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how i care for dementia: 'no one can tell you what's going to happen' with corticobasal syndrome

esther schreiber’s husband eddie was diagnosed with a rare form of dementia at age 61. one piece of advice she has for other caregivers is to understand that there are limits to what you can do.

by maja begovic

published apr 18, 2023

last updated feb 01, 2024

9 minute read

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9 minute read

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how i care for dementia: corticobasal syndrome

"you literally have to fight to decide if, as a caregiver, you’re going to become victim to the disease," esther schreiber said, sharing her experience of caring for her husband with a rare form of dementia. getty images

currently, more than 50 per cent of women in canada are caregivers to children or care-dependent adults, and because they provide the majority of unpaid care, women are more likely to experience caregiver burnout, with fatigue and anxiety being the most reported symptoms. the pandemic made caregiving even more difficult and many struggled to cope. esther schreiber’s husband eddie was diagnosed with corticobasal syndrome, a rare form of dementia at age 61. the disease not only took him away from his engineering career, it also changed his personality — according to schreiber, her husband became anxious, socially reclusive and aggressive. and while she supported him through many years of the disease, the pandemic brought on new challenges that were far beyond what she could handle. in an interview with healthing, schreiber candidly shares her experience, including how she navigates a disease that constantly catches caregivers off guard, and why advocating for a loved one — with utmost respect — is the best way to get support in the health system.

this interview has been edited for length and clarity.

what led to your husband’s diagnosis?

in hindsight, there were signs long before it ever occurred to me that there may be an issue. for example, eddie would leave cupboard doors open or forget to turn off the lights. when you see those things, you wouldn’t start questioning whether somebody needs to be tested for a neurological disorder because they’re doing things of inconsequential nature. but, what led us to start investigating is when my husband, who went out to run an errand for his mother one day, returned home 20 minutes later and said, “i can’t find the bank.” that was a red flag as we’ve lived in the same neighbourhood for about five decades.

within a few weeks of that experience, there was an incident where my husband backed his car into the wall of the garage, which took out the back end of his car. eddie was fastidious, meticulous, detailed-oriented — an engineer by career — so it was highly unusual that this had happened. immediately, after those two experiences, we started with the medical investigation process. the more acute symptoms started before age 60, but in reality, it probably started decades earlier before it ever impacted his executive functions.

did it take a long time to get the diagnosis?

it took nine months. i had to describe his symptoms to the gp and the nervousness that he was feeling. he was otherwise in perfect in health, and it was probably difficult for the gp to wrap his head around it. at that point, eddie was just 61, and no one thought that it could be dementia. his employer laid him off, citing restructuring, but when i look back on it, he couldn’t execute his responsibilities effectively, the way he used to. i questioned whether there was a brain tumour to blame, but the scans came back clear. we were then introduced to the memory clinic at the baycrest centre and at the time, it was a difficult process. they had strict guidelines and didn’t assess anyone under the age of 65 — it took a lot of advocacy work on my part to connect with a doctor. i knew at the time that the gp referred him to baycrest and camh. i have yet to receive a call from camh for that referral, and that was more than six years ago.

eventually, baycrest came through, which is where he was tested and officially diagnosed. eddie had an excellent clinician who left no stone unturned, and it took about six months to rule out all other possible conditions. there wasn’t a discipline that wasn’t involved until we learned that he had a relatively rare form of dementia — corticobasal syndrome. my understanding is that this particular form of dementia is not easy to diagnose as 50 per cent of cases present with parkinsonian type of symptoms, and the rest present with cognitive decline.

what sort of support did you provide to your husband?

he was a great cook and he couldn’t do that any longer, so all meals had to prepared and plated. if i was going out anywhere, i needed to leave food plated with written instructions on how and when to warm it up. i had to drive him everywhere, and normal social behaviours became much more difficult, and as his disease progressed, completely impossible. this heightened his anxiety because on some level, he was aware that things have changed. he became quite socially withdrawn, and as a caregiver, it was almost impossible to discern how much of his behaviour was related to the disease and how much of it was related to human nature and personality.

how has dementia impacted his personality?

there were points where he would scream, be highly anxious and aggressive. if there was anything that i would swear to be true is that i couldn’t ever imagine my husband being aggressive — it was diametrically opposite to his character. we tried everything in terms of different strategies, we engaged every possible means to alleviate his anxiety (the aggression would follow the anxiety and we couldn’t ever nail the triggers), and we tried all kinds of therapies to help divert his attention (be that music or different types of programs). pre-covid, he attended one of baycrest’s day programs, but the pandemic created more challenges for us because personal care became impossible, and private care also wasn’t available. in terms of dealing with the anxiety, we tried virtually every non-medicinal therapy imaginable and not a single one worked. eventually, we tried medications that were not specifically formulated for dementia patients, and it was constant experimentation and change of medication. every three or four weeks, something would work for a short period of time and we’d go back to the drawing board. this has been our reality over the past five years.

did anyone prepare you for the role of a caregiver to a dementia patient?

i asked the questions, of course, but one of the most daunting things about this disease is that no one can tell you what’s going to happen and when. on a macro level, i knew the different stages of the disease, but everyone is different, and all you can do is deal with symptoms as they arise. for example, my husband recently had difficulties swallowing and he had to be rushed to the hospital, and yet, i can’t tell you whether that incident is related to disease progression, and neither can the professionals. only time will tell. that’s what makes dementia so challenging — in so many other major illnesses that are traumatic, tragic and debilitating, there is some wide lane of expectations, but less so in dementia. i joined a support group that is offered through baycrest, and there are nine spousal caregivers in the group, and each one can tell you a different story, and yet we’re all walking the same path.

how do you cope when you’re constantly being caught off guard?

in the beginning, you’re completely daunted that no one can provide you with firm answers, and you’re terrified because you’re not a trained caregiver. suddenly, you’re doing everything twice — it’s very similar to looking after a baby, but the baby eventually starts to smile and you see the recognition in their eyes, and you’re encouraged by those signs and it gives you strength to keep going. dementia goes the other way, where you’re literally losing the person you know one tiny bit at a time. caregiver burnout can come fast, and sometimes, faster than patient demise, and it takes a really long time to get to a place where you say to yourself, ‘this is not going to be a perfect journey for any of us, and i’m going to have to accept that not being perfect is ok.’

were you initially hesitant to seek help from the support group?

by nature, if there is a problem, i try my best to fix it, and i will employ resources i need. i am not a group sharer, but i was approached by baycrest and that was right before the first covid lockdown, and after our second session, the pandemic started. it was a different story because i wasn’t able to see my real support network — we were told to hide and we all went into our caves, and the only thing that was left was my tablet and zoom. as much as people want to be sympathetic to a caregiver who is supporting a patient with dementia, you don’t ever fully understand it unless you’re in it.

what has been your biggest challenge?

you literally have to fight to decide if, as a caregiver, you’re going to become victim to the disease. in my experience, i had to make a conscious decision, and it’s a terrible decision for any human being to make — i had to decide whether this disease is going to claim two people or one? i felt guilt all the way through because i spent a lifetime with my husband — we’ve been together since we were very young, and we did everything as a unit. i was seventeen when we met and eddie was 21, and it never occurs to you that life is going to be any different and you believe that no matter what happens, you’re just going to support each other. i can still recall a doctor who told me that eventually, i will need to investigate long-term facilities and settle on one i felt comfortable with. i remember feeling horrified, and he was just trying to help in the kindest way, but i was stoic and would hear none of it.

almost two years ago, my husband reached a stage where he needed constant care — he was starting to fall, and everything had to be completely supervised all day and night. i was reaching burnout stage because i was being woken up several times a night, and although we had psw support, it was a rotating team of caregivers, and scheduling became a nightmare to navigate. when i took my husband to receive his second shot of the covid vaccine, that entire outing was colossal nightmare. he spent the entire time screaming, aggravated and anxious. when we got home, the caregiver who was supposed to support us that afternoon called in sick and i knew that i wasn’t able to carry on and that i needed to think about a long-term facility. i took my husband to the hospital, he was transferred the next day to one of their care centres, where he stayed for about two months, after which, he was accepted into baycrest.

what’s your advice to other caregivers who are supporting a loved one through dementia?

understand that there’s a limitation to how much you can do. i was lucky that my children were supportive of my decisions along the way — i gave them a voice and told them upfront that i’m not going to follow any contrary thoughts, but that i would give it due consideration. also, i would advise other caregivers to lower the bar of expectations in terms of what they can accomplish because that reality comes faster than they think. baycrest has been particularly helpful to our family, but i would also encourage caregivers from across the country to connect with the alzheimer society, which has support groups, information and national reach.

looking after yourself as a caregiver is very important, and it’s a hard thing for all spousal caregivers to do because it changes your day-to-day world. but you don’t have to practice self-care for hours on end, you can carve out 30 minutes a day. i would also urge other caregivers to engage with those who are walking the same road, especially if they are ahead in disease progression, and if you want care in our medical health system today, you better understand that it’s a full-time job advocating for your spouse. you have to follow up, seek information, do the research, but you have to do it with utmost respect to the professionals that are involved. being a bully in a cage is not helpful to anyone.

maja begovic is a toronto-based writer.

do you have a story about your experience as a caregiver? send a note to info@healthing.ca and we’ll be in touch.

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how i care for dementia: 'no one can tell you what's going to happen' with corticobasal syndrome

esther schreiber’s husband eddie was diagnosed with a rare form of dementia at age 61. one piece of advice she has for other caregivers is to understand that there are limits to what you can do.

what led to your husband’s diagnosis?

how i care: 'caregiving is demanding, but it can also be rewarding, even while your heart is breaking'

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'

did it take a long time to get the diagnosis?

what sort of support did you provide to your husband?

how has dementia impacted his personality?

did anyone prepare you for the role of a caregiver to a dementia patient?

how do you cope when you’re constantly being caught off guard?

were you initially hesitant to seek help from the support group?

what has been your biggest challenge?

what’s your advice to other caregivers who are supporting a loved one through dementia?

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how i care for dementia: 'no one can tell you what's going to happen' with corticobasal syndrome

esther schreiber’s husband eddie was diagnosed with a rare form of dementia at age 61. one piece of advice she has for other caregivers is to understand that there are limits to what you can do.

what led to your husband’s diagnosis?

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did it take a long time to get the diagnosis?

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what sort of support did you provide to your husband?

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how has dementia impacted his personality?

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did anyone prepare you for the role of a caregiver to a dementia patient?

how do you cope when you’re constantly being caught off guard?

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were you initially hesitant to seek help from the support group?

what has been your biggest challenge?

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what’s your advice to other caregivers who are supporting a loved one through dementia?

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