how i care for dementia: 'i don’t ever want to be looked at by john as a caregiver, i want him to see me as his partner'
9 minute read
cindy mccaffery, who cares for her husband john, offers this advice to other caregivers: "don't be embarrassed to talk about brain health, and to not hide the disease. keep growing, be honest and advocate for your loved one." getty
stay up to date on this topic
frontotemporal dementia—a rare type of brain disease that gained attention ever since bruce willis publicly shared his diagnosis—can strike people as young as 45 years old. and while there are several different forms, people affected by it typically experience symptoms such as changes in personality, behaviour, speech, and language. there is no cure for it and other than family history, other risk factors for the disease haven’t been identified.
currently, 597,000 canadians live with dementia, but by 2050, more than 1.7 million canadians are expected to be diagnosed with the disease, according to a report by the alzheimer society of canada. roughly 61 per cent of seniors who live with dementia remain in their homes and rely heavily on caregiver support — an arrangement that could help improve the quality of life for the patient, but one that often takes a physical, emotional and financial toll on the caregiver. research, which shows that people who provide support to a someone with dementia experience more stress than those who care for someone with a physical disability, refers to dementia caregivers as “invisible patients.”
cindy mccaffery provides support to her husband john who was diagnosed with frontotemporal dementia more than a decade ago, at age 48. over the years, she has come to understand the importance of active living, and its apparent role in slowing down brain disease inspired her to start youquest — a not-for-profit organization that provides a day program to people under the age of 65 who are affected by dementia. in an interview with healthing, mccaffery revealed her biggest challenges, the financial impact of caregiving, and how brain disease has changed her relationship with her husband.
this interview has been edited for length and clarity.
advertisement
how do you support john through dementia?
over the past 14 years, john’s memory has been good, he is still able to drive, he is in good physical health, so i don’t have to dress him, but what he needs help with is alleviating cognitive fatigue. his brain gets very tired if there’s a lot of conversation or after a long day in traffic running errands. lately, we’re seeing fatigue set in around dinnertime. john has always been active, and he used to go out in the evenings, and we’re finding now that his brain needs rest after a long day. to relax and unwind, he listens to music — that’s very important to him — and i try to make things easy at home, but sometimes, his cognitive fatigue lasts into the next day. usually, i try to stay out of his way and give him his space. i don’t pepper him with questions. i ask him what i can help him with, but i try to let him work it out on his own.
what are your biggest challenges with dementia?
since last november, john’s cognitive health has declined and it’s been very frustrating for him, especially because he is aware that his brain is failing him. he has talked about assisted death and maid, he has talked about moving to thailand to be cared for by the people there or to nepal, to be cared for by the monks. he has shared that he’s worried about my future. i’ve turned to alberta health services and one of their dementia care therapists has been instrumental in helping me navigate these challenges. i can call her whenever i need support and i can talk to her about what’s happening. she has been a great support to me — she’s been able to guide me through this journey — knowing what to expect is half the battle. i can be less anxious and more prepared to support john.
do you worry about the future?
i do because i saw how caregiving impacted my mother-in-law. she was so stressed out and died at 58, before her husband passed away at age 62 from young-onset alzheimer’s. i think that if i continue to take care of myself, if i get enough rest and eat well, and if i focus on one day at a time, i will be able to navigate what’s to come. i do fear financially because john stopped working 14 years ago, but i know that we will make it somehow.
advertisement
have you put things in place in anticipation of john’s brain disease progressing?
we have done all the legal things, such as writing up the power of attorney and personal directive, but i haven’t looked at care homes. i haven’t gone that far, we’re taking it one day at a time. the progression of young-onset dementia is different for everyone, and john has already surpassed the life expectancy for this type of brain disease.
why do you think that he’s been able to live with frontotemporal dementia for so long?
his doctor has attributed it to john starting out his journey as a very intelligent, curious person. he was always learning. also, his attitude has made a big difference because from the get-go, he has said that he’s determined to have a good day, every day. he says that so often that youquest has adopted that motto. john is also active and he’s outdoors every day. you can just tell when someone sits at home all day long — they get depressed, and i believe they tend to decline more quickly. youquest helps people get out of the house, be with friends and think about something else other than dementia.
where do you find support?
a neurologist told me about a support group that was formed specifically for caregivers to people living with young-onset dementia, so i turned to that group to learn more. sometimes, i’d learn too much, and it made me not want to go back. somewhere along the process, we met a dementia care therapist through alberta health services and working with her has been so helpful. people see john and they say that he looks great, he speaks so well, he drives, but they don’t really understand that brain disease is a progressive illness — that lack of awareness and disbelief has surprised me. usually, i try to keep it positive with our family and friends, and i save my gripes for the therapist.
advertisement
how did youquest start?
originally, i wanted a dementia village because i wanted people to go outside together and walk outdoors rather than be alone at home or in assisted living. we knew of a lady from our support group who had dementia and she banged on the doors and windows at her care home because she wanted to walk outside and wasn’t allowed to. they ended up taking her to the hospital where she was given drugs and was tied to a bed. her husband said, “if only they’d let her go out for a walk.” i thought to myself — there has to be a better way.
i knew that people needed a dementia village, but i didn’t have $100 million to get the idea up and running. with a colleague, i developed a plan for a day program so that caregivers can go to work and not worry about the health and safety of their loved one. we met with recreation therapists and used their model of support, and it took quite a while to get a team together and receive approval for charitable status. we finally got the pilot for 10 people — we used the wonderful facilities of a technical college, we tried it for 10 months, and eventually, we expanded the program to 12 participants right before covid hit. when it was safe to do so, we started doing small group walks outdoors for a few months and now, we have a day program that’s available to people with young-onset dementia two days a week (it runs from 9 a.m. to 4 p.m.). we’re also starting a half-day program for those who can’t handle a full day.
did you rely on investors to help get youquest off the ground?
not really. when we started, we received a donation from the centre for aging and brain health innovation (cabhi) because they liked our model, and we also had some financial support from other organizations such as rotary, lions and the alberta government. we have a good following, and we are supported by families affected by dementia, not by investors. the spouse of someone who recently passed away from young-onset dementia asked that people donate to youquest through their obituary, even though they didn’t attend youquest, so we ended up receiving some nice donations. that said, fundraising is ongoing as we have a staff of high-quality professionals and only charge our participants a nominal fee.
advertisement
what have you learned through your work?
i’ve learned that we get attached to families and when they transition away from our program to assisted living, it’s devastating. we almost need time to adjust to those changes, to grieve and mourn and maybe even visit the person at assisted care. we’ve also learned how important it is that caregivers have respite and while caregivers have always been included in our mission, we’re learning every day about their needs — that they need information, time, and support, and that their kids need help too. we hear of kids skipping school or engaging in destructive activities as a way to cope with their parent’s declining cognitive health. through youquest, we’ve learned that there are just so many people whose needs have to be managed when their loved one is diagnosed with dementia.
what has been most helpful to you as a caregiver?
working with a dementia therapist has been lifesaving. i know that people mean well, but what hasn’t been helpful is people who suggest that john should learn a new language, eat shark fin soup, or try vitamin e to heal his brain, or when they say that the government is going to spend $100 million to find out how to make people live healthy so that they don’t get dementia. many people have generously donated to youquest, but generally speaking, it’s been difficult to obtain enough funding. i wish the government would spend more money supporting people already affected by dementia and their families.
how has caregiving impacted you financially?
i work as a contractor and i’m paid hourly, so when i need to take john to medical appointments, i don’t get paid. we’ve taken a big financial hit when john stopped working more than a decade ago. but we find a way to make it work. instead of going to europe on vacation, we just go to the mountains.
advertisement
how is john’s condition managed?
unfortunately, there’s no cure for the disease. in the beginning, the neurologist tried ritalin because they thought it might be adhd, and there was one other medication they tried for alzheimer’s, but it made him irritable. at the moment, john is on low-dose medication to alleviate anxiety.
what advice do you have for other caregivers?
someone told me that john’s world is going to shrink but that i can’t shrink along with it. i have to keep working, expanding, learning, and living. sometimes, on a saturday, i don’t want to do anything, but i have to make time for family and friends or go out for a walk. i’d tell other caregivers to not be embarrassed to talk about brain health, and to not hide the disease. keep growing, be honest and advocate for your loved one, when needed.
how has john’s diagnosis impacted your marriage?
it’s definitely changed our relationship — i feel like it’s brought us closer. i was diagnosed with cancer in 2020, and john was quite upset about it and said he wouldn’t do well without me. we lean on each other more often than we used to, and in the last few months, as he realizes that he’s declining, he has become more attentive and tries to be helpful. but, i don’t ever want to be looked at by john as a caregiver or as his help, i want him to see me as his partner.
do you have a caregiving story? email info@healthing.ca.
maja begovic is a toronto-based writer.
thank you for your support. if you liked this story, please send it to a friend. every share counts.
share story
