelvis area and another one for the lower back. An MRI will show us the internal organs and will be able to rule out, for the most part, if the cancer has spread to that area. We are doing that next week. Mom completed cyber knife radiation on Monday. She is, in a word, exhausted. In fact, it is difficult right now to see mom so defeated and beat up. She has no energy and her short-term memory issues are enough to cause her frustration. The patience of those around her are being tried as she continually repeats her self and experiences a certain level of paranoia if we even hint that she is incorrect about her facts. Sometimes it is avoidable and we let it blow over but other times it is completely unavoidable 118

c 2013 bruceandbarb.blogspot.com


3.2. February

BlogBook

and those are the harder times. She has been experiencing personality changes and she does not like them at all. Her patience level is at an all-time low and her ability to filter what she says has completely gone. That being said we know mom is still in there. I managed to make her laugh a few times and we brought friends over the other day to visit and that really cheered them up a lot. They like having company and even Dad managed to partake in the conversation. Personally I’m dealing with many mixed emotions and am extremely thankful for the many people around me who continue to support me. I’m at the stage that is common but hard to admit. I’m resentful of all the time that I spend doing this and that for them and at the same time extremely guilty for feeling resentful. It is a tough thing to deal with and I’m trying hard to work through them all. Most people have suggestions but either we have tried them before or many of them are not appropriate for the current situation. Mom and I still talk about the fight. She still wants to fight. I told her that we will fight until the day comes when she says, enough is enough. There is an element of paranoia that perhaps we are hiding something from her. She asks all the time and I promise her that if anyone mentions it is terminal or suggests that all we can do is make her comfortable’, I will let her know. I pray that if that time comes, that God has spared enough of her mind so that she can make the right decision. It is an uneasy position for me to be in to realize that when we signed the Power of Attorney papers about two years ago – that now they are relevant and important documents to have active. I don’t like being the POA but I do it because I know what both my parents want. One of the things I try to encourage people to do who may be experiencing a similar journey is to get all the affairs in order while you are still in a positive, healthy mind frame. If you are the POA make sure you understand all of it and make sure the health care providers have the documents handy. After two years of speaking and signing for my mother, I still get questioned at the hospital and on the phone. But you have to put your foot down and remind them that you call the shots – you make the decision – you are in control. Make sure you tell the providers that you want to work as a team with them and when you feel like they aren’t – tell them. Mom was looked at a week ago about her pain and a provider elected not to even do a physical examination. The schedulers tried to get us to go back to her and I said absolutely not. I told them she had her opportunity to join our team but now the only person we will see is the primary oncologist. It’s tough – I’m sure she didn’t mean to blow us off – she just wasn’t aware that if I tell someone that Mom is in severe pain, they need to believe me and listen to me. You have to be pro-active. I don’t take mom’s blood pressure, oxygen levels, blood sugar, breathing rates, weight, and track her eating and bowel habits because I’m bored. I track them for the same reason they would – to notice any changes quickly. This is an aggressive cancer with a mind of its own. The only way we are going to get a step ahead of it is to listen, pay attention, and think outside the exam room.

3.2.2

The Battle Continues... (2012-02-15 22:38)

The cancer is back and this time it has an attitude problem. Two separate MRI’s today have shown us what we feared. The cancer is throughout the lymphatic system. A PTScan in a few days will probably confirm what the doctors’ suspect – that the cancer has taken up residence throughout her body. We know the cancer is not in her bones and has not affected her lower internal organs (bladder, kidney and bowels). The PTScan will tell us the rest of the story. Mom continues to be in pain but we are managing the pain right now. The next step is chemotherapy. The chemo will actually help mom feel better, take care of some of the pain, and prolong her life a little longer. c 2013 bruceandbarb.blogspot.com

119


BlogBook

3.2. February

The doctor was honest as well as caring and compassionate as he told us that Mom will die of this cancer. If we do not do chemo it will be as quick as two to 3 months. Chemo will prolong and could give her up to an additional 6 or eight months. We knew from day one that we were dealing with an aggressive cancer. It is unbelievable how aggressive, how fast, and how it can out-smart us. All the technological advances in this world and we still cannot figure out how to beat this and other types of cancer. Mom is still strong although physically weak and tired. She is still in fighting mode. She is my hero. She is the most amazing person I know. She is the brightest star in my sky.

3.2.3

The Final Days (2012-02-26 03:23)

the cancer is everywhere and seems to be now removing dignity and grace from my mother. She has been in bed for several days. she has had the equivalent of about a half a cup of liquid, and yesterday morning ate two spoons of oatmeal. she is weak and her legs are not cooperating with her. I am spending the night and after what i just went through am thanking God for granting me the wisdom to that. Dad has no idea who I am tonight or why someone is in his home. I’m able to convince him that everyone is safe and i’m there only to help Barbara. He stands, slightly bent over, watching and unable to help me. Mom is unable to get up and so it is up to me and my strength to pull her to standing. she has no idea what a walker is or how to use it so i tell her to put her arms over my shoulders, give me a hug, and we walk...small, labored steps, shuffling feet, shaky knees - we make our way to the bathroom. We struggle together with Depends to lower them as I lower her to the toilet. she cries...Dad watches, unclear of why there is a struggle...we repeat our now special dance back to the bed, the entire time Mom desperately trying to talk - the words not coming out and it is clear that she knows this, adding to her frustration and anxiety. We make it back to the bed and I kneel beside her bed, holding her hand and stroking her hair, telling her everything will be fine and that we don’t need to talk about that right now - she buys it - she stops trying to talk...i get her some water for her parched lips and you can tell the coolness and moisture feels goods to her tongue...dad lays in bed, staring, taking her hand... at the very core of who Dad is he still loves this woman and cares...through his frustration and utter confusion he still holds her hand in his, and tells her he loves her...mom is able to squeeze my hand slightly and say thank you...i kiss her forehead and tell her i love her and she tells me the same...she is calm again, breathing back to normal, no more anxiety, no more stress...i watch as she fades to sleep once more and whisper a prayer of thanks to God for keeping me physically strong enough to do what I just did for my mother... I’m in the living room, several feet from their open bedroom door...my parents...so brave and so strong...always there for all of us...loving and caring...now struggling...confused...sick...I pray for God to give mom grace and peace and end her suffering with dignity...and yet I ask his forgiveness for feeling this way...i dont want my mom to leave this earth now and yet i want her to be at peace, to be without suffering, to know the warmth of the Holy Spirit welcoming her to life eternal...to be with her parents...and to be with God...i love you, Mom. It’s ok - you can cross over now - i love you.

3.2.4

Keep Fighting (2012-02-28 20:31)

The next morning I was helping mom in the bathroom and as I got her to stand up but her legs gave out. We had a controlled fall to the bathroom. Several people were around and we were able to get mom to the floor. She was in agony. She cried and was not able to speak fully which just added to the horror of what was happening. As she went to the floor I shouted for someone to call 911. Within ten 120

c 2013 bruceandbarb.blogspot.com


3.2. February

BlogBook

minutes they were there. Within the hour the family was gathered at the hospital and mom was in the ER, tired, in pain, and receiving morphine. The journey will never end like you plan it. We all want to plan it but it will never end that way. Circumstances and laws of nature and of biology will rule for a little while longer. As I write this I can’t fight the tears. I am remembering the events of the past five days and the pain is unbelievable yet pale in comparison to moms. As a family we decided that in-patient hospice was the only reasonable option. By 2:00 that afternoon I was riding in the ambulance, in the back, holding moms hand, as we headed to St. Mary’s Hospital Ozaukee County, 2nd floor, room 208, in the Horizon Hospice Center. We have gathered around her bed three times now thinking we were witnessing her departure. We each said goodbye and all held her hands and feet and sat and stood in silence waiting for the divine to intervene. Each time she rallied back. We are witness to sooooo many acts of grace and mercy by God the Father. First, my father has struggled to know what’s happening. He has believed Mom is here but we will take her home with us in a few days. He worries about what’s for dinner, where his jacket is, and a million other things except his wife in bed. He loves her but he’s not aware of the powerful moment we are all in. Last night he became combative and upset mom to the degree that my sister-in-law agreed to take him back to his home, back to some sense of normal, to sleep and rest. This morning on their way in I put my arm around my Dad, we have small talk about how he slept, how the dog was, and what he ate for breakfast. Here’s the end of the conversation: Kurt: Dad, do you know where we are right now? Dad: Yeah, in a hospital somewhere. Kurt: Yes we are. I don’t mean to sound silly to you but do you remember why we are here? Dad: Your mother is sick and we’re hoping to take her home in a few days when she’s better. Kurt: Dad, we have talked for a couple of days, and Mom is not coming home. Dad: I’m holding on to hope and believe that she is. Kurt: Dad, hope is one thing but I need you to share with me if you know that her coming home is not reality. Reality is that Mom is dying and she is not leaving this hospital alive. Dad: (beginning to weep) I know, son. I know. (He pulls me in closer to his side) I just hate it. Kurt: I do too, Dad. Let’s go in and you spend time with Mom and tell her how much you love her. He got it today. We witnessed Dad at Mom’s bedside many times today. Each time we left the room for them to be alone. Tonight as Dad said goodnight and started to go back home, he leaned in to kiss Mom’s forehead. Her hand slowly reached up for his and he took it. She managed to say, "1,2,3...1,2,3" I knew what she meant so I reminded Dad of his night time ritual when kissing mom goodnight...forehead, nose, chin, then lips to seal the deal. Mom said, "again"...so he did...then Mom said, "faster"...so he did...then Mom said, "faster" and he did and this time they kissed for a few moments. When he pulled away she was smiling and patted the side of his face. Then just as quickly she dropped in to unconsciousness again. She has been going in and out for two days now. Her breathing is very slow. If we were to hold our breath that long we simply could not. It scares us and we all habitually watch for signs of her next breath. Parts of her body are now cold to the touch. Her cheeks and neck, her forearms, and her knees. Yet another sign she is preparing to depart - or rather God is preparing her to come home. The other sign of grace and mercy is that Mom is completely aware of her surroundings and is able to communicate with us. Rarely through words like with Dad, typically through sign language. I am typically aware of what she wants only because I have been her caregiver for so long. Tonight she patted her face and I knew she wanted moisturizer. I spoke to her while I my hands gently rubbed the lotion on her cheeks, neck, chin, and forehead. Her skin is remarkably beautiful and soft to the touch. She smiled and sighed a sigh of relief for receiving the wonderful moisture rich lotion. There are moments of grace and mercy all around us and I pray that I am able to remember all of them. I pray that we are all as fortunate as Mom to leave this world relaxed and with our minds in tact and c 2013 bruceandbarb.blogspot.com

121


BlogBook

3.2. February

aware. My Mom is an amazingly beautiful person inside and out and so far her journey from this life to the next is so beautiful. The doctor tells us that it could be several hours or as much as two or three days. We are committed to being here. I remind Mom each day that I made a promise to her and I will fulfill it completely. This afternoon the family gave me time alone with Mom. I sat on her bed, then laid on her chest for awhile as her hand came to my face and held my cheek. We stayed like that for about fifteen minutes or so. Like we have done during this three year journey and earlier in our life. I love you Mom. And as you continue to fight with courage and amazing humor, remember always that you are adored.

3.2.5

With Every Breath... (2012-02-29 08:23)

I have to look at the nurses’ board to remember what day it is...time seems like somethiing from star trek, slow and, if this makes any sense, thick. We often hear of people saying things like, I wonder if he knew how much he was loved. Or, do you think she was aware of things around her. Or, I wish I would have been there...what a blessing beyond words that mom knows how much she is loved. Two days ago, while having another alone time with her, she said to me, ’how is it that i all these people are loving me and that i can feel it right now...what did i do to deserve it?"...I told her that she gave all her life and now she is receiving. We talk about the family that has been here every day, the uncle that flew out from new hampshire to be with us and at her side for severald days, the stranger who brought flowers and breakfast for all of us, the lady across the hall who continually prays for mom, the family in montana who have called mom and dad among their best friends for so many years and whose tears are being heard at moms bedside, and the young couple who just arrived with his own mother, who reached out to me with hugs when they found me in the lounge crying. There is so much love and MOM KNOWS IT. That is the grace and mercy of our Lord. There are biological reasons for all of this but let us not forget that God works through all things and even now He is working in and through mom to reach and touch lives. So you need to know that mom still has her amazing sense of humor. A few stories to share. We all were gathered around her bedside two days ago, praying and quietly crying, for some reason thinking that she was on her way out. Suddenly she opens her eyes and starts to move a bit, she looks around the room and says, "what is this, a funeral or something?" the laughter erupted as did hers. She said to us as we were shedding tears, and she apparently heard us, "come on

3.2.6

Continued Blessings (2012-02-29 09:24)

I have to look at the nurses’ board to remember what day it is...time seems like somethiing from star trek, slow and, if this makes any sense, thick. We often hear of people saying things like, I wonder if he knew how much he was loved. Or, do you think she was aware of things around her. Or, I wish I would have been there...what a blessing beyond words that mom knows how much she is loved. Two days ago, while having another alone time with her, she said to me, ’how is it that i all these people are loving me and that i can feel it right now...what did i do to deserve it?"...I told her that she gave all her life and now she is receiving. We talk about the family that has been here every day, the uncle that flew out from new hampshire to be with us and at her side for severald days, the stranger who brought flowers and breakfast for all of us, the lady across the hall who continually prays for mom, the family in montana who have called mom and dad among their best friends for so many years and whose tears are being heard at moms bedside, and the young couple who just arrived with his own mother, who reached out to me with hugs when they found me in the lounge crying. There is so much love and MOM KNOWS IT. That is the grace and mercy of our Lord. There are biological reasons for all of this but let us not forget that God works through all things and even now He is working in and through mom to reach and touch lives. 122

c 2013 bruceandbarb.blogspot.com


3.2. February

BlogBook

So you need to know that mom still has her amazing sense of humor. A few stories to share. We all were gathered around her bedside two days ago, praying and quietly crying, for some reason thinking that she was on her way out. Suddenly she opens her eyes and starts to move a bit, she looks around the room and says, "what is this, a funeral or something?" the laughter erupted as did hers. Another blessing is that anything personal that has been happening to mom through this process has not occured in the presence of the larger family. This morning she experienced some issues but i was right there and nurse was about to bathe her. I told her no one else knows but me and the nurse and she mouthed, "good. Thank you" i am aware that I may not be letting go enough for mom to leave. People who love me are saying I should go home for a bit and freshen up and rest but I am not able. I cannot leave but am committed today to spending more time walking around, in the waiting room and even outside for a bit. I pray that I’m not the reason she is staying around or unable to cross over. She is pleased that Dad went home for awhile, she is pleased that Terri went home for awhile to care for her kids and household...so I will tell her I’m leaving for a bit to do some work - that will please her. And I continue to pray to God that I have the strength to give her to Him...to relinquish my role as caregiver and allow the doors of heaven to open for her.

3.2.7

(2012-02-29 20:21)

Another evening falls upon Mequon, Wisconsin. The snow is falling and sticking to the windows overlooking a courtyard and out further to a grassy field, all brown still in this winter. The stars are hidden behind the curtain of clouds now, dancing most likely in the southern skies, sparkling off the waters and winking at lovers as they walk hand in hand along some beach somewhere. The hospice floor seems a little busier this evening. We have seen several families leave in the past four days only to be replaced by more sad, heavy-hearted, head-drooping individuals. We pass in the hallways and either acknowledge one another with a half-cocked smile or peacefully pass with no words as we keep our faces pointed to the ground – the clear and acceptable sign that says, “Please don’t speak to me right now”. Hospitals always seem colder at nights and I can start to feel the air temperature dropping and the hum of the air system seems to get louder as the night goes on. Mom appears to be resting comfortably and we pray she has no concept of the amount of time she has been here. We are starting day five and she has not been out of bed since then. The nurses have turned her and reposition her often to avoid bed sores. What angers me most right now in my grief is that my mother has gone from vibrant individual to, well, an elderly lady. There is talk of bed sores and trying to avoid blood clots in her legs. She is bathed daily and turned frequently. I moisten her lips with a stale green sponge of water, wishing desperately to be able to give her a long, cold sip of water. She moves very slowly when she does. Her left arm has been shaking a lot today and her skin is cold to the tough. I place my finger in her hand and tell her to squeeze if the answer to my questions is yes. Sometimes it takes a dozen or so questions before I clue in on what she is trying to tell me. They give her anti-anxiety medication and I can’t stop the feeling that maybe we are over-medicating her. Yet without the medication she will become agitated and restless. So sleeping is best right now and we all know that but I can’t help but feel like all we’re doing is putting her to sleep and waiting for the medication to usher in to eternity. I know it’s not true. I know it is the cancer that is taking her and the medication is helping her to not feel the horrible and painful ravishes of cancer-death. But it does not help my grieving today. I know tomorrow I will feel another type of grief, new emotions will come up with other ones are finally reconciled. Her hands are thin and frail, she spends most of her time sleeping and, well, no one looks pretty while sleeping – yet there is a beauty about her that moves my heart. Her skin is so soft. Not many wrinkles in her face or neck and her skin is smooth, thanks to the moisturizing treatments we give her c 2013 bruceandbarb.blogspot.com

123


BlogBook

3.3. March

several times a day. Her legs are still gorgeous! We moisturize and rub her feet and legs and someone comments on how beautiful her feet her. Mom has always had the sexiest legs! She is pleased, I am sure, to hear us talk about how beautiful they are even now, in this time when she must feel anything but beautiful. Yet I tell her she is because I mean it – and I tell her that I wouldn’t say it if it weren’t true. There is a time to dance and a time to mourn, tells the author of Ecclesiastes. My mom and I have danced many times throughout my 45 years of living. We have slow danced, we have box stepped, we have jitter bugged, and we have just let loose wildly. Now I mourn the eventual loss but soon again I look forward to the time when we can dance again – and dance again we shall. And now for my mom’s eyes and understanding only, I grab the candlestick and sing in to it, “oh yeah!!”

3.3

3.3.1

March

(2012-03-04 22:20)

On Saturday, March 10, 2012, a Celebration of the Life of Barbara J. Danskin, who entered life eternal on March 1, 2012, will be held at The Berkshires of Grafton, 1004 Beech Street, Grafton, Wisconsin 53024 This is a casual gathering. We will gather in the community room (directly ahead of you through the front doors) at 10:30 a.m. A Memorial Service of Celebration will take place at 11:00 a.m. followed by a light lunch and social gathering. If you are local please feel free to bring something to add to the food buffet area but not required. If sending flowers please notify flower company that items should arrive that morning between 7:30 and 10:00 a.m. or the day before between 9:00 a.m. and 2:00 p.m. The number for the Berkshires is 262-376-9661 and they can give you local florist information and detailed delivery suggestions. Ask for Jill. If you would like to send a note to the family please mail to the Berkshires, "attention Apt 223, Danskin Family" You are invited to send a donation to the SouthEastern Wisconsin Alzheimer’s Association in honor of Bruce Danskin as he continues his battle with the disease. You can visit their website at http://www.alz.org/sewi/ and simply click "donate" at the top of the page. If you wish you can make a donation to help defray the funeral costs. Please contact Kurt at 414-3121345 for information. Any flowers received will be used during the service and celebration. Afterwards, some will be donated to Horizon Hospice of St Mary’s Hospital Ozaukee County in Mequon, Wisconsin. Others will be brought to the local hospital to be shared with others who may not have family in the area. Thank you to everyone for your prayers and support. Barbara was completely surrounded by her family and held the hand of her husband of 50 years when she took her last breath. Please continue following Bruce and Barbara’s blog as we now rally around Bruce and be with him as he continues to struggle with Alzheimer’s. 124

c 2013 bruceandbarb.blogspot.com


3.3. March

3.3.2

BlogBook

Transition (2012-03-04 22:53)

No beautifully sculputed words, no fancy sayings and quotes, and no inspiring messages to share. Just a man who is hurting because of the loss of his young mother. Just a man sharing his heart with you even right now when his heart is so wrinkled it is barely recognizable. You continue to share this journey with us and for that I am truly thankful. I can still see her face, see her eyes looking into mine, and occasionally I can smell her moisturizing lotion mixed with her perfume. I held her hand in life and in death. I can clearly see her smooth, milk-white skin, and can feel her cheek upon my lips when I kissed her farewell.

The image of my father praying at the bedside of his love is forever etched on my heart. Dad didn’t accept the news at first. Day one he was sure she was going to come home. By day three he was aggravating mom by telling her she is fine and they will soon be back home. We decided the best thing to do was send Dad home for the night, get him back in to a sense of routine that is so important for Alzheimer’s patients. Each morning my sister-in-law Linda, who stayed with him at nights, would meet me in the front lobby. She would go ahead of us and I would put my arm around Dad and ask him how he was doing. One day four he finally got it – he said he knew Mom was dying and he just didn’t want it to happen. We gave most of the day four and day five to my dad. We would go in and out of her room, touching her hands, arms, forehead, cheek, even her feet and legs. We talked to her, not c 2013 bruceandbarb.blogspot.com

125


BlogBook

3.3. March

about her, each time we were in the room. No secrets – that was my promise to my mother and that’s the promise I kept. I am clear of conscience and heart on that matter. The final hours were difficult as we all gathered and remained by her bedside. Her passing from this life to life eternal was the most beautiful thing I have ever witnessed in my life. As she took her last breath, received a kiss on her cheek from my sister, Terri; I took her cheek in my hand as I often did and I spoke to her. I looked in to her eyes that were now open and looking at me. I told her I loved her and that she should go meet her parents now and that we would soon be dancing together again. The sparkle faded from her eyes and mother was gone. The nurse confirmed it. The nurses quickly prepared Mom while we waited in the hallway. When we re-entered she was lying straight, her head slightly further back than I liked so I fluffed her pillow, bringing her head back up a little more. We talked with her, we shared with one another. I don’t know exactly how to feel or what to think or what to write. I try to be so uplifting and encouraging through this blog but all I am feeling is pain. It is a pain that I have never known before. A myriad of images, conversations, and thoughts flood my brain. I didn’t realize that my entire life was dedicated to my parents. She often spoke about her end days and how much she wanted to be cared for by family and not forgotten. She would joke, "you’re gonna push me around in my wheelchair when I’m 90, right?" Well, Mom. You were only 66 but I pushed you in your chair. I guided your arms when you used your walker, and I held you up with both arms when walking was no longer an option for you. I held my shoulders high when your head dropped down, exhausted, in pain, confused, hurting, frustrated and out of steam. I held your hand and made you smile almost every single day of this journey. It was a heck of a ride, Mom. We have secrets and private moments that will remain that way forever. I made promises and kept them. You told me your wishes and I made most of them come true. I couldn’t stop the cancer but you, as you always have done, walked your final steps with dignity, honor, and bravery. I have never been more proud to be your son.

When my mother was still able to speak while lying in hospice, she said to me that she wasn’t sure how one person could be loved as much as she. My heart danced for joy! She knew how much she was loved and that she was loved by so many people! May you never stop telling people how much you love them. May you never stop showing them. May you never tire of being in their presence. May you always be taking mental snapshots of the times together, their face, their hands, the way they walked, and the way the smiled. 126

c 2013 bruceandbarb.blogspot.com


3.3. March

BlogBook

I will continue this blog because our focus shifts solely on to Dad now. I realized around day three with Mom that I was beginning the transition of care-giving for my mother to my father. This disease has Dad in its powers. Even today when I took him shopping for some pants he was not always sure where he was or what he was about doing. He recognized some things on our drive but not others. I will not hold back stories here because this is about truth. I hope you will continue following our blog. We wil celebrate the life of this amazing woman on Saturday, March 10, 2012. For my mother I will play the following recording. She adored this song and continually told me how proud of me she was. Mom - this is for you.

IFRAME: http://www.youtube.com/embed/VMZtzonaQx4

3.3.3

(2012-03-09 00:20)

[barb1.jpg] Mom and Dad at the entrance to their new place, October 2011.

I have been visiting Dad every day since Mom’s passing on March 1, 2012. This was one of my promises to my mother but also a part of my commitment to Dad. Overall I would say he is doing well. He has changed some of the wall art in the living room to remind him more of Mom. Their wedding photo is on the table next to his chair with a petal from the rose he placed on Mom’s casket during the cremation committal service. Mom’s clothes have been given to Goodwill and other items have been given to those to whom she designated. Dad is still able to maintain his schedule. Wake, get coffee brewing, walk dog, eat breakfast, walk dog again, etc. He is able to do pretty much everything himself with the exception of the bills. He could do it if instructed but he has not been involved in that end of the household for fifty years and prefers that I take care of it. c 2013 bruceandbarb.blogspot.com

127


BlogBook

3.3. March

Dad and I will take a trip to see his doctor in another two weeks. We will also be checking out a grief counseling group. Dad really surprised me when he said he would go with me, although I’m not sure he will talk much but maybe I will be surprised. Dad and I talk everyday about feelings, a conversation not many people have had with Dad. Dad keeps his emotions to himself and rarely shows them, unlike his youngest son here, who wears his on his sleeve! Dad is depressed but who would blame him. He says he talks to Mom throughout the day and wishes he could be with her. He is not happy about the idea of living another ten, twenty years without her. Longevity is common on his side of the family, a fact that has not escaped him over the past week.

We will gather with family and friends this Saturday, March 10, 2012 to celebrate Mom’s life. Each of her kids will make a small presentation, Glen, Terri, Kurt, Jayden, Robin and Ryan. We will have prayers and stories to tell, and a memory table or two with items representing all of mom’s accomplishments. Two different videos will be running at the same time with images of Mom and her family throughout her sixty-six years here on earth. We will post a video link to the service on this blog after the service.

3.3.4

It’s Not the Ending But How You Get There That Matters (2012-03-12 08:57)

I am not sure what stage of grief my father is in as he has never been one for talking about his feelings. I hope that perhaps a grief support group will empower him to share and heal. We are all worried about him but Dad is a tough person. He has been through and seen things that would break most men and yet he stands tall and continues to be strong even in the midst of an ugly disease. Overall he seems to be doing well and comprehends the reality of it all. His immediate short-term memory is still weak. Certain things from the past seem to elude him. He does not immediately recognize faces but many names are still within his grasp. His recall of circumstances is blurred and details are sketchy. In fact, you would probably not notice anything was going on with Dad in the first ten minutes of conversation. Then it sneaks its head around the corner for a quick moment, just long enough for you to wonder what just happened. As the conversation continues you realize that he has forgotten the earlier part of the 128

c 2013 bruceandbarb.blogspot.com


3.3. March

BlogBook

talk and many times will repeat the conversation over again as if for the first time. In the car the other day he asked where his sunglasses were on seven different occasions within the span of about an hour. He just could not hang on to information; could not remember that he just asked the question and was told the answer. For me I believe I might be starting the angry phase of the process. I saw an ad for cancer last night on television and became very upset, spouting off for about ten minutes on how there must be a cure but obviously not enough profit in the cure to make it happen. I want to talk to mom’s doctors to find out what we learned and how we can get that information in to the hands of other doctors and patients. I learned a lot and there are things we would do differently. For example, when the patient complains of acute pain it is not something to easily blow off or simply order and x-ray. Mom saw a doctor, a nurse practitioner and then her regular oncologist about her back pain and yet it took the oncologist to initiate more tests. This process took a few weeks and perhaps could have given us more time. Please bear in mind that I share this as information, not as finger pointing or blaming. The bottom line is that this cancer is very aggressive and the end result is the same. But here’s a good argument: the patient is in pain so you order an x-ray. If the x-ray comes back clean, you would go the next step and do a bone scan. If the x-ray comes back questionable, you would still order a bone scan. The same with the bone scan test except this time you would go to the MRI. When a patient does not have the luxury of time, would it not have made more sense to go right to the MRI? It is painfully obvious now that Mom’s back pain was cancer. Had we immediately performed the MRI we may have been able to give mom a little more time. But that brings about two questions. 1) how much more time and 2) what type of quality of life. Mom’s quality of life was pretty amazing until the last month. She had been having hip and back pain and some headaches. Her eyesight in her right eye had begun to deteriorate rapidly. We would discover that the reason for all of these were tumors. In fact, the tumor behind her right eye was so large and grew so fast that her eye was actually bulging out. Her last week before going in to hospice was rough. Monday was surgery to put in a med port and then a PTScan. Tuesday we found the results of the PTScan showed cancer was everywhere. Wednesday we had a nine hour chemotherapy day, followed by 3 hours on Thursday and Friday. Friday night mom fell during the night and was stuck in the living room, half on the floor, halfway on the couch, for up to three hours. That Saturday mom was not able to get out of bed except to get to the bathroom and had to do that assisted. At night Mom was having incredible problems walking. The only way she could move was to put her arms around my neck and allow me to almost carry her. Her speech began to slur and stutter and she was obviously very frustrated and in pain. By Sunday afternoon she was in hospice and passed five days later. To say this happened quickly would be an understatement. Was there any way to slow this down? We believe that sometime between Saturday morning and early Sunday morning, Mom had a stroke or a series of small strokes. Her speech was an obvious give away as was the sudden difficulty in walking. Her blood tests in the emergency room showed that she was probably en route to a heart attack. During her time in hospice it is very possible that small strokes continued. She would talk occasionally for the first two days, fully aware of her surroundings and what was happening. By day three she could barely talk but was able to use hand motions to a certain extent to let us know what she wanted. By day four she was in and out of consciousness and day five was spent entirely resting, not communicating except with a slight finger movement here and there. She passed around 8:00 p.m. on day five. There will always be questions. I have been struggling with questions about her treatment and if we actually could have done better. There are more personal questions that I’m not ready to share yet but that will hopefully be addressed with a counselor. I recognize the need to talk about these things otherwise I will forever be haunted by these questions and images in my mind. You will recall that one purpose of this blog is to educate people and to allow people to succeed and live longer with this type of cancer, even though this disease ends in death. It is not the ending that c 2013 bruceandbarb.blogspot.com

129


3.3. March

BlogBook

is important it is how you get there. Mom got there kicking and biting all the way. She did not lose her battle with cancer, she won. She was victorious. She looked it dead straight in the eyes and never once blinked. She stood tall and said, “bring it”. She brought her best game to the table and gave it a beating it had better not soon forget. We learned much from her fight and now it is our job to make sure that the medical community does not forget. The valuable information we gained will help the next patient to succeed and eventually we will kick it.

3.3.5

It’s not about yesterday or tomorrow – it is only about right now, in the present. (2012-03-21 12:57)

The journey of Alzheimer’s is unique to each individual. There are common threads but there is no manual on what to expect at what time and how to treat/handle it. I tell stories and incidences from Dad’s life in hopes of bringing reassurance to someone who might be experiencing the same thing. I also tell them as a way of releasing the tension and anxiety that it causes me as his caregiver and his son. When Dad’s symptoms began to really surface I remember so many conversations with Mom. Most of them were times of reassuring one another that he wasn’t doing things on purpose and that it wasn’t his fault. We would continually remind him that it wasn’t his fault that he didn’t remember this or that or that he got frustrated easily. We learned to deal together. There was no manual, no internet page to look at and no checklist to follow. It was and still is a daily encounter with an ugly disease. Recently I have been checking Dad’s phone to see who calls him each day. I’m not checking up on people who are calling but I use it as a source of conversation with him. He enjoys when people call him but he is not remembering any of them. My brother has called multiple times since Mom’s passing and when he called again two days ago my father called me afterwards to tell me he finally heard from him. Dad went on to tell me that he doesn’t remember the last time he heard from him but that it was probably before mom’s passing. The same issue applies to everyone who calls. Hopefully it doesn’t curtail the phone calls because they do lift his spirit and I know they are kept somewhere in his mind even though he cannot quickly recall it. It’s not about yesterday or tomorrow – it is only about right now, in the present. He remembers that Mom has passed. That memory is there and waking each morning in an empty bed where there was someone else for 50+ years must be so hard for him. He does not recall the memorial service or that we even had one in the meeting room where he lives. Should I count this as a blessing because he passes that room each day and is not reminded of the event that took place there? I wonder if I would think it was such a blessing to forget that as well? A blessing? I’m not sure of that but at least it is something he doesn’t have that cause stress in his life right now&not a blessing&just a very sad, lonely fact. He knows how to use the cell phone which is an incredible step. I would like to think that he has learned this new behavior and has embraced it because it is one of his social interactions and connections to family. He called me the other day in the afternoon& “Hey Dad, how are you?” “Fine, I guess. I was wondering if you had contacted the family yet about Mom’s passing?” 130

c 2013 bruceandbarb.blogspot.com


3.3. March

BlogBook

“Yes I did, Dad. Everyone has been notified. Is there anyone in particular you are thinking about today that you want me to make sure that they know?” “No I was just wondering if the family has been notified but I’m sure you probably took care of that” The call ended with the usual, it sure is nice out today’, and recounting how many times he took Rita for a walk. My heart broke when I hung up the phone. I have images in my mind of him in the apartment wondering how long it has been since Mom passed, if everyone has been notified, and if we had the funeral already.

Dad still manages pretty well being alone. In fact, I think there is an element of enjoyment for him. He gets to listen to classical music almost all day, work on his puzzle book or play computer games as much as he wants. His schedule is rigid. He wakes up around 6:30, sets the coffee pot going, puts on his shoes and takes Rita for her morning walk. They return, he feeds Rita and then prepares his breakfast; a bowl of bran cereal with yogurt on top and a few slices of peaches. He pours his coffee, tests how warm it is, places it beside his chair and turns on the morning news. He returns to the kitchen for his breakfast and sits to enjoy it. Afterwards he washes and puts away his dishes, spends about fifteen minutes in the bathroom doing whatever he needs to be doing, then takes Rita for another walk, this time a lengthy one, weather permitting. He’ll turn the channel to classical music and work his puzzle book, occasionally putting his head back to rest his eyes. He will walk Rita every couple of hours.

He is surrounded by images of his wife – their wedding photo next to him, a bracelet she wore, and a rose petal leaf from her committal service. Their 25th wedding anniversary photo hangs above the couch to his right where he can clearly see it, an item he moved from their bedroom to the living room the day she passed. Mom’s urn, a unique flag covered tube, sits on the china hutch directly behind him as if watching over him and covering his back like she had done for 50+ years. Lunch is precisely at noon and will be a peanut butter and jelly sandwich and some cheese nip crackers. Dinner varies with news at 5:00 and 6:00, Rita at 8:00 and 9:30, bedtime between 10:30 and 11:00. He talks with Mom throughout the day, looking at her empty chair and expecting her to walk around the corner to join him. He still has her coffee cup sitting out on the counter, readily available as it has been for years. Her side of the bed is untouched except to change the linens which he faithfully does once a week. Dad is doing ok. With this disease I will not get a notice in the mail that warns me of the next stage and next new symptoms. I won’t get a heads up – it will just happen. Perhaps he will forget to eat and c 2013 bruceandbarb.blogspot.com

131


BlogBook

3.3. March

I’ll notice his weight declining or the opposite where he eats too much. I check the food each time I’m over, taking mental notes of how much is there and if anything has been eaten. Perhaps we’ll begin noticing hygiene issues which is why it is important for a nurse to come over once in a while to do a checkup, a light physical, looking for bruises, cuts, scrapes, etc. I told him his doctor wanted a nurse to come over – he agreed. Perhaps it will be issues with Rita which will be noticeable pretty quickly. He is being watched – in fact I feel horrible sometimes that I watch him so much. There is an element of guilt and fear. Guilt that I know he’s not lying it’s just that he doesn’t remember facts. And fear that he’ll catch on to me or begin feeling like he’s being treated like a child. Fear that he will withdraw in to himself to protect his feelings of self-worth that are under attack every time we help him or leave him notes. I’m constantly telling Dad things like, “I don’t want you to think I’m treating you like a child, but perhaps you’ll allow me to pre-make some dinner for you” or “that’s great that you do this and that, how about if we added this other step for you and wrote a note as a reminder”. So far we have not had an encounter where he is frustrated – I’m sure he appreciates the attention and care. I hope he does. But reality is, he doesn’t remember what we did for him yesterday or that we are coming over tonight to make dinner. He is in his routine – his schedule – and he’s committed to it.

3.3.6

Evidently Far-Off is Now Close-By (2012-03-24 23:23)

Last night was a foggy evening here in Wisconsin. During the day the birds came out to sing a few songs to coax spring to come out and bloom. Intermittent rain and dismal clouds brought a mostly gloomy day. This day found Dad in a slight state of confusion, not sure if there was some thing or some where he had to be. Dad called me several times to tell me he just felt a little confused and wasn’t sure what was going on. I convinced him he was fine, that all he had to worry about was his schedule for the day, and that nothing unusual was to happen. I think what was going on was that I had discussed with him a lunch we had planned with my sister, Terri, for the next day and he was having difficulty putting facts and days and times together. Today he seemed a little brighter as Robin and I picked him up at his place. Terri was under the weather so those plans were put aside. A note on the counter to meet us in the lobby at 12:30 was successful and he was on time. I was nervous at first meeting him this morning. It is typically not a good idea to change the plans of someone with Alzheimer’s but today he forgot where we were going or who we were meeting. We headed to lunch at a nearby restaurant, took him back to our place to show him the newly-cleaned apartment, and then returned home. He had a good time, a great BLT and some onion rings. And don’t forget the coffee&regular&black&nothing in it. That’s been his mantra for years when ordering something to drink. Coffee&regular&black&nothing in it. Gotta love routine! [living+room1.jpg] Recently, slightly re-arranged living room... note Rita on the couch! I spent some time in the apartment with him today looking around. I had my usual play time with Rita. Now there’s an odd one, Rita. She adored Mom and no doubt misses her. She and Dad got a long but never played and many times she would shy away from him when he tried to put her harness and leash on. Now they have it down to a science – harness on in the morning, and off in the evening. Its part of the routine and Rita knows it now. A unique thing happens when I show up – she goes a little crazy. Okay – she goes very crazy. And it happens each time I show up. When others arrive she looks and then stands in the corner watching everyone. She’s warming up to Robin and sticks around, even lets him walk her. But I need to get my ten minutes of play time in with Rita – get on the floor, put her 132

c 2013 bruceandbarb.blogspot.com


3.3. March

BlogBook

on the couch, and play hide-my-face-so-she-doesn’t-bite-it-off. She won’t actually bite me but we have a good time. Dad watches, a big smile on his face. We notice that today is a little odd in his behavior. As we were in the living room we watched Dad slip away to the bedroom. He stayed there about ten minutes then returned, then went back in. I followed him and he was standing there at the foot of their bed just looking around. I put my arm around him, “You ok, Dad?” “Oh yeah, I’m fine.” “It’s hard to come in here sometimes” “Why’s that?” “Hard to be here where Mom was when she was with us.”

“Oh yeah. Yeah its hard alright but I have this photo of her next to my side of the bed and I say good-night to her every night.” Later in the day I would hear from my brother, Glen. He called Dad and talked for a bit and Dad told him that he was out walking Rita and wasn’t sure where Mom was. He came in just as the phone was ringing and Glen said he was able to talk him through it easily. A very simple reminder that she passed away was all that was needed. This has been a big point of anxiety for me. I know the day may come when he starts to ask where Mom is but I was hoping that day was far off. Evidently far-off is now close-by. The pain I feel when I enter their apartment is hard to describe. We helped them pick it out, moved them, and helped to decorate it as well. It was in that apartment that Mom and I shared many laughs, serious conversations, and where we talked about her concern for Dad should the cancer take her. I have a hard time stepping in to the bathroom where she collapsed from a stroke on the morning we ended up taking her to hospice. It hurts but I wonder about the pain that Dad feels. Does he remember those moments or does he simply remember her presence? I think he remembers her presence and not specific moments. That’s my guess but he doesn’t talk about it much. Sometimes I walk down the hall and remember, vividly, walking behind the ambulance gurney carrying her to the emergency room. I step out the front doors and can still see the ambulance there. I step up in to the passenger seat and look out the window as Robin and Dad’s brother, Uncle Keith, help Dad to the car. The ambulance driver asks me about mom’s DNR (do not resuscitate) order and I rescind that order for the ambulance ride over. All these things, step by step, race through my mind each time I’m there and sometimes they cause me to break down. But I have not seen one tear on Dad’s face since the day she passed in hospice. Even then there were not many. How is he coping? How does he feel? Has Alzheimer’s robbed him already of his ability to remember enough to solicit an emotional response? Is he being the strong former-Navy guy and firefighter and not showing his emotions to us? I believe my Dad is being a Father – an incredible father. He knows how hurt I am. He watched me for five days stand at her bedside and weep, at one time holding my head to his chest and saying, “I know son, I know.” He c 2013 bruceandbarb.blogspot.com

133


3.3. March

BlogBook

watched me collapse at the hospital after they took Mom away. As people assume it is Alzheimer’s I believe that, although influenced by the disease, he is being an incredible man of honor and caring for his children the best way he knows how. Mom would be so incredible proud of him. Dad – you’ve stepped up. You are doing so well this month. You are taking care of yourself, of Rita, and the household. You are coping well and I’m proud of you. When you feel confused and not sure what’s going on, just remember to stop and relax. Do what you always told me to do when I got anxious – breath deep, close your eyes, and think of a quiet place you would rather be. Dear Mom – Dad is doing fine. He’s mourning and he is sad, of course. But he is doing well. He is doing his chores just like you taught him. He is eating although perhaps more peanut butter and jelly sandwiches than you would prefer but at least he is eating. You would be proud – I know you would.

3.3.7

To Wear It or Not To Wear It - That Is The Question (2012-03-27 13:53)

I have never known my father to wear his emotions on his sleeve. He grew up a tough boy. I have not heard many stories from his youth from either him or his brother, my Uncle Keith. I can piece together bits and pieces here and there and come up with a weak picture of who he was but all I can figure out at this point is that he seemed to be a pretty tough kid. In fact, on photo that I adore of him and his family growing up shows a very obvious shiner on his right eye! I trust the other guy looked worse. My father was in the Navy and he was in Vietnam before we were officially there. He was a sniper. He was young, he was tough, and he was trained to kill. He was also a firefighter, able to walk right in to a burning building without thinking twice in order to save another life. My dad is one strong cookie. During the five days that Mom was in hospice we had some emotional roller coasters from Dad. I watched him get angry, upset, confused, sad, lonely and scared. At first he was not to quick to share these openly with me but as the week progressed he slowly opened up. I think he realized that the emotions he would normally share with Mom would need to be shared with someone new. I’m blessed and honored that he chose me. I visited Dad yesterday and we spent some time talking about the days in hospice. Dad is completely aware that she was in the hospital for some tests and treatments (chemo) and that she didn’t handle that very well. I told Dad that during the Saturday night that I stayed with them Mom had had a stroke and that is why she was unable to walk or speak very clearly. He remembers getting frustrated because he couldn’t understand her and says he still feels a little guilty about that. I reassured him that it was nothing to feel guilty about but I know that is something he has to work out within him. He said he breaks down about twice a day, once during the morning hours and then as he puts his head to sleep and looks over at the vacant side of Mom’s bed. It breaks my heart. His heart is broken, too. we cried together a little bit, nothing over-dramatic, and then moved the subject to more pleasant thoughts. Dad is anxious to do something. He is not sure what but he wants to do something to help keep him busy. He says he gets bored in the apartment and isn’t sure what to do. That is my opening to get him connected with a local senior program that provides companionship and activities for seniors. they will even come to their apartment and pick him up. I’m excited that he wants to do something like that and when I mention it to him he seems to perk up a bit. Everyday I’m not sure what we will face. Each day is brand new and can bring about challenges and opportunities. Nothing is ever an issue’ or a problem’ but an opportunity. A chance to face something you haven’t faced before and a chance to overcome adversity once again. My father taught me that outlook and I have brought that in to my personal life as well as my professional career. We have so many opportunities facing us every single day. How we approach those is up to us. We can remain depressed and angry or sad over it. We can choose to allow those opportunities to turn in to 134

c 2013 bruceandbarb.blogspot.com


3.4. April

BlogBook

true problems. We can choose to wrap it around us and wear it for all to see and to hope that something or someone will see it and help us through it. We can complain about it as loudly as we can and we can even profess that it has won the battle over our life for that day. Or we can face it – stand on top of it – be victorious over it – and use that opportunity to improve our life. The choice is ours. Wear our problems and thereby allow them to completely envelope our very being or not wear it and stand tall and proud over it.

3.4 3.4.1

April Another Day of Surprises (2012-04-20 22:43)

About a year ago I vividly remember Dad’s apprehension to talking on the cell phone. He just did not like it. He would not make calls on it and would not answer it. That was mom’s department. In fact, he hated talking on it. I think Mom would be very proud of him right now. Not only is he making phone calls when he needs to (I put my number on speed dial) but he actually likes talking on it. I got a new phone plan and Robb gave him one of his phones and he adjusted with no problems at all. In fact, sometimes he calls me several times a day! He’ll call and tell me he’s running low on milk or that he needs toothpaste. Occasionally he calls back because he can’t remember if he asked me or not. I don’t make a deal of it. I visit almost every day. I take the occasional day off because I know that I need to in order to help my emotional health. But it really is no big deal to stop by and visit for a while. Sometimes it is only for ten minutes and other times a few hours. The first thing that happens when I walk in is that Rita goes absolutely insane! I have to make my way to the couch and get on the floor. She uses me to climb up on to the couch (she’s too short to make the jump herself) and then she goes nuts for about ten minutes! It does the heart well, for sure. Then I get up and hug Dad. Yesterday was a shocking day for me and I’m still processing. Dad took of his wedding ring and put one of his Navy rings in its place. My heart sunk to my ankles but I didn’t let on. I simply said to Dad, “that must have been a hard decision” to which he responded, “yes it was”. I’m sure that the reason he took it off was that it was just too painful. To always have it on your hand to remind you that your wife is gone has to be a tremendous burden. So we talked about it for a while and then moved on to other subjects. I am not sure yet how to process that but I’ll make sure to bring it up to my therapist! I think Dad is getting bored. We’ll be working on getting him some social opportunities next week. it would be good for him to be among other people even if it is something as simple as having a cup of coffee. Dad is ready to move back to Florida. We had this conversation with Mom and she totally approved. HE is ready to leave the winters and the cold weather behind. He really wants to move back to Tallahassee but he has the image of the place 15 years ago and it has changed since then. He wants to be a part of the Older-American Program through the Forest Service but fails to remember that they stopped that program many years ago. He is fine with moving back to the Clearwater area which is where we have our sights set on. “Just as long as we can get away from the hurricanes”, Dad reminds me. He doesn’t remember we stayed through five of them over the years we were there. We talk about Mom every time I go over there. Sometimes he has something that belonged to her and he wants to get it out of the house. It is something I don’t understand but it is not my place to question. It feels strange getting rid of stuff but it must be uncomfortable for him. I took some coats she had including the last one she wore. As I walked down the hall away from his apartment, holding them in my arms, I planted my face in them and breathed in deep. The tears started immediately – it smelled c 2013 bruceandbarb.blogspot.com

135


BlogBook

3.4. April

just like Mom. I wondered if Dad did the same thing. I wonder how he feels in that place where she was. He won’t talk about it much but he says he misses her every moment of the day. What hurts is that there are so many small moments, seemingly unimportant in the grand scheme of life, that are heart-breakers. We’ll notice an item is moved. The bedroom furniture was re-arranged, and some art work exchanged on the walls. He’s making the space his own so he feels comfortable. I have noticed an on-going issue with people around him. I suppose it is common with Alzheimer’s patients. They are not sure what to talk about. For some reason there is a hesitation and a down-right fear of engaging him in casual conversation. He will rarely start the conversation but once you get going he does become engaged and involved. It is just that people are afraid to start it. The thing is – you can have the same conversation with him today as you did three days ago because he doesn’t recall it. That sounds cruel but if you use that as the starting point for conversation, somewhere in his mind that conversation is sparking interest in his brain. His brain remembers it but he can’t recall it. But it engages him – it sparks his interest. Dear Lord, what will the next surprise be? Help me face the future with courage and a smile, even in the midst of this great unknown disease. Help me remember that you are with me today, tomorrow, and always. Amen.

3.4.2

Ethical Training (2012-04-29 12:42)

It has been a challenging week around here. Dad received some upsetting news and although we won’t talk specifically about it, I want to talk about how he is handling it. My Dad’s parents seemed to be extremely patient individuals, even-mannered as well. That’s not to say they didn’t get upset or emotional. I recall a few times when Grandma or Grandpa would get upset about certain issues. But they had a unique ability to turn even the most negative experiences in to something positive. They were masters at extrapolating goodness from almost any scenario. I learned that ability from them and from my father and his brother, my Uncle. It is this same character that Dad is now emulating in his response to something that would get most people riled up and ready for war. He spoke to me of his initial response which was to cut off all persons associated with this news and move on. Then he decided to not discuss the issue unless it is brought up – at which time the associated person(s) would meet a consequence of rather huge proportion. Dad would cut them off completely. I am proud of my Dad for his response even as I struggle with my response. In his wise words he said to me, “We know the truth”. Marcus Aurelius wrote, “Everything we hear is an opinion, not a fact. Everything we see is a perspective, not the truth.” Both Mom and Dad taught me that there are two sides to every story and the truth lies somewhere in the middle. It is only when both sides understand this that true reconciliation can occur. It comes down to making positive ethical choices. There are two ways to think about individual ethical decision making the prescriptive approach and the descriptive approach. The prescriptive approach is the way we think about making those ethical choices in life. Descriptive approach offers decision-making tools that prescribe your decision based on your moral agent. It asks the thinker to carefully consider and get the most out of our ethical decision. The descriptive approach is a little less perfect in nature in that the choices are typically made with cognitive biases that usually keep us from making the best decisions. Most decisions that are ethical in nature are relatively easy to make because we have a built-in system of what is right vs. wrong. The issue is when you have to choose between two alternatives that are equally distasteful. Its difficulty lies in the fact that there are several important rights or values or even obligations to consider and sometimes you may feel like you are caught in a no-win situation. 136

c 2013 bruceandbarb.blogspot.com


3.5. May

BlogBook

My father taught me an amazing tool to make ethical decisions. When faced with a difficult decision that is descriptive in nature, simply take a piece of paper with a line down the middle. Choose a decision and write that on the top of the paper. On one side write all the positive consequences and negative ones, write on the other side. Do this for each possible decision. It will outline and give you a visual understanding of the situation and will help you make the best, intelligent, moral-centered decision. It has worked wonderfully for me over the years. My father is an amazing man with a capacity to love beyond words. His love for mom continues to this day and is a vital part of his day-to-day activities. His love is based on what is morally right in his heart and head. He carefully weighs every decision and has rarely been known to make sudden and not thought-through decisions (although I’m told that in his youth that was not the case). He also taught us to carefully weigh the consequences of every single action we make. His way of saying it was this: “Don’t ever do something you would not want to be caught dead doing”. When you think about it, that’s a pretty powerful description. We read about movie stars who die doing things they really didn’t want us knowing they did. It completely taints their image and forever rules any publicity. David Carradine – case in point. So this week many of us in our immediate family were called upon, involuntarily, to make a tough ethical decision. Each of us will make our own decision based on our biases, experiences, wants, needs and desires. We make them based on our understanding of situations and our foresight of consequences. Some of us will follow Dad’s lead while others may not make the same decision will still base it on the many lessons we have learned from this amazing man of character and faith.

3.5 3.5.1

May Mother’s Day (2012-05-14 14:49)

My daily visit with Dad went well today. He seems to be managing and coping well. We talked about my difficulty in coming to the apartment and how, most times, I leave and find myself crying when I get to my car. The memories for me in that apartment are difficult. Dad said it was the opposite for him. Although some aspects are painful, of course; he feels comfortable there because he has great memories with Mom in that space even though it was where she got so sick. He remembers the paramedics taking her out for the last time, and he says when he starts to think about the hard memories, he looks at her picture and smiles. He sees her photo next to her mom and dad’s and is happy for her, that she is with them now. He is still anxious about the idea of living 20-30 years with her. He cannot stand that thought but he’s not going to do anything to join her in a hurry. He knows when it’s his time, he will go and be with her. We talked about Mother’s Day and he said, "yep...first one without her. Very difficult". We talked about the idea of moving and he’s very open to it. The winters are hard for him and he does not like the long, cold winters. He worries a lot if he has to ride in a car in the snow and he would prefer to be in warmer climate. I’m very thankful he feels that way because I also want to be in warmer client. So we decided today to try and figure out how we can move all three of us to Florida. We will pray about this and explore all our options. Ideally we would be ready by October 1 as his lease ends September 30th. We can get out of our lease at any time. I enjoy conversing with Dad. A lot of people do not engage him because, at first, his responses are short. He rarely starts a conversation but if you go in to it with planned things to say you can be really surprised. Alzheimer’s robs the memories, not the present moment. As the disease progresses the erased/inaccessible memories will begin to impede what happens in the current, the present. Our access to our memories is what we call upon in our daily communications, in our daily activities, and in our dealings with other people. As those are compromised, I understand the difficulties will increase. I c 2013 bruceandbarb.blogspot.com

137


3.5. May

BlogBook

pray, as I’m sure most people do in my position that Dad’s memory of who I am will never fail. Although it’s difficult, I cannot guarantee that he will always remember who Mom is but if I had to set money on it, I believe he will never forget. Her fingerprint permeates every circuit in his brain and memory and I trust her presence will always be with him. Sunday was, of course, Mother’s Day. The day has now turned somewhat painful in light of having Mom in heaven, not here. But I chose to try and focus on all the things around me that Mom would have seen and taken in. The last couple of years of her life she had a profound appreciation for nature and the changing of the seasons. On a spring drive she once commented that she sees things totally different than before, and that colors even seemed more brilliant to her. So I looked for that. And found it. Thanks Mom, for opening my eyes even wider than they were before. I miss you and love you dearly. Dad is doing really well and we’re keeping a close eye on him. All his needs are met, his groceries are bought although he is probably eating way to many sandwiches. That’s slowly changing though. Just give him a little time to adjust. He misses you and loves you so much. But you know that. so enjoy the images that I saw and thought of you, Mom. Happy Mother’s Day! [for+mom+1.jpg] For you, Mom, I watched ducks on the water, and the fish swimming

[for+mom+2.jpg] I spent time thanking God for you, Mom, which I try to do every day

[for+mom+3.jpg] You helped me see beauty in simple things you would have seen the elephant picking up the large branch on the ground - do you see it, too?

[for+mom+4.jpg] You loved the flowering trees

[for+mom+5.jpg] and among the dead leaves and branches - life still emerges!

138

c 2013 bruceandbarb.blogspot.com


3.6. June

3.6 3.6.1

BlogBook

June A Moment and a Day with Dad (2012-06-07 21:51)

Yesterday we talked on three different occasions about today. I would pick him up at 6:30 a.m. and we would be running errands all day and bringing Rita to the groomer. He was not to eat as we would go to breakfast together. A note on his kitchen counter and a phone call at 6:00 a.m. Should be enough reminders of the days’ events. I show up and he’s eating his breakfast with no idea we’re going anywhere. After I remind him of our plans (choosing not to mention the breakfast thing but making a mental note to myself to get something to eat so my blood sugar doesn’t tank), he cleans up and is ready to go. He tells Rita to behave while he’s gone and he heads for the door. I come up with a quick, non-threatening way to remind him that Rita has a groomer appointment. “Oh yeah, that’s right”, he quickly responds. His response for about two years was always an epiphany. Like he knew it but momentarily forgot about it, thankful for the reminder but acting as if he had not forgotten it. Mom knew better before any of us did. I learned quickly. It began subtlety at first but grew in frequency. Now I’m fairly confident it is merely a coping mechanism so as to avoid conflict or an inevitable feeling of low selfesteem. No matter how hard he tries and regardless of how well we act through the situation, he knows enough of the truth and I can tell it wears on his assessment of self-worth. We talk in the car on the way to the vets. He asks several times, “Where’s Rita?” “In the back seat enjoying the ride” “Oh yeah, that’s right” We continue our conversation – he talks about his childhood home, the neighborhood, and the railroad tracks that ran behind their house. He talks about hoping the train as a young man to go to work in Boston and we compare that to our long drives or walks just to get to the store in Montana. He then talks about Florida and how much he wants to return – to the Tallahassee area. I gently remind him that we are trying to relocate but it will be in the Dunedin area. That always surprises him – even after we have had this conversation countless times before, and will have it about five times today. A few moments of silence go by, maybe ten, sometimes fifteen minutes, as we both watch the scenery go by. Inevitably he will see something through what I’ve come to call his snow glasses’. He’ll say, “I bet this hill must be closed off in the winter time”. It’s the same hill each time. It used to drive Mom and I a little crazy and I remember gazing in the rear view mirror to see Mom smile, roll her eyes, and just lean forward to pat Dad on the shoulder.

We drop Rita off at the vets – the one Dad swears he’s never been to before but where they all know his name, they all miss Mom, and they greet us with huge smiles. For the next six hours, while Rita is being bathed, clipped, groomed, and a few needed shots, Dad will mention c 2013 bruceandbarb.blogspot.com

139


BlogBook

3.6. June

several times that we should get home soon because Rita may have to go out after being locked up in the house this long. My heart sinks every time.

We stop for lunch at the same restaurant we stopped with Mom. There’s a wonderful photo of the two of them, one of my favorite photos, in that restaurant the day we found out Mom had cancer. Mom had grilled cheese, Dad had his BLT, and I had breakfast. It was the same menu for us today – sans grilled cheese, her amazing wit, and huge smile. Twenty minutes later Dad has no recollection of a restaurant, stopping for lunch, or eating a BLT. I feel Mom’s hand reach from the backseat to pat my shoulder. All is still well with my soul. My brother had called a few days earlier and tonight, after he called again, Dad immediately called me. He was all excited to finally’ hear from Glen after several months of him not being able to get through on the phone. The same story when his brother, Uncle Keith, called from New Hampshire. Tomorrow he will have no recollection of that. When asked if he hears from his brother or from Glen, he will ponder a bit and say, “I’m sure I have but I can’t recall the last time I spoke with either one of them”. When pushed to consider how long, his response ranges from a few weeks to several months. Mom – I need that pat on the shoulder again, please&thanks. For those for whom it has, indeed, been awhile since contact, it would seem to you up front that it doesn’t matter. He won’t remember so why waste the time and energy, right? A poor, sad, and selfserving excuse. The man is slipping for those he speaks to every day as well as ones he doesn’t. I have to figure out if short-term memory loss is only hard on those around the victim or if it’s also difficult for them. Dad knows he occasionally forgets things. He will openly tell you he’s never sure what day it is, what year or what month we’re in&he’s just glad when it’s not snowing. But this type of loss is devastating to those around him. It makes life more difficult and challenging. Creativity AND patience absolutely must go hand-in-hand. I think that is why so many people will avoid being around Alzheimer’s patients. They lack creativity and patience. They are not capable of swallowing that initial, “UGG” upon hearing something for the fifth time in an hour and they lack the creativity to pretend they are hearing it for the first time. Some try but fail miserably and the patient knows something is wrong. You can actually see them quickly retreat into their mind to figure out if they just said something wrong, offended someone, or&well, who really knows where they go, right? But when people say things like, “maybe its for the best” I stop and ask, “best for whom?” Seriously. Best for who, that the one you love has no idea he just had a wonderful lunch with you? Best for who, that he struggles with this and probably internalizes most of it which actually only serves to feed the disease even more? It’s not best for them – they are forgetting and forgetting is not synonymous with abundant blessings and the grace of God. Best for us? If it’s best for us – then why aren’t “us” spending more quality time with them? We are losing Dad. Those of you who know him and have had personal, meaningful moments in your life with this man are losing him. I hope you are not losing out on the opportunity to continue knowing this man even in light of this disease. Every day that goes by that we decide not to visit, not to call, not to write him – is a day lost. We will never have that day back again. Mom taught us all through our lives and especially in the last couple of weeks of her life, that every single moment is a treasure that 140

c 2013 bruceandbarb.blogspot.com


3.6. June

BlogBook

you need to save and store in your heart. You need to treat the moment with respect and be thankful to God for allowing us the opportunity to embrace every moment and one another. When Mom told me, upon her death bed, “Kurt, how is it possible that I am loved so much?” it moved me like nothing else ever has. For in that moment I realized that Mom has received the greatest gift one could receive in this life – that at the final hours of our life on earth, we leave with absolutely no doubt that we were cared for, and loved. We highlighted our day today but doing something that brought both of us some tremendous joy. We remembered all those who cared for Mom and for those of us who sat with Mom through chemo and radiation. We brought cookies to radiology/oncology, and medical oncology today. We were greeted with warm smiles and we shared stories of Mom and talked about what a powerful impact she made on our lives. It was good. Dad and I talked about how it felt to walk those halls without Mom. We shared a few tears but mostly we smiled, and knew that Mom would approve because we were going out of our way to let someone know how much they are appreciated, respected and loved.

Don’t allow this moment, right now, right here – to slip away unnoticed. Don’t allow any one person in your life leave this world today without knowing, beyond a shadow of a doubt, how much they are cared for, respected, adored and LOVED. The missed opportunity today could be your last chance.

3.6.2

(2012-06-19 12:34)

Dad and I went to the doctors the other day, had some blood work done and chatted with the doctor during our allotted 15 minute time slot. I adore our doctor and Mom especially adored him but I miss my former primary doctor, Dr. Glenn Toth. Appointments with him typically took 45 minutes as he took time to talk with you and then figure out how to get you feeling better were you not so well. He wouldn’t simply medicate me and push me out the door. He would explore diet, exercise, changes in environment and stress. He would even end the session with a prayer if you asked him. Our current doctor is what I call a factory model although as factory models go he’s very good but I get the feeling that he is so rushed with all that he has to accomplish that maybe he isn’t thinking clearly. And then something out of the ordinary always happens – at the end of the day, I get a call from him; checking in with us to see if we had questions and to give us blood test results and any concerns that may come up from them. He redeems himself with that follow-up so much that I continue to see him. We’re going to see another neurologist for Dad and get a CTScan of the brain to see what’s going on. His short term memory is failing quickly – too quickly for comfort. Surely there is some other issue at play here than just a disease for which we have no cure. c 2013 bruceandbarb.blogspot.com

141


BlogBook

3.7. July

I talked with the doctor about Dad’s inconsistency with taking medications. Perhaps you have a loved one for who that is a problem as well. Here’s what we first did: We purchased a weekly pill box, placed each day’s pills in the proper day and set it on the counter. For months dad was consistent. Then one day I noticed that, although it was Wednesday, Tuesday’s pills were still in its place. I let it slide. Then a few days later I noticed that, although the day was now Friday, Saturday pills were gone. So at some point this week he didn’t know if he took them or not, was confused as to the day of the week and just took them – again. Not a good situation. During the last few months of Mom’s life she was on so much medication that I had purchased plastic containers and wrote the day on them and the times for each one. It worked out well but the counter was full of containers. For Dad I decided something that I hope works. I placed the days’ pills in a small, brown coin envelope and sealed it. I made thirty of these and put the day and the date on them. Then I showed Dad how to tell what day this is by looking at his cell phone. I told him that if the day doesn’t match any of the envelopes, that means he took his pills. I THINK he gets it – he told me, “great – no date, no pills and the envelope has to match what’s on my phone”. YES! But I’m following up with daily phone calls so that he remembers how it goes. I’m nervous about it but I honestly can’t see how it will fail – oh yeah – he can’t remember the process – or he keeps looking at the calendar and figures it must be tomorrow and then takes them. Sad – and I can’t get a nurse to come in for another month. It is these types of issues that not only happen but the rules keep changing. You never know what’s going to happen when you arrive today. I find myself at his door each time pausing to breathe deep and say a quick breath prayer. Then I knock and as I turn the key I announce that it is me. Lord, thank you that my father remembers who I am and that he trusts me. Thank you for his amazingly strong hugs each time I leave and thank you that he knows I’m here for him. Thank you for the peace that you have granted to him and continue to comfort him each time he realizes that his earthly love has gone to be with you. And thank you for preparing the way for his arrival someday. Amen.

3.7 3.7.1

July Hydrocephalus - Not Our Friend (2012-07-17 16:08)

Hydrocephalus is, simply put, excessive spinal fluid (or water) on the brain. The water is there because of an obstruction, a tumor, or brain injury. Generally, the physicians do not know why it occurs unless, of course, there has been a recordable or obvious injury or tumor or obvious blockage. In dad’s case, they don’t know why its there. How did we first come to this conclusion? Well its not definitive but because Dad’s symptoms that we have been associating with Alzheimer’s have been getting worse. I’ll stop here for a point of clarification. You may be asking yourself the same question(s) we have: how could they misdiagnosis this? Well, it’s common. Hydrocephalus looks and acts just like dementia or Parkinson’s disease. You just don’t know until you do a CT of the head. In Dad’s case we did one in 2010 that did now show any significant atrophy, damage or extra fluid. The CT scan performed this year shows a fair amount of atrophy and extra fluid. We do not rule out Alzheimer’s at this point. We need to get a few more tests. The first test they want to put Dad through involves a lumbar puncture – also known as a spinal tap. Yeah, ouch! They are going to remove some of the fluid and run tests on it. They will also monitor his behavior and more specifically his walking and gait. Dad has been hunched over, shuffling his feet, has a wider than usual stance and walks very slowly. If there is a change in his gat within 48 hours of the puncture, it’s a really good indication that we have an overabundance of fluid causing pressure. 142

c 2013 bruceandbarb.blogspot.com


3.7. July

BlogBook

They will also inject a dye in to the spinal fluid, known as a NM Cisternogram. In the normal adult person the die will be absorbed within 12-24 hours. Dad will have a test done 24, 48, and 72 hours after this procedure to track the dye. If the dye is still detectable they will be able to see how far, or not, it has flowed. If it’s completely absorbed within the 12-24 hour time period, we may actually be able to rule out hydrocephalus. Dad will also undergo about 3-4 hours of psychological evaluation to determine the level of memory and recall issues. The information gained from this evaluation, along with the lumbar puncture and cisternogram, they will then determine if he’s a positive candidate for treatment for hydrocephalus. Phew – ok – got it? Great. Let’s move on because there will be a test at the end of this&ok just kidding but that would be kinda cool just to see how much you were paying attention& So if Dad does have to have surgery to fix the problem he will have a shunt placed in his head. The following is taken from the Columbia University Medical Center Department of Neurosurgery and can be found here: http://www.columbianeurosurgery.org/conditions/adult-hydrocephalus/ Ventricular shunt surgery:If a patient’s symptoms improve with spinal fluid drainage, a shunt surgery is offered to the patient (and family). The goal of a shunt is to divert CSF into another region of the body where it can be absorbed, such as the peritoneal (abdominal) cavity or into a vein just above the heart. The shunt is a soft tube that is just over 2mm (less than 1/8 inch) in diameter. The synthetic shunt material is generally very well tolerated by the human body. The entire shunt is implanted either within the skull or under the skin. No components of the shunt are visible outside of the body. Between the shunt catheter in the brain and the catheter that goes to the abdomen or bloodstream, there is a one way valve that regulates CSF flow through the shunt. If there is too much flow, the ventricles will collapse and bleeding can occur. If there is too little flow, the patient’s symptoms will not improve. &Shunt surgery is usually brief and safe. The shunt is implanted under general anesthesia in a procedure that takes about an hour. A small hole is made in the skull, and the membranes between the skull and brain are opened. The brain end of the shunt is gently passed through the brain into the lateral ventricle. The valve and abdominal (peritoneal) end is passed under the skin and then implanted into the abdominal cavity through a small abdominal incision. For venous shunts that are placed just above the heart, a percutaneous, minimally invasive technique is used. We have several tests to get through and then, if he’s a candidate for surgery, we’ll talk about it. Our family and close friends will be asked to add their opinions. The ultimate decision belongs to Dad. His questions are the same as ours: what will happen if I don’t do this, what will happen if I do this? If left untreated the pressure on the brain will eventually build up to the point of causing severe mental and physical impairments; and will eventually lead to nursing home care and death. fifty-percent (50 %) of patients will see improvement in walking while only 8 % will see changes in short term memory. So what’s the point? The point is trying to figure out what will give Dad more of a quality of life. That’s the big question and no one can really say for sure. Dad’s response to me in the car once I reviewed with him again what had just occurred in the doctors’ office: “I think I would rather be with Mom then have surgery with only a 50/50 chance of getting better. And having the same outcome if nothing were done.” He has a point. It breaks my heart. What would you do? c 2013 bruceandbarb.blogspot.com

143


BlogBook

3.8 3.8.1

3.8. September

September Another Day in the Life Of... (2012-09-03 22:49)

Everyday I walk in to the building where my dad lives. I am typically greeted by several residents who all tell me that they think Dad is doing really well. They see him at all the functions. They know he takes several walks a day and they even watch for him to return. One lady is trying to get her husband to walk with Dad but says he probably won’t get around to it. I’m blessed that even though Dad is not in an assisted living facility, he is watched and cared for daily. Many people have my cell phone number if they need me for anything. They go out of their way to talk with him and include him in all the ’reindeer games’. He enjoys it there but lately he says he is getting bored for stuff to do. Dad tells me each day that he doesn’t participate in the activities there but I know that its just his memory not recalling his participation. The residents and the manager, Jill, tell me otherwise. It’s ok and I just tell him that he can go when he is comfortable. I try and make sure he has a few singles on him every day so he can make the donation when they have events.

Interestingly enough I had a wonderful talk with the neuro-psychologist, Dr Ebem Schwartz, during Dad’s recent extensive testing. He is a recent transplant from Lebano, NH and is a really nice individual to talk with. While I explained things to him and told him I want to get Dad to an assisted living facility he kindly interrupted me and said, "don’t kid yourself, Kurt. You are providing an assisted living facility for your father - we need to get YOU the help to provide for your father". I was totally blown away by what he said but it was also a great affirmation that so far, we are doing things well. Mom would be pleased. Still, Dad’s short-term memory issues are of great concern. Dr. Schwartz said that I did not have to call for a follow-up appointment, that all information would be forwarded to the neuro-surgeon, unless I wanted to. The very next morning he called me and said he would like to talk with me about Dad’s results. Not exactly encouraging BUT I’m glad he went out of his way to contact me. Typically the results can take up to two weeks to process but they rushed this one for me, knowing I was meeting with the neuro-surgeon this week. 144

c 2013 bruceandbarb.blogspot.com


3.8. September

BlogBook

I have done a lot of research on dementia/Alzheimer’s VS hydrocephalus and so far, I’m not truly convinced that hydrocephalus is our culprit. It is true that the two cross paths in many symptoms and characteristics but I’m not convinced yet. Maybe my mind will be changed this week. Our biggest concern is what will happen to Dad if we elect surgery to help with the hydrocephalus. It is highly documented that dementia patients who undergo surgery have a very difficult time coming back as a result of the anesthetic. We are not making any hasty decisions. The bottom line is this: with hydrocephalus and dementia/Alzheimer the end result is the same...nursing care and eventual death. If surgery to help the first one puts him on a fast track to the end result, why would we choose that? I am keeping my commitment to my parents by keeping them informed. It is tough because I know Dad doesn’t recall my telling him things and he is always surprised to hear about them. But I MUST stay focused on my commitment. A wonderful family member recently told me that its important to live in HIS reality, not mine. What wonderful words of advice from a lady who is watching her beloved slowly taken away by Alzheimer’s disease.

Dad and I talked about nursing care. He doesn’t want it but he knows that if he goes its because he has to. He trusts me that I’m not going to drop him off somewhere and leave him be. That’s not what I promised and I’m not going to do that. If I could give one piece of advice to people about aging, it is this: prepare financially. It is very expensive to grow old in this country. Whether we can have our elders under our same roof or in the care of professionals it takes a lot of money and its just going to get more expensive. Plan. Prepare. Make the commitment today to not be a financial burden but more important make the commitment to YOURSELF to have enough financial resources so that YOU, in the autumn and winter seasons of your life, are as comfortable as possible. c 2013 bruceandbarb.blogspot.com

145


BlogBook

3.8.2

3.8. September

The Results from the Neurosurgeon (2012-09-04 20:26)

What an early day once again. Dad stayed home while I made the drive to the neurologist to talk about the results from Dad’s spinal tap. I met with Dr Kenneth Reichert a neurosurgeon on the same team as the neurosurgeon who performed Mom’s brain operation last November. The results are in and he is positive for hydrocephalus. Here is the official report for those of us who like to read medical bumbo-jumbo: TECHNIQUE: 0.69 mCi of of indium 111 DTPA was intrathecally injected followed by 30 minute imaging of the thoracolumbar spinal canal. Subsequently, 4, 24, 48 and 72 hour anterior, posterior and lateral planar imaging of the brain was performed. FINDINGS: Initial 30 minute post lumbar puncture images of the spinal canal do not demonstrate any the leak/extravasation of tracer. Four hour images demonstrate physiological tracer uptake within the basal cisterns, sylvian and interhemispheric CSF spaces; there is also prominent lateral ventricle activity. 24 hour images also demonstrate prominent lateral ventricle activity, minimally decreased from 4hrs. There is some physiological tracer uptake tracking along the cerebral convexities. 48 hour images demonstrate further migration of CSF along the cerebral convexities however there is decreasing but persistent tracer uptake within the lateral ventricles. 72 hour images do demonstrate near resolution of activity within the lateral ventricles with additional tracer migration along the cerebral convexities. However, there is no significant sagittal sinus activity even at this time. This delayed CSF migration pattern with tracer reflux into the lateral ventricles is suspicious for communicating hydrocephalus. IMPRESSION: There is delayed CSF migration pattern with persistent tracer reflux into the lateral ventricles up to 48 hours, suspicious for communicating hydrocephalus. [Dad,+day+of+injection.jpg] Day of spinal injection; typical; you see the dye in the brain and down the spinal cord. Nothing significant - as expected

[dad+four+days+later.jpg] Four days later, should not being seeing signs of dye; still showing about 6.29 inches down the spinal cord and in the brain.

146

c 2013 bruceandbarb.blogspot.com


3.8. September

BlogBook

But what does this mean? Yes, there’s excessive spinal fluid on the brain and it is possible it is affecting his short term memory. Here is the breakdown form the doctor. [Dr_Kenneth_Reichert.jpg] Dr Kenneth Reichert Neurosurgeon

Dad’s a candidate for surgery whereby they would place a shunt in his brain. The procedure would mean he would probably be between the hospital and rehab/nursing care for up to two months while he recovers. Then he will require assistance at home for an unspecified amount of time. The surgery has a 70 % chance of improving dad’s walking – which isn’t really a concern right now. The surgery has a 60 % chance of correcting incontinence – which Dad isn’t experiencing right now. The surgery has a 40 % chance of correcting short term memory loss – of which Dad has a significant loss. If we do nothing, Dad will decline and eventually require nursing care. If we do surgery there’s a 40 % chance that he’ll be able to eventually get back on his own. However, he will require assisted living and other protocols in place to always monitor how he’s doing. Dad will always be a fall risk, too. With surgery, there’s a 60 % chance he’ll require nursing care starting immediately and for the rest of his life. The odds are not exactly in his favor. This Friday I will meet with the neuro-psychologist and find out their take on Dad’s condition. I spoke to Dad today about it for about an hour or so. The first thing he said was, “well tell the Doctor I don’t hear any sloshing around and I’ll let him know when I do!” That’s my Dad – always quick to shrug things off with a joke. But he realizes the serious nature of this issue. He is prepared for his life to change drastically IF he chooses the surgery. I told him we will make the decision as a team. He told me he wouldn’t want it any other way.

3.8.3

The Night Before... (2012-09-06 21:28) [Mom+and+Dad+Wedding.jpg] Wedding Day, Mom and Dad

[Mom+and+Dad+Holy+Hill.jpg] 50 years Later

Today would have been my parents’ 51st wedding anniversary. Now we all know they were pretty young when they got married and the managed to beat all the odds! They celebrated their 50th wedding anniversary in 2011 with friends and family and cake and lots of smiles and some tears. We did not c 2013 bruceandbarb.blogspot.com

147


BlogBook

3.8. September

realize, of course, it would be their last anniversary together but Mom had a pretty good idea it was very possible. Seven months later she would pass away with her beloved at her side, holding her hand. Always there, always strong, always together. Today I grocery shopped for my father as I do about every two weeks. On the list:

• Ritz Crackers • Bread (about ten loaves a month is what he goes through) • Yogurt (about 6 a month) • Turkey Burgers • Grape Jelly • Peanut Butter • Cheese • Honey • Canned Veggies (he doesn’t like the frozen stuff) • Something special from the bakery

148

c 2013 bruceandbarb.blogspot.com


3.8. September

BlogBook

Dad’s diet is extremely predictable. The first 2-3 months after Mom’s passing he pretty much consumed peanut butter and jelly sandwiches. We averaged 5 jars of peanut butter and jelly a month! Finally I sat him down and told him we need to change up the diet. It took about a month to get through to him including me going over there and cooking for him on occasion. Now he cooks a turkey burger and veggies three times a week for his supper. Once a week he’ll eat a turkey breast with veggies, the rest of the time its sandwiches. At least I got him eating more protein and veggies and I get him sugar free bread now. He doesn’t know the difference. Phew! After we visited for a bit I decided not to remind him of the anniversary date. It hurt my heart a little bit but I have to remind myself that its ok. We talked about it the day before but within a matter of ten minutes he completely forgot. There is no doubt of his love for Mom – nor has there EVER been. The love was witnessed for 50 years and the love continues in his heart and the deep recesses of his memory. He still knows who she was and still talks with her every day. My goal is to talk about her every single time I see Dad so to help him keep her memory alive in his brain. Dad called me tonight sounding pretty worried and anxious. I can hear it in his voice almost immediately. He wanted to know if Mom’s brother, my Uncle Bob, knew about Mom’s passing. My heart dropped to my ankles but remembering the words of Jean Clifford, wonderful wife to my father’s cousin, Dave; “live in HIS reality, not yours”, I calmly said, “yes, Uncle Bob was informed and he even got to speak to Mom two days before she passed and then again about one hour before she passed away”. This was the fourth time since Mom’s passing that he has asked this question. It’s a phone call that I was witness to because I held the phone to Mom’s ear while her brother told her fond memories of their childhood and told her how much he loved her. They had resolved any differences between them several months earlier and their love for one another was very strong. I don’t’ expect Dad to remember that particular instance but I pray every day that I never forget a single moment of those 5 days in hospice.

Tomorrow I will meet with the neuro-psychologist, Dr Schwartz. I am nervous about the meeting. He will tell us that either Dad has mild dementia that’s probably a result of the hydrocephalus or he’ll tell us that Dad does have Alzheimer’s and he’ll name the stage they feel he is in. I am confident it will be the second option and I THINK I’m ready for it. What I’m NOT ready for right now are the plans we may well have to put in to place should the doctors’ feel that Dad’s Alzheimer’s requires assisted living, now. They recognize that Dad is getting, for the most part, assisted living from us but he also recognizes the need for 24-hour professional assistance should anything happen. Let’s face it – I’m not going to get an email or a reminder on my iPhone that says, “you are hereby notified that your father’s condition will officially get to the point of no return on such-n-such a date and time”&he will be a fall risk sooner than we want. He will be a risk for leaving the stove on, or forgetting to lock the door or take his keys with him. These are things that are difficult for those of us who know him to think he would forget. Every day for years and years Dad has put his keys on his belt, has double checked the stove and oven before going to bed, and has always locked the door no matter how far away he may wander. And any day now Dad may very well be on a walk and forget where he is. Worse, he’ll forget his phone that day and forget that his address is in his front pocket to show someone for help. Perhaps it is time for me to wake up and maybe tomorrow will be my huge wake-up call. Am I in denial? Perhaps – and probably to an extent. Dad is still his charming, funny, c 2013 bruceandbarb.blogspot.com

149


BlogBook

3.8. September

witty, loving self but every time we are together there are very obvious, stark reminders that things upstairs are not processing the way they should be.

Dad loves to talk about his younger days. He remembers those really well. I think my dad was and still is a very handsome man and I’m so very proud that he is my father. Dad and I talked about a nursing home and he says he totally trusts me and that if I feel it is the right thing to do, he says he will honor my decision. I love my father and he loves me.

So on this eve of breaking news (and here’s hoping it’s nothing big’), I find myself thinking about the future and what else I need to sacrifice in order to provide my father with the same level of care, safety and security he provided for Mom and all of us kids for over 50 years (ok, for me, only 45 years!). He deserves the best in the autumn and winter of his years.

3.8.4

May I Have the Envelope, Please? (2012-09-07 16:31)

The drive to the doctors’ office was long. It was one of those drives where upon arrival you wonder how you got there and if anything happened along the way. My mind was several thousand miles away. 150

c 2013 bruceandbarb.blogspot.com


3.8. September

BlogBook

As I walked down the hall to the doctor’s office I imagined I was walking down the actual corridor of the brain that goes on strike in so many people as they age. Whether it is the process of aging, dementia or full-blown Alzheimer’s disease, the corridor is the same. I imagined the plaque that develops along those corridors and saw in my minds’ eye large tuffs of yellowish-white masses hanging from the walls and the ceiling. I intentionally walked slower down the hall not really wanting to hear what I already knew in my mind and in my heart. I paused at the door and remembered when Mom and I brought Dad to this very same office in 2010. Mom and I went out to lunch and did some shopping while Dad underwent a series of tests and here we are two years later, with so many stories have come and gone, and so many internal and spiritual tests as well. I barely sat down and started reading the People Magazine on Prince Harry’s Las Vegas trip when the doctor came out and invited me back to his office. Out his office window a large crane was hoisting construction materials on to the roof and I thought how much the place has already changed since Mom and I were here last, although we were in the office next door at the time.

The doctor presented me with Dad’s test results, knowing how much I love to research these things, and then proceeded to walk me through some of them. In 2010 Dad was diagnosed with mild dementia, having scored fairly high in most of the exams. Here we are two years later and Dad has received a diagnosis of moderate to severe Alzheimer’s. The doctor explained that they traditionally do not ascribe to the seven stages of Alzheimer’s due to the fact that they cross over one another and they can paint an inaccurate picture of the patient. He was, however, nice enough to tell me that if he were to c 2013 bruceandbarb.blogspot.com

151


BlogBook

3.8. September

ascribe to the stages, he would place Dad between Stage 5 and Stage 6, having some symptoms of both stages but not all of them. He said that the neuro psychological world prefers to stick with three basic stages: Mild, Moderate, Severe, and identify cross overs when necessary. In Dad’s case, the high end of moderate drifting in to the low end of severe. If we were to see the continued rate of decline that we have seen in the past two years, Dad will be in the high end of severe within the next two years and within 4 to five years he will require full-time nursing assistance and the man we know today will be, for the most part, long gone from us.

A few of the tests were explained to me. The scores can be thought of as percentages but its dangerous to think of them as ONLY percentages as that could paint an unrealistic picture. For example, immediate remembrance of things that have occurred in the last fifteen to thirty minutes was scored at 89 in 2010, and now is around 50 today. However, if you were to assume 50 % it would be incorrect as Dad only recalled 10 items out of 40 (not all at the same time) even when prompted. He would be presented with a list of items with words and pictures and they talked through each one. Ten minutes later he was shown the same items and asked if he could recall if they were on the first list. He was able to identify 10 out of 40. He did worse when it came to numbers, not being able to recall any of them. His ability to retain immediate information is severely impaired. Dad was disoriented at the testing and was only able to state the current year and state he lived in. The examiner reoriented him, telling him the correct answers, but 10 minutes later, he was no better able to answer these orientation questions. He was not able to recall 3 words after a brief delay and did not benefit from cuing. The report goes on and on but I will not share all the details here. Suffice it to say it was not a good result. The Doctor is recommending to move Dad to an assisted living facility within the next few months. They recognize that he is getting a high level of care provided by my daily visits and the tasks that I do for him, but they recommend moving him so that he can have access to the professional care should that time arise. There are other financial reasons why moving him to an assisted living facility now is better than waiting especially if we wait till we need it on an emergency basis. Getting him there now will also ease the transition to a memory unit when that time arrives.

So what about the surgery and the hydrocephalus? Surgery will be discussed with Dad but in conver152

c 2013 bruceandbarb.blogspot.com


3.8. September

BlogBook

sations I have had with him so far indicate that he would lean towards my recommendation. He’s not crazy about the idea of surgery. The neuro-surgeon says Dad has a 40 % chance of getting his short term memory back but that was BEFORE he read the results of the neuropsychologist. Dr Schwartz says that 40 % is extremely generous and that the number is likely closer to 15 %. There is significant atrophy of the memory pathways in the brain and you cannot reverse atrophy.

The bottom line for me is that the risks of the surgery far outweigh the possible benefits. I will present Dad with the facts and let him make his own decision. The facts will also be shared with close family and we will all offer Dad our support.

Dad still has that great smile, a slightly warped sense of humor, and very healing hugs! Love you, Dad!

3.8.5

The Day the Coffee Died (2012-09-24 11:46)

This morning I awoke to yet another reality call. It came in the form of a phone call from my Dad. He sounded upset with the first sound that came from his mouth. He said the coffee pot was “broken all to hell” and that he wants instant coffee from now on. I could hear that he basically just had an argument with the coffee maker and it almost won. In a final act to claim victory he took the machine and smashed it to bits under his foot and threw it in the trash. To further add injury to his victim he wrapped up the garbage bag and walked down three flights of stairs to the basement and threw the bag in to the dumpster, disposing all evidence that a coffee-crime had been committed. Upon arriving back home he took all the remaining coffee grounds including the two brand new large containers of coffee, opened them, poured them in to the garbage disposal, and sent it all to a watery grave. c 2013 bruceandbarb.blogspot.com

153


BlogBook

3.8. September

I fought the urge to go a little crazy. A dear friend had just purchased this coffee maker right after Mom passed away. Robb and I had purchased two large containers of coffee for him. So here’s the hard part – remembering the wise words of my second cousin, Jean Clifford (“live in his reality, not yours”), I simply said we’ll take care of it. I had to fight the urge to say SOMETHING. I wanted him to realize that none of his actions made sense and then I realize that yes, to him, they made perfectly sound sense. So here’s the logic path that Alzheimer’s patients follow and you simply cannot and SHOULD not fight it because it is logical. 1. Coffee pot is not working right a. Must be broken i. Throw it out 2. No coffee maker a. coffee grounds not necessary anymore i. Throw them out I’m upset but there’s nothing I can do about it and all He did was take one logical step after another. Alzheimer’s does not allow the victim to think through possible outcomes and to problem solve. They no longer have that software. It’s like asking your computer to open a program with Microsoft Word when you do not have Microsoft Word installed on your computer. Instead it may open the file as a text file and all formatting will be lost. It just won’t work because the software is no longer installed. Today I will go over to Dad’s and we’ll talk about the fact that we have to wait until Thursday, payday, to rectify the coffee issue. I’ll pray to the heaven’s that the angels guard my tongue and I fight any urge to correct him or instill at least one sense of you were wrong’ in his head. He’s not wrong. He’s right&it is his reality, not mine. 154

c 2013 bruceandbarb.blogspot.com


3.9. October

3.9

3.9.1

BlogBook

October

The Day the Coffee Died...Part Two (2012-10-20 11:17)

It was a crisp, cool fall morning. The leaves were not yet crunching under foot from the morning moisture and the squirrels seemed busier than ever....OK I can’t do this... so he threw the coffee maker away again...the one we bought for him less than a month ago because he threw out the other coffee maker. Yet, I can’t scold him, I can’t remind him not to do that, I can’t say anything but, "OK, we’ll figure something out". But no more coffee makers. I believe it may be a good time for Dad to switch to instant coffee, which I’m pretty sure he will not enjoy. I may be surprised though. The last time he had instant coffee was about two years ago when Mom was in the hospital. He hated it. He took one sip and threw it away. This time I figured out the issue: he puts a coffee filter in when the coffee maker has one already. The water goes in faster than it comes out so you get coffee all over the counter. I know what your advice is - "you should have thrown away the coffee filters when you bought the new coffee maker"....We did. Yep. We did. And Dad is familiar with these types of machines but one day he woke up and thought, "I need a coffee filter in order to make coffee" and he walked next door to borrow a few filters. His reality - not mine. Most people around me will give me their best piece of advice on ’handling’ a patient with memory issues. The advice is golden and each time I hear it it’s like I’ve never heard it before. It’s a revelation and I can’t believe that I fail each time I put it in to practice....yeah, I can’t do this either... Notes don’t work, people. It sounds like great advice and it makes sense to all of us but not to a dementia patient. They don’t read them and if you leave them around the house they get thrown away. Why? Work with me on this one. You have no memory issues at all. Now there’s a note taped to the bathroom mirror to remind you to shut the shower faucets off. But why would you need that note? You have no memory issue and its common sense to shut the shower faucets off so you throw the note away because, after all, its silly, right? Are you following me on this one? You have no memory issue so these notes don’t make any sense to remind you of the things that are obvious so why are the notes there? Throw the notes away after all, you aren’t a third grader, right? Notes. Silly ideas when you have no memory issue. His reality - not ours. c 2013 bruceandbarb.blogspot.com

155


BlogBook

3.10

November

3.10.1

Lord Grant Me the Grace to Tell Them So (2012-11-04 13:58)

3.10. November

The path of aging is one that none of us can avoid. We try and one must admit that the typical 50-year old today looks and acts a lot younger than did 50 year olds in 1940. We have been able to slow the ravages of age on the outside and to some degree on the inside as well. But in the end, the joke is on us because we will all grow old. Our hair, if we are lucky enough to keep it, will gray, our teeth will lose their appeal, body functions will dwindle out of our control and our minds will not be as sharp as they once were. It is a process. Andy Rooney once said, “It’s paradoxical that the idea of living a long life appeals to everyone, but the idea of getting old doesn’t appeal to anyone.” My parents spoke of their growing years openly and frequently. My mother fought it with every ounce she had. She took great care of herself from diet to exercise to facial creams and lotions. Cancer tried having the last laugh but even in her dying Mom remained radiant and beautiful. I can still see her hands and face moments after her passing; so smooth, so ivory, and glowing. She was beautiful. Dad’s rough past and hardworking year’s show but still he looks pretty darn good for being 71 years old. Alzheimer’s is playing out its cruel hand of punishment on my father from his walking, to his ability to exercise and take in nutrition, and even on his face. Sometimes I gaze into his eyes and try to find the man of his youth. That man continues to move farther and farther away but there is still a light that shines out from his beautiful blue eyes. At times they look at me as if begging for help, curious to know why he is unable to do this or that. Other times he looks at me with the unfaltering, unconditional love that defines my father and that only a father and son can share. We embrace every day and the hugs tend to last longer than they used to. I sense it is his spirit hanging on to every last portion of memory that he is able to, fully knowing that he is being robbed of his precious moments upon every tick of the clock. There are moments when he seems lost. His eyes go almost empty and his body appears stressed – unsure of its footing and not sure in which direction to move. Those are the harsh reminders of age.

My father is falling as graceful as possible in to the abyss that is called Alzheimer’s. With the love and support we continually shower upon him we can only pray that his winter years are kind and gentle. “Prayer of an Anonymous Abbess: Lord, thou knowest better than myself that I am growing older and will soon be old. Keep me from becoming too talkative, and especially from the unfortunate habit of thinking that I must say something on every subject and at every opportunity. Release me from the idea that I must straighten out other peoples’ affairs. With my immense treasure of experience and wisdom, it seems a pity not to let everybody partake of it. But thou knowest, Lord, that in the end I will need a few friends. Keep me from the recital of endless details; give me wings to get to the point. Grant me the patience to listen to the complaints of others; help me to endure them with charity. But seal my lips on my own aches and pains – they increase with the increasing years and my inclination to recount them is also increasing. 156

c 2013 bruceandbarb.blogspot.com


3.10. November

BlogBook

I will not ask thee for improved memory, only for a little more humility and less selfassurance when my own memory doesn’t agree with that of others. Teach me the glorious lesson that occasionally I may be wrong. Keep me reasonably gentle. I do not have the ambition to become a saint – it is so hard to live with some of them – but a harsh old person is one of the devil’s masterpieces. Make me sympathetic without being sentimental, helpful but not bossy. Let me discover merits where I had not expected them, and talents in people whom I had not thought to possess any. And, Lord, give me the grace to tell them so. Amen”

3.10.2

Inside the Mind of Alzheimer’s (2012-11-06 17:08)

I would like to try to take you into the mind of an Alzheimer’s patient for just a few moments. The task is difficult but the first thing you must do is forget all of your basic assumptions and your particular logic. You must take your steps of logic one at a time. Typically we run through the logic steps quickly, coming to a conclusion and acting upon that conclusion. Not necessarily so with memory patients. To grasp what is happening we must put aside our realty and try to see the world through their eyes. We take the first logical step and if we do not recall if we acted upon that step, then we act on it without even a notion that perhaps there is another logical step beyond that first one. Reasoning is the process of consciously making sense of things, for establishing and verifying facts, and changing or justifying practices and beliefs based on new or existing information. Consider what happens, though, when the information you receive is never new and it never existed before? As family and loved ones of the patient we must continually be alert to the digressive nature of the disease AND to the basic human instinct of hiding our faults. An article by the Alzheimer’s Organization is very helpful and I strongly recommend reading it. I have a copy of this online for you to simply read. You can see the link to the article at the end of this blog entry. Dad does have moderate to severe Alzheimer’s. On the Alzheimer’s Association scale he has most of Stage 5 and most of Stage 6 symptoms. The neuro-psychological world does not prescribe to this scale. As the Alzheimer’s Association says, it is difficult to place someone in a particular stage as they overlap. What can Dad do and what can he not do?

• reflexes are very slow and therefore he does not drive. • requires verbal reminders because he ignores written ones • is not able to balance a checkbook • has lost most of his understanding of cost and money. Sometimes unable to tell you if 50 is less than or equal to 100 without some time to figure it out. • is unable to recall recent events, as recent as two hours ago. • cannot count backwards from 100 by 5’s or 7’s. • is not able to plan, manage or organize complex tasks such as shopping, making a grocery list (for example his last list to me asked for 24 boxes of cereal. His pantry already contained 12 of them) c 2013 bruceandbarb.blogspot.com

157


BlogBook

3.10. November

• is not able to communicate health concerns to his physician • is unable to recall his current address, telephone number, location, date, day of the week, etc. • knows who he is and the names of his children but rarely recalls his grandchildren’s names • personality changes include more tearful moments, ease in expressing emotion but prone to agitation and outbursts of anger • is closed-off during social settings and is rarely unsure of the time frame or reason for the gathering • experiences disturbances in normal sleep-waking cycles • unaware of surroundings other than his one apartment • cannot tell you where something is in his apartment if asked • has repetitive behaviors such as scratching his arms, fidgeting to the point of causing damage to clothing materials and arms of chairs, etc Dad is able to care for his personal needs, bathing, etc... or so we assume. I check his dirty laundry and track towel and clothes usage and so far have not been able to detect any changes or lag in their use. His toiletries get regular use. A nurse will be involved in double checking beginning in two weeks. It will be masked as a weekly physical but they look for areas that may not be getting clean, extra dry areas or damaged skin such as rashes or fungus. His kitchen is always clean although he does not do deep cleaning and so either my nieces come over to do it or, like I’ll do tomorrow, I’ll get down on my hands and knees in the bathroom and do some hard-core cleaning. He will tell me he keeps up with it and I will not show him that he actually is not doing a good job in that department. So back to the idea of getting in to his mind - you’ve seen a bit already. He believes that since he runs the broom over the floor that everything is clean. In his mind it is simple: there is no garbage on the floor and no one steps on dirt therefore it is clean. Let’s take this from another viewpoint, though. Here are a few examples and I’ll start with the now-infamous coffee pot disasters of March, September and October 2012. Coffee pot overflows one day - it is broken - throw it away Coffee pot is gone - coffee grounds not needed - throw them away There is meat in the freezer - obviously I eat meat - my diet is fine I do not recall eating lunch today - I must not have eaten - I’ll eat again I don’t recall having a bowl of ice cream today - I will have one There is no mail to read - I must not have gotten it - I’ll go check (up to 4X day) I don’t remember if Kurt was here today - call him to ask when he’s coming today The floor appears clean - therefore I obviously clean the floor Today, what would you assume did not get accomplished if you did not remember doing it? Laundry, breakfast, dishes, teeth, kids’ lunch, bills paid, phone calls made, Facebook updated? Getting the idea? 158

c 2013 bruceandbarb.blogspot.com


3.10. November

BlogBook

I have a sour gut - haven’t had this in years - call Kurt for medicine What he doesn’t realize is that is the third time that week, and the fifth time that month he has made that call. I just received a wonderful phone call from XYZ - it’s been months since the last time we spoke Haven’t spoken to XYZ in a long time - they must not know that Mom passed away I can see HOW it can be easily justified in the minds of family and friends to not visit, call or write an Alzheimer’s patient. They won’t remember it so why bother, right? Frankly that attitude disgusts me. Those who forget the Alzheimer’s patient will be among the first the patient forgets. Then how will you feel the day you show up and that person has no clue who you are? Dad loves cards and letters. He feels loved and remembered and he treasures them for weeks, keeping them next to his chair and sharing them with me every day. Often he calls to tell me he got a card or letter from so-and-so and you can hear the joy in his voice and smile on his heart. Does it really matter if he doesn’t remember your phone call from yesterday? What should matter is right now - right here the present. Why are so many people so selfish that they ignore the aging to protect their own feelings? You think that I don’t cry each time I leave my Dad? Of course I do. It’s hard - but how lonely it must be for the patient. My Dad’s cousin has Alzheimer’s and is in a nursing home. His wife calls and visits regularly as does a visiting nurse who spends time with him. Dad’s cousin knows who they are and is often glad to see them. These people, and others, make a point of being involved in his life regardless of the disease. There is still a person in there - a person who feels, who has emotions, and has emotional needs. If there is someone you have been purposely ignoring (although quietly justifying it to yourself) I dare you to step up and contact them. Send a card, a note, a phone call, a visit with a gift of a snack is always a nice start. Don’t plan to stay long as they typically tire easily but take a step for them. Chances are its a family member or loved one who has taken many steps and sacrificed much for you over the years. It is time to repay them. You’ve heard me say this before but it bears repeating: on my Mom’s deathbed, when she was still able to speak; upon seeing the cards, flowers, and presence of so many people around here and the outpouring of love said to me, "why is it that I am so loved this much?" My response was simple: because its your turn now to receive that which you spent your whole life giving. Here is the link to the article: You’ll need Adobe Reader to view it Click Here to Download Adobe Reader for Free Click Here to View This Helpful Article

3.10.3

A Visit to A.L. Facility #1 (2012-11-18 12:56)

Dad’s official diagnosis of Alzheimer’s included a recommendation for assisted living. Dad does pretty well where he is but here’s what haunts me on a daily basis: there is no warning system that tells me in advance that Dad will suddenly forget where he is, or that he’ll fall, or some other issue. We did receive notice that Dad qualifies for a program called Family Care that will help pay the incredibly high costs of assisted living (typically between 4000 and 8000 a month!). First things first...I don’t want to do this. I want Dad to stay where he is or come live with me but I’m not sure those are the BEST options for him. I need to step out of what I want and keep focusing on Dad’s needs - his safety, his health, his qualify of life, his sense of belonging and self-worth. I need c 2013 bruceandbarb.blogspot.com

159


3.10. November

BlogBook

to focus on giving Dad as many opportunities to find a place in this world. Until March 1 of this year Dad was a husband. Now that identity no longer applies to him. After 50 years that has to be an amazingly difficult transition to make. He has been a strong father but in recent years his ability to remain strong for his kids is limited due to this disease. There are many things about Dad that have not changed and the strongest of those is his heart and his love for his family. THAT is what I need to focus on while helping Dad to cross the bridge to this next path along his life journey. Yesterday I had a wonderful visit with Judi from The Lighthouse of Mequon, an assisted living for Alzheimer’s and Dementia patients. The first thing that impressed me occurred when I walked in the door. Most of the 16 or so residents were in the community area being social. The smell of homemade food was in the air and the place was amazingly clean. The first question that came to my mind was, “did they prepare for my arrival?” We talked in depth about Dad, sharing his life story with her and another staff member before we toured. She shared with me the philosophy of the home and I was impressed to say the least. They focus on making sure each resident maintains a purpose. That’s the first time I’ve heard that statement and I liked it. Here is an excerpt from their Foundational Belief Statement: All seniors deserve attentive, personalized respectful care that enables them to live with purpose and age with dignity. ...we believe all of our residents really want from us: • To Understand Me • To Protect Me • To Include Me • To Surprise Me • To Inspire Me These ideas have, in turn, become our company Values:Hospitality, Integrity, Security, Passion and Fun. Then we had the tour. An beautiful open-air atrium, an open-concept home with living, dining and kitchen areas exposed to one another. It really felt like someone’s home. A walk down the few corridors and we saw rooms. Some have a private bath and others do not. He would have his own room and would not have to share it with anyone. We can paint the walls whatever we want and bring as much of his own furniture as we can shove in there. They can provide a single bed, dresser and chair. The only thing they would have to provide for Dad is a bed and maybe the dresser but it would be up to him. Then came the finances. Dad is qualified for county assistance called Family Care. Basically, Dad would need to pay a rental fee and then all other expenses would be covered. However, in this particular facility they require two years of private pay first. That would come to a total of about $124,000. Yep, 124K That’s a lot of money and out of the realm of possibility right now. I liked the place but my heart is heavy about putting’ Dad somewhere. The ultimate decision is his and right now he says he would probably enjoy something like that. But when I think of the first couple of nights, walking out the door and he in a single bed after sharing one with Mom for 50 years – and a new place, new sounds, new smells, etc. I cried a bit last night just thinking about it. 160

c 2013 bruceandbarb.blogspot.com


3.11. December

BlogBook

One of the options I’m considering is having Dad move in with me. There is funding available that will help with expenses which would be necessary. But that would mean I need to either find a large, 3-bedroom home to rent or position myself to buy a home in the next 6 months which is not a possibility. Very discouraging and I wish like crazy that Mom was here to help with the decision. She trusted me. She told me before she died that she knew I would never leave Dad and that all my decisions would be in his best interest. That doesn’t make it any easier though. I was invited to come back at any time, with no advance call. Dad and I were invited to call ahead one day and let them know we would like to come for lunch or dinner at just $5 a person. I was also given a short list of things to look for in other facilities and then to let them know my comparisons, whether good or bad. My first impression is overall wonderful. The people, the facility, the energy and spirit in that place seems to suit Dad pretty well. I would feel confident that he would fit in and find a place and purpose. It is on the ’if we could afford the first 2 years list’ but regretfully, unless I can find other financial resources, it’s not going to happen. All is not lost yet as this company has other properties in this area (just not this county) that accepts Family Care immediately. I will speak with our county advocate on Monday about this option. I have my second facility to visit this week. We will have much to compare and many more notes, I’m sure. If you would like to visit the website and check out where I went you can find it here: http://www.npseniorliving.com/mequon.php

3.11

December

3.11.1

A "Little" Housework (2012-12-16 20:06)

A visit with Dad today found him once again sitting in his usual chair with the laptop on his lap. He was playing solitaire. He enjoys the game and will spend several hours a day playing that and a few others. Any attempt to teach him new ones is pointless at this time. He isn’t interested in anything else but his games. That’s not a bad thing right now - at least he still remembers how to start and stop the computer and play his games. We talked for awhile and then I took his vitals. I bring over a red medical kit with me everyday now. I take his blood pressure and check his blood sugars three times a week. A routine check of his feet showed excessive drying and some cracking so we spent time soaking his feet and working on them. Then we covered them in bag-balm and stuck socks on them for awhile. Tomorrow we’ll soak them again and then get in to a daily routine of checking them and making sure we keep a fine line between dry yet moist enough. That can be a battle for most of us. I’ll call the nail clipper person this week and make an appointment for them to stop by Dad’s and clip his nails for him. He can reach them but he doesn’t clip them. I’ll let a professional do that although I’m fully capable - some things you just want c 2013 bruceandbarb.blogspot.com

161


BlogBook

3.11. December

to leave to the professionals. A shopping trip two weeks ago brought him, among other things, a dozen hamburger patties. He typically eats one a week if we’re lucky. Today they are no where to be found. He didn’t eat them. They just disappeared. I’m assuming he didn’t know what they were and just tossed them out. I am now committing to being at Dad’s for a meal so I can make sure he’s eating more than sandwiches. The home delivered meals was a complete bust but he’ll have a harder time saying no to me when I’m cooking it for him and sitting there eating it with him. The reality is setting in: Dad will not be able to live independently much longer. I am now taking care of two households and that will break me after a while. Cooking, cleaning, shopping, bill paying, health needs, medications...the list goes on. I feel like a doctor when I go over to his house, checking everything from his feet to the top of his head (but leaving personal areas to the doctor, of course!). You might recall Dad had some skin cancer removed from his face and back two years ago. So we need to keep up with that at least weekly. In an ideal world my father would be living with me right now. Working out the details to that is actually pretty tricky but we will find a way. We talked about the horrible tragedy in Newtown, CT today. He was heart-broken, as we all are. He just couldn’t understand it. He said, "Well, maybe Mom is part of the welcoming committee up there and helping them to feel welcome".

3.11.2

Foot Care Day (2012-12-18 17:34)

[snow+out+dads+window+2012.jpg] Scene outside Dad’s window. He sits in his chair and this is what he gets to see.

Today was the first big snow fall of the winter. And wow were the flakes HUGE! As I walked in to the place Dad lives I was greeted by several of the ladies who talked about how Dad is such a wonderful part of the exercise group! They go upstairs to get him and walk him down to the community room. Dad puts out the chairs in a circle and does the exercises with them. Then he helps clean up when they are done.

[dads+foot+care+december+2012.jpg] Foot Care day for Dad

We followed up with Dad’s foot care today. Another day of soaking and caring for them. This time he let me help him cut the nails which is something he didn’t want me to do but then he realized he was having difficulty reaching down that far. He said, "wow - I’m shrinking but my feet keep getting farther and farther away!". Gotta love his humor. As the winter closes in I need to be extra diligent in making sure he has a supply of food and toiletries. I have been pretty good at stock-piling dry goods for him. There may be days at a time when I’m just not able to get to him. Interestingly enough there are really only two ways to get to Dad’s from here and that’s assuming they have plowed our little private road we have to drive down to get out of our 162

c 2013 bruceandbarb.blogspot.com


3.11. December

BlogBook

place. Then I have to navigate two really steep hills and some days it just might not be possible. VERY thankful for the people in his community AND especially the amazing lady who is the manager there - Jill. Jill if you are reading this - I agree with what that lady said. Your mom would be very proud of all that you do for others. [Mom’s+urn+december+2012.jpg] Mom’s Urn on the same table with her favorite stuffed animals!

Speaking of Mom, she is never far away in our hearts, that’s for sure. Each morning and night Dad wraps both hands around Mom’s urn and tells her how much he loves her and misses her. He kisses her picture which is next to his bedside every night as well. Their love has always been an incredible story and continues to be even today.

c 2013 bruceandbarb.blogspot.com

163


BlogBook

164

3.11. December

c 2013 bruceandbarb.blogspot.com


Chapter 4

2013 4.1 4.1.1

January Changes (2013-01-09 22:12)

When I stepped into dads apartment my nose immediately told me something was not right. Dad was in his chair and I told him to just stay seated. I put my medical bag down, took of my jacket and scarf and looked at the stove. Nothing was on the stove. Oven was off. I peeked inside the microwave disguising my investigating with, "how do you like the microwave oven?" He said it does the job. The microwave was clean. Then my brain started thumbing through the thousands of smells stored in my memory banks. It was urine. My heart skipped a beat. I went to his room, saying, "going I to your room to say hi to mom" (the urn is in there with a photo Robb created for her memorial service card). I pulled back the blankets...clean. Checked the pillow...clean. Checked his dirty laundry...nothing soiled. Then I walked into the bathroom and it hit me as my shoe suddenly made that just-walked-in-somethingsticky noise. It was then that I realized I had been holding my breath. I took a breath in...the floor was covered in urine. I cleaned it up. I sat on the couch as I usually do and I asked the tough question. Dad, I don’t mean to get real personal but I need to ask you if you think you may have some problems when standing up to urinate. "Not that I know of," he responded. "I wonder if it would be best for you for now on to sit when you urinate instead of standing. There seems to be a fair amount of urine on the bathroom floor so I’m guessing our aim isn’t as good as it was when you were younger" He agreed. But I know that getting him to do that new habit will be difficult. I’ve added daily washing of the toilet and floor instead of weekly, to my growing list of duties. I always have dads feelings of self-worth in the forefront of my mind when talking with him and making decisions for him. I don’t ever want him to feel like I’m treating him like a child. I did my usual tasks...checked his feet. The skin issues on his arms and head. Took his blood pressure and blood sugars. All is well. I then met briefly with Sue. Sue is the nurse practitioner now a part of the team that is caring for dad. We talked for a bit. I re-iterated to her that no one comes to visit dad without going through me or my sister. The door buzzer does not work to his apartment so he has no way to buzz anyone in. Also the office staff knows if anyone comes for dads they offer them a seat in the lobby and call me. She applauded that safety feature and thought it was a great idea. I was relieved she thought that way. I didn’t need her to think, "here we go with an over-controlling caregiver". The whole team knows that I am a part of the team and if this program is to succeed for dad, it must have boundaries c 2013 bruceandbarb.blogspot.com

165


BlogBook

4.1. January

and expectations. They appreciate that attitude as usually they are left to do it themselves. They don’t always know what’s best for the individual. So far in the team is Dagmar (social worker), Sue and Joan, (nurses), and myself. We will be adding a new doctor, podiatrist, optometrist, dietitian, and dermatologist in the next two weeks. This team is a part of what is called Community Care. It’s a county program funded through Medicare. It costs me $160 a month but so far it’s worth it. Sue did an evaluation of dad. Her vitals matched mine (which is always nice to hear!). She gave dad a few oral tests. I’ll get her written evaluation on Tuesday. The test support what the rest of the team knows: ...dads short term memory capabilities are pretty much gone ...He’s happy and feels good and ...he feels that his memory is as good as anyone else his age ...although he missed mom, he’s not in a hurry to be with her We she asked who in his life he has that he can trust and turn to for problems, he immediately said, "Kurt and Robb and my daughter, Terri, if she’s available". After the nurse left I reviewed a new process we are trying. Dad needs to be increasing his water consumption. He drinks coffee but fails to remember that coffee actually dehydrated the body and that it doesn’t count as water even though it has water in it. So I made a two-column list. One says coffee the other says water. I have a smiley face stamper next to the list. Every time he has a cup of either, to put a smiley stamp in the correct column. This way I can track his drinking. As I have been trying for a few months now to get him to drink more water, I decided on a slight scare tactic. First don’t panic...because I think it worked. I told dad that if he doesn’t drink between 4 and six large cups of water a day that he may get to a point that he needs to be hospitalized and possibly a nursing facility until he can get hydrated. That seemed to do the trick. The goal of the team is to keep dad in his home and sometimes we need to remind him that is why we take these steps to get him to make positive steps for his own health. Now another issue arose today. This one caught me off guard and I told the nurse about it today. Everyday I monitor his towels, soaps, the shower and dirty towels to make sure he is showering. All signs showed that he is accept lately his skin has been excessively dry and body odor has started to be an issue in the last week or so. Dad said today that he wipes down with a wet cloth daily but has not showered for over a month. He said he just didn’t want to. We talked about if the shower makes him nervous or if there is anything about it that he doesn’t like. He said no. Tomorrow I will talk with him about it and see if I can get him to agree to shower twice a week if I am in the other room in case he needs help. We will also have the talk about now he feels if he needs help in the shower and how he feels about me doing that for him. Sometimes that brings a new level of trust and bonding between patient and caregiver. When they are father and son it can either be devastating to the patient or rewarding. We will soon find out which one applies to us. Good news came today that the administration of community care will approve compensation for me for caring for dad. Caring for dad takes about 25-30 hours a week. I will get compensated now. Basically either we would have someone come in and do what I’m doing but only three times a week...or they pay me an hourly wage for doing it. It’s a good deal! It will relieve a lot of financial burden. What’s next? We will keep looking at assisted living facilities and hopefully find one that is well suited for dad and that he likes. Then we will fill out the application and go from there. Dad is happy and healthy. He loves cards and recently received two from people he worked with in Florida at the forest service. He walked downstairs and showed a group of ladies playing puzzles. Want to make a guys day? Send him a card...a funny one...he loves them!

166

c 2013 bruceandbarb.blogspot.com


4.2. February

4.2 4.2.1

BlogBook

February Decisions Are Hard to Make (2013-02-04 21:46)

Dad celebrated his 72nd birthday this year. I took him to lunch at a local diner and he had his BLT. The waitress put a candle in his sandwich. He got a kick out of that, as you can tell with the smile that’s on his face. The place he lives had a Tea Party that same afternoon so Dad attended and had a great time visiting with neighbors and, of course, eating snack food. Here he is being the ladies-man! He sure does attract the ladies where he lives. Dad reports that he doesn’t really get involved in all the activities of the place but I know better. The ladies make sure I know exactly what Dad has been up to every day I walk through the front door. In fact, if no one is in the front lobby or community room to give me my ’dad update’, I feel like I’m suddenly missing out on something. [IMG_2004%255B1%255D.JPG] The wrist button.

[IMG_2005%255B1%255D.JPG] The receiver - we tested it and you can even hear Dad if he’s in the bathroom with the fan and water running, and the door closed! c 2013 bruceandbarb.blogspot.com

167


BlogBook

4.2. February

Today we got Dad set up with the "I’ve fallen and I can’t get up" button. It is an emergency call button he wears on his wrist. If he has an emergency he presses it and within 45 seconds an operator comes on over a large receiver on his counter and asks him if he is OK If he is not, or they hear no response, they will call 911 and me. I feel a lot safer knowing he has that but he’s not sure. He called me a few times already asking me questions about the button. I hope he wears it at night like he’s supposed to but something tells me this may be an issue. Napoleon Bonaparte once said that, "nothing is more difficult, and therefore more precious, than to be able to decide". Decisions are tough and when we are faced with having to make difficult ones we often avoid making them. In my case I just wish someone would make it for me. But then I’ll probably fight them on it and nothing will ever get resolved. When I am tempted to wait for people to make the decision for me I am reminded of an ancient Chinese proverb that says, "a wise man makes his own decisions, an ignorant man follows public opinion". When it comes time for us, as children, to make important decisions for our parents, it is especially tough and no one knows what it feels like until they are in that position. Proverbs reminds us that when making decisions, to "...stay away from fools". But there’s always the question, "Am I the fool?" There are two fears associated with decision-making. 1) Afraid we will make the wrong decision and 2) Afraid of backlash from people who may fail to support you It is becoming more and more apparent to me that Dad should not be living alone. Although he has the fellowship of neighbors, once the door to his apartment is closed, he is alone. He has very little concept of space and time. He can not remember what he was just doing a few moments ago and I’m afraid that anyone could knock on his door and take advantage of him. Again, the building is very secured and he keeps his door locked at all times but this is still a scenario that plays out in my head often. In fact, there are scenarios playing out in my head a lot of times that aren’t good. After the revelation recently that I need to be present when Dad is showering, it seems the decision is, indeed, being made for me. The assisted living facilities I have located are not taking new residents at this time. There is a waiting list and currently the wait list is about 6 months long. There is a two-bedroom unit opening up next month in Dad’s building and a new tenant would prefer a one-bedroom. Again, perhaps this decision is being made for me. The loss of independence is tough on the elderly. It’s tough on any of us and as a caregiver/son, it seems I am surrendering more and more of my independence to care for my father. It won’t be forever and I need to remember that. At tops it would mean 6-8 months until I can get him in to an assisted living facility. One last quote. Perhaps you have this in a frame or under a magnet on your refrigerator door. But there is much truth to this saying: The Will of God will never lead you, where His Grace cannot keep you. I am trusting that God is moving things around and positioning them to allow me to make the important decisions with clarity of mind and sight.

168

c 2013 bruceandbarb.blogspot.com


BlogBook v0.4, EX 2Îľ & GNU/Linux. http://www.blogbooker.com LAT

Edited: February 8, 2013


A 50 Year Journey  

The journey of Bruce and Barb through cancer and alzheimer's.

Read more
Read more
Similar to
Popular now
Just for you