LIVING WITH ALZHEIMERâ&#x20AC;&#x2122;S
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Although some days are better than others, my goal is to enjoy life and remember that ‘Life is good.’ — Don Reddington
PHOTO BY STEVE MITCHELL
As a “thanks” to folks who contributed to help cover production costs, Don’s wife, Ginger, donated this painting for a donor drawing. After the fundraising campaign was over, Don Nelson, left, and Don Reddington had some fun selecting the winner’s name from a bowl. PHOTO BY MARCY STAMPER
A very personal gift BY D O N N E L S O N , M E TH OW VA LLEY N E WS P U B L I S H E R
HE personal mantra that has helped sustain Don Reddington the past couple of years is both simple and profound: “Life is good.” If you k now a ny thing a bout Don — his intelligence, active lifestyle, infectious laugh a nd appreciation for the world around him — you know he means it.
It has been my privilege to work with, learn from and grow increasingly fond of Don as we partnered on what eventually came to be called “Living With Alzheimer’s: The Reddington Project.” It started in late 2014 with the germ of an idea: With the help of collaborators Dr. Raleigh Bowden, director of the Lookout Coalition at Room One in Twisp, and Methow Valley News reporter Laurelle Walsh, Don would over the course of a year produce a series of articles about the many challenges of living with
Alzheimer’s disease. Not long after being diagnosed with Alzheimer’s disease, Don beca me close friends with Jer r y Bristol, another Methow Valley resident living with a later stage of the disease. Don included Jerry’s experiences along with his own to share the storytelling in the series. Jerry died in December 2015. We pu bl i shed ei g ht a r t icle s i n 2 0 1 5 . T he y wer e u n f l i nchingly honest, personal, moving, inspirational — and upbeat. Don offered our readership, and many
others who read the articles, a brave, generous and compelling invitation to walk beside him on his journey. It was a selfless invitation into his life, and a passionate rallying cry to Alzheimer’s sufferers and their loved ones: Do not deny, do not retreat, do not give up on life. The reception to the series was overwhelmingly positive and grateful. Several of the articles were reproduced elsewhere, including in the Wenatchee World, and people started asking us if they could get all the articles in one package.
We began a conversation with Don and his wife, Ginger, about fınding a way to publish the series. It took a lot of thought and effort, but we came up with a plan that required some fundraising to help pay for production costs. The result is this magazine, “Living With Alzheimer’s: The Redding Project.” Funding for the project is coming from two sources: a grant from our sponsoring partner, the Lookout Coalition at Room One in Twisp, and donations through the YouCaring fundraising site that was set up by the Reddingtons. We set a goal of $9,500 to cover all the editorial, production and distribution costs of the magazine, and have exceeded that. The Reddingtons have decided that any funds that aren’ t needed for production will go back to Room One. All donors are recognized in the magazine, unless they chose to remain anonymous. In addition to the eight original columns and the article that introduced them, this magazine includes important information from the Alzheimer’s Foundation and Alzheimer’s Association, a previously unpublished article about Don’s close friend Jerry Bristol, and a ninth chapter written at Don’s request before the publication went to press.
Alzheimer’s disease statistics It is estimated that as many as 5.1 million Americans may have Alzheimer’s disease. The incidence of the disease is rising in line with the aging population. Although Alzheimer’s disease is not a normal part of aging, the risk of developing the illness rises with advanced age. Current research from the National Institute on Aging indicates that the prevalence of Alzheimer’s disease doubles every five years beyond age 65. As our population ages, the disease impacts a greater percentage of Americans. The number of people age 65 and older will more than double between 2010 and 2050 to
have reached a certain age, whether we sense it in ourselves or notice it happening with troubling regularity to friends or loved ones. Because as much as we would like to attribute faulty memory to the natural aging process, we also live in fear of
88.5 million or 20 percent of the population; likewise, those 85 and older will rise three-fold, to 19 million, according to the U.S. Census Bureau. It is estimated that about a half million Americans younger than age 65 have some form of dementia, including Alzheimer’s disease. (This is referred to as young onset or early onset.) It is estimated that one to four f a mily m e m b e rs ac t a s c a re givers for each individual with Alzheimer’s disease.
The national tab for caring for individuals with Alzheimer’s dis-
others close to us. At the root of that fear is dread that we will lose our sense of self, that we will fade away into a barely sentient shell. None of us knows what is really going on inside the mind of someone with advanced Alzheimer’s — are they somehow cogniza nt and unable to convey that in a way the rest of us can comprehend, or are they utterly adrift, bumping into the safe shoreli ne of memo ries like an unmoored boat and then being dragged back out into the disorienting storm? So imagine the strength and faith required to not only accept and plan a strategy after an Alzheimer’s diagnosis, but to also talk about it openly, honestly and with uncommon optimism. That’s what Don Reddington chose to do. We are honored to help him do that. Raleigh Bowden and Laurelle Walsh worked with Don to fıgure out and organize what he wanted to say, and Laurelle was the main writer. Laurelle and I also in-
As much as we would like to attribute faulty memory to the natural aging process, we also live in fear of the “A” word: Alzheimer’s, the most common form of dementia.
FACING THE FEAR Maybe it ’s a frustrating, momenta ry lapse of recall that you shrug of f a s a “senior mo ment.” It could be a prolonged inability to recall something that you have always been able to instantly access, like a name or date. It could be something as simple as staring at a word you have known how to spell since fı rst g rade , a nd wondering if you got it right. Or maybe you are writing or speaking and the exact word or phrase you want to employ, one you have routinely used all your life, is just out of reach. These types of events, in all candor, scare the hell out of us who
the “A” word: Alzheimer’s, the most common form of dementia. As fear begets denial or embarrassment, we may also live in ignorance of what is happening to ourselves or
ease is estimated at $100 billion annually. Alzheimer’s disease costs U.S. businesses more than $60 billion a year, stemming from lost productivity and absenteeism by primary caregivers, and insurance costs. The annual cost of caring for one individual with Alzheimer’s disease ranges from nearly $18,500 to more than $36,000, depending on the stage of the disease. For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/AboutUs/ email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
terviewed Don several times to complete Chapter 9. LASTING GIFT Don and Ginger were very forthcoming about their acceptance of the disease and their plan for dealing with it. Don believes that an “insider’s perspective” could help the rest of us understand Alzheimer’s impacts. In a letter to his family about the original series of articles, Don said that “the goal is to educate our community and address some concerns of patience and caregiving. We want to emphasize that a big barrier to quality of life is the denial of the patient and those around him/ her and a lack of open, healthy discussions.” Don has graciously ta ken us along on a personal, often painful journey that he knows has a certain end. With humility, humor and remarkable resiliency, Don has let us share his private confrontation with Alzheimer’s disease as it gradually erodes his cognitive essence. Don and Ginger have never denied the inevitable but have also never surrendered Don’s human dignity or joy of living to the disease’s progress. “Living With Alzheimer’s: The Reddington Project” is Don’s gift to us all, and we thank him for it. 5
LIVING WITH ALZHEIMER’S
Reddington Project The
About the cover LIVING WITH ALZHEIMER’S
Reddington Project The
A publication of the Methow Valley News P.O. Box 97, 502 S. Glover St., Twisp, WA 98856
A publication of the
Methow Valley News in partnership with
Donni Reddington shot this photo of her father bicycling in the Methow Valley.
509.997.7011 fax 509.997.3277 www.methowvalleynews.com email@example.com
CO NTRI B U TO R S
Don Nelson | PUBLISHER /EDITOR Darla Hussey | DESIGN Rebecca Walker| OFFICE MANAGER
Tyson Kellie | ADVERTISING Sheila Ward | ADVERTISING Dana Sphar | AD DESIGN/PRODUCTION
is publisher and editor of the Methow Valley News.
is a former Methow Valley News reporter and proofreader.
is a talented photographer as well as Don Reddington’s daughter.
is owner of Rocking Horse Bakery and an accomplished photographer.
A very personal gift
Living with Alzheimer’s, from the patient’s viewpoint
Facing the stages of Alzheimer’s disease
Caring for the person with Alzheimer’s
Issues with communication
Reflections on the project
Possible preventative strategies
Looking back, and ahead
Explaining Alzheimer’s to children
Sharing physical and social activities
Is it more than ‘just getting old’? Diagnosis and acceptance of Alzheimer’s
Brothers in arms
About ‘Living with Alzheimer’s: The Reddington Project’
Definition of Alzheimer’s disease Alzheimer’s disease is a progressive, degenerative disorder that attacks the brain’s nerve cells, or neurons, resulting in loss of memory, thinking and language skills, and behavioral changes. These neurons, which produce the brain chemical, or neurotransmitter, acetylcholine, break connections with other nerve cells and ultimately die. For example, short-term memory fails when Alzheimer’s disease first destroys nerve cells in the hippocampus, and language skills and judgment decline when neurons die
in the cerebral cortex. Two types of abnormal lesions clog the brains of individuals with Alzheimer’s disease: beta-amyloid plaques — sticky clumps of protein fragments and cellular material that form outside and around neurons; and neurofibrillary tangles — insoluble twisted fibers composed largely of the protein tau that build up inside nerve cells. Although these structures are hallmarks of the disease, scientists are unclear whether they cause it or a byproduct of it. Alzheimer’s disease is the most common
cause of dementia, or loss of intellectual function, among people aged 65 and older. Alzheimer’s disease is not a normal part of aging. Origin of the term Alzheimer’s disease dates back to 1906 when Dr. Alois Alzheimer, a German physician, presented a case history before a medical meeting of a 51-year-old woman who suffered from a rare brain disorder. A brain autopsy identified the plaques and tangles that today characterize Alzheimer’s disease. Courtesy of Alzheimer’s Foundation
Living with Alzheimer’s, from the patient’s viewpoint Editor’s note: This article, which introduced D on Red din gton’ s series of columns about living with Alzheimer’s disease, was published by the Methow Va lley News in January 2015. BY L A U R E L L E WA L S H
ON Reddington is a man with a mission: to help people learn about the effects of Alzheimer’s disease on the patient, their family and the community. In collaboration with co-author Raleigh Bowden, and with writing and editing assistance from the Methow Valley News, Reddington is embarking on a series of columns titled “Living with Alzheimer’s,” written from his — a person with Alzheimer’s — point of view that will appear monthly in the newspaper. “ I don’ t wa nt to give up life,” Reddington said. “I accept what’s going on. I tell people that I’m losing my memory.” Reddington is remarkably open about having the disease, but both he a nd Bowden said they have been struck by how many people a re in denia l a bout it . “ People delay going to the doctor because they are afraid to hear the truth,” sa id Bowden , herself a retired physician. “ The goal [of this series] is to help educate our community and address some concerns of patients and care giving,” Reddington wrote in an introduction to “Living with Alzheimer’s.” “We want to emphasize that a big barrier to quality of life is the denial of the patient and those around him or her, and a lack of open, healthy
discussions,” Reddington said. Not long after receiving t he d i a g no s i s o f A l z he i me r ’s disea se, Reddington beca me close friends with Jerry Bristol, a not her va lley resident livin g with a later stage of the d i se a se . Redd i n g ton wa nts to tell his a nd Bristol ’s stories in t he hop e o f helpi n g others cope with the disease. (Editor’s note: Jerry Bristol died in December 2015). The disease and t he people it a f fect s a re getting a lot of media attention these days due to the recent releases of two fılms: the documentary Glen Campbell: I ’ ll Be Me , which follows the music legend on a farewell tour after his Alzheimer’s diagnosis; and Still Alice, starring Julianne Moore, about a woman diagnosed with Alzheimer’s at age 50. Alzheimer’s disease (AD) is the most common form of dementia in the United States, affecting more than 5 million people nationwide, a c c or d i n g to t he A l z hei mer ’s A s sociat ion . T he num ber of A merica ns with A D a nd other dementias will grow in coming years as the baby boom generation ages. AD is the sixth-leading cause of death in the United States and the only cause of death among the top 10 that cannot be prevented, cured or even slowed.
determine Reddington’s mental function and then monitored him for several years, but eventually, Reddington told his doctor t h a t t h i n g s we r e n o t g e t t i n g b et ter for h i m , memor y-w i se . Dia mond refer red h im to a neurolog ist i n We n a t c h e e w h o did fur ther testing. Almost one year ago, Reddington received the diagnosis of Alzheimer’s disease. “Don, in his forthright way, asked if I would help him a nd Ginger deal with future issues related to Alzheimer’s,” Bowden sa id . In fact , — Don Reddington they had discussed Reddington’s problems with memory even before he was diagnosed group in Tacoma a nd directed with AD, Bowden recalls. Bowden is a retired doctor who management consulting services for the Spokane accounting fırm now volunteers her time with the LeMa ster a nd Da niels until he Lookout Coalition, a project of Room One that helps people facing retired in 2006. “He’s a smart guy, a numbers diffıcult health issues, including person,” said Ginger. “He’s always dementia. Bowden said she and Reddington b e en a ble to work t h i n g s out we r e f r i e n d s f ı r s t ; n ow b o t h mentally.” These days, although still quite Reddington and Bristol are Lookout t a l k a t ive , D o n h a s d i f f ı c u lt y Coalition clients of hers. Reddington immediately called fınding words when he speaks, and reading and writing are increasing h i s t h r e e d au g hter s a f ter h i s challenges for him, Ginger said. “He diagnosis, and within a few days he gets frustrated. I can see what his and Ginger had drafted a letter to problems are, but there’s nothing 150 friends and family members to you can do besides help him fınd a get the news out, he said. “ It w a s a m a z i n g how m a ny different way of doing things,” she people sa id how much t hey said. Reddington initially went to his admired us for bringing it out in the Winthrop physician, Ann Diamond, open,” Reddington said. He was also c o m p l a i n i n g o f i s s u e s w i t h impressed by how many people memory. “We’ve known for about have wanted to talk to him and fıve years that something was going share stories of family members in similar situations. on,” Ginger said. The idea for writing a series on Diamond did some testing to and a pet rabbit. He’s a gregarious guy who does not hesitate to enter into conversations with strangers. During his career as a CPA and fınancial consultant, Reddington headed up a la rge medica l
It’s important to know the path of the disease, what’s coming. There are things you can do to slow it down.
OUT IN THE OPEN Reddington, 71, and his wife, artist Ginger Reddington, live on a farm up Benson Creek with a passel of horses, dogs, chickens
Don Reddington is on a mission to help people learn about the effects of Alzheimer’s disease. PHOTO BY STEVE MITCHELL
I think the motivation to write this comes from seeing how he and his friend Jerry are treated, and wanting to help people deal with the disease in a way that’s more honest and direct. — Raleigh Bowden, Lookout Coalition
living with Alzheimer’s came from Reddington, Bowden said. “I think the motivation to write this comes from seeing how he and his friend Jerry are treated, and wanting to help people deal with the disease in a way that ’s more honest and direct,” Bowden said. TWO BROTHERS IN ARMS “Seeing what Jerry has gone t h r ou g h help s me s e e wh a t ’s coming,” said Reddington. Reddington and Bristol met about one year ago at Cascadia’s Christmas concert, Reddington recalls. When he found out that Bristol had AD, he made an extra effort to get to know him, and the two began going for walks and talking. Reddington and Bristol are both armed forces veterans; Reddington was in the infantry in Vietnam, and Bristol was in Army intelligence in England. Because of their shared military service history, Ginger has dubbed the pair “two brothers in 10
arms.” Bristol has lost most of his verbal function, including his ability to speak and be understood, and the ability to comprehend what people say. “Some days are better than others,” said his wife, Josephine Bristol, “and mornings are better, when he’s well rested.” Bristol also struggles to follow directions. “You can ask him to do one thing at a time, but no more,” Josephine said. “It’s very frustrating to him. He’s aware of his limitations and what’s happening to him.” Br i s tol wa s d i a g no s e d w it h AD about six years ago, when he noticed he had trouble speaking. “ He wa nted the eva luation ,” Josephine sa id . “ He thoug ht something was up.” He also has a family history of AD; his mother, maternal uncle a nd g r a nd mot her a l l h ad t he disease. His younger brother, Peter, though symptom-free, is currently p a r t icip a t i n g i n a t h r e e -ye a r nationwide study of Alzheimer’s treatments. Josephine, Bristol ’s prima ry caregiver, says that because taking care of him is a 24-hour-a-day job, fınding time for herself is one of her biggest challenges. The other is patience — not getting upset when her husband is unable to do something, she said. She attends a caregiver support group at Room One, and sees a counselor for one-on-one talks. The Bristols together attend Aero Methow’s SAIL (Stay Active and Independent for Life) exercise program, as well as yoga classes. “Exercise is excellent for both of us,” Josephine said. ADAPTING TO CHALLENGES “ T he sp ou s e’s r ole i s r e a l ly important,” said Reddington. “You have to change your life … and work together to make a plan for the future.” It’s also important for both spouse and patient to have an outlet for their frustrations, he added. “There is tremendous pressure on the caregiver,” said Bowden. “Caregiving for the later stages of dementia is some of the hardest to do.” “I try to let him be the man that
he is, but I do get angry — at the disease, not at him,” Ginger said. “This thing is taking my husband away day by day.” Still, the Reddingtons manage to keep a sense of humor a nd positivity about their challenges. “ We laugh a lot about all this,” Ginger said. “When he gets hung up on a word or phrase I’ll say, ‘Give me a hint,’ and we fıgure out what he’s trying to say.” “It’s important to know the path of the disease, what’s coming,” said Reddington. “There are things you can do to slow it down.” Reddington says an active social life is important. “Don’ t stay at
home. If you have problems talking to people, go places with your wife, who can help with that,” he said. He also emphasizes the importa nce of exercise a nd staying physically active. He enjoys mountain biking, riding horses, skiing and hiking. He works around the farm; after Benson Creek raged across their property in a f lood last summer, he spent days on the tractor moving rocks and repairing damage to the land, Ginger said. “I’d have to tell him to stop for lunch and come in when it got dark, but I wouldn’ t want to keep him from doing it. He told me, ‘It makes me happy,’” Ginger recalls.
Don Reddington shares a photo of himself with Jerry Bristol, his friend and inspiration for dealing with Alzheimer’s disease. PHOTO BY STEVE MITCHELL
AD is the sixth-leading cause of death in the United States and the only cause of death among the top 10 that cannot be prevented, cured or even slowed. on a professional level for years, it is becoming increasingly diffıcult due to the disease. “It takes him a long time to write,” Ginger said. She sees her husband disappear into his offıce and spend all day at the computer working on the upcoming series, she said. Ginger reviews the stories and helps him with grammar and spelling. “He’s always been detail-oriented, fo cu s e d , me t ho d ic a l ,” Gi n ger said. “When he has a project it ’s important for him to fınish it.”
Don Reddington and his daughter Donni on a skiing outing in the Methow Valley. PHOTO BY DONNI REDDINGTON
“ I l i s ten to mu sic wh i le I ’m driving the tractor; otherwise I dwell on the disease if I have too much quiet time,” Reddington said.
Ginger is pleased that her husband is launching the “Living with Alzheimer’s” project, and sees it as “a lovely gift to the people of
the valley. It’s his story. He wants to let people know what’s going on and how he feels about it.” Although Reddington has written
Warning signs of Alzheimer’s disease Alth o ugh eve r y c a se of Alzheimer’s disease is different, experts have identified common warning signs of the brain disease. Remember, Alzheimer’s disease is not a normal part of aging, and it is important to look for signs that might indicate Alzheimer’s disease versus basic forgetfulness or other conditions. With Alzheimer’s disease, these symptoms gradually increase and become more persistent. If someone is exhibiting these
symptoms, the person should check out his or her concerns with a healthcare professional. Awareness of these warning signs is not a substitute for a consultation with a primary care provider or other qualified healthcare professional. Typical warning signs include: • Memory loss, especially of recent events, names, placement of objects, and other new information
• Confusion about time and place • Struggling to complete familiar actions, such as brushing teeth or getting dressed • Trouble finding the appropriate words, completing sentences, and following directions and conversations • Poor judgment when making decisions • Changes in mood and personality, such as increased suspicion, rapid and persistent mood swings, withdrawal, and
disinterest in usual activities • Difficulty with complex mental assignments, such as balancing a checkbook or other tasks involving numbers For m ore inform ation , con nect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/ AboutUs/email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
Chapter 1: Issues with communication
LZHEIMER’S disease (AD) is the most common form of dementia affecting older people. Much has been written about Alzheimer’s, and much of it is available on the Internet. This series is not intended to provide clinical expertise on the disease, but rather a personal perspective from the patient’s point of view. We — Don Reddington and Jerry Bristol — both have AD, and we have chosen to write a series of articles about living with the disease. We feel that an insider’s perspective would be an effective way of communicating on behalf of other people who are living with Alzheimer’s. We want to share our experiences and how we would like others to treat us. This is our personal story to help others who are struggling to fınd their voice. Com mu n ic at i n g w it h a per son with AD requires patience, respect and understanding. We are not being diffıcult deliberately! We want to develop communication
Donni Reddington, left, with her father Don. PHOTO BY DONNI REDDINGTON
Communicating with a person with AD requires patience, respect and understanding. We are not being difficult deliberately! We want to develop communication techniques that will be more effective for those of us with Alzheimer’s, and for those around us. Family friend Don Linnertz, left, and Don Reddington in the Reddingtons’ potting shed. PHOTO BY SCOTT WALLACE
Don and Ginger Reddington with Steve the rooster at the Reddingtons’ home outside of Twisp. PHOTO BY STEVE MITCHELL
If you ask questions, go slow and wait to see if we acknowledge. If we don’t respond, it is because we don’t understand the question. We lose so much of the words in our life that it is difficult to respond. 14
techniques that will be more effective for those of us with Alzheimer’s, and for those around us. Memory impairment is the hallmark of Alzheimer’s disease, but language diffıculties are also present at the earliest stages of the disease and become more noticeable as the disease progresses. At fırst the patient is not able to fınd the right word, later they cannot identify an object or recognize people. The person becomes unable to follow any coherent train of thought, and eventually is unable to understand what he hears. In the early stage of AD, a person may forget or substitute words when
they cannot fınd the one they want. Sometimes, we notice that while people are talking to us, he or she will just walk away. In some cases, they might pretend that they are listening but they are not. STAYING CONNECTED As people with Alzheimer’s, we want to be listened to. We want to stay connected with family and friends but it is diffıcult for both. For us, it is an important part of our life! In the later stages of the disease, it may be very hard to understand anything that we say. Do not be discouraged! You can still talk with us.
Family friend Mary Pat Bauman with Don Reddington on a winter ride. PHOTO BY GINGER REDDINGTON
Sometimes, if you ask “yes or no” questions to the person with Alzheimer’s, we can nod or do a head shake to answer you. Sometimes people will avoid us. Usually, it is because the person does not know what to say to us. Don’ t give up. Keep trying. When we are fırst diagnosed, fear or shame may prevent us and others from telling family and friends. One thing that can really help all of us is to send out a letter or email to loved ones that makes them aware of the situation. They will really appreciate it because they want to know of such changes in our lives! Loved ones appreciate that we have shared this news with them. It makes the situation easier for all to talk about. Being open and honest makes everyone feel more comfortable with the situation. Using the computer in the early stages can help keep our communication skills sharp. In fact, some people , l i ke Don , m i g ht even feel improvement in their memory.
PATIENCE, PLEASE Having Alzheimer’s causes us to appear angry sometimes. Typically, it is because of the frustration that we get because we are unable to communicate or be understood. It can be a very diffıcult
moment! We have a right to be angry. It helps when people hang in there with us in an understanding manner. We suggest that you talk slowly and connect with us on a “feeling level.” Take the time to listen and do not interrupt. Those of
us with AD can often speak more clearly when we are relaxed, and in a quiet place. We need patience, respect and understanding. If needed, make sure the person has their glasses, or hearing aid. Also, it is impor ta nt to ma ke a nd ma inta in eye contact. We are not trying to be diffıcult. If you ask questions, go slow and wait to see if we acknowledge. If we don’ t respond, it is because we don’t understand the question. We lose so much of the words in our life that it is diffıcult to respond. We’ve noticed that people seem almost afraid to touch those of us with Alzheimer’s disease. It’s not contagious! In fact Jerry, who is living with a later stage of the disease, really likes and responds to hugs and human contact. Finally, it is hard for us to be around young folks. We love our grandchildren but sometimes it is hard to understand them due to fast talking and talking over each other. With help, it can be made worthwhile for both parties. When communicating with us and others with AD, relax, lean forward, and smile when talking to us. If we are unable to respond to you, we are still able to smile, gesture, or give a caring touch. Remember, communication requires patience, respect, and understanding. Living with AD is not easy!
Memory impairment is the hallmark of Alzheimer’s disease, but language difficulties are also present at the earliest stages of the disease and become more noticeable as the disease progresses. At first the patient is not able to find the right word, later they cannot identify an object or recognize people. The person becomes unable to follow any coherent train of thought, and eventually is unable to understand what he hears. 15
Chapter 2: Possible preventative strategies
IFESTYLE choices related to diet, vitamin supplements and exercise have reduced the risk of many diseases. Could they also slow down the effects of Alzheimer’s disease? Research studies to identify factors that affect the risk of Alzheimer’s (AD) are being developed. What can be done today? In our lifetimes, Jerry Bristol and I have always gotten a lot of satisfaction and happiness from helping others. We will continue this year to help others with AD by writing about the disease from our perspectives. We know there are no medically proven ways to prevent or treat Alzheimer’s, but we believe that lifestyle and home remedies have affected our AD by slowing down the process. We also believe that they help us have a positive outlook for our remaining life. Lifestyle and home remedies that we have tried include the following:
I accept that we have a disease that there is no cure for. However, hopefully we can slow it down! A SENSE OF HUMOR Jerry and I feel that it is better to enjoy life rather than be mad about our illness and changes in lifestyle. Even though getting the disease is unfair, we try to ignore the negative things people say about it. Our advice is not to argue with people as it is too stressful. Reducing stress, simplifying life, and trying not to overextend on commitments all help us stay positive. Jerry and I will maintain our sense of humor and activities so we will enjoy our remaining life on earth! EXERCISING Jerry and I have always been physically active and we really believe that this makes a big differ-
ing in low country, snowshoeing, yoga, and exercise classes twice a week at the Grange (thanks, SAIL — Stay Active and Independent for Life). I do f loor exercises four to fıve times a week (thanks, Pete Dick inson) ; cross country skiing three to four times a week (thanks, Don Portman); downhill skiing at Loup Loup Ski Bowl when possible with my “adopted dad” (thanks, Bob Ulrich); mountain biking four to fıve times a week (thanks, Joe and Julie); grouse and chukar hunting with my hunting dogs; and riding my horse up the high trails and backcountry (thanks, Ginger).
Jerry and I have always been physically active and we really believe that this makes a big difference in our lives.
STAYING ACTIVE Jerry and I both spend a lot of t ime ga rdening. Gardening gives us work to do that helps keep our brains functioning. Jerry and I both volunteered to help at the recycling center until it was no longer possible. I take doing the dishes seriously (thanks, Ginger)! I fınd for myself that I have to think ahead about what I am going to do next or I do the wrong things. In the beginning of AD, I got to lay something down, and then I would not remember where it was. My new strategy is to
Jerry and I accept that we have a disease that there is no cure for. However, hopefully we can slow it down!
POSITIVE ATTITUDE W hen Jerry a nd I found out that we have AD, we experienced a whole change of life! Jerry and I are going to go from being an adult to living like a child. We don’t think about this or other bad things. Jerry and I just want to get on with our lives and have a positive outlook. Both of us are grateful for the life that we had and for the life that we have lived so far. Jerry and
ence in our lives. Some data supports that exercise may be the one thing that can really slow AD down. Jerry gets his exercise from hik-
try to put things away right away. It has helped greatly! DIET AND DRUGS Jer r y a nd I eat ver y few fatty foods but enjoy eating lots of fruits and vegetables. We also take omega-3 fısh oil and a variety of supplements each day. Jerry also takes coconut oil. We watch our diets and try to avoid sugar. However, Jerry and I have a cookie desire! One cookie a day (thanks, Josephine) is just what Jerry and I need! Jerry and I both tried a variety of AD medications suggested by our doctors, but we stopped taking these medications due to adverse side effects. However, I still take one medication, an antidepressant, so that I have a happy day. Jerry and I would prefer quality of life! A s Jer r y once sa id : “ I would prefer to remain true to myself as opposed to taking a medication that altered the true me.” Like Jerry, I want to enjoy my remaining life!
Don Reddington stresses a positive attitude in dealing with Alzheimer’s disease. PHOTO BY STEVE MITCHELL
INTELLECTUAL STIMULATION Jerry and I like to read but it has become diffıcult for both of us. Loss of memory is taking it away. We both started seeing speech therapists. We both got activities and written exercises to work on. Jerry did puzzles and played games, as well as reading. He can no longer do any of these, but it hasn’t stopped him. Jerry still participates in a book club. Although speaking is diffıcult for Jerry, we have discovered that we can talk together. What is great is that I get responses from Jerry to our discussions. And when I get home to write these chapters on the computer, I have noticed that it really helps me with my memory loss. Missing words come back! According to Dr. Raleigh, it helps preserve cognitive function and prevents cognitive decline. Corbin Massey, left, hikes with Ginger Reddington and Don Reddingon in the Rendezvous area of the Methow Valley. PHOTO BY DONNI REDDINGTON
MUSIC Jerry and I both love music. Jerry will sit down
Staying active is a key element of Don Reddington’s strategy for dealing with Alzheimer’s disease. PHOTO BY STEVE MITCHELL
and listen to it. He also enjoys musical shows, movies, and live musical theater. He is able to comprehend the emotion of music better than he can comprehend the content of a verbal exchange or dialogue. I love music from the 1950s and ’60s! My new iPod and headphones (thanks, Donni and Rick) have changed my world. Music helps me so much to put negative thoughts aside. When I go out and work on my tractor or around the farm, listening to ’50s and ’60s hits is something that has helped me focus on the positive things. SOCIAL ENGAGEMENT For Jerry and me it can be hard to answer questions when someone asks. We are blessed that our wives will help inter-
face conversations with other people. We don’t want Alzheimer’s to be the only topic, however. We have other important things going on in our lives! We will talk to people who make eye contact and take time to talk to us; otherwise, it is a waste of time for both parties. Jerry and I enjoy talking to people one on one; for us, smaller social gatherings and groups are easier. It is helpful to get introductions from known friends and acquaintances to assist with names and context. It might be awkward initially, but we live in the small community of the Methow Valley where the majority of people are kind, understanding, and compassionate. Living with AD is not easy! Our thoughts are with you.
We are blessed that our wives will help interface conversations with other people. We don’t want Alzheimer’s to be the only topic, however. We have other important things going on in our lives!
Treatment of Alzheimer’s disease Currently, there is no cure for Alzheimer’s disease. Researchers are contin ually testing the effectiveness of various drug therapies that will control symptoms; slow, reduce and/ or reverse mental and behavioral symptoms; and prevent or halt the disease. The historic “National Plan to Address Alzheimer’s Disease,” released by the U.S. Department of Health and Human Services in May 2012 and updated annually, calls for preventing and effectively treating Alzheimer’s disease by 2025. The U.S. Food and Drug Administration (FDA) has approved several medications for the treatment of Alzheimer’s disease. Currently available are: • Namenda XR (memantine hydrochloride) extendedrelease capsules are approved for the treatment of moderate to severe Alzheimer’s disease. Namenda XR is available by prescription only. Namenda XR is a once-a-day medication that can be used alone or in combination with an acetylcholinesterase inhibitor (AChEI). Because Namenda XR works differently than other Alzheimer’s treatments, combination therapy with Namenda XR and an AChEI may
help improve your loved one’s overall function and cognition. Adding Namenda XR to an AChEI may also help slow down the worsening of your loved one’s symptoms for a while. Generally, patients with moderate Alzheimer’s disease experience the fastest rate of decline. If your loved one has been diagnosed with moderate to severe Alzheimer’s disease, ask the doctor about the benefits of adding Namenda XR to your loved one’s treatment for Alzheimer’s. • Namzaric is approved for the treatment of moderate to severe Alzheimer’s disease in patients who are currently taking and can continue to take certain doses of both Namenda (memantine HCI) or Namenda XR extended release and donepezil HCI, the active ingredient in Aricept. Namzaric is available by prescription only. If your loved one is already taking Namenda XR extended release and Aricept (donepezil HCl) 10 mg, ask their doctor if once-a-day Namzaric may be the right treatment for them. • Namenda is indicated for the treatment of moderate to severe dementia of the Alzheimer’s type. Namenda is available
by prescription only. It is recommended to be and can be taken with or without food, and is available in tablet and liquid form Therapy begins at a low dose (5 mg per day) and is gradually increased until the recommended target dose (10 mg, twice daily) is reached. Once the recommended target dose has been reached, people taking Namenda can continue with that daily regimen unless instructed otherwise by their doctors. • Donepezil dydrochloride (Aricept) 5mg and 10 mg are indicated for mild to moderate Alzheimer’s disease, and Aricept 10 mg and 23 mg are indicated for moderate to severe Alzheimer’s disease. • Rivastigmine (Exelon) is approved in pill and patch form for mild to moderate Alzheimer’s disease, and in a higher dosage Exelon Patch for severe Alzheimer’s disease. • Galantamine hydrobromide (Razadyne) is approved for mild to moderate Alzheimer’s disease.
Some of these medications can be used alone or in combination,
and may help slow progression of symptoms and improve quality of life. These medications come in various dosages; dispensing requirements (i.e., once or twice a day); formulations (i.e., extended release); and forms, including tablet, capsule, liquid and patch. Before taking medications, it is advisable to speak with a health care provider regarding past and present medical conditions; allergies; and possible side effects. Currently, research supports behavioral management interventions for individuals with dementia, as well as education, counseling and other support services for caregivers. The National Institute on Aging, in concert with the FDA, tracks private- and government-sponsored clinical trials; contact the Alzheimer’s Disease Education and Referral Center at www.alzheimers.org/ trials or call (800) 438-4380. Alzheimer’s Federation of America (AFA) also lists clinical trials at www.alzfdn.org/ClinicalTrials/ findatrial.html. For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/AboutUs/ email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
Don Reddington with grandchildren Trinity and Jadon Scarpella at the summit of Cutthroat Pass. PHOTO BY GINGER REDDINGTON
Chapter 3: Explaining Alzheimer’s to children
F you have a parent, a family member, or a close friend who has Alzheimer’s disease (AD), it affects you as much as it affects the patient. It also has an impact on children. Explaining AD in a way that children can understand is diffıcult. Kids notice a lot more than adults give them credit for. They may not understand exactly the details or what is wrong, but kids deserve to be involved and informed. Both my friend Jerry Bristol and I have family members and close friends who have children. I am a grandparent who is blessed with seven wonderful grandchildren. So how do we explain AD in ways that children will understand? First of all, Alzheimer’s is a big word that might not mean much to children. It didn’t to me until I began to experience
memory problems and started speaking with doctors. The term “disease” sounds like something contagious that would scare a child. So what is a simple solution? Jerry and I simply say that we have a memory loss problem. I can explain that, as we get older, lots of us old folks have a memory problem. As I age and can’t remember as much, it doesn’t mean that I can’t do anything anymore. Teenagers understand more details than children. I might take one of my teenage grandchildren outdoors to take a hike and enjoy the beauty of the country. On the hike, I might explain to her that because of Alzheimer’s, I
I would encourage you to interact with your grandchildren so they see Papa and Grandma as they slowly change. You want your grandchildren to have good memories of your life together!
Don and Ginger Reddington with a big contingent of family members at Grand Targhee Ski Resort in Wyoming. PHOTO BY DONNI REDDINGTON
So how do we explain AD in ways that children will understand? First of all, Alzheimer’s is a big word that might not mean much to children. It didn’t to me until I began to experience memory problems and started speaking with doctors. The term “disease” sounds like something contagious that would scare a child. 22
Don and Ginger Reddington with their grandson, Tieg Wachter: Explaining Alzheimer’s to children is important to help them understand the disease. PHOTO BY DONNI REDDINGTON
may wander away from the house some day and get lost. Although it is a possible problem that we might have, I’ll explain, she shouldn’t be afraid because she will fınd the way back. Teenagers like to ask questions, and the ones that I get from them will determine how much information I will be able to share. In any event, it is quality time that a grandfather gets to spend with his grandchildren. BE OPEN WITH CHILDREN If a grandparent forgets a grandchild’s name or calls them by the wrong na me, it may cause the child to feel that “Papa or Grandma doesn’t love me any more.” Tell
your grandchildren that you love them, “but I might forget your name or call you by the wrong name at some point in time.” Being open with your grandchildren seems to gain their understanding and appreciation for their grandparents. If any of the children ask whether they can “catch” the disease by being near you, explain that “It is only my problem. It has nothing to do with you.” Being active with your grandchildren helps them to be less concerned or scared about their grandparents. I would encourage you to interact with your grandchildren so they see Papa and Grandma as they slowly change. You want your grandchildren to have good memories of your life together!
As the process of AD continues, your grandchildren may become concerned as their grandparent becomes more physically impaired or is bedridden. At that point, the child will decide if he wants to see his grandparent or not. If the child decides that he wants to visit his grandparent, he might bring their favorite food: cookies, ice cream, chocolates, candy, or fruits. For some grandparents, the gifts might not be possible but, in any event, they will love to see you. I was concerned about an upcoming visit to our grandchildren in Colorado. I assumed our two daughters, Shawna and Becky, had told our grandchildren that Papa Don had a serious illness. I did not
gan writing a short but helpful article for my grandkids. At the same time, I began this new chapter of “Living with Alzheimer’s.” I felt that other Papas and Grandmas with AD could benefıt as well from reading “Explaining Alzheimer’s to children.”
Don and Ginger Reddington with their daughter Becky Scarpelli’s family. PHOTO BY DONNI REDDINGTON
know what had been told and I wasn’t going to ask. I felt that I was responsible for giving our grandchildren an explanation of the changes in Papa Don’s life. Before I left on the trip, I decided to approach Room One, the social services agency in Twisp. At the
front desk, I approached Maureen and asked if she had any articles on explaining Alzheimer’s to children. The answer was “no,” but she felt that it was a good idea. She took the time to fınd several on the Internet. I was so thankful to Maureen. Once we got on the airplane, I be-
MY EXPLANATION My explanation of my change in life to our grandchildren follows: “Papa Don is having a change of life that I want to share with you. I am having a problem with loss of memory. Thus, I want you to understand how this loss will change our relationship. We have shared many wonderful times together. As I age, my memory has aged as well. We will have a change in our relationship. For example, I may forget your name, or have problems talking to you; it might be that I don’t understand your questions or comments. I will still love you as much as the fırst day that I laid eyes on you! Therefore, I will need your help with remembering and thinking. I love you and want to contin-
ue to see you. As days and years go by, I might get sicker over time. I promise that I or Grandma Ginger will explain those symptoms and how to handle them with Papa Don. With love to you! God bless, Papa Don.” “P. S. : Please remember me in your prayers to God Our Father and Ann, my guardian angel, who are watching over me.” Prior to meeting with the grandchildren, I had the parents of the two families review my presentation. One family has two boys, ages 5 and 9, and the other family has a girl, 14, and four boys, ages 2 to 12. The children were great! There were questions but they seemed to have received enough information. The best result was grandchildren that were very caring to Papa Don and tried to help in any way possible. It was a great experience for all of us. They will always be in my memories! I may forget their names but I will always remember my grandchildren: Trinity, Jadon, Gabriel, Silas and Marcus Scarpella; and Tieg and Skogan Wachter.
About dementia Experienced clinicians can accurately diagnose dementia 90 percent of the time. Accurate diagnosis is critical since there are dozens of other causes of memory problems. Some memory problems can be readily treated, such as those caused by vitamin deficiencies or thyroid problems. Other memory problems might result from causes that are not currently reversible, such as Alzheimer’s disease. Obtaining a proper diagnosis involves consulting with a health care professional expert in dementia, communicating symptoms and undergoing extensive testing. Diagnostic tools can include a complete medical history; blood, urine or other medical tests; neuropsychological tests that measure memory, problem solving, attention, and language; and brain
scans. Individuals with clinically diagnosed dementia have clear cognitive loss in two or more intellectual domains, such as amnesia (loss of memory) and aphasia (inability to communicate effectively), but almost all individuals with Alzheimer’s disease demonstrate short-term memory impairment. Other types of dementia may begin with a slow loss of memory function; however, a careful, clinical evaluation will usually provide information that suggests dementia other than Alzheimer’s disease. For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/ AboutUs/email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
Don Reddington with his daughter’s family, the Scarpellas, hiking on the Blue Lake Trail in the North Cascades Range. PHOTO BY GINGER REDDINGTON
Chapter 4: Sharing physical and social activities
N Chapter 2, “Possible preventative strategies,” Jerry Bristol and I indicated the importance of physical and social activities. With the help of Dr. Raleigh Bowden, we learned about putting together activities that we hope will help slow down the progression of Alzheimer’s disease (AD). Activities help maintain general well being at the early stages of Alzheimer’s. They also prevent boredom and agitation in people with AD. One of the best activities for me has been the opportunity to work with Dr. Raleigh at the Lookout Coalition and Laurelle Walsh at the Methow Valley News on the creation of this series of articles, “Living with Alzheimer’s.” Our primary goal of the writings was to help people in the Methow Valley learn about the effects of Alzheimer’s disease on the patient and the family. From the responses we have received, we are going in the right direction. Jerry and I feel that we are providing meaningful awareness to the Methow Valley community and beyond. For me, I have received a great deal of satisfaction knowing that we are helping communities, patients and their families. Helping others has always been an important part of my life. I didn’t want AD to stop that part of my life!
Jerry and I have learned that we are able to perform a variety of activities that help us to be active. For example, we exercise and keep busy in other ways such as socializing, helping in the kitchen, working in and around the house, gardening, yoga, and attending special events. The main goal is to fulfıll the need to be active! EXERCISE HELPS One advantage of exercise is to avoid restlessness and agitation, which are both symptoms of AD. Walking or hiking in a safe area helps with sleep at night. Jerry enjoys dancing and fınds a lot of fun in this activity. If asked, Jerry and I can help with household tasks that are appropriate. We may not qualify for cooking, as pointed out by my wife, Ginger, but we can peel certain vegetables and set the table. Jerry and I love working in the garden. We are not too involved with arts and crafts but other persons with AD may enjoy them. I love animals! Ginger and I have fıve dogs, four cats, two horses, two mules, one rabbit and lots of chickens. I enjoy spending time with them. Animals are sources of social activity and friendship — recommended therapies for people with Alzheimer’s.
Being out of doors, working or enjoying sport activities make us feel better.
Jerry Bristol, center, with his sister Bonnie Leavenworth and brother Peter Bristol during a visit in 2014. PHOTO BY KATIE BRISTOL
Our expectancy is that all activities should be careful and comfortable to the personality of the person. A shy person should not be required to participate in any group activities. However, an outgoing person may be happy with a group. Jerry and I enjoy music but what we listen to is different. I enjoy listening to music from the ’50s and ’60s on my iPod. Jerry loves classical music. For both of us, it brings back memories of the past and gives us happiness in the present. For those who like to read, they may be able to continue browsing though magazines and books. Thanks to the help of Chris Holm, I was able to improve my reading, but it is diffıcult to remember the contents. Jerry is not able to read at this stage of the disease. However, both of us are still able to enjoy the entertainment of television. For oth-
ers with AD, reading can be frustrating because they no longer are able to understand the contents of the story. Finally, Jerry and I enjoy some simple games but a person with advanced AD will not even know the games. However, they should not be treated as a child. As indicated by Dr. Raleigh, it is important to keep mental level in mind when planning recreational activities. Having chores and responsibilities each day in our familiar environment is essential to our wellbeing and self worth. Being out of doors, working or enjoying sport activities make us feel better. At the end of the day, we sleep so good at night. As the expression goes, “Life is good ” — if you go in a positive direction! Our thoughts are with you.
Don Reddington works in the yard at his Benson Creek home. PHOTO BY STEVE MITCHELL
Chapter 5: Is it more than ‘just getting old’? Diagnosis and acceptance of Alzheimer’s
ORGETFULNESS can be a normal part of aging. As people get older, changes occur in all parts of the body, including the brain. As a result, you may notice that it takes longer to learn new things; you don’ t remember information as well as you once did; or you can’t remember where you put things, like your glasses or your keys. For most people, these are signs of mild forgetfulness due to aging, not a serious memory problem. For several years before my diagnosis of Alzheimer’s disease, I knew there was something going on. I was having problems with my memory, but friends would say to me, “Don, you don’t have Alzheimer’s, you are just getting old.” I was still troubled, so I went to our family doctor, Dr. Ann Diamond, and told her about the mem-
ory problems I was having. She gave me an initial test that showed I had some memory loss, but nothing defınitive. She told me we should keep an eye on it. Over the next four years there were ma ny indicators that my problems were getting worse. My wife, Ginger, would talk about going to certain places or visiting certain people and I wouldn’t remember who they were. I started writing things down — where I was going to go, what I was going to do — which helped, as long as I remembered to check my notes. When we were sitting around the dinner table with friends or at a cocktail party, it seemed that people would talk too fast and I couldn’t keep up with the conversation. Ginger and I have always been very active — skiing, horseback
While graying hair is a typical sign of aging, memory loss that disrupts daily life is not. PHOTO BY STEVE MITCHELL
For several years before my diagnosis of Alzheimer’s disease, I knew there was something going on. I was having problems with my memory, but friends would say to me, “Don, you don’t have Alzheimer’s, you are just getting old.”
riding, mountain biking — but at the start of one ski season, I began to notice that I was having problems that I wouldn’t normally have. I noticed I wasn’ t quite as confıdent on skis. Once I got going it all came back, but I could feel that I had lost some ability that I had had before. I also noticed some diffıculties riding my bike that I didn’t have before.
10 early signs and symptoms of Alzheimer’s Memory loss that disrupts daily life may be a symptom of Alzheimer’s or another dementia. Alzheimer’s is a brain disease that causes a slow decline in memory, thinking and reasoning skills. There are 10 warning signs and symptoms. Every individual may experience one or more of these signs in a different degree. If you notice any of them, please see a doctor.
1. MEMORY LOSS THAT DISRUPTS DAILY LIFE
One of the most common signs of Alzheimer’s is memory loss, especially forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; increasingly needing to rely on memory aids (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own. What’s a typical age-related change? Sometimes forgetting names or appointments, but remembering them later.
2. CHALLENGES IN PLANNING OR SOLVING PROBLEMS
Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before. What’s a typical age-related change? Making occasional errors when balancing a checkbook.
3. DIFFICULTY COMPLETING FAMILIAR TASKS AT HOME, AT WORK OR AT LEISURE
People with Alzheimer’s often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game. Wh at’s a typic al age - re l ate d c h a nge?
Occasionally needing help to use the settings on a microwave or to record a television show.
4. CONFUSION WITH TIME OR PLACE
Misplacing things from time to time and retracing steps to find them.
8. DECREASED OR POOR JUDGMENT
People with Alzheimer’s can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. What’s a typical age-related change? Getting confused about the day of the week but figuring it out later.
People with Alzheimer’s may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean. What’s a typical age-related change? Making a bad decision once in a while.
5. TROUBLE UNDERSTANDING VISUAL IMAGES AND SPATIAL RELATIONSHIPS
9. WITHDRAWAL FROM WORK OR SOCIAL ACTIVITIES
For some people, having vision problems is a sign of Alzheimer’s. They may have difficulty reading, judging distance and determining color or contrast, which may cause problems with driving. What’s a typical age-related change? Vision changes related to cataracts.
6. NEW PROBLEMS WITH WORDS IN SPEAKING OR WRITING
People with Alzheimer’s may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a “watch” a “hand-clock”). What’s a typical age-related change? Sometimes having trouble finding the right word.
7. MISPLACING THINGS AND LOSING THE ABILITY TO RETRACE STEPS
A person with Alzheimer’s disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time. Wh at’s a typic al age - re l ate d c h a nge?
A person with Alzheimer’s may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced. What’s a typical age-related change? Sometimes feeling weary of work, family and social obligations.
10.CHANGES IN MOOD AND PERSONALITY
The mood and personalities of people with Alzheimer’s can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. What’s a typical age-related change? Developing very specific ways of doing things and becoming irritable when a routine is disrupted. If you notice any of the 10 warning signs of Alzheimer’s in yourself or someone you know, don’t ignore them. Schedule an appointment with your doctor. Courtesy Alzheimer’s Association
I always read and comprehended high-level information as part of my professional life. After I retired, I started having a lot of trouble with reading, and I became really concerned. I asked the Twisp librarian if there was anybody who could help me with reading, and she connected me with Chris Holm, a retired teacher. I told her that I was worried about losing my ability to read. She tested my reading and gave me some information about memory loss. Chris and I met two days a week for a couple months until it just became too hard for me. NOTICING CHANGES After I retired, I did some probono fınancial consulting for local nonprofıts. I was OK as long as we were talking numbers, but when they started talking about other things, I couldn’t understand what they were talking about. And I didn’t take the time to learn it because acquiring new information was just too hard. I became uncomfortable at meetings; I didn’t know the people and I couldn’t remember their names. I was getting lost, and I felt I just wasn’t being effective, so I told them it was time for me to resign. At that point, for me, the problem was memory loss along with the fear that it was something else. It’s terrible not knowing, always wondering what’s going on. Around four years after the initial test, I went back to Dr. Diamond and told her I was getting worse. She referred me to a neurologist. Before I went in for testing, I sat down with my friend, Dr. Raleigh Bowden, and we talked about what might be happening. Can you imagine what that feels like? You think you might have it, but you’re not sure yet. The neurologist performed a memory test and ordered an MRI of my brain, blood tests, and spinal tap. These tests rule out other diseases and show vital information for a diagnosis. At the next appointment I learned that I had Alzheimer’s disease. That was about a year and a half ago now, and for Ginger and me, it was a life-changing moment!
My “brother in arms,” Jerry Bristol, was diagnosed with Alzheimer’s about fıve years ago. For several years prior to that, his family noticed that Jerry was having increasing diffıculty fınding the right words and recalling names of people and places. He was having a hard time writing. As Jerry’s daughter, Katie, recalls, “We remained in denial, determined to believe that Dad was simply getting older and more forgetful, that this was simply the natural aging process.” To Jerry’s family, it seems like the disease has simply magnifıed some of his personality traits. According to Katie, Jerry has never been able to multi-task, so when he became able to focus only on one thing at a time, it seemed to be a natural extension of himself. Jerry has always been a kind, gentle and generous person. But because of his lack of good judgment due to Alzheimer’s, his family was forced to limit the cash in his wallet; otherwise, he would simply empty it into the tip jar at the Cinnamon Twisp Bakery. Early signs of dementia may be more obvious to family members or friends. And people with memory loss or other possible warning signs of Alzheimer’s may fınd it hard to recognize they have a problem, or may be in denial, and resist following up on their symptoms. TIME TO PLAN Early diagnosis gives patients and their families more time to plan for the future. While the person with Alzheimer’s is still able to participate, he or she can help the family make decisions about short- and long-term care options, end-of-life decisions, and fınancial and legal matters. And although it’s not easy, knowing the source of your troubles might lessen anxiety about the unknown. For Jerry’s wife, Josephine, planning for the future was one of the most important things they did together after Jerry’s diagnosis. “Once they get to a certain stage, there’s no way for them to articulate what they want,” she said. “It’s never too early to do it.” There is no single test that can
Don Reddington treasures the friendship of Jerry and Josephine Bristol. PHOTO BY LAURELLE WALSH
show whether a person has Alzheimer’s, but scientists are now exploring ways to help physicians diagnose the disease earlier and more accurately. While physicians can almost always determine if a person has dementia, it may be diffıcult to determine the exact cause. Diagnosing Alzheimer’s requires careful medical evaluation, including a thorough medical history;
mental status testing; a physical and neurological exam; and tests, such as blood and urine tests and brain imaging, to rule out other causes of dementia-like symptoms. Medicare’s new annual wellness visit includes assessment for possible cognitive impairment as part of the patient’s overall condition. It is hoped that with this change, earlier detection will be more common.
Chapter 6: Facing the stages of Alzheimer’s disease
F TER Jerry Bristol a nd , several years later, I received the diagnosis of Alzheimer’s disease (AD), we both met with Dr. Raleigh Bowden, a volunteer physician who helps people with health and end-of-life issues. We asked what we should expect in each stage of AD, so that we and our families could plan for the future. Learning about the stages of AD has been an important tool for me, and has helped me and Ginger plan for the future. I have found the information about Alzheimer’s on the Wild Iris Medical Education website, www.nursingceu.com , to be very useful. Dr. Raleigh said that it was important to realize that classifıcations are arbitrary, and that there is a great deal of overlap between stages. The most commonly used classifıcation divides the disease process into three stages: In the fırst stage memory is impaired; in the second stage there is evidence of signifıcant decline in cognition; and in the third stage deterioration and physical defıcits become more apparent. Jerry and I thought, “What a future to expect!” Alzheimer’s disease actually begins creating changes in the brain many years before a person shows any signs of the disease. This is called “preclinical Alzheimer’s.” Most people, like me, suspect something is wrong when they begin noticing problems with memory and concentration, or trouble coming up with the right word. This is the early stage of the disease, called “mild Alzheimer’s,” when many people go to the doc-
tor for testing, and receive their diagnosis. I received my diagnosis about a year and a half ago. EARLY STAGE I am in the early stage, maybe moving into the first part of the second stage. I have loss of memory. It is more difficult to remember the location of places such as cities, counties and other geographic areas, and the na me s of fa m i ly fr iend s a nd acq ua i nt a nce s . Re ad i n g a nd
I get sad when I can’t remember someone I have known for a long time. More than once I have wept after a conversation because I just could not remember them.
Stages of Alzheimer’s disease EARLY (MILD) STAGE
In this stage, people may: • Forget words or misplace objects • Forget something they just read • Ask the same question over and over • Have increasing trouble making plans or organizing • Not remember names when meeting new people
MODERATE OR MID STAGE
In this stage, people may: • Have increased memory loss and confusion • Have problems recognizing family and friends • Continuously repeat stories, favorite wants (foods, places, songs, etc.), or motions • Have decreased ability to perform complex tasks (planning dinner) or to handle
personal finances (paying bills) • Lack of concern for hygiene and appearance • Require assistance in choosing proper clothing to wear for day, season, or occasion
LATE (SEVERE) STAGE
In this stage, there is almost total memory loss. The individual may: • Recognize faces but forget names • Mistake a person for someone else • Have delusions — such as thinking he/she needs to go to work — even though he/she no longer has a job There is a strong need for holding something close for tactile stimulation, nurturing, companionship and comfort Basic abilities such as eating, walking, and sitting up fade during
this period; the individual may no longer recognize when he is thirsty or hungry and will need help with all basic activities of daily living.
Alzheimer’s disease typically progress over two to 20 years, and individuals live on average for eight to 10 years from diagnosis. Individuals with Alzheimer’s disease are likely to develop coexisting illnesses and most commonly die from pneumonia. Alzheimer’s disease is among the top 10 leading causes of death in the U.S. For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/AboutUs/ email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
Don Reddington sometimes finds it easier to relate to animals than to people. PHOTO BY STEVE MITCHELL
I am comfortable driving to places that I am familiar with, but I hand over the keys on longer trips or if I feel poorly. Sometimes I ask Ginger how I am doing, and she gives me feedback. I know that someday I will have to give up driving. Ginger and I will adapt as we go along. writing have become difficult. It takes me longer to work and finish projects. I am comfortable driving to places that I am familiar with, but I hand over the keys on longer trips or if I feel poorly. Sometimes I ask Ginger how I am doing, and she gives me feedback. I know that someday I will have to give up driving. Ginger and I will adapt as we go along. I can also be affected by mood
changes; however, I want to stay happy. In fact, I learned that depression is common among people with AD. So I am taking an antidepressant to help. I get sad when I can’t remember someone I have known for a long time. More than once I have wept after a conversation because I just could not remember them. Although some days are better than others, my goal is to enjoy life and remember that “Life is good.”
Don Reddington shares special time with his visiting grandson, Marcus Scarpella. PHOTO BY DONNI REDDINGTON
The symptoms of AD will grow mor e pr onou nc e d ove r t i me , although the rate of change varies from person to person. On average, a person with Alzheimer’s lives four to eight years after diagnosis; however, some may live as long as 20 years, depending on other health factors, according to the Alzheimer’s Association. MID-STAGE Moderate, or “mid-sta ge” A lzheimer’s may last for many years. Frustration is the hallmark of this stage, as we fınd it more diffıcult to express our thoughts and perform routine tasks. The person in the mid-stage may become moody or withdrawn, especially in socially or mentally challenging situations. They may have personality changes like suspiciousness or anger. My friend Jerry is in mid-stage. He was diagnosed with AD fıve years ago. His mother had AD, so his family knew roughly what to expect from the disease. Nevertheless, his daughter Katie writes, “Although the stages of the disease are similar among patients, the effects on the individual are unique to that person.” For example, Jerry began losing his ability to speak earlier than most people. While loss of speech
is common in the later stage of AD, according to Dr. Raleigh the disease is highly variable in terms of which nerves get damaged, and when. I’m grateful that Jerry and I can still share in some conversation. With the help of Dr. Ann Diamond and Dr. Raleigh, the Bristols were able to talk openly and honestly about what was happening to Jerry, what was going to happen and how they were going to prepare for the various stages. For example, they knew that Jerry would lose the ability to drive a car, that his reaction time would slow and his judgment would become impaired. They planned for this. They talked about it before it happened, and Katie and Josephine checked in with Jerry about whether he was comfortable driving and checked in with each other about whether they were comfortable riding with him. When the time came for Jerry to stop driving, they were ready and they had a plan. LATE STAGE As the disease progresses, the person with AD will require more care and assistance with activities of daily living. Jerry gets some help with his personal care, but he can still do many things himself.
Enjoying outdoor activities brings physical and mental health benefits, Don Reddington believes. PHOTO COURTESY OF REDDINGTON FAMILY
Later symptoms of AD include confusion about where you are or what day it is, reversals of sleep patterns, and a tendency to wander and get lost. In severe, or “late-stage” Alzheimer’s, the person needs around-theclock care and assistance with eating, bathing, dressing and toileting. They will lose their ability to communicate verbally. They will need help walking and safely transferring into a bed or chair. They will become vulnerable to infections like pneumonia and urinary tract infections. Josephine and Katie wish to keep Jerry living at home as long as possible, and have discussed the need for an overnight caregiver someday. “We’ll know when we can no longer cope at home, physically or mentally, when it becomes too much for us,” Katie said. I hope to continue living at home,
with in-home care assistance for Ginger, through mid-stage. When I can no longer live at home, I will move to Jamie’s Place, an adult family home in Winthrop that provides nursing care in a residential environment. When we began “Living with Alzheimer’s” in January 2015, I was in the early stage of the disease and I was doing most of the writing for each chapter. I knew at that time that this work would become more diffıcult for me and, as it turns out, my original guess that I needed to get the chapters done by June was correct! It is now July 2015. At this point, I have some of the symptoms of midstage AD, and reading and writing have become quite diffıcult. But with organizing and writing help from my project partners, Dr. Raleigh and Laurelle, we will complete the series.
Being aware of your symptoms as well as the typical disease course helps families plan and make the best use of time. PHOTO BY DONNI REDDINGTON
Symptoms of Alzheimer’s disease Symptoms are divided into two categories: cognitive, or intellectual, and psychiatric. Differentiating them is important so that behavioral problems that are caused by loss of cognitive functioning are not treated with anti-psychotic or anti-anxiety medications. C o g n i t i ve , o r i n te l l e c t u a l , symptoms are amnesia, aphasia, apraxia and agnosia (the “4 A’s” of Alzheimer’s). Amnesia is def ined as loss of memory, or the inability to remember facts or events. We have two types of memories: the short-term (recent, new) and long-term (remote, old) memories. Short-term memory is programmed in a part of the brain called the temporal lobe, while long-term memory is stored throughout extensive nerve cell networks in the temporal and parietal lobes. In Alzheimer’s disease, short-term memory storage is damaged first. Aphasia is the inability to communicate effectively. The loss of ability to speak and write is called
expressive aphasia. An individual may forget words he has learned, and will have increasing difficulty with communication. With receptive aphasia, an individual may be unable to understand spoken or written words or may read and not understand a word of what is read. Sometimes an individual pretends to understand and even nods in agreement; this is to cover-up aphasia. Although individuals may not understand words and grammar, they may still understand non-verbal behavior, i.e., smiling. Apraxia is the inability to do pre-programmed motor tasks, or to perform activities of daily living such as brushing teeth and dressing. An individual may forget all motor skills learned during development. Sophisticated motor skills that require extensive learning, such as job-related skills, are the first functions that become impaired. More instinctive functions like chewing, swallowing and walking are lost in the last stages of the disease.
Agnosia is an individual’s inability to correctly interpret signals from their five senses. Individuals with Alzheimer’s disease may not recognize familiar people and objects. A common yet often unrecognized agnosia is the inability to appropriately perceive visceral, or internal, information such as a full bladder or chest pain. Major psychiatric symptoms include personality changes, depression, hallucinations and delusions. Personality changes can become evident in the early stages of Alzheimer’s disease. Signs include irritability, apathy, withdrawal and isolation. Individuals may show symptoms of depression at any stage of the disease. Depression is treatable, even in the later stages of Alzheimer’s disease. Psychotic symptoms include hallucinations and delusions, which usually occur in the middle stage. Hallucinations typically are auditory and/or visual, and sensory impairments, such as hearing loss
or poor eyesight, tend to increase hallucinations in the elderly. Hallucinations and delusions can be very upsetting to the person with the disease. Common reactions are feelings of fear, anxiety and paranoia, as well as agitation, aggression and verbal outbursts. Individuals with psychiatric symptoms tend to exhibit more behavioral problems than those without these symptoms. It is important to recognize these symptoms so that appropriate medications can be prescribed and safety precautions can be taken. Psychotic symptoms can often be reduced through the carefully supervised use of medications. Talk to your primary care doctor, neurologist or geriatric psychiatrist about these symptoms because they are treatable. For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/AboutUs/ email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
Chapter 7: Caring for the person with Alzheimer’s
HAVE Alzheimer’s disease (AD). And while I don’t require a lot of help from my wife, Ginger, now, I know that in time I am going to need help doing lots of things I am used to doing for myself. I will need the help of many caregivers, and I hope they understand the special needs of a person with AD. Fortunately for me, I learned
my diagnosis at an early stage of the disease, which has given me a chance to think about how I’d like to be cared for later. I have learned a lot from spending time with my friend Jerry Bristol, who is at a later stage of AD. I also learned about the challenges of caring for a person with dementia from conversations with Dr. Jody Love, who helped care for her
Caregiving involves continually adjusting to the changing needs of the person with AD. It requires a tremendous amount of patience, listening to the same questions over and over and being present for the frustration and anger that sometimes arises in the person with AD — patience not being understood by the person with AD. — Dr. Raleigh Bowden Ginger Reddington is the primary caregiver for her husband, Don, but also is assisted by others. PHOTO BY DONNI REDDINGTON
Don Reddington especially enjoys time with the animals at his Benson Creek home. PHOTO BY STEVE MITCHELL
A pet is a person you can talk to. These are my future friends. As I get worse I have more fun with my animals than I do with people. 36
father-in-law, Harry, until his death. One of the things Dr. Love said that really grabbed my attention was that Harry became more and more like a child over time. It’s nice to think that I may become like a child again once I reach the later stage of the disease. “One of the best parts of the experience was getting insight into what Harry would have been like as a child,” Dr. Love said. “It was a blessing to me.” Dr. Love said caring for Harry required incredible patience. She and her husband, Mark, would remind Harry how to wash his hands after using the bathroom and then had to teach him how to do it again an hour later. “It was like teaching a child who has never learned it,” she recalls. Once she understood that Harry was “going in reverse,”
it helped her deal with the frustrations of caregiving, she said. My go o d fr iend D r. R a lei g h Bowden works with people facing diffıcult health challenges, such as dementia and Alzheimer’s disease. She also works to support family caregivers. She said patience is the biggest challenge for caregivers. “Caregiving involves continually adjusting to the changing needs of the person with AD,” Dr. Raleigh said. “It requires a tremendous amount of patience, listening to the same questions over and over and being present for the frustration and anger that sometimes arises in the person with AD — patience not being understood by the person with AD.” PATIENCE IS A CHALLENGE I think that patience is the biggest
challenge for Ginger in taking care of me. I am still able to do most things for myself, but Ginger has to help me remember words and names, recall places and people, review our fınances, and plan and organize my days. I can tell you that I have bad days and days that I feel better. Sometimes I lose patience more quickly when things aren’t working right, like on the computer. When I do work around the house I have to think more carefully about what to do fırst and what to do next, whereas before it was automatic. As a couple, Ginger and I have gotten really good at fıguring out our day and what we’re doing. Because it ta kes me longer to do things now, I try to fıgure out how much time it’s going to take me to do something.
Dr. Love said keeping a regular daily schedule helped Harry a lot. “It gave him a sense of security and it helped us, too,” she said. I want to continue doing things I’m familiar with. For example, I’ve been working steadily to clean up our property since last summer’s fıres and f loods. I go out on the tractor, put on my iPod and listen to music. I like driving my tractor because I know what I’m doing. It gives me peace. When I stay busy, I feel better. “It’s important to give the person with AD credit for being able to do a lot more,” Dr. Raleigh said. “Continuing to do tasks that they’re used to may allow them to keep their abilities longer.” Meaningful activities can also help reduce behaviors like wandering and agitation, according to the Alzheimer’s Association. Jerry’s family try to fınd jobs that Jerry can help out with and adapt tasks to his abilities. For example, Jerry was able to help his wife, Josephine, and daughter, Katie, sort and peel garlic as long as they cleared the papery wrappers off his work area as he went along and gave him fresh material to work with, Josephine said. “He wants to help so much, but there are very few things we fınd that he can help with. He was able to help wash the planting pots for
Education and care: what you can do • Educate yourself about Alzheimer’s disease. A variety of valuable information around Alzheimer’s disease and related illnesses can be found at www.alzfdn.org. Support groups, educational workshops, and utilizing community resources and professionals will also increase your knowledge of the disease and what to expect. • Build your skills. Key skills for any care partner includes communication, understanding safety considerations, understanding behaviors, and managing activities of daily living. • Develop empathy. It’s important to gain understanding of what it is like to be a person living with dementia, experiencing this loss, while recognizing
the garden; he can help me make the bed; he can put some of the dishes away, but not all,” said Josephine. “Having him help is not easy either,” she admitted. “Whereas it may take somebody two minutes to do something, it takes Jerry 10
Don Reddington relaxes at Spanish Camp on a pack trip into the Pasayten Wilderness Area. PHOTO BY GINGER REDDINGTON
your own losses. Manage your expectations of your loved one and remain patient with the disease. • Avoid care-giver burnout. Make time for yourself! Seek support, eat well, get sleep, exercise, and focus on you! • Support is critical. Seek support from family, friends, and medical and mental health professionals. They can assist you when things get tough. • Stay active and engaged. Be mindful of what brings your loved one pleasure to maintain an active and meaningful life, whether this be through exercise, entertainment, music, or the arts. • Advocate. Be involved in your loved one’s medical care. Know who is a part of the care team, ask questions, express concerns,
minutes.” That’s where the patience comes in! EASIER COMMUNICATION Jerry is an important part of my life. When we are alone together, without pressure from others, we both have an easier time communicating. Sometimes I see Jerry get worked up and upset when he’s trying to speak and people don’t understand him. When that happens, I want to advise him not to try so hard to do something he cannot do. I want to tell him, “Just live within your capability.” I want people to know that it’s important to stop what you’re doing and look the person in the eye when you’re talking to someone with AD. Stop doing what you’re doing and sit down and talk to the person. Jerry has a special photo album called “Jerry’s Face Book.” It has family photos, pictures of friends, and pictures of familiar places around Twisp. It is a good communication tool, and I sometimes use it when I’m talking to Jerry to help him remember people. Animals are good therapy for
and discuss treatment options. • Be prepared. Take care of financial, legal, and longterm care planning issues. Try to involve your loved one in decision making if they are still capable, and consider their wishes related to future care and end of life issues. • Don’t forget to connect. Kindness, humor, and creativity are essential parts of care giving. Hugs, gentle touch, and compassion will help your loved one feel connected and loved. • Stay positive. Focus on the capabilities and strengths that remain with your loved one and enjoy your relationship while you are still together. • Reach out for care! Connecting can make all the difference. Courtesy of Alzheimer’s Foundation
people with AD. I like staying close to my animals; I feel comfortable with them. People ask me why I have all these animals and I say, “because I can talk to them easier than I can talk to you.” Spending time with my cats, dogs and rabbits calms me down. A pet is a person you can talk to. These are my future friends. As I get worse I have more fun with my animals than I do with people. Dr. Love told me that Harry loved to sit in front of their large windows and watch the deer walk by, the chickens in the yard, and the hummingbirds at the feeder. Sitting and petting the cat seemed to be calming for him too. Jerry adores babies and seems to have a special connection with them. His daughter, Katie, calls it baby therapy because it seems to bring both so much pleasure. I’m trying to enjoy what I have today, and not to worry about things I cannot control, like whether or not there’s going to be another big fıre this year. For me there’s more important things to worry about. It is what it is. Life is good! 37
Chapter 8: Reflections on the project
B O U T o n e y e a r a g o D r. R a leig h Bowden a nd I began discussing writing a book about what it ’s like to live with Alzheimer’s disease (AD). I have been educating myself about Alzheimer’s and talking openly with people about the disease since I received my diagnosis in early 2014. I have found that a lot of people are in denial about having the disease, or are trying to hide it. I decided I want to help people with AD who may be denying it, and the family members of people with AD. I want to be open about what my friend Jerry Bristol, who is at a later stage of the disease, and I are going through and about how people with AD would like to be treated. I am a man on a mission. With the help of Dr. Raleigh and reporter Laurelle Walsh, I drafted a sample chapter of “Living with Alzheimer’s,” which Methow Valley News publisher Don Nelson agreed to publish as part of a monthly column that started in January 2015. Since then we have published seven chapters plus an introduction by Ms. Walsh. We included the experiences of my wife, Ginger, Josephine Bristol, Katie Bristol and Jody Love — all of whom have lived with a person with Alzheimer’s. This will be the fınal chapter, and I would like to express what this project has meant to me. This project has made Jerry and me very happy! We have been delighted and surprised at the community response, and that the articles went all over the country because people passed them around to friends and family. I love it when people say, “Don, thank you for what you have been doing!”
EXCEEDED OUR GOAL We had a goal and we exceeded that goal, went way beyond. By sharing our personal journeys, we have been able to give knowledge to others facing the same challenges. In the process, I really wanted to thank the people who have helped me put humor into the whole topic and help other families understand what the person with AD is going through. Jerry and I are determined not to let Alzheimer’s ruin the rest of our lives. We want to live a good life, and we want to tell others with the disease: Continue enjoying your life. One thing I think I have contributed is getting people with AD to start exercising and continue being active. I can tell you without a doubt that every time I go outdoors to work on our farm I feel better — way different than when I just sit around. When I do just sit around, I feel awful. With exercise, I sleep really well. That’s been really good to realize and to help other people understand. The hardest thing about the project was the frustration I had around misunderstandings with my project partners. We had different ideas about two of the chapters that Ms. Wa lsh a nd Dr. R a leig h t houg ht should be combined and I thought were distinct. Writing the chapters together has not been easy! As my disease has progressed the later part of the project was simply harder. It took me hours to work on each chapter. And it was harder to bring humor into the later chapters. I am clearly having more challenges with many sorts of things, especially technical things. It is important to be open about what’s going on with myself. Trying to fınish
the project before my disease progressed too far was really hard. I learned from my doctor last week that I am beginning the mid stage of Alzheimer’s. Ginger and I will keep on going. GREAT FEEDBACK One of the best things is when people I don’t even know stop me and tell me how much they like the series. I ran into somebody I didn’t even know at the kids’ swim meet who said, “I want to thank you.” The Wenatchee World has been publishing the series as well, and World reporter Don Seabrook came to our home to photograph Ginger and me. This was great! The Alzheimer’s Association of Washington is also publishing several chapters of “Living with Alzheimer’s” on its blog, alzwa.wordpress.com. People have come up to me with so much wonderful appreciation and feedback. I have had people call from Wenatchee who read it in the World ; we’re even helping people back on the East Coast. I had no idea there would be so many thank yous. Alzheimer’s disease is big. One out of every nine people will get the damned disease. I hope these chapters can help people before the disease becomes overwhelming for them. Jerry and I thank you for reading this series. So many people have approached me and Ginger, wanting more information, wanting a book that they can send to family members. Dr. Raleigh and I are committed to turning “Living with Alzheimer’s” into a book so that it can reach even more people. This is not goodbye, but many new hellos!
Don Reddington is pleased at the positive response to his articles on living with Alzheimer’s. PHOTO BY STEVE MITCHELL
I’ve had a really good life of caring about other people. I really enjoy helping people who have problems. As I go into my last stage, I want to get these last words out. — Don Reddington
Don Reddington remains devoted to his mission of spreading awareness about Alzheimer’s disease. PHOTO BY STEVE MITCHELL
Chapter 9: Looking back, and ahead BY L A U R E L L E WA L S H & DON NELSON
ON Reddington knows he is running out of time, and there are more things he wants to say while he still can say them.
During interviews as this publication neared its completion in July and August 2016, Don was determined to pass along his thoughts about living with the diagnosis, treatment and progression of Alzheimer’s disease (AD). Some of them echo topics he covered in the eight articles that appeared in the
Methow Valley News. But they have greater urgency now for Don. “I wanted to talk to you right away. I was afraid that I wouldn’t be able to explain all this,” he said at the start of a recent interview. Don is not able to write things down or read. He is still conversant and aware, knows who he is talking
to, tells jokes and laughs, and talks about his daily activities. He is articulate and focused when talking about Alzheimer’s. His long-term memory is still good. But he is also forgetful, repetitive, strays off topic and gets frustrated — and knows these things. Sometimes he fınds it diffıcult to talk. He fears losing his
Don Reddington has more he wants to say as his disease progesses. PHOTO BY STEVE MITCHELL
Some things Don would like us all to hear, or have reinforced: • Denial is counterproductive and deprives Alzheimer’s sufferers of the ability to fully enjoy their lives even as the disease progresses. • Acceptance is not acquiescence. Understanding the disease allows one to adjust, plan and focus on living with its presence. • A healthy attitude, constant activity and strong connections with friends and family are vital in coping with Alzheimer’s. • Direct, honest and consistent communication among everyone involved is necessary from the beginning. ability to speak and thus his ability to share his message. Some things Don would like us all to hear, or have reinforced: • Denial is counterproductive and deprives Alzheimer’s sufferers of the ability to fully enjoy their lives even as the disease progresses. • Acceptance is not acquiescence. Understanding the disease allows one to adjust, plan and focus on living with its presence. • A healthy attitude, constant activity and strong connections with friends and family are vital in cop42
ing with Alzheimer’s. • Direct, honest and consistent communication among everyone involved is necessary from the beginning. In a recent interview, Don acknowledged that he will soon be in the third, most-severe stage of AD, when cognitive abilities may degenerate rapidly and it becomes increasingly diffıcult to interact with other people. Sometimes, he said, it seems like “my closest friends are dogs, cats and other animals.”
Ginger and Don Reddington are grateful for the community’s support after the publication of his articles. PHOTO BY STEVE MITCHELL
Still, Don says, he tries to remain as active as possible. Lately, he’s been attending a water aerobics class at the public pool in Twisp, and enjoys talking with his fellow exercisers . “I have more fun with the group at the pool,” he said. “We laugh and talk.” Publishing the “Living With Alzheimer’s” series has helped to normalize things for Don’s friends in the community, according to Josephine Bristol, Jerry’s wife. “Everyone at the pool has read [“Living With Alzheimer’s”], so they already know that he has the disease,” she said. “They all give him extra help if he needs it and it’s no big deal.” Don also continues to enjoy listening to music and other activities that keep him moving. He loves the music of the 1950s and ‘60s. It triggers memories, and takes his mind off worrying about the future. “You can continue your life,” he said. And friends and family members are being rallied to take Don out for a few hours of conversation or a bike ride — activities that Don says he wants to continue for as long as possible. “We’ve got all these people now who want to help me stay active. I can keep busy and live. I’m still taking care of my mule and I’m
back on the tractor,” he said. For all that, Don has never lost sight of the fact that AD “is a terrible disease.” “I am at the point where I have a great deal of diffıculty talking. Soon I will not be able to talk at all,” he said. Don talks a lot about his friendship with Jerry Bristol, who died last year from complications of Alzheimer’s. Their connection helped sustain them both, especially after Don learned in 2014 that he too had the disease. He watched Jerry decline through the fınal two stages of AD, an experience that turned Don into something of an activist. Don said he is “honored” by the attention his series of articles has generated, but lamented that many people suffering from AD don’t seek a diagnosis or get help. He hopes that re-printing the articles will make a difference in some people’s lives. “I’ve seen the effects of denial, and the lack of response or reaction, on others,” he said. “If you wait, it’s too late. “You really need to be active in the fırst two stages. Figure out what you are going to need when you can’t talk anymore.” Some considerations are simply practical, he said. Early on, he
stopped driving, in order to avoid a ny lia bility that might be incurred because of the illness. He urges people with AD to turn over legal responsibility to others and to turn over fınancial responsibility to their spouses or other family, friends or professionals. He took care of long-term legal and fınancial planning for his family in the early stages of the illness. Now, as his abilities have declined, he is able to remember that his family members have trusted professionals to help them with the kinds of things that were his responsibilities in the past. Even as his memory fails, Don believes everything he is still able to say is worth repeating. For those with Alzheimer’s: Keep a positive attitude. Be active. Do the things you enjoy. When you are interacting with those who have AD: Be patient. Look them in the eye. Speak respectfully. Try to understand what it’s like to be non-verbal, and don’t always expect a response. “I’ve had a really good life of caring about other people. I really enjoy helping people who have problems. As I go into my last stage, I want to get these last words out,” he said. S h a r o n C o h e n , a c a r e g ive r for both Jerry Bristol and Don Reddington, contributed to this article.
Don Reddington goes for a stroll on a visit to Hawaii. PHOTO BY DONNI REDDINGTON
I’ve seen the effects of denial, and the lack of response or reaction, on others. If you wait, it’s too late. — Don Reddington
Alzheimer’s disease research The causes of Alzheimer’s disease are still unknown. Current research indicates that Alzheimer’s disease may be triggered by a multitude of factors, including age, genetic makeup, oxidative damage to neurons from the overproduction of toxic free radicals, serious head injuries, brain inflammation, and environmental factors. A ge is th e m o s t i m p o r t a n t known risk factor for Alzheimer’s disease. There are two types of the dis-
ease: sporadic Alzheimer’s disease and familial Al zheimer’s disease (FAD). Unlike sporadic Alzheimer’s disease, FAD follows an obvious inheritance pattern. Less than 10 percent of Alzheimer’s disease cases are FAD. This rare form of Alzheimer’s disease usually occurs between the ages of 30 and 60. On the genetic front, scientists have zeroed in on three mutations on chromosomes 1, 14 and 21 that cause early-onset Alzheimer’s disease, which generally affects those
aged 30 to 60. Other genes boost susceptibility, but do not signal that a person will definitely develop the disease. Multiple research studies indicate that inheritance of a specific one of the three forms, or alleles, of the apolipoprotein E (apoE) gene on chromosome 19 heightens the risk of late-onset Alzheimer’s disease. Those who carry one copy of the allele e4 face a higher risk of developing Alzheimer’s disease, and those with two copies of e4 confront the greatest risk. Another
relatively rare apoE allele, e2, appears linked to a lower risk of the disease. Several other studies suggest that a gene or genes on chromosome 10 may also boost an individual’s risk of developing late-onset Alzheimer’s disease For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers at www.alzfdn.org/AboutUs/ email.html or call (866) 232-8484. Courtesy of Alzheimer’s Foundation
Brothers in arms Jerry Bristol provided companionship and inspiration for Don Reddington as the men confronted the challenges of Alzheimer’s disease In life, Jerry Bristol helped us understand the impacts of Alzheimer’s disease. Not long after his passing, Jerry’s friends and family reflected on the man who continues to inspire them. BY L A U R E L L E WA L S H
HREE months after the fınal installment of “Living with Alzheimer’s” appeared in the Methow Valley News, Jerry Bristol, the friend whom Don Reddington called his “brother in arms,” passed away due to complications of Alzheimer ’s d isea se . He wa s 76 years old. Jerry was, in many ways, Don’s inspiration for writing “Living with Alzheimer’s.” Don and Jerry fırst met at a per formance at the Methow Valley Community Center in Twisp. Jerry’s speech was already quite compromised, Don recalls, and “at that time I didn’ t know anything about Alzheimer’s. I had never met anybody with it.” Learning that Alzheimer’s was the cause of his new friend’s problems prompted Don to consult a doctor about his own memory concerns. Initial cognitive tests were inconclusive, but further testing down the road led to the discovery that Don has Alzheimer’s too. Don began visiting Jerry once
A SPECIAL BOND Don’s extra effort to communicate with Jerry created a bond between the men, Don’s wife, Ginger Reddington, believes. “We were very close even though we couldn’t talk to each other,” agrees Don. “Jerry was a support for Don too,” Ginger says. “Don always felt good when he went over there.” Jerry was a handsome man with a shock of white hair, twinkly eyes and a ready smile. “When Jerry smiled, his whole face lit up; his eyes smiled too,” Josephine says. Jerry enjoyed hum a n con nect ion s , and Josephine made s u r e her hu s b a nd stayed active in the community as long as his health permitted. Just weeks before Jer r y’s deat h , the Bristols attended the Methow Valley United Methodist Church’s Thanksgiv—Katie Bristol ing dinner, as they had done for years, only this time it was diffıcult for Jerry to day I was walking with him around fınish his meal — not because of his house and in the garden, when any physical impairment, but beall of a sudden Jerry just started cause of the great many people who talking. I said, ‘Jerry, do you know came over to greet and hug him, Jowhat? You were just talking!’” Don sephine remembers. “He was alive recalls. “I reminded him of that ev- with people,” she says. Josephine saw a positive change ery time I saw him and he’d smile.” “Don was capable of understand- in their friends’ behavior once ing what Jerry was trying to say,” Ka- they understood how important tie says. “They were kindred spirits.” physical contact is for Alzheimer’s a week; the two regularly took walks and had lunches together. Jerry’s daughter, Katie Bristol, and his wife, Josephine Bristol, helped Don understand what was going on with Jerry and how to interact with him. At that time, Jerry could not carry on a regular conversation, but he seemed to understand a good deal of what Don was saying and tried to respond, says Don. “So I would take Jerry out for walks and talks on our own. One
Don was capable of understanding what Jerry was trying to say. They were kindred spirits.
Don Reddington, left, and Jerry Bristol provided vital mutual support in coping with the challenges of Alzheimer’s disease. PHOTO BY LAURELLE WALSH
Sometimes I’d get emotional and cry, and Dad would hug me. He didn’t know the source of my tears, but he was still my dad. I was able to be a daughter again in those moments. — Katie Bristol patients. “People would stop Jerry in the street to give him a hug. Jerry loved to hug people,” Josephine says. “It offered him a way to connect with people non-verbally,” Katie adds. Don remembers friends telling him that they wanted to talk to Jerry, but they didn’t know how. “I told them to just slow down and look him in the eye. That’s why it was so important for me to put the part about communication into the [“Living with Alzheimer’s”] article,”
Don says. “People have told me it helped them learn how to talk with Alzheimer’s people.” LEARNING FROM JERRY Katie treasures the times when she could just be Jerry’s daughter, when she and her dad were sharing a joke, a laugh or a good time. “ There were moments on walks when we were happy and content in each other’s company, and I was not worried about his physical safety,” she says.
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In many ways the parent/child roles reversed as her father’s needs increased, Katie explains. “The nurturing instinct in me took over, and I experienced a great desire to take care of him and protect him. Sometimes I’d get emotional and cry, and Dad would hug me,” Katie remembers. “He didn’t know the source of my tears, but he was still my dad. I was able to be a daughter again in those moments,” she says. Jerry often experienced frustration at his inability to take care of himself, but “he never forgot to say ‘thank you,’” according to Josephine. “When it was time for his caregivers to say goodbye, he always said ‘ thank you.’ His social graces were excellent. It was part of Jerry’s upbringing to always be polite,” she says. “He was very generous,” Katie says. “When we were going out for a walk, I would help him put a mitten on, and he would hold out the other mitten and offer it to me, for me to wear.” “ [Katie] was very close to Jerry,” Don says. “It was interesting to
watch her with him. She was very in tune with helping him, what he was able to do and not do. And Katie was really helpful with me about what to expect. Being with Jerry and listening to Katie helped me tremendously.” It was diffıcult to watch Jerry’s deterioration over time, Ginger says. Don recalls that “Jerry got really frustrated as time went on, especially when he had trouble walking.” Don continues, fıghting back tears: “I would see him having trouble and realize that’s going to be me someday. I can tell now I’m having the same problems Jerry did.” ACCEPTANCE OF THE DISEASE “Forgetting words and names was the fırst indicator” that her dad was having problems, Katie says. “He had short-term memory lapses, but he was aware of his confusion. He seemed very aware of the path the disease was taking. In some ways it made it harder.” In terms of her own acceptance of the disease, Katie admits that
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Jerry Bristol, left, with his brother Peter Bristol. PHOTO BY KATIE BRISTOL
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“denial is an incredibly powerful thing.” But when a specialist in Seattle confırmed her father’s diagnosis, the family could no longer deny
it, she says. “I fell apart. Mom fell apart. Dad accepted it,” Katie says. “I couldn’t drive home. Dad drove us home. He
showed amazing strength.” Katie believes her odds of getting Alzheimer’s disease are about 50/50. “It’s a good lesson for me not to take things for granted,” she says. She has taken steps to reduce stress in her life and make happiness a priority. “I’m not going to waste any time working on my bucket list,” Katie says. GENETIC LINKS There is a strong genetic predisposition to Alzheimer’s disease in the Bristol family. Jerry’s mother was diagnosed with Alzheimer’s upon her death in 1988. Her brother and her mother also had dementia when they died. “Most likely, they had Alzheimer’s disease too,” says Jerry’s younger brother Peter, of Rhode Island. Peter is an outspoken advocate for Alzheimer’s research and, in 2014, became the fırst patient to receive an experimental drug in a landmark clinical trial called the AntiAmyloid Treatment in Asymptomatic Alzheimer’s study, or A4 Study. “When Jerry was diagnosed with
Alzheimer’s, I researched the literature, attended lectures, and studied the causes and effects,” says Peter. He took tests and inquired into Alzheimer’s research at nearby Butler Hospital’s Memory and Aging Program in Providence. Though Peter shows no outward signs of the disease, a PET scan revealed a buildup of amyloid plaque in his brain, which scientists believe plays a key role in the eventual development of Alzheimer’s-related memory loss. In early 2014, Peter was accepted into the A4 Study, whose aim is to discover whether a new drug, solanezumab, might decrease amyloid and slow memory loss. He is now two years into the three-yearlong study, which involves monthly infusions, periodic physicals, MRIs, and cognitive testing every three months. He will not know until the end of the double-blind study whether he received the experimental medicine or a placebo. “Whether I get Alzheimer’s disease or not, that is my fate and I will live with it,” Peter says. “Whether I
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get the treatment of solanezumab or a placebo, that is my fate and I will live with it. However, if I can prevent my children and their children from getting this devastating disease by participating in this study, I feel empowered to help. If I had one wish, I would wish that they will not get Alzheimer’s disease passed down through our genes,” he says. Peter recalls a conversation that took place while he was visiting Jerry in the fall of 2014. The Reddingtons had been invited over to the Bristols’ house for tea and to learn about Peter’s participation in Alzheimer’s research. Don asked Peter why he had decided to join the A4 study. “We were all sitting on the porch having tea, and Jerry was sitting opposite me,” Peter remembers. “I looked at my brother and answered Don this way: ‘It’s because of you, Jerry. The way you handle your disease with a smile and determination to make the best of each day gives me the strength and will that I can do that too.’
“Jerry looked back at me and said, ‘Thank you,’” Peter recalls. CLOSURE When Don began the “Living with Alzheimer’s” series in early 2015, he did most of the writing himself. Routine daily activities such as speaking, using the telephone and computer, driving, and skiing were all within reach. He is now facing the fact that these functions have become diffıcult, if not impossible, for him. “I’ve never had these problems before, but after having trouble this winter, I decided I’m not going to ski anymore,” says Don, a life-long devotee of both alpine and Nordic skiing. “I don’t like what’s happening, but there’s nothing I can do.” Last December, Don traveled on his own to Colorado to visit his daughters and grandchildren. While he was out of town, Jerry took a turn for the worse. Ginger went over to see Jerry, ”who was going in and out of consciousness,” she recalls. “I told him, ‘Don is going to be back from his
trip on Wednesday. If you hang on I’ll bring him to you.’” Two days later, at the airport in Spokane, Ginger told Don about Jerry’s deteriorating condition. They drove straight to the Bristols’ house. “I lay down next to him and talked to him,” Don recalls. “I told him,
‘I’ll see you on the other side.’” Jerry died the next day. “I miss him, but I’m happy for him,” Don says. “This is a terrible disease.” “Jerry got to skip a lot of the bad parts,” Ginger says, “and for that, we’re happy.”
Don Reddington, left, and Jerry Bristol found ways to communicate even as Jerry lost his ability to speak. PHOTO BY LAURELLE WALSH
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About ‘Living With Alzheimer’s: The Reddington Project’
T h i s pu bl ic at ion wa s produced by the staff of the Methow Valley News, a weekly newspaper based in Twisp, Washington. The News has a circulation of about 2,800 and has been published for more than 113 years. In 2015, the newspaper received a national Society of Professional Journalists award for its deadline reporting on the Carlton Complex Fire of 2014. The Methow Valley, with a full-time population of
about 5,000, is located in nor t h cent ra l Wa sh in gton and is noted for its scenic beauty and many outdoor recreation attractions. It is home to the largest groomed Nordic skiing trail system in North America. The project was made possible by the courageous participation of the Reddington and Bristol families, who shared their stories with our community. We a re a lso grateful for the invaluable support and
partnership provided by Room One, a nonprofıt social services agency that meets the needs of many Methow Valley residents with compassion and extraordinary care. To provide background material about Alzheimer’s disease, we reprinted some informational material provided by the Alzheimer’s Foundation on its website, www.alzfdn.org. The foundation and the Alzheimer’s Association, www.alz.org, are great sources of reliable information. “Living With Alzheimer’s: The Reddington Project ” would not have been possible without the incredible generosity of many people who contributed to a special fund set up to cover production costs of the publication. See the inside back cover for a list of those donors. We can’t thank them enough. We also extend thanks to the local and regional advertis-
GRAPHIC BY DARLA HUSSEY
ers who chose to be part of the publication. Photography came from a variety of sources, including Methow Valley photographers Steve Mitchell and Donni Reddington, Don and Ginger Reddington’s daughter. The publication was designed by Da rla Hussey and proofread by Laurelle Walsh. Copies of “Living With Alzheimer’s: The Reddington
Project” are being distributed free of charge. For copies mailed from our offıce, we charge a $5 handling fee plus the cost of postage. T he News ca n be contacted at (509) 997-7011, or by em a i l at frontde sk@ methowvalleynews.com . A complete digital version of “Living With Alzheimer’s: The Reddington Project” will be available on the newspaper’s website, www. methowvalleynews.com.
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LIVING WITH ALZHEIMER’S DONORS Al & Anne Bridges Anita Tripp Anonymous (4) Betty Wagoner Bob & Cindy Granger Chuck Colleen Perry David Reddington Dennis O’Callaghan Diane Diane & Gord Dick Reddington Don Linnertz & Scott Wallace Dorothy Hudson Drew & Shawna Wachter Duane Biggar Duncan Bronson Eliot & Christine Scull Elmer Kuball P.E. Everett Green Hanne Thiede Hans Schatzmann Holly & Steve Mangano Jan & William Fohrell
THANK YOU, DONORS! Jean Wilson Jeannette Dupey Jessica & Joseph Klien John & Marcia Cochenour Joyce & Greg Studen Judith Davies Judy & Bill Leach Ken & Judy Dodd Ken Willis & Linda Speck Leahe Swayze Lew & Gayle Davis Margaret Reddington Marian Exall Mary Pat Bauman Mike & Beth Nowlan Molly & Steve Harrington Nora McCoy & Terry Larson Peter McGraw Rebecca Vaughan Richard Reddington Rob Brooks Robert Winchell Rolf Kolden & Peggy Porter Rufus Woods Sam & Marjorie
Sara Steele Sarah Maloy Stephen Mitchell Terrance & Julie Sullivan Theresa Casagram Welles & Pam BrethertonMorehouse Mary Pat Sigler Quisenberry Ann Henry Gloria Spiwak Victoria Walker Michael Sarratt Annie & Dwight Filer Linda & Wayne Mendro Lucinda McAllister Kenneth Westman Frankie Waller Mike McHugh Michael & Karen Mixon Cathy & Phil Davis Heather Hansen Darold & Sheila Brandenburg
This publication owes its existence to the many people whose generous contributions supported the production costs of Living With Alzheimer’s: The Reddington Project. We can’t express enough gratitude for their commitment to spreading Don’s message to a much broader audience. It’s an investment that will pay off in many ways for years to come. This list of donors is a bit inconsistent, but is as complete as we could make it before going to press. In some cases, all we have is a first or last name, and some donors chose to remain anonymous. If we missed anyone, we apologize but extend the same heartfelt appreciation for your support. Thank you. Life is good.
Don & Ginger Reddington
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