how i care for alzheimer's disease: living for every moment is 'all we have'
8 minute read
joy kirchner and her husband, chris ruck have always loved adventure, and while their lives have changed, their passions haven’t. they have just decided to look at it from another angle.
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joy kirchner and her husband, chris ruck, started their life together 21 years ago in vancouver, british columbia. they bonded over their thirst for adventure, fell in love, and the rest was history.
joy spent her career in academics, while chris was an oceanographer. they spent their time outside their careers being active, sailing under the supervision of chris’ deep expertise, and travelling.
after some time out west, joy and chris moved to toronto so that joy could pursue her career further. they left their sailboat out west, and when covid-19 hit, they were at the mercy of others to take care of it while they were stuck in lockdown. when chris could finally travel back to check on the boat, he found it to be in a level of disrepair he wasn’t prepared for. that became the turning point between their old and new lives.
chris was incredibly fit. he swam his whole life, ate healthily, and did everything a person is told to do to stave off chronic disease. so, when he acted odd over the telephone, joy knew something wasn’t right.
when chris returned home, he couldn’t find his way out of the airport, which he had always been familiar with. joy later noticed a physical injury they couldn’t ignore.
“i took him home, and his shoulder was completely bruised,” said joy. “he said he thought he fell in the night, and i took him to the emergency room.”
it turned out chris’s collarbone was broken. joy assumed that her husband was acting out of sorts due to shock, but after a kind nurse offered joy coffee outside while chris was being treated, she was given a new theory to think on.
“the nurse explained she was a geriatric nurse, and that she felt he may have dementia,” joy said. she was shocked.
they ran other tests based on chris’s condition, and after a ct scan, it looked like he had a stroke while he was away. the stroke diagnosis wouldn’t officially come for another three months, though.
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when they finally confirmed it, joy assumed he would heal from the damage. he was physically fit and active his whole life, after all. but eventually, the theory of dementia began to take a more factual stance in their lives, with signs of the disease showing more and more over the following year, leading to the diagnosis of alzheimer’s.
“i asked him at one stage, do you think you have it?” said joy. chris believed he did, and he would be proven right shortly thereafter.
dealing with an alzheimer’s diagnosis
while chris was still able to enjoy life even with his disease progressing, for joy, finding positivity at the beginning of their journey with alzheimer’s wasn’t easy. after the initial blow of the diagnosis came, joy found herself on what she calls a “grief journey.” she cycled through emotions, such as devastation and sadness, trying to figure out how to show up for chris in the way that he needed her to.
“i began in devastation,” she said. “all i could see was my own terror and heartache,” she said. “with alzheimer’s, it impacts the whole family. it’s almost as if you both have it in a way if you’re the primary caretaker.”
joy also spent some time dealing with denial, especially when she was told that she was likely to see changes in her husband within the next five years.
“i didn’t quite believe it,” she said. “if anybody can slow this disease, it’s chris. he’s the poster child for how to do everything right.”
the changes started small, with his problem-solving skills taking the first hit. he’d try to fix something or do something he used to be highly capable of, and as he would say, “hit mush,” meaning cognitive much, and be unable to work through the steps.
chris also lost his confidence in performing tasks he was an expert at, such as sailing, a common side effect of alzheimer’s disease.
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“it was devastating when he realized he had to give up sailing, and we ended up selling his beloved boat, and that whole life we had, having adventures on the boat, was gone in a flash,” said joy. “that was a very significant loss.”
after a while, chris began experiencing issues with seeing contrast, and lost his ability to drive a car, another significant blow.
smaller things, such as forgetting how to use a locker at the pool or being able to put his clothes on the right way, continued to solidify the way chris was changing due to his diagnosis.
“these things just happened out of the blue, and it’s very painful as a caretaker because it’s a shock, and then you begin to get used to these shocks after a while,” said joy.
chris doesn’t always remember or recognize these changes in himself, or he’s come to accept them while still maintaining his positive and happy attitude toward his new life and all that comes with it.
eventually, joy retired from her career so she could be with chris full-time. the two go dancing every week and swim together.
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“there’s no predictability with it,” said joy. “you’re dealing with someone who’s actively unlearning everything they knew, and there’s no guidebook for how you manage a situation like that.”
while joy acknowledges the heartache that comes with an alzheimer’s diagnosis, she also counts herself “extraordinarily fortunate” that she’s on this journey with chris because of how he’s approached his disease.
“he’s having fun. he’s laughing every day. i have to catch up with him and make sure i’m that, too,” she said.
to allow herself to show up for chris, joy has made it a point to take advantage of avenues that are available to her, such as counselling and meditation. she notes that this diagnosis is a “different kind of grief, sometimes known as ambiguous loss or anticipatory grief, because the person is there, it’s just you’re witnessing every loss.”
because of that, doing what she has to so that she, too, can stay positive is a part of her being the best caretaker to her husband that she can be, so that his years are spent doing things they can be grateful for.
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finding connection in community
people have always been drawn to chris throughout his life. he always shows up with a welcoming energy that allows him to make connections and build communities with those around him.
now, being diagnosed with alzheimer’s, that unwavering trait continues to help him form friendships with others around him. he swims every morning, and those at the pool that joy and chris have gotten to know remember him and cheer him on, allowing him to continue feeling like he’s a part of something bigger.
“having that community is so critical to him and his happiness and his well-being,” joy said.
joy has even taken up swimming, an activity she never really enjoyed, because she sees how happy it makes him to be able to teach her moves like the flip roll. the teaching aspect also gives chris a sense of purpose and connectedness that he’s lost in other areas of his life because of his disease, and joy wouldn’t have it any other way.
“it thrills me to see how happy he is seeing me in the pool. it’s very motivating,” she said, “when he’s happy. i’m happy. i learned staying attuned to where and how he is happy and cultivating that at every progression is key to his success and helps us both live a quality life in the midst of this disease.”
joy has also built herself a community with other caretakers she’s met along the way, because as she notes, there isn’t much support available for people with alzheimer’s disease and their families.
she remembers early on going to her family physician to ask for guidance and a care plan for chris, only to be met with a response that it is the care partner that really must develop that. she notes that it’s important for people to understand that there isn’t much support for caregivers, and the success of someone’s care falling on one person’s shoulders can be a lot to bear.
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“i’m very aware that chris’s success is highly dependent on me and me figuring out what that success looks like,” she said.
after being told she must take charge on her own, she got involved with the alzheimer’s society of toronto to learn of their offerings and also to meet others going through similar situations. she even took a course from the society designed to help people navigate the medical system, because without it, people really do have to create a care plan without help.
“i have also met a lot of caretakers who have become really great friends, and i have learned a lot from all of them that included who i need to be in this journey, strategies and tips for challenges. i don’t know where i would have been without them,” she said.
changing gears
joy and chris have always loved adventure, and while their lives have changed, their passions haven’t. they have just decided to look at it from another angle.
“when it was clear that he had alzheimer’s, i asked him, ‘how do you want to spend these years when you’re full yourself and beyond?’” she said. “i was imagining he was going to identify a big trip of adventure… what he said to me was stunningly beautiful and perfect: ‘i want to live every day happy, joyful, and to live every moment fully.’”
when chris, who has always been bright, funny, and positive throughout his life, brought that same sunny disposition into his alzheimer’s diagnosis, she “had to meet him there” so she could spend time with him in the same mindset, continuing their adventures throughout life, even if those adventures had to change to accommodate their new reality.
eventually, joy retired from her career so she could be with chris full-time. the two go dancing every week and swim together. they approach alternative treatments with lots of laughter and a sense of adventure, such as earthing and cold water plunging, and at the beginning, they went on a transatlantic cruise to fulfill chris’s love for open water and travel. their goal was to find some happiness in every day, and so far, joy has done everything she can to keep up with that promise they made each other.
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“i ask him every day what will make us happy today no matter how big or small.”
“we’re living fully in every moment. we are living. this is it. it’s what you hear you should do, but for me, it took discipline and a practiced attitude change that could authentically bring me to live in the moment. but i had to do it. i had to really authentically, not just walk the talk or have moments of it. i had to get there because, as his disease has progressed, he is actually living in the moment. that’s what he has. that’s his memory. that’s the extent of his memory: our moments and it really is a beautiful life we created inspite of disease.”
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