Caregivers facing extra pressures during the COVID-19 pandemic need more support, advocates say

Open this photo in gallery:

Katrina Prescott pulled her mother Kathryn’s tuque down snug around her ears to ward off the November cold. She tucked the 69-year-old tighter into the blankets of her wheelchair for the short outdoor excursion and headed out the door.

Even on Ms. Prescott’s day off, the work never really stops. She and her mother live in Vancouver’s West End, and caring for her mother, who suffers from the advanced stages of dementia, mirrors the often-exhausting caregiving that one in four Canadians provide for family, friends, neighbours and roommates every day. Like many family caregivers in Canada, even with homecare support, Ms. Prescott lives teetering on the edge of burnout. The pressures and fears of the COVID-19 pandemic have made things even worse.

“You’re just kind of out there swimming – doggy-paddling, keeping your nose above water – alone,” Ms. Prescott said.

When will Canadians get COVID-19 vaccines? The federal and provincial rollout plans so far

How many coronavirus cases are there in Canada, by province, and worldwide? The latest maps and charts

Is my province in lockdown? A guide to COVID-19 restrictions across Canada

Canada’s health care system would collapse without the millions of Canadians who provide care to others out of love. As The Globe and Mail reported in July, family caregivers who were struggling even before the COVID-19 pandemic have been hit hard, and experts say new federal support rolled out this fall does not go far enough to help them.

In November, Alberta-based energy company Petro-Canada stepped into help fill the gap, launching a new national charity called the CareMakers Foundation, backstopped by a commitment of $10-million over five years from its parent company, Suncor.

But Ms. Prescott, echoing caregiving experts across the country, says it shouldn’t be left to the corporate sector to bridge this gap in the first place.

“The government really needs to recognize and acknowledge us,” she said. “We save them billions of dollars a year.”

Open this photo in gallery:

A recent report from the University of Alberta shows that COVID-19 has shifted burdens onto at-home caregivers, while simultaneously leaving family members of those in long-term residential care feeling cut off and unable to provide the care they normally would. In both cases, feelings of anxiety, stress and isolation are rapidly rising.

Homecare support in Alberta dropped by half during the pandemic – and has remained at that level, according to Sandy Sereda, executive director of Caregivers Alberta. Meanwhile, the cost of essentials such as groceries, incontinence supplies and transportation has gone up, Ms. Sereda said.

Similar trends are being seen across the country, said Barb MacLean, executive director of Family Caregivers of British Columbia. In B.C., it’s impossible to know how much homecare support has been cut back as a result of the pandemic because health authorities don’t release such data, Ms. MacLean said. But since the spring, her organization’s call centre has seen a 180-per-cent rise in calls for support. The most frequent calls relate to requests for financial aid that the callers often don’t qualify for, she said.

“Fifty-seven per cent of people who call our line are not working, and so the financial assistance available [from the federal government] does not apply to them. That’s 57 per cent who are getting nothing,” Ms. MacLean said.

In early October, the federal government transitioned from the Canadian Emergency Response Benefit system to a new process that includes federal support specifically for family caregivers. Under the Canadian Recovery Caregiving Benefit, qualifying caregivers are eligible to receive $500 a week per household for a maximum of 26 weeks.

But to qualify, applicants can’t be receiving any other federal pandemic response benefits, social assistance, workers’ compensation or employment insurance benefits. That cuts off huge numbers of caregivers who were already struggling before the pandemic hit, Ms. MacLean said.

“If you’re a caregiver on the margins, you won’t have received any of the support,” she said.

The Globe’s requests for comment to Minister of Seniors Deb Schulte’s office were not returned.

It’s estimated that the labour provided by family caregivers accounts for roughly 75 per cent of all patient care in Canada, saving taxpayers between $24-billion and $30-billion in health care costs a year. More than eight million Canadians are caregivers – and nearly half of us will become one at some point in our lives.

Aside from any burdens they may share, the one thing advocates say virtually all caregivers have in common is feeling invisible. Many caregivers and advocates the Globe spoke with say they don’t feel supported or respected by the health care system – and that their work caring for others goes largely unacknowledged.

Kevin Metz hopes the CareMakers Foundation’s forthcoming publicity campaigns may finally start to change that perception.

Mr. Metz lives in Edmonton, where he is a human-resources manager for Suncor. He regularly works eight-to-10-hour days before coming home to his family, where “I have my other job sitting there waiting for me,” he said.

His two sons, 12-year-old Parker and eight-year-old Preston, both suffer from neurological and behaviour disorders. Parker has Tourette’s syndrome and obsessive compulsive disorder. His brother Preston is on the autism spectrum. Their behaviours sometimes seem diametrically opposed: One is an extrovert and constantly wants to be with his brother, who happens to be an introvert and prefers solitude. The combination can be explosive.

Helping to manage those challenges often means leaving the cleaning and housework until well past midnight when the boys are asleep, Mr. Metz said. That leaves precious few hours for his own rest before heading back to the office in the morning.

For Mr. Metz and his wife, one of the biggest concerns when they became parents was trying to access resources, but they soon learned that they weren’t alone in their caregiving struggles.

“Right from the start, before my children had their diagnoses, we had no idea what was going on,” Mr. Metz said. “We were trying just to figure out how we could be better parents.”

A stiff-upper-lip approach is all too common among caregivers, said Leila Fenc, executive director of the CareMakers Foundation. Ensuring that caregivers receive the recognition and support they need is a driving force behind the organization, she said, adding, “this is an unseen issue throughout Canada.”

Truly recognizing that extra labour means focusing on more than just family members. Ms. Fenc says the CareMakers Foundation uses a definition of “family caregiving” that extends beyond the traditional nuclear family to include friends or neighbours. “We define family as [the way] people choose to define their family,” Ms. Fenc said.

That’s how Thierry Rebiffe describes his relationship with Gina Egilson. Though most would call them roommates, they rely on each other in much the same way as family.

“I’d be on the streets if it weren’t for Gina,” Mr. Rebiffe said. “If it weren’t for her, I’d be sleeping in a tent.”

Open this photo in gallery:

Open this photo in gallery:

Having dealt with a medical condition affecting his legs since childhood, Mr. Rebiffe, now 29, says he also struggles with PTSD and substance use. He was homeless for years and living in a tent in the forest near Surrey, B.C., until Ms. Egilson took him into her rental house.

In return for support in maintaining his sobriety, Mr. Rebiffe helps Ms. Egilson with running the house and managing other roommates who come and go.

“I was homeless in Abbotsford for years,” says Ms. Egilson, 48. “I have to have hip surgery myself … so I’m not in a position to do all that I normally would be able to.”

What the two provide for each other is care – just like any other family, Ms. Egilson says.

Though their situations vary significantly, all the caregivers the Globe spoke to are unanimous in their call for more support, especially from government.

Ms. Prescott, who works as a freelance video producer in Vancouver, sometimes spends up to 15 hours a day on set. When she’s not working, caring for her mother leaves her only about six hours of respite for herself a week.

While she’s encouraged by the new foundation, she says $10-million is ultimately only a drop in the bucket. What’s really needed is a national hub – a central place for caregivers to go for resources, funding, support and guidance, she says.

“In my experience, becoming a caregiver was a massive undertaking,” Ms. Prescott said. “I’m resourceful, which is good. But it’s been a very wild ride.”

Open this photo in gallery:

Editor’s note: An earlier version of this story incorrectly stated where Katrina Prescott lived.

Our Morning Update and Evening Update newsletters are written by Globe editors, giving you a concise summary of the day’s most important headlines. Sign up today.