how i care for dementia: 'who would have known he would leave me so early?'
9 minute read
"watching my husband die slowly, knowing that there’s nothing that can be done to slow down the disease," says shannon of taking care of her husband claude.
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shannon catellier’s husband claude was diagnosed with frontotemporal dementia several months before the pandemic. he was just 57.
by the time the first lockdown was in place, the couple was left to navigate the progressive and incurable disease on their own, without social workers or any in-person respite support. the pandemic brought on a range of challenges, and the weight of the emotional, physical and financial difficulties made caregiving a more complicated and isolating experience for shannon.
currently, more than 7.8 million canadians provide unpaid care to their loved ones, many of whom, like shannon, have had to take on a part-time job to help cover basic living expenses. in an interview with healthing, shannon shares the agonizing aspects of caregiving, including how dementia changed claude and stole their relationship, and the bureaucratic maze she was caught in while attempting to secure benefits for him.
this interview has been edited for length and clarity.
what led to your husband’s diagnosis?
my husband never had a good work record — he would often change jobs, and he was rarely in a job longer than a year. a few years before his diagnosis, he ended up working as a machinist, but two years later, they let him go and told him that he was a “menace.” he got a new job, where he lasted about eight months before he was let go again. he started working for his brother and around the same time, i noticed that he was having trouble recalling words in a conversation. i sat him down and told him that he needed to get checked out. he went to see his family doctor, they ordered blood tests and an mri, and he was told that he had been having micro-strokes. he was referred to a neurologist who formally diagnosed him with frontotemporal dementia. that was in december 2019.
right before the pandemic.
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that’s right. by march, any support that we would have had went away. at the time, we were living in a small town, 30 minutes outside of calgary, and there was no support available, not even social workers who could come to see us, let alone respite. for the first two years, i was pretty well on my own. but last summer, when we moved back to calgary, we had more support than we knew what to do with.
how did claude react to the diagnosis?
perhaps i was in denial, but i didn’t want to talk to him about it. i didn’t want him to feel the heavy emotional burden that comes from having to process something like that. he thought that he would still continue to work, so i don’t know how much he was aware of how the diagnosis would impact him. dementia did make him feel more vulnerable and oftentimes, he would follow me around the house. my husband had always been assertive, short-tempered and would never back down from a fight. unlike the expected progression of frontotemporal dementia, he became less assertive to the point where he couldn’t even verbally defend himself.
how difficult has it been supporting your husband through young onset dementia?
he would get up four or five times a night, and as his sole caregiver, i’d have to be by his side at all times. we had respite because cognitively, he declined so quickly — he couldn’t have a conversation because he lost his communication skills. claude could still speak, but not in the way that made sense. i would have to tell him to undress himself for bed, and while he could shower himself, he couldn’t start the water, so i had to do that too, and stand in the bathroom and tell him to wash his hair. i also had to help him shave and brush his teeth. he was completely dependent on me. i had a respite worker so that i could go to the shop to do my woodworking, and then i’d get a call that claude was outside the house, that he was pacing back and forth, having a panic attack. i was so lucky to have found youquest, a local organization that supports people diagnosed with young-onset dementia and their caregivers. before his diagnosis, claude was a climber, a hiker and he loved the outdoors. so, he loved having a group to go to, where he could socialize and be active.
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what has been the biggest challenge for you?
over the course of our marriage, i always had stable employment and made more money than claude did, and while we were living in saskatchewan, i told him that i wanted to retire and we agreed that he would take care of us.
we were living in a rural town outside of calgary when he was diagnosed. i wasn’t working and then covid hit and i still wasn’t able to work full-time because he required so much support. claude qualified for canada pension plan (cpp) disability, but there are no benefits to that, so we had no drug or dental coverage. but in alberta, there is assured income for the severely handicapped (aish), which provides full drug and dental coverage, so i filed an application for claude. unfortunately, while he qualified for several different disability payments, he didn’t qualify for aish. his application was denied based on the grounds that we made too much money.
when we moved back to calgary, it was suggested to me that i should reapply for aish, which has a waiting period of 209 days or nine months. when i called to inquire about the status of his application, i was told that it’s not a priority unless claude is on a waiting list for a facility. the challenge was that claude couldn’t get on a waiting list until he qualifies for aish. our social worker had to call on our behalf to explain this, and they finally got it set up so that alberta health would pay for the facility until he could get approved for aish. a few weeks ago, he was finally approved, but when i told them that i recently turned 65 and that i would soon be receiving old age security, they told me that claude won’t qualify for aish because again, according to them, between the two of us, we’re making too much money.
are you able to appeal that decision?
i’ve learned that in order to be looked at separately, claude and i need to either get legally separated or divorced because it’s the only way i can live independently. i’ve called a legal aid lawyer and they’re looking into it for me. i don’t want claude’s income to impact my subsidies, and conversely, if my income wasn’t included in his, he would qualify for more. at my age, i shouldn’t have to deal with this.
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who have you turned to for support?
the pandemic and living outside of calgary limited claude’s family’s ability to be present. because of this, his family was not able to see the decline and didn’t know how much claude was changing. one of his sisters who has a phd in biostatistics was concerned about claude and me and she has been extremely supportive.
a year ago, we had a zoom appointment with claude’s neurologist and i asked her to sit in on that. the neurologist showed us the latest ct scan and there was pretty much no activity in frontotemporal area of his brain. his sister drafted an email and shared the information with the entire family — it was a shock when saw it for themselves. it was light bulb moment for them, and they became more socially involved. after a time, although they remained financially supportive, being socially present became difficult for them and the social support slowly faded.
was that because claude transitioned to a facility?
since claude got placed, my sister-in-law is the only person who has come to visit me. no one else has offered to come over or invited me for dinner. one of the ladies in our group whose mother passed away recently shared that she had a friend come over with a cooler filled with prepared meals. a week and a half after claude got placed, i couldn’t stop crying. i was grieving and yet, no one brought me a cooler full of food. i don’t blame anyone, but it’s been difficult for me. for the first time in 40 years, i am alone.
what do you hope your life looks like in the future?
i’m not used to prioritizing myself. i do woodworking and i sell some of what i make. i have a shop that i go to and i have orders on-the-go, but i can’t think too far ahead. i’m really limited because of claude. he’s in full-time care, but he’s not gone. that said, i don’t think he’ll see his next birthday. when claude is no longer with us, i am going to sell everything i own, buy myself a motorhome and go. i’m also looking at joining a 55+ club at our community centre because i love playing pool.
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how do you process what is happening with claude, and your life?
when i tell people that he has frontotemporal dementia, they ask me, ‘does he know who you are?’ and i tell them that claude knows who i am, but i don’t know who he is anymore. the husband i had is gone.
and i don’t know that i’ve come to terms with it. i hate seeing him at the facility. i’ve tried to tell him things that are going on, but he doesn’t understand. in the early days of his illness, i spent all my time in bed. i didn’t want to deal with it. i tried to include him in everything i did, but it turned out to be more work than was beneficial. if we went together to clean up the yard, instead of putting everything in containers or bags, he would take everything out.
he’s my husband, it’s not like i could have just packed up and left, although i’ve heard of people doing that. to be honest, i’ve thought about it, but i didn’t have it in me to do it.
how has your relationship with claude changed since his diagnosis?
when claude and i met and got married, his life revolved around me. i don’t know who he is anymore. i can’t talk or laugh with him, and whatever kept us together is long gone. i’m just alone and that hurts the most.
what’s your advice to other caregivers?
get as much support as you can. at my age, people don’t like to do that, but it’s important to ask for help. since claude was diagnosed, i’ve lost a lot of friends. i understand because they don’t know how to deal with him, but he does have some friends who still visit him at the facility. my daughter lives four hours away and i don’t see her very much, and my son has some medical issues. i don’t know that i have anyone to call who can leave everything to be there for me. i’ve realized that i have to get out there and make new friends.
what has been the most difficult part of being a caregiver?
watching my husband die slowly, knowing that there’s nothing that can be done to slow down the disease or change the outcome. right from the beginning, the worse part was the isolation, which was only exasperated by covid. it was difficult to get out of that.
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when we got married, i thought that i’d never have to be alone again. who knew that he was going to leave me so early?
maja begovic is a toronto-based writer.
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