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Illustration by Marley Allen-Ash
On a Thursday afternoon a few weeks back, I exited the neighbourhood pharmacy tightly clutching three packs of 20 adult diapers. They were piled so high I could barely see my path to the pharmacy parking lot. That’s the moment I realized fully that I’d become an unexpected caregiver of a woman named Joanne.
Unexpected because I’m not Joanne’s partner or adult child. She’s my big sister. I’ve known and loved her my entire life. She has dementia. I suspect she’d be mortified if she knew I was keeping her stocked with adult diapers.
It’s just one of an endless number of tasks on the unexpected caregiver’s to-do list.
I’m not alone. In a 2018 report, Statistics Canada said roughly one in four Canadians aged 15 and older provided care to a family member or friend. Caring for parents or parents-in-law is the largest single category. Many are partners, some are siblings and some are parents of adult offspring with acquired brain injuries and other conditions.
Joanne and I expected to be caregivers to our parents. Our father had congestive heart failure and our mother had dementia. Caring for them felt like a chance to do what they did for us when we were young.
What defines unexpected caregiving is that the burden is unanticipated and usually unplanned. One moment, your parents are gone and you think you’ve got a good 10 or 15 years before you might have to care for a partner. The next, you find yourself being yanked back into the caregiver role.
Since I came to that realization, the hours have started to add up with feeding, companionship and a bit of help wheeling Joanne up and down the hallway where she lives. There are many other tasks. Shopping for necessities. Recruiting and communicating with personal support workers (PSWs). Talking with doctors, nurses and physiotherapists. Banking and making sure the taxes are paid. Keeping friends and extended family members in the loop.
This unexpected time commitment is 12 to 15 hours a week and climbing. For some, it’s an unpaid full-time job. Caregiver burnout is rampant among family caregivers. The Canadian Institute for Health Information says one in three of them experience personal distress, with feelings of anger and depression.
I began to lose sleep and felt as if I was drowning in responsibilities. I realized that I needed to make some profound changes or I’d burn out, too.
What I came up with is a set of principles I call “Brian’s rules.”
The first rule is to take care of me. I exercise vigorously every other day. I try to get enough sleep. The second rule is that my caregiving duties do not include drowning in sadness or pity for Joanne. I know she wouldn’t want that.
The third rule is to be pragmatic, not perfect. Caregiving is an exercise in messy improvisation. It’s never perfect. You’re doing fine if the person you care for is better off than they would be without you.
Unexpected caregiving also involves an unending list of things to do. The fourth rule is to figure out what you dislike doing and find someone else to do it.
As a physician, I enjoy interacting with health professionals and going to medical appointments. I like helping with tax and other personal finance matters. I also like interacting with personal support workers.
Feeding Joanne is hit-and-miss. Toileting and related personal care are things I don’t do. For those tasks, I’ve hired PSWs. One of the best ways to find them is to ask your network of family and friends for recommendations.
Since I don’t have time to do a lot of interviewing, I hired a private provider of PSWs. It cost more per hour, but the agency is responsible for hiring, training and monitoring for quality of care. When a PSW calls in sick, the agency finds a replacement.
The agency also gave me a useful tip. Since the person I care for qualifies for publicly funded PSWs, I asked that the provider I hired be designated as the agency for services paid for by the province. By lumping private and public hours together, I was able to get one agency to provide a consistent set of PSWs for more hours at no extra cost.
I’ve recruited my partner Tamara to buy personal care supplies and to feed Joanne one or two meals per week. I encourage Joanne’s friends to pitch in with visits on a regular basis. Every hour of care they provide is one less hour on my plate.
The fifth and most important rule is to assemble a team to get the job done. When I started caregiving for my sister, I felt as if the responsibility was all mine. I believe it’s that sense of “I alone” that leads to exhaustion and burnout. Out of necessity, I hired and recruited others to help me. As more and more people came on board, I began to see a team forming before my eyes.
As the team leader, I’ve set our goals to meet Joanne’s physical and emotional needs and to support me. As the team leader, I keep everyone informed on Joanne’s status. I set up an online group chat to update her close friends about Joanne’s care needs and to recruit them to visit and provide additional support. In turn, they keep me informed with their unique take on how Joanne is doing and on her changing needs.
For me, teamwork is the connective tissue that makes the burden of unexpected caregiving more manageable. It’s what enables me to smile every time I visit Joanne.
Dr. Brian Goldman lives in Toronto.