Stephanie Muskat has spent her entire adult life fighting for people to understand her experiences caring for her mother.
“I would really like for caregiving to be understood — not just as a word, but an understood concept,” the social worker and psychotherapist said from her Toronto home. “I think we hear this term, but we don’t fully understand what it means.”
For Muskat, it means spending hours each week in meetings, advocating for her mother, who has dementia. It means less time supporting other caregivers through her company, Compassion in Caregiving, a counselling agency focused on caregivers. It means sleeping less than she should.
Her children — ages three, five and seven — know she is often sad about grandma, that pottery classes help her cope.
Muskat, an only child, began caring for her mother as a 19-year-old university student, when her mother’s behaviour suddenly changed. She stopped paying bills; her emotions became erratic. Eventually, her mother was diagnosed with frontotemporal dementia, a disease that damages the brain’s frontal lobes, impairing a person’s decision-making abilities.
Instead of socializing, Muskat spent weekends travelling from Hamilton to Toronto to be with her parents. The only caregiving support groups available were for elderly women, caring for their husbands.
Muskat — along with many other Canadian caregivers — is hoping a national caregiving strategy could relieve some of these burdens. She would like to see more direct financial support for caregivers and more caregiver-friendly workplaces.
Ottawa promised to consult on a national caregiving strategy in last year’s budget. The government has not yet said when public consultations will begin, or when a strategy could be expected. With Parliament prorogued, and an election looming, it is unclear that a strategy will materialize anytime soon.
But that has not stopped a caregiver research and advocacy organization from outlining what the government’s strategy should include. On Feb. 18, the Canadian Centre for Caregiving Excellence released a detailed plan for the strategy.
“It’s really a roadmap for government and for all political parties,” said Liv Mendelsohn, executive director of the centre.
“It’s a series of policy directions that they can simply pick up, take and implement into their strategy.”
Muskat says she hopes it “normalizes” caregiving. “It’s just a part of our society now. We are working and caregiving.”
Unmet government promises
According to the centre’s research, one in four Canadians are unpaid caregivers; one in two will be in their lifetime.
More than half of caregivers who provide more than five hours of unpaid care a week report financial stress, a national survey by the centre showed. Half also reported difficulty accessing financial supports for caregivers, the centre says.
Some parts of the centre’s strategy are not new. It asks the federal government to fulfill the Liberals’ promise to make the Canada caregiver credit — a non-refundable tax credit for eligible caregivers — a refundable benefit. Former finance minister Chrystia Freeland’s 2021 mandate letter included this as a priority, but it never happened.
The strategy calls on Ottawa and the provinces to ensure personal support workers who work for publicly funded agencies earn at least $25 an hour.
It also urges Ottawa to create and pass legislation to create a national caregiving strategy and a federal advisory caregiving council.
“Absent legislation, it’s a lot easier to just sit on your hands and do nothing,” said James Janeiro, director of policy and government relations at the caregiving centre.
Party priorities
The Canadian Centre for Caregiving Excellence works with politicians from all main federal parties. But it is unclear how much each party prioritizes caregiving.
In a statement to Canadian Affairs, Bonita Zarrillo, the NDP’s deputy critic for health and critic for disability inclusion and seniors, said the NDP supports a national caregiving strategy. “It’s time we take care of the people who care for our loved ones,” Zarrillo said. The NDP would make the Canada caregiver credit a refundable benefit, the statement says.
Neither the Conservatives nor Liberals responded to questions about whether they would support a national caregiving strategy.
Last month, a spokesperson from Economic and Social Development Canada told Canadian Affairs that the government will launch an online survey about a caregiving strategy. The agency is in charge of leading consultations on this strategy.
Canadian Affairs also asked Liberal leadership hopefuls if they plan to support a national caregiving strategy.
In a statement, Chantalle Aubertin, campaign spokesperson for Chrystia Freeland, listed existing federal programs to support personal support workers. She did not answer questions about whether Freeland would create legislation to support a caregiving strategy and gave no details about what a national caregiving strategy would include.
Liberal leadership hopefuls Mark Carney and Karina Gould did not respond to requests for comment.
‘We can do both’
Jordan Wiley, who works for home care agencies in Nova Scotia, says he is eager for a national caregiving strategy. He spends his days providing personal care to people with complex medical needs or disabilities, helping them with tasks such as dressing, bathing or eating.
Paid caregivers like himself need access to better wages and sustainable careers, he says. But he really wants to see more support for the individuals and families he supports.
Everyone he cares for “wants to be at home,” he said. “To do so, they just need a little bit extra support.”
The Canadian Centre for Caregiving Excellence’s strategy says the Canadian government could provide that support by expanding existing financial support programs and learning from international models of caregiving support.
The strategy calls on Ottawa to increase the promised Canada Disability Benefit from a maximum of $2,400 a year to a minimum of $12,000 a year.
“We heard all the time from caregivers that the number one thing you can do to help the caregivers is to help the person for whom they’re providing care. The second-best thing you can do is to help the caregiver,” said Janeiro. “In a rich, generous country like Canada, we could do both.”
The centre’s strategy also draws inspiration from international caregiving policies. It proposes the creation of a national caregiving allowance for unpaid caregivers who provide more than 35 hours of care a week. Similar programs exist in the U.K. and Australia. The centre proposes that a national caregiving allowance in Canada begin at $600 a month, or $7,200 a year, and be phased out according to caregivers’ income.
The strategy also calls on Canada to create a national caregiving insurance program, similar to a program that exists in Germany. Under this program, employees and employers contribute to a fund — similar to Employment Insurance — that can be used to pay for caregiving needs, such as home care. This program would allow people to be cared for at home, instead of in a long-term care facility, the centre’s strategy says.
In Toronto, Muskat hopes momentum for a caregiving strategy grows, and that more caregivers can be supported to properly care for others — and themselves.
Caregiving, she said, is an “all-encompassing, all-consuming role.”
But, as she tells her children, it is motivated by love.
“I try to instill in them the values of: if we love one another, we support one another no matter what. And that we also need our own boundaries, and we need to care for ourselves at the same time.”
