caring for alzheimer’s disease: finding ‘glimmers of good’ through the difficult moments
13 minute read
shirley and joe newton, seen here at mt. vesuvius, have traded trips to italy for dinners at their favourite italian restaurant because of alzheimer's disease.
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when joe and shirley met through a shared co-worker, their fate as husband and wife was sealed. it was a “fast courtship,” according to shirley, who notes that it was joe’s sharp wit, sense of humour, and natural way of treating women as equals that made her fall for him quickly.
“there was no game-playing,” she said, with joe adding that between his three older sisters and his mother, he was “taught well.”
“we struck it off right away, and our personalities mesh completely so well,” said shirley.
according to joe, they work so well together because of their glass half full glass half empty attitudes.
“between the two of us, we have a full glass,” said joe.
the two, who have been married for 50 years, have lived quite a life together. they flourished in their respective careers working in the public sector, travelled together, supported and enjoyed each other’s hobbies, and even raised show dogs together, irish and gordon setters.
they did it all together, by each other’s sides.
calling themselves the dynamic duo, their love and complementary personalities allowed them to live their lives to the fullest, while also getting through the more tough things together, like a stroke joe had at only 51 years old and currently persevering through his recent diagnosis of alzheimer’s disease.
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learning to live in a new normal after a stroke
in may of 1999, joe had a major stroke when he and shirley were in the town of canandaigua, new york, celebrating their anniversary. his heart stopped, and when he was transferred to sunnybrook hospital, it was “the beginning of a new life” for them.
“joe had to retire immediately at 51 years old,” said shirley. his swallowing was affected, and she was told he would likely need a feeding tube, a devastating detail because joe was quite the chef, so much so that shirley stayed out of the kitchen entirely unless it was for baking purposes.
she notes that he couldn’t drive, had to undergo outpatient therapy that involved physiotherapy, occupational therapy, speech therapy and medications.
over time, all the avenues they took to help joe get back to himself worked. his cognitive abilities returned; he was driving and cooking again, and he was even able to continue handling financial responsibilities, like doing their tax returns each year.
“we were able to enjoy this new normal life, including several trips to italy,” said shirley.
after his stroke, his neurology specialist kept a close eye on joe because they were “quite interested in the fact that he’d survived” and was doing so well after having a major stroke, and he continued to have different types of tests each year since 1999.
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“i have one of the well-respected doctors in researching strokes and the cognitive aspects of stroke,” said joe. “she has a good idea of my progression or redirection of my cognitive abilities over time.”
the first signs of alzheimer’s disease
while joe had improved from the stroke, shirley began to notice some concerning signs of confusion that prompted them to see their family doctor, who ran routine tests for diabetes, dehydration, and other potential causes.
“i was reporting difficulties in a number of areas,” said shirley. “reconciling financial things, like visa statements, preparing income tax, memory confusion on where items are stored in cupboards and closets, is an acrylic glass plastic or glass, sequencing difficulty, understanding following options that might be presented to him like what do you want to watch on tv or mapping out a shopping trip to several stores, what’s the best route to take.”
being unable to map out a route was significantly alarming because joe, who worked as an urban planner and studied geography and urban studies at university, was exceptional at knowing exactly where he was going.
after working with their family doctor, they believed it was time to bring back in their neurologist, who had worked with joe since the stroke, to find out what was really going on.
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“it was her (his doctor) who first diagnosed that i might have had alzheimer’s and possibly parkinson’s,” he said.
before the diagnosis of alzheimer’s, they were both concerned that joe had another stroke. but when it was confirmed from a pet scan that there were amyloid markers in his brain, that’s when they got the news.
“the good news is that it wasn’t a stroke,” said shirley. “the bad news is that it’s alzheimer’s.”
joe’s general positivity remained after the stroke, but with the diagnosis of alzheimer’s, it wasn’t as easy to continue seeing his cup as half full.
“i was less positive about the long-term implications about my recovery because previously with my stroke, it was an event. it had occurred and had ended,” he said. “with alzheimer’s, it is a disease in which i am still participating in. so, you don’t know what the end result will be.”
he notes that even with the future being uncertain in terms of progressive decline, and the knowledge that his disease will eventually “consume” him, he made the decision to acknowledge the reality without dwelling on it.”
joe notes that he has to pay more attention to things that used to be second nature for him, like constantly checking if he’s cooking a meal in the right order. according to him, he has a “bad habit of preparing one thing and not necessarily remembering that before that i have to bring the stove up to temperature,” but shirley sees it differently.
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“it’s not a bad habit. he said it was a bad habit, but it’s not the question of a bad habit. it’s what alzheimer’s has done.”
for shirley, who was now thrust back into the role of caregiver, the experience is a little different.
“what happened to me, basically, i can say, i have a constant tsunami of emotions since then,” she said. “alzheimer’s is a progressive, regressive condition. you have no idea what the next confusion or regression will be, or when it will happen, so i can’t plan for it. with joe’s stroke, there was still hope.”
she notes that being a caregiver after joe had his stroke was a little easier to handle as well, because they were both 25 years younger, and she was in good health, and she had more support. but now, it’s as if the future she had planned after all the hard work they had both put into helping him recover has completely changed yet again.
“we were planning, okay, now’s the time. we can do the travel we wanted to do and all of that,” she said about having to pivot their lives to deal with care for alzheimer’s disease. “there’s a lot of anger and sorrow because it’s not fair to either of us, and i know life isn’t fair. but it doesn’t really make coping easier.”
caregiving for alzheimer’s is “extremely challenging”
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while joe is still in the early stages of alzheimer’s, adjusting to his new needs continues to be a learning process for shirley. he’s still capable in many ways, but she notes that “life is hectic. it’s overwhelming.”
“you become the coordinator of everything from transportation to scheduling all appointments, social activities, learning to cook, horror of horrors,” she says of her culinary skills, stating through laughter that she’s made joe dinner once and they both agreed never again.
she has to deal with any issues that arise in all areas, from finances to technology, and they have both had to give up any ounce of spontaneity they once had. he also moves more slowly than he used to, which makes getting ready a more taxing activity in and of itself.
“our world, therefore, has become very small,” she said.
they have to attend many medical appointments, some of which are for her as well, she notes, as she’s had to neglect her health for two years to be at joe’s side while they figured things out for him.
“i can’t just arrange to have him transported to appointments and back by uber or something because he gets too anxious or might forget how to get from an appointment location back out onto the street,” she said.
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for their recent wedding anniversary, she also had to reframe the activity from a trip to italy to a trip to their favourite italian restaurant down the street from their home. but the one thing that continues to be a battle for shirley is the “never-ending mountain” that is their to-do list.
“it never leaves. you get one little thing checked off or part of one, and then you go back to square one,” she said. “much of my time is spent sitting in doctors’ offices, researching and making notes in front of a computer screen, waiting on the telephone for businesses and organizations to finally call you. all of those, and in between, making sure joe remembers to have lunch and making sure there’s enough groceries.”
she’s also had to put up signs to help joe to remember to do certain things, like close the fridge or use the right toothbrush. he’s also sleeping more, but the structure shirley has created makes the environment more comfortable for him.
even medications can be a source of stress, because keeping track of things isn’t easy for joe.
“i have had difficulty keeping track of that and so consequently, what we had ended up having the pharmacy do was put the medications in blister packs so that you just have the one blister pack to remember and you can take your medication,” he said.
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shirley also notes that many of the things joe loved, such as cooking, have now become complicated tasks, resulting in a significant loss of independence for joe. he was robbed of his initiative to do the things he enjoys, as well as empathy and reasoning.
at the same time, her energy has been drained.
on top of having to rely on ready-made meals or takeout for nutritious meals, hiring a cleaning lady, and getting help with other tasks around the house to keep things running, shirley is also unable to “sleep all night because of the stress of dealing with things.”
getting through the difficult moments through glimmers of hope
there are no bad, difficult days in alzheimer’s, according to shirley. it’s more akin to having difficult moments throughout each day. to deal with the up-and-down nature of the disease, shirley has given herself a way to get away from it, even if only for a few moments at a time.
she’ll call a loved one, or even step away physically for a moment to be outside, and she takes solace in the fact that, even if joe forgets where he put something, she can be grateful that he remembers what that something is and what its function is.
“those are things he can still do, so that is some of the silver lining, and it’s also focusing on what he can still do and what he can still remember because, as joe said, he is in the early stages,” she said.
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another big thing she holds onto is when joe does something that he would do before his alzheimer’s diagnosis, something she refers to as pre-alzheimer’s joe.
“on christmas morning, he set the table. he put a plant on the table to make it pretty, and he said, ‘i’m making you breakfast.’ that would have been pre-alzheimer’s joe,” she said. “when that happens, you sort of rejoice in the moment.”
for shirley, dealing with life as a caregiver and all the challenges that come with it takes a lot of resilience.
“there are so many balls as a caregiver that you’re juggling,” she said. “you can’t focus on all of them at once. there are only 24 hours in a day … it took me quite a while, and i know that the caregiver has to look after the caregiver.”
but it’s a real challenge when every call for joe has to go through shirley. but she’s come to realize that “the world is not going to end if i turn that phone off.”
however, she also acknowledges that the mountain will still be there when the phone turns back on, but those few minutes of self-time are important.
she continued, “don’t feel guilty that you haven’t done enough for your spouse or for yourself or your family or your friends. you need help, too. don’t feel guilty that you can’t always communicate with your partner or have patience or understanding with your spouse’s change and personality. i’m human, and i need my own kindness in order to navigate alzheimer’s.”
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joe’s advice for dealing with the difficult moments of alzheimer’s is simple.
“don’t get too upset about it. what you can’t do or aren’t doing,” he said. “some things you can’t change. some things you can try to know the difference or get some help.”
dealing with the worst through love, humour, and togetherness
the worst thing about living with alzheimer’s, to joe, is that the disease is progressive. there’s no chance of getting better. he tries to stay positive about his life and the future and hold onto that part of himself, but it’s hard not to let it slowly decline. he says he remains “in denial” to shield himself from the worst-case scenario of the progression robbing him of everything he is.
“it’s one thing if you have a disease and it’s over, then you can recover. if you have a disease and it’s not going away and it can continue until you die, that’s somewhat different, somewhat different expectations,” he said. “it’s not a depression. it’s just a reality. it’s a recognition of your limitations and regression and accepting it.”
for shirley, wondering how she will stay strong and patient as the disease continues to throw inevitable curveballs is one of the hardest things about joe’s diagnosis, and all that comes with caregiving.
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“you disappear. your own hopes, your own dreams, your life as you know it. so, instead of ‘where’s waldo?’ it’s where’s me? where is me, other than a caregiver?”
when things get really heavy, shirley reminds herself of who she is and what she and joe have already gotten through together to help her get through.
“i know i’m strong because i got through joe’s stroke with him, i come from a long line of strong women who’ve gone through stuff over the years,” she said. “but i am older now, and i know that i’m going to find shirley again.”
shirley also grapples with being unable to change joe’s diagnosis, and worries about the future, what will happen, and whether or not he and his passions will be humanely cared for for the rest of his life if she’s no longer able to do it.
“he deserves to be safe and happy. he didn’t cause his alzheimer’s,” she said.
because of gaps and wait times in the healthcare system, shirley and joe are proactive about the future, putting joe’s name on long-term care home lists now, ones they’ve even visited. both joe and shirley are planners, and they want to get out ahead of things because of the regressive nature of alzheimer’s.
“even just phoning them, some of them, to make an appointment to go visit was very emotionally difficult and i worry about having to face the day when and if i have to make the decision that joe can no longer be here with me in the apartment he loves, because that’s our goal at this point, to stay here as long as we can together.”
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she continued, “as i said to him, i’m not going anywhere. i’m in it for the long haul, whether you like it, and no matter how hard it is, that’s what’s happening.”
even though things have changed in many ways, they are continuously learning how to communicate differently or have disagreements differently because joe’s easygoing nature has slowly been stolen by alzheimer’s.
“it’s rapidly changing, and it’s difficult for both of us to handle and upsetting for both of us to handle because neither of us is causing it. it’s a thing called the big a, that i call it,” she said.
both shirley and joe have tapped into their humour to get through this difficult time, sharing stories of joe’s adventures travelling before they met with smiles on their faces or joking about alzheimer’s itself when talking about a speech he had to make that wasn’t long because “i can’t remember anything longer.”
“i’ll kind of mix a little bit of humour with some pathos,” said joe through a smile. “and they’re really quite enjoyable.”
“you can tell what has gotten us through the stroke, what has gotten us through our marriage for 50 years, what is helping us get through the alzheimer’s is humour,” said shirley.
while the new normal for shirley and joe remains a significant challenge, they live life as well as possible for as long as possible because time is “slipping away.”
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“despite that, what is life like now? we still enjoy each other’s company. we discuss the news. we watch the blue jays and enjoy that. we’ve not lost our ability to laugh at ourselves or the absurd situations, and we still get out,” she said, later continuing, “alzheimer’s is … a detour in your life. it’s a detour that constantly changes, and it never ends, and you never signed up for it. the trick is to recognize that along that bumpy detour, there may just be some glimmers of good, however brief they may be.”
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