Brian Hills lost his wife of 46 years in fewer than five months — the hardest four months of his life. He and his beloved wife Sam had just returned from Cuba when she got the diagnosis — her third bout of breast cancer, and this one had metastasized.

“It was stage four — it had spread to her liver, her brain, throughout her bones,” Hills says. 

Immediately after Sam received her diagnosis on March 14, 2017, Brian became her primary caregiver. The two had just retired — he as a lieutenant in the navy, she as a dental assistant — and were finally enjoying some time travelling.

“I looked after her for four months before we got the palliative care bed,” Hills says.

When they got the bed, one of the nurses who’d been particularly kind to him, told him that he could then go back to being a husband, instead of a caregiver. It was already a relief to him, and a further relief to know that someone else recognized that. On Aug. 12, 2017, Sam died in palliative care.
 

One in four Canadians care for someone

As Brian Hills discovered, being a caregiver is all-consuming. It’s an invaluable service that family members offer to their loved ones, but it’s also a service to the country as it is billions of dollars worth of unpaid labour. These informal caregivers are the ones who help people live out their days at home — a preference most older adults have stated.

The work of caregivers isn’t always understood or fully appreciated — and it’s barely financially compensated, something Federal Retirees has been working to change for years. The federal government currently provides the Canada Caregiver Credit, which is a non-refundable tax credit to individuals caring for dependent relatives with disabilities. In its 2024 budget submission, Federal Retirees urged the government to increase the value of this tax credit by making it refundable, and to invest in tools and programs to assist informal caregivers, especially the 1.5 million Canadians (Statistics Canada 2018) over the age of 65 who provide care for a family member or friend suffering from a chronic illness, Alzheimer's, or dementia. However, this didn't happen in budget 2024.

The total number of caregivers is even higher than that. Statistics Canada reported in 2018 that one in four Canadians, or 7.8 million people, said they provided care for family members or friends with a long-term condition, a physical or mental disability or problems related to aging. That number will have grown as the first of the baby boomers are now reaching their late 70s. And these responsibilities, while shared between men and women, start off being higher for women: 54 per cent of caregivers are women, and 64 per cent of the caregivers who spend more than 20 hours a week caregiving are women. In 2022, Statistics Canada reported that unpaid caregivers spent a median of eight hours per week providing care for adults with long-term conditions or disabilities, with women providing 10 hours of care and men providing six. As we age, however, older men are almost as likely to be caregivers as women. Among those aged 75 to 84, for example, 22 per cent of men and 23 per cent of women had caregiving responsibilities. And among Canadians aged 85 and older, men (17 per cent) were, in fact, more likely to be caregivers than women (11 per cent). In comparison, women aged 45 to 54 (37 per cent) were more likely to provide care than men of the same age (29 per cent).

“Caregiving is unpaid and those who do this work are often faced with greater financial burdens and higher levels of stress,” says Sayward Montague, Federal Retirees’ director of advocacy. “Caregivers require support and deserve training, peer mentoring, financial compensation and opportunities for respite.”

Like Federal Retirees, the Canadian Centre for Caregiving Excellence has also called for the government to make the Canada Caregiver Credit refundable. James Janeiro, the centre’s director of policy and government relations, reports that doing so is in Finance Minister Chrystia Freeland’s mandate letter and yet, it remains undone.

“This conversion from non-refundable to refundable would mean a little bit of money in the hands of caregivers today,” Janeiro says. “If you are one of the 20 per cent of caregivers across the country who earn less than $20,000 a year, even a little bit of money through this credit can be the difference between one more trip to the grocery store, or not. Especially in a time of increasing cost of living.”

Although Canada’s health-care system is often looked to as an enviable one, support for informal caregivers is one area in which Canada lags behind other countries.

“Caregivers spend more than 5.5 billion hours a year caring for people in their lives,” says Janeiro, whose centre supports and empowers caregivers and care providers (those in paid positions); advocates for effective social policy and advances knowledge and capacity in the field. “If you were to try to attach a dollar sign to that, it comes out to about $100 billion annually.”

As Brian Hills and many Federal Retirees members like him have discovered, it takes a physical, emotional, psychological and financial toll on people. The mental health toll is particularly high.

“A survey from 2021 showed that 87 per cent of caregivers experienced loneliness, which we know more and more every day has a serious health impact on a person,” Janeiro says. “Almost 75 per cent reported moderate to high anxiety and almost 70 per cent said they had a deterioration of their mental health [while] half had a deterioration of their physical health. So, the situation isn't great and there’s a lot of room to do better.”
 

Ideas for improvement

Caregivers who are still in the workforce tend to work less. Given that, the Canadian Centre for Caregiving Excellence states that one way in which employers could help would be to have caregiver-friendly policies. Such policies would give flexibility if an employee needed a couple of hours midday to take a parent or spouse to an appointment, for example, or even an extended leave should an emergency arise.

Another big area for improvement is with the benefits provided for caregivers through the employment insurance system.

“There's caregiver leave designed primarily for people to support someone near the end of life,” Janeiro says. “But the paperwork and the hurdles you have to go through to access it are huge. It takes forever to hear back.”

He’s heard many cases where the person the applicant was going to support died before they heard back.

“In those situations, most Canadians would just do what they have to do, and maybe even lose their jobs,” he says.

Finally, Janeiro says, his organization is asking the federal government to commit to coming up with a national caregiver strategy that would “wrap all of this stuff under one umbrella.”

In this case, budget 2024 did come through, stating the government would investigate the development of such a strategy.

Guy Bird, a former member of the national board of Federal Retirees and current president of the Central Okanagan branch, looked after his Alzheimer’s-stricken wife for 12 years. He says he’d like to see some kind of recognition of the fact that family caregivers are doing “one heck of a lot” of work.

Célyne Houde, who watches over both her 93-year-old parents — her mother is in a long-term care home with Alzheimer’s and her father is in a different retirement residence — says her responsibilities were challenging at first but “once you know resources exist and you knock on the right doors, things start getting into place.

“But finding them takes work,” she admits.

Geoff Howson, who looked after his father, Donald, after Donald had a stroke, says caregivers can also experience stress when a family member is in a care home and runs out of money.

“I was the spiritual co-ordinator at a long-term care home, and I watched some of the seniors running out of money,” Howson says. “They would have to move from a single room where they had privacy sometimes to a shared room for four. That's emotionally upsetting for anyone.”

While all caregiving has its ups and downs, there are rewards, and sometimes, it goes as well as it possibly can. One member, who wished to remain anonymous, reports having a mother in care who understands the job of her three daughters in advocating for her because she had a career in health care. All three daughters live close by and are always on the same page with respect to their desires for their mother.  

“It’s very easy to help our mother and she’s always very, very grateful,” the member says. “She never stops bragging about us to everyone. She always tells them how lucky she is to have such good daughters. She is an exceptional person who is very easy to love.”

Find out how you can get involved in Federal Retirees’ campaign on caregiving visit this link for full profiles on four members who’ve served as informal caregivers.