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Opinion: After my surgery, I got a glimpse into the vast, hidden world of personal caregivers

Opinion: After my surgery, I got a glimpse into the vast, hidden world of personal caregivers
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Canadians want to age in their own homes rather than in an institution.Getty Images

Susan Pinker is a psychologist and columnist whose most recent book is The Village Effect: How Face-to-Face Contact Can Make You Happier and Healthier.

Two months ago, a section of my spine was fused. The neurosurgeon used a titanium cage filled with my own bone material, which he fixed in place with metal rods and the biggest screws he said he could find. The operation corrected a lumbar scoliosis – an S-shaped curve in my spine. The condition was so painful that I sometimes took a small dose of narcotics, prompting an orthopedist to wag his finger in my face. Of course, I knew about the addiction risk. My real worry was that I’d lose the ability to walk.

After trying all other options, my name was added to a long surgical waiting list, which gave me plenty of time to consider my postoperative infirmity. A few people suggested I arrange for some temporary help at home after my discharge from the hospital, and I had private insurance to cover some of the cost. After all, I wouldn’t be able to get in or out of bed by myself or get showered and dressed on my own. Eventually, I’d be much better off, but in the short term I’d be an invalid.

This is how I entered the vast, hidden world of paid personal caregivers. Unlike my family, they’d be paid to help me, but that doesn’t mean they’d get more visibility or recognition. The Canadian government calls them “personal support workers” and there are at least 350,000 of them in Canada. PSWs earn an average of $16 an hour (Manitoba) to $36.53 an hour (Nunavut), and there are never enough of them. The work is uncertain, blowing with the winds of government budget mandates and attitudes to the immigrants who usually do this type of work.

I live in Quebec, where despite ministerial promises to launch a functioning, provincewide home-care system for seniors by this December, the Legault government has slashed $1.5-billion from an already leaky health care system. The latest cuts will erode the patchy, hard-to-access home care that already exists, which will affect the most vulnerable adults in our society: frail seniors and the disabled.

For a short time, I was the latter; for a long time, my octogenarian mother was both. She was smart as a whip, but had heart failure and was not very mobile. In July, 2020, she started to fall in her apartment. First it was once a month, then once a week, then once a day. After one midafternoon call from her medical-alert service, my spouse and I drove over, picked her up from the floor and the three of us sat in her sunny living room, looking at each other in silence. What would happen now? My mother applied for a provincial home-care subsidy and was told to wait. In the meantime, the local CLSC, or community health centre, would send someone to help her get out of bed in the morning and start her day. Nothing else was offered.

Home care – even for an hour or two a day – is a superb idea, but how it is implemented is key. In my mother’s case, once the service started, a different person arrived at a different hour every day – as early as 7 a.m. and as late as 1 p.m. – to get her out of bed and help her wash, dress and prepare her breakfast. The breakfasts varied. One day it was mayonnaise on Wonder Bread. Some of these home workers were men; others could not communicate with her. No one asked her what she wanted.

This situation wasn’t working, so the family hired a PSW, which is called a PAB in Quebec, for préposé aux bénéficiares. My mother applied again for the provincial subsidies created to keep seniors at home and out of the chronic-care facilities that were proving so deadly at the time. We waited so long that by the time the service kicked in, my mother had died. Indeed, two years after her death in 2023, we are still receiving the monthly paperwork to fill in the caregivers’ names, hours, and social insurance numbers.

The point is not to knock government assistance programs, nor to defame the immigrants who tend to do this kind of work, as Donald Trump does. The point is the opposite: to draw attention to the explosive demand for personal home care. Between 1997 and 2022, the home-care work force had grown by 78 per cent, according to the Canadian College of Healthcare and Pharmaceutics, because like my mother, most Canadians want to age in their own homes rather than in an institution. Our aging population needs more immigrants who can assist them, not fewer. Programs to allow home-care workers to come into Canada and get permanent status have been ever shifting and hard to navigate. Yet the full-throated embrace of immigration has become muted, even in our famously multicultural country. In other words, what we say we want for ourselves and our families conflicts with our attitudes toward the immigrants who are trained and willing to provide that care.

Polls show that two-thirds of Canadians want to reduce immigration, according to Abacus. In the Walrus, Kamal Al-Solaylee writes that Conservative Leader Pierre Poilievre will tap into our anxieties about the cost of living by attacking foreign workers and international students. This is already happening. Trump-style name-calling is clearly beneath Mr. Poilievre, but the anti-immigrant dog whistle comes across loud and clear: “We will stop the illegal arrival of false refugee claimants … We will end the abuse in the temporary foreign worker program, the international student program and the refugee program … We will screen people coming in to keep terrorists and criminals out,” he said in a news conference.

This xenophobic message may be a ruse to boost his popularity before an election. But such talk could erode our tolerance and empathy, not to mention the type of welcome offered to home-care providers like the fine women who helped me. Three of them were immigrants from the Philippines and are now either Canadian citizens or permanent residents. They had been reunited with their families after years of waiting, while working here alone and sending home essential financial support to their families. In Canada, they earn 10 times what they can make in the Philippines, one of them told me; they can house, feed and educate their families with what Canadians view as meagre pay.

Two of my helpers were East African refugee claimants who had been professionals in their home countries. One showed me photos of her son’s recent wedding, which she missed because she could not travel to her home country without risking her refugee claim. Another came to work a night shift dressed in a crisp white blouse, black flowered smock and elegant pearl earrings, despite the fact that she’d be sitting in the dark, unseen by anyone but me. None of them got a voice in this article because the home-care agency that employs them refused to put us in touch, thus increasing their invisibility.

For two days and three nights, I relied on my caregivers to help me get in and out of bed, shower, put on my socks and shoes, and prepare simple meals. This sudden vulnerability gave me more insight into my mother’s hotheadedness during her last few years. Fiercely independent, she felt that her adult kids’ decision to employ a caregiver interfered with her privacy and self-determination. Suddenly I viscerally understood her desire to feel like her old self. Plus, the caregiver providing the support must walk a fine line, acting as protector, confidante, ally and employee, all at once. It can’t be easy.

In my case, I bonded with one of the five women. Without being asked, the caregiver guided me firmly by my elbow at night; I could walk but was unsteady on my feet. She told me stories about the incredible demands she faced as a young nanny in Oman, where she had no chance of obtaining permanent residency or citizenship. Canada is different – or at least it’s supposed to be.

Our society likes to turn away from the realities of aging and infirmity, while paying lip-service to independence, home care, and home palliative care. It’s time to lift off the veneer. Fifty years ago, women were at home 24/7 to care for the aged and infirm. Now most can no longer provide round-the-clock care to their aging parents because they are working or are old enough to be senior citizens themselves. Their adult children are on a brutal treadmill of work and child-care demands.

There is no shame – indeed there’s a necessity – to keep our doors open to people who are trained and ready to do care work. One of my mother’s caregivers, Marivic Aujero, was told when she applied to work here that it would take two years to bring her daughter and husband over, but due to changing rules, it ended up being five years. Another of my mother’s early caregivers had work in Quebec, with several seniors depending on her care – but then was told she had to leave Quebec and apply for immigration status from outside the province.

Trained caregivers deserve more professionalism than this, especially when they look after us when we can’t look after ourselves. “Back home, we’re used to looking after our elders,” Ms. Aujero told me. “Some like the physical aspect but I like to communicate. It’s important for me to make that connection, so people feel normal.”

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