how i care for alzheimer’s disease: 'give yourself some grace and … find moments of joy because they’re there'
9 minute read
kim and her siblings work together toward an aligned goal: take care of their mother in a way that fosters the best possible quality of life.
kim babcock
stay up to date on this topic
before kim babcock’s mother, ruth, “affectionally known as ruth, mom, gran,” was diagnosed with alzheimer’s disease, she spent all of her time creating a life worth living. she travelled the world with her late husband of 50 years, kim’s father. she also helped people recover from strokes and other ailments through her physiotherapy work and indulged her creativity in the arts of sculpture and music.
ruth loved people and had an interest in everything, walking every day and getting involved in community pastimes, such as book and bridge clubs. she filled her days with independent ventures and social connections, investing her time into giving to others and showing that the beauty in simplicity is worth stopping for.
“she really invested time in getting to know people. i have 17 cousins. she knew all of them, all of their lives, all of their spouses, all of their kids,” said kim, when speaking about who her mother is without the symptoms of alzheimer’s. “she’s just interested in everything … you go for a walk with her now … and you need to stop and look at every single flower, which is quite beautiful.”
kim and her three siblings began seeing the signs of dementia in ruth shortly after their father died in 2014 when they’d notice her mixing up her words or little notes scattered across her home in vancouver when they’d go for a visit. it wasn’t until their mother received a proper diagnosis that kim and her siblings began to piece together the signs that were there even before their father’s passing.
“we all strongly believe that she was showing signs even prior to my dad dying,” kim said. “and that the two of them were sort of working through that.”
the shock and grief of losing her husband took a heavy toll on ruth, and even though she was “staunchly independent,” the signs of alzheimer’s disease only became more evident to her children—even if she, herself, continued to deny that anything was wrong.
advertisement
“(she) tried to hide those signs. she’s fine, didn’t want to talk about it. she was always focused on the positive things and dismissed challenges. so, she was trying to hide a lot of the signs,” said kim.
two months after the covid-19 pandemic began, it became increasingly clear that ruth, no matter how independent, needed help. so, kim and her husband left their jobs, packed up their car and made the cross-country trip to be there for their mother/mother-in-law. shortly after they arrived, a cardiac event sent ruth to the hospital, inadvertently marking a deep drop off in her cognitive abilities and the beginning of kim’s life as a full-time caregiver.
“i went from daughter to caregiver pretty quickly,” said kim. “it’s funny when you ask me the question to tell you about myself. it’s been such an intense part of my life.”
changing course to care for a mother with alzheimer’s
after the cardiac event and the worsening of ruth’s alzheimer’s symptoms, kim and her family decided that it was time for a change. they brought ruth to toronto, where she could be closer to all of her children, and they developed a system to work together to ensure that their mother would have all she needed to stay safe and supported while living with a dementia-related disease.
kim and her siblings created and followed a set of guidelines centred around open communication and conduct so that they could work together toward an aligned goal: take care of their mother in a way that fosters the best possible quality of life.
“we have 100 per cent alignment when it comes to caring for our mom, and we meet every week on a video call,” said kim. “we talk through it and work through everything. we make decisions, all three of us together.”
prior to her mom’s diagnosis, kim worked in the corporate world, with a busy travel schedule and was focused on her career success.
advertisement
when her mother became ill enough to require 24-hour care, kim’s priorities shifted, and she left the corporate world to put on a new hat—the one she still wears today—as a caregiver for her mother.
the emotional toll of caring for a loved one with alzheimer’s
while kim’s choice to take care of her mother didn’t require much of a second thought, the emotional toll is heavy, even in the best of circumstances.
“i have moments of being so deeply sad and missing her and also just not being able to comprehend, even though you can read all you want about the disease, but when you’re looking at someone that used to be the person you went to for help and support and had a really rich relationship with, and that’s gone, it’s just difficult to reconcile all of the emotions,” she said.
to deal with the ups and downs, kim has enlisted self-care strategies to ensure that when she shows up for her mother, she does so with a full cup.
“i have an absolutely amazing somatic therapist i work with working on understanding my nervous system and finding the right supports,” she said. “because certainly when my nervous system is a little bit more regulated and balanced, she feels that, and things are better.”
kim also uses music and dance to bring positivity into the challenges she sometimes faces while caring for her mother—not only because it helps her feel better but because it helps ruth feel better, too.
along with therapeutic approaches and music and dance, kim also allows herself to take breaks and laugh whenever she can because of how important it is to “find some sort of humour” in the more challenging moments.
addressing barriers by creating a care team
living with and caring for someone with alzheimer’s is challenging for all parties involved, including ruth and kim and their family. when kim turned to the government system for help, much remained to be desired regarding how they showed up for her and her mother.
advertisement
“the government-supported home care system is absolutely broken,” she said. “(it) has not been able to provide us with any support, and they have clearly stated that they don’t have any psws that are trained to work with any complexity of dementia.”
“i’ve had nothing but horrific experiences with the home and community support services,” she continued. “when they tell me that they don’t have people trained to support people with dementia, that’s really scary.”
kim has had to escalate complaints to the healthcare system to have her voice heard, and she is grateful to have the “wherewithal to push against and challenge the system” because a lot of other people in the same situation cannot, through no fault of their own.
“most people don’t (push against the system), and that’s not criticisms of them. family caregivers are filling the gaps that the home care systems aren’t able to provide,” she said. “i facilitate support groups, peer support groups for family caregivers … everybody is facing those challenges, and it’s not on the individual. it’s the system that is failing people, and that’s where family caregivers are having to pick up the pieces.”
with no government support to help establish a proper care team for ruth, kim and her family were forced to take alternative measures. luckily, they are financially able to provide private care for their mother, who now needs 24/7 support in her home.
kim and her family privately hired workers to help ruth for two reasons: to support their mother in the way she needs and deserves and to ensure that the healthcare workers who provide their mother with care are treated well because of how close caregivers become to the families they work for.
“they become a part of your family, and you want to treat them well, and that’s what i can control is a really great working environment for the people that work with us. we affectionately call our entire team team ruth, which includes all of us,” she said.
advertisement
kim talks about the systems in place and how they have left her mother and her family to figure things out on their own, with the exception of the alzheimer’s society of toronto, which she said brought only “absolutely amazing experiences.”
kim learned all she could about the disease and tips to help her provide adequate care for her mother through her own online research, joining other support groups, and sifting through the many, many posts now available on various social media channels.
creating a sense of normalcy where possible
to ensure that ruth’s quality of life is as good as possible, kim and her siblings and their care team have made it a point to keep up with certain activities as best they can. one such activity, getting a haircut, has proved to be a great addition to her routine, allowing ruth to retain as much of herself as possible while living with alzheimer’s disease.
“you find them (supports) in the strangest of places. we’ve found this amazing hairdresser that greets my mom and treats her absolutely wonderfully, and he just knows how to engage with her as her language is diminishing,” she said.
it isn’t just keeping up with personal grooming that’s important, but giving ruth access to the things she loves, even if the way she can love them is different now that she has a dementia-related disease.
kim also enlisted the help of a recreational therapist for her care team, who visits ruth twice a week with art supplies, giving her the opportunity to continue indulging her creative side with sculpting and colouring.
another great addition to her toolkit is a large, plush bernese mountain dog, which ruth holds close to her heart when she needs the love of a furry companion.
“that (dog) has brought her so much comfort and joy. when she’s in the hospital, she will just sit and hold this dog and just loves it,” kim said. “it was a hard thing to introduce because it’s so strange. there’s almost judgement of the social norms that you just have to throw out. it’s weird, but it’s not weird for her.”
advertisement
giving yourself grace and finding joy in the little things
learning that a loved one, especially someone as vibrant as ruth, has alzheimer’s disease is one of the hardest things a person will go through. because of that, the weight of the emotions that kim experienced was a heavy load to carry— and it’s not always easy to keep negative emotions at bay.
“early on, i had a lot of anger and resentments,” kim said. “the hard emotions are softer now. they’re still present at times, but they’ve softened.”
it’s through finding the right supports, a critical aspect of being a caregiver, according to kim, that caring for ruth has become much more manageable. she also had to learn that mistakes happen and that the whirlwind of emotions you go through when coping with and caring for a loved one in this capacity is nothing short of simply being a human being.
“you’re going to make mistakes. you’re going to do the wrong thing, and you might get angry, or you might cry at the wrong times. you might lose your patience. you might drop the ball on something,” she said. “give yourself some grace and … find moments of joy because they’re there, and helping both you and the person you’re caring for find those moments of joy together.”
kim also appreciates her mother as she was and as who she is now. and this, to her, is how she can learn to see life a little differently, even in the face of exceptional challenges.
“her brain is just so focused on the small little bits of beauty of stopping to look at every single flower on the walk. i need to do that now, which is pretty incredible.”
share story
