CAREGIVER Magazine March 2020

In Sickness and In Health...

LOVING & LIVING THROUGH ILLNESS

By Lisa Sydnor

Mike and Martha Williams at the golf course, surf to CaregiverOklahoma.com where you'll hear "the rest of the story".

Mike and Martha Williams share their story as their paths join to create something new.

MIKE AND CINDY

Mike Williams married Cindy, his high school sweetheart, in 1969 at age 19. When you are 19, everything and anything seems possible. He was in the Air Force and he had a plan for their life. Life was good and their future was bright. The world was full of possibilities.

Like many plans, there were some unexpected twists. Cindy was active and athletic, not letting juvenile diabetes stop her from living life. Although they thought they knew about the disease, neither of them expected Cindy to suffer as she did. She had neuropathy in both feet; her right leg was amputated below the knee; she wore a brace on her left leg to assist in walking; had kidney failure; and, a quadruple bypass.

Mike was gone serving his country a great deal of the time so was not there to help Cindy as the disease progressed. He had planned to retire from the Air Force but Cindy’s deteriorating health dictated a change of plan. He left the Air Force after ten years and went to work at the Oklahoma Tax Commission. He retired from OTC after 25 years.

Mike never considered himself as a caregiver. He said, “My wife needed me. I was there for her. I was her husband; that is what a husband does; he takes care of his wife.” His caregiving journey started with daily shots; progressing to debridement (removal of damaged tissue or foreign objects from a wound) and dressing wounds for Cindy.

Nothing about these 35 years was easy. Mike is a planner; illness takes away the option to plan or schedule anything.

When care needs arise, it is immediate. Working fulltime, being the primary caregiver for Cindy and raising a child, his mental, emotional and physical health suffered. There were no respite options; no support groups; no home health agencies to help with daily care and no family nearby to help. Caregiving is lonely, with little time left for you.

Mike credits a chaplain for giving him insight and counseling that helped him cope with caregiving and the emotional roller coaster of daily life. It is critical to understand you are not the reason for the anger and resentment of the one suffering the loss of their health - and in many ways, their independence. The humiliation and embarrassment when care is personal and intimate can come out as anger at the one providing the care.

When medical professionals do not prepare the patient and family for the changes coming as a disease progresses, the feeling of being blind-sided can be overwhelming. If you do not know what to prepare for, hopelessness can overpower you.

Mike is an advocate for support, whether that is one person you can talk to or a group. He also believes a key to making it through all the ups and downs is to listen. Truly listen. Talk to each other and LISTEN. Cindy died in 2006, leaving a 37-year legacy of love for Mike, their daughter, Sarah, and grandson, Xander.

MARTHA AND FRED

Martha Williams married Fred Thompson in 1971 when she was 21 and still in college. They were married 34 years and had one daughter, Heather. Fred was a hard working, never-sick-a-day-in-his-life guy. Martha and Fred lived on acreage near Deer Creek in NW OKC, and he spent most of his time working outside. Martha received her Physical Education & English undergraduate degree from UCO (Central University back then); while earning her Master’s in Reading Education at Southern Nazarene University. Getting her Doctorate in Reading Education from OU, she worked and taught in OU’s graduate assistant programs. Fred was the one who handled all the business for the family, from paying the bills, handling home and car maintenance to mowing the acreage.

In 2007, Fred wasn’t feeling well and finally got a doctor’s appointment. The diagnosis dealt a massive blow – lung cancer. The prognosis was grim, one year or less. And so began twelve years of full time caregiving. In all, Martha cared for Fred, her mother and her sister. Looking back, it seems overwhelming to her. It is a good thing that we cannot see the future.

At first, Martha would prepare meals, provide snacks and set out medicine doses so Fred could stay home while she worked. The disease ravaged his body and soon, Martha took a leave of absence and stayed by his side virtually day and night. As the end neared, the doctors suggested Fred go home with hospice. Knowing nothing of how to care for Fred, or how hospice could help, they elected to stay in the hospital the last few days. He died eleven months after diagnosis. It was a hard fought battle.

Martha now faced life without her partner coming quickly to the realization that she had never been alone. She was faced with the daunting task of learning what bills to pay and when, handling all the financial needs, even teaching herself to use a riding lawn mower - mowing what seemed to be never ending acres of grass. As she mastered each of these challenges, her world expanded. Learning and assuming these skills gave her great satisfaction and a sense of purpose as she and Heather learned to live without Fred.

Sharing the caregiving responsibilities of their mother, Bettie Smith, Martha and her sister (Lee Ann Franke) spent time with their mom sharing memories and telling stories. The sisters took their mom shopping, to the doctor, to run errands, out to lunch, etc. Bettie remained in her own home until the end. As her health declined, a home health agency helped care for her and then hospice came in for the last two weeks. Bettie was 85 years old when she died of congestive heart failure in 2016.

Martha and her sister, Lee Ann, were always close, spending quality time together, supporting each other in good times and bad. In early 2019, Lee Ann was diagnosed with cancer with six months or less to live. Martha was Lee Ann’s sounding board: that call-in-the-middle-ofthe-night when you can’t sleep person. Martha was the one who would laugh, cry, scream, yell, rant, tease, and love Lee Ann until she could get it together to go on. She was the emotional anchor during those six months. Lee Ann died in October 2019. Martha continues that role as emotional anchor as she “mothers” her nieces and their children.

A dozen years of caregiving. Martha feels that much of this journey could have been easier if medical professionals had prepared her and her loved ones for the inevitable. When medical personnel withhold information or give false hope, it is cruel. Trust in the care your loved one receives is paramount. Knowing what to expect and how the diseases would affect the patient’s, and in turn her own, life could have alleviated much pain and fear.

Some things she was not told:

• Illness often affects personality changes

• Anger is to be expected (from care receiver and caregiver)

• Many doctors do not give you all the facts

• Fear of what is coming cripples the spirit

MIKE AND MARTHA

In 2010, Mike was enjoying the camaraderie of friends when Martha came in the establishment with her niece. As she walked by, Mike was entranced by her beautiful, big brown eyes. Martha and her niece were playing pool and, out of character for him, Mike asked if he might join them in a pool game. And, as they say, the rest is history!

Six months later, they were married. The one stipulation Mike had when they were looking for a home was that it was big enough for a pool table. Guess what is the predominate feature of the living room? Yipe, you guessed it – a pool table! Mike loves to play pool, is very competitive and is quite good at it. Martha plays for fun and says she has never been very good at it!

In 2012, Martha suffered a stroke, which affected her sight. She had macular degeneration and the stroke affected the portion of the brain controlling vision. She lost an additional quarter of her sight in both eyes. She spent about two years being angry and feeling sorry for herself. She felt helpless and hopeless. Having her three advanced degrees was not a comfort; as she could no longer read or drive, she soon retired from Redland College where she had taught for 15 years.

Then – a time transition – when your spirit tells you to get up and get moving. She found a wonderful organization, in New View Oklahoma. There she was introduced to virtually magical tools that have changed her life. Her counselor, Kathy, came to their home and together made that home a safe and functioning environment for Martha. Technology has opened up many doors. She can use her laptop, read anything with the assistance of several devices and cook again - with the addition of raised orange dots on stove controls.

Martha credits New View and staff for getting her involved and more self-sufficient. Her independence is important. Mike is there to help. When they are walking outside she holds his arm or hand and he gently guides her over uneven terrain, steps, curbs, potholes. When they play pool, yes they play pool often, Mike will point to a ball so she can see where to aim. He still beats her, but she is there for the fun and companionship. It is obvious that they hold each other in great, loving esteem.