Donna Thomson spent decades caring for family living with dementia, Parkinson’s, cerebral palsy, the effects of a stroke — and she never received a cent for her labour.
“I’ve been a caregiver all of my adult life. And I don’t have a pension [because of it],” she says.
Thomson’s caregiving began at 16, when a stroke left her father unable to use his right side or speak. Thomson, the youngest of two daughters, spent much of the next two years doing household chores and talking to her father, even if he didn’t respond. He died in 1975 when Thomson was 18.
Her mother remarried. Her stepfather died in 2003 from complications related to Parkinson’s disease. Her mother died in 2018. She’d lived with dementia for years, a time Thomson describes as a “complicated and challenging care experience.”
Thomson and her sister poured their energy into keeping their mother safe. Several times a month, Thomson traveled from her Ottawa home to spend a couple of days with her mother in Montreal. She views the time she got to spend with her mother as a gift. But it was also hard. Her contributions as a caregiver weren’t always recognized. She took on the financial cost herself.
Caregiving had already limited Thomson’s work life. After her son Nicholas was born in 1988 with cerebral palsy, it became impossible to work. She left her job at a theatre company to provide the 24-hour, one-on-one care he required — something she did until he was 23 and moved to a medical group home.
Thomson’s husband, Jim Wright, is a retired High Commissioner for Canada to the United Kingdom.
“As far as the government was concerned, I was eating chocolates lying on a lounge chair at home,” Thomson says. But her life wasn’t leisurely. Financially speaking, she has “nothing to show for it.”
‘Super aged country’
Thomson isn’t alone. About one in four Canadians provide unpaid care to a relative or friend who is aging, ill or disabled. Half of Canadians will be a caregiver at some point in their lives.
More than a quarter — 28 per cent — care for both children and elderly parents at the same time, according to Giving Care. That’s a policy paper released last year by the Canadian Centre for Caregiving Excellence, a research and advocacy organization for caregivers that is calling for a national caregiving strategy.
“It’s very hard to ignore a quarter of the population. It’s impossible to ignore half the population,” says James Janeiro, director of policy and government relations at the centre. “It’s the next frontier of public policy in Canada.”
Demographics show it’s a pressing need. “Within a year we’re going to become a ‘super aged country,’ where at least one in five Canadians is… 65 and older,” said Samir Sinha, director of health policy research at the National Institute on Ageing at Toronto Metropolitan University. Within a decade, when Baby Boomers start turning 85, Canada will be “a rapidly aging country,” Sinha said.
Unpaid caregivers provide three hours of care for every hour of professional care a person receives, the Giving Care report says. Economists and researchers estimate unpaid family caregivers in Canada provide 5.7 billion hours of care each year. It would take 2.8 million full-time paid care workers to do this work instead, at a price tag of $97.1 billion.
Federal policies such as tax, employment insurance and immigration already impact caregivers, while the provinces and territories administer many programs that caregivers use, such as health care or social services. These systems vary across the country.
A national strategy would help connect various departments to better coordinate support for caregivers, Janeiro says. “Even just having that conversation at the national level prompts other orders of government, like the provinces and the territories, to start to think about these issues,” he said.
The US released a national caregiving strategy last year.
Juggling act
Caregivers need financial support. “Many of them are just looking to have some of their basic costs met,” such as gas and groceries, Sinha says.
There’s a call for changes to the Canada Caregiver Credit, a non-refundable tax credit that gives financial support to eligible caregivers. The amount varies depending on the incomes of the caregiver and the person receiving care and how they are related.
Finance Minister Chrystia Freeland’s 2021 mandate letter included a mandate to change the credit into a tax-free refundable benefit. That hasn’t happened. According to the letter, a refundable tax-free caregiver benefit would give eligible Canadians up to $1,250 a year.
Many caregivers are employed and struggle to balance their jobs with caring for someone. Six million Canadians are doing this juggling act, according to Statistics Canada.
And many must take time off work. Employment Insurance offers paid leave of up to 26 weeks for employees caring for someone who is near end-of-life. Caregivers must have worked 600 hours in the previous 52 weeks to qualify. The EI system offers little to someone who is caregiving for someone with episodic needs, who may get better before needing care again in a few months.
Besides this, many personal support workers in Canada come from other countries. Some struggle to have their credentials recognized. Others have to leave Canada if their employment or immigration status changes, said Janeiro.
Civic contribution
Despite the pressing needs, change is slow. Since 2015, the National Institute on Ageing has continuously called for a national seniors’ strategy which would include enhanced caregiver support, said Sinha.
Caregivers are often a “hidden population,” says Sinha. “Out of sight, and therefore out of mind.” He says the reason the strategy doesn’t exist is because, as a society, “we don’t really want to address the issues of aging.”
Donna Thomson thinks about aging a lot. At 68, she says she’s “lived her life backwards.” She published her first book, The Four Walls of My Freedom, when she was 55. In 2019, she began teaching courses on caregiving through McMaster University in Hamilton.
“Effectively, from 1988 and 2019, I did not work,” she explains. Her husband has a pension that supports them.
But she wonders who will take care of her when she’s older and if her caregivers will be supported.
Thomson hopes a national caregiving strategy will force all levels of government to recognize caregiving isn’t a “private” task, but “a civic contribution that needs support.”
“It’s not a choice,” she says. “Love and necessity is what it is. It’s not something that you can just say no to.”
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