Pandemic reveals the plight of caregivers living on the margins

Mark Usher is worried he’s going to lose the house.

It took the 55-year-old nearly a year to pull together a handful of homeless and marginally housed seniors and find a house with rent they could afford to share. Caring for his four roommates and managing the house is a full-time job for Mr. Usher, and he does it essentially for free.

There are dishes to be washed, appointments to be scheduled, and medications to be dispensed. His days start around 7 a.m. and he often doesn’t finish until close to midnight.

“I’m exhausted,” he said.

Though he’s not a family member to any of his roommates, Mr. Usher still falls under the umbrella of “caregiver” – one of the roughly eight million Canadians who provide unpaid care to their relatives, neighbours or friends. According to the Canadian Association of Retired Persons, their combined labour saves taxpayers somewhere around $30-billion every year.

While experts say this work has been undersupported and under-valued for years, the impacts of the COVID-19 pandemic are hitting these caregivers especially hard. Mr. Usher, who has had two empty rooms in his house for three of the past four months, is faced with a choice between leaving them empty to protect his vulnerable roommates in the midst of the pandemic, or being able to pay the rent.

“There’s this huge gap,” said Barb MacLean, executive director of the Family Caregivers of B.C. “We’re seeing it with bright shining blinkers in front of us now and we didn’t realize it was as big as it is.”

Ms. MacLean said the COVID-19 crisis has been an eye-opener for her organization, revealing the number of caregivers and care receivers living on the margins who have been pushed into crisis by the effects of the virus.

Over four days at the start of May alone, Ms. MacLean said, her organization fielded 222 calls from caregivers in financial distress.

“We had people asking ‘Can you help? Do you have money?’ ” she said. “And it might be as little as, do you know someone who can help me buy groceries? It could be someone has a car but they can’t drive to medical appointments because all they needed was 20 bucks for gas.”

“We have never taken those kinds of calls before,” Ms. MacLean said.

It’s not just happening in British Columbia. Caregiver associations across the country say they’re hearing from people who are struggling to make ends meet amid the coronavirus crisis.

By late May, Sandy Sereda of Caregivers Alberta said home-care access in that province had dropped by nearly 50 per cent, leaving friends and families struggling to pick up the slack.

In Ontario, Cheryl Perera, the chair of the Ontario Caregivers Coalition, said the financial distress of family caregivers is a long-standing problem made suddenly worse by the economic impacts of the virus, but the pandemic is also taking a toll on caregivers’ well-being.

“People are very concerned about burnout. They’re getting tired,” Ms. Perera said. “It’s not just the in-home support, but it’s even just losing the chance to have a break and be out in the world and visit your friends and just do those things that take care of your own stress as a caregiver.”

Mr. Usher knows better than most how long some of the gaps in seniors care have existed.

Eighteen months ago, he was homeless, living in a shelter and growing frustrated at the cycle of vulnerable seniors he saw getting shuffled between hospitals and shelters with nowhere stable to go.

He dreamed of starting a seniors house, a place to help fill the gaps he saw in the housing system. When he moved into a subsidized housing tower near the Surrey Central Station, he let his friend from a nearby shelter, 70-year-old Larry McConkey, stay with him in his tiny bachelor apartment even though it was against the rules. He also started scouring Surrey for houses cheap enough that a half-dozen people on welfare could afford the rent.

In November, Mr. Usher found one, and persuaded a former boss to loan him the money – about $6,000 – to help furnish and fix it up.

Mr. Usher calls his house Mark’s Place and refers to his roommates as clients. All of them, including Mr. Usher himself, are on various forms of income assistance. Along with the grocery shopping, housework and appointments, Mr. Usher is in charge of helping to manage conditions ranging from diabetes and kidney failure to dementia, incontinence and addiction recovery.

One of his roommates – 71-year-old Brian Nutt – found out in early May that his back pain is the result of a crushed vertebrae requiring surgery for which he’d have to wait between four and six weeks, followed by months of rehab.

The house has room for six clients, plus Mr. Usher himself, who sublets each space for $1,000 a month, which covers rent plus three meals a day, two snacks, and all the utilities.

When the house is full, the pooled money is barely enough to pay the bills. But in February two roommates moved out and Mr. Usher’s car – which is critical for shepherding his clients to and from medical appointments – broke down. Then COVID-19 hit, and the hospitals and local shelters that had been referring new clients to Mr. Usher stopped.

With no way to fill the vacant rooms, the house began falling further behind on finances.

“The house has been losing $2,000 a month,” Mr. Usher said. “Everyone else is getting help for this COVID thing. I don’t see why we can’t get some help, too.”

One reason is that the vast majority of emergency relief announced so far by the provincial and federal governments requires a demonstrated loss of employment income. But neither Mr. Usher nor his roommates have any employment income to begin with.

There has been some relief geared toward seniors like those that Mr. Usher cares for. Earlier this spring, Ottawa announced a one-time top-up to the GST credit payment program, worth an average of $400 for single Canadians with incomes below $46,000.

And the B.C. government is providing a $300 top-up to income assistance programs for April, May and June. In a statement, the provincial government’s Roxanne Kropp also suggested that households in situations like Mr. Usher’s could apply to the BC Rent Bank, which can provide interest-free loans to help cover rent costs during the crisis.

On May 12, the federal government announced additional one-time increases of $300 to the Old Age Security (OAS) program and $200 to the Guaranteed Income Supplement (GIS) that many low-income seniors rely on.

While those measures will help his roommates somewhat, Mr. Usher himself doesn’t qualify for anything except the B.C. income top-up.

“I’m not asking for a million dollars or something,” Mr. Usher said. “I’m just asking for something to help me help these seniors so they don’t end up back out on the street.”

Jana Ray, the chief member and benefits officer with the Canadian Association of Retired Persons, said her organization has been hearing for weeks about the need for more support for seniors and the family caregivers they often rely on.

In a statement, federal Seniors Minister Deb Schulte’s office said it chose to make the additional support a one-time payment as a means of trying to speed the roll-out. “Seniors need help now,” the statement said. “We are providing one lump-sum right away instead of small amounts spread out over months.”

Ms. Ray said there are examples of successful caregiver benefits that could be rolled out across the country. Nova Scotia has a program that gives $400 a month to people providing otherwise unpaid care to family or friends.

Mr. Usher said he doesn’t earn a dime for his work aside from the $700 a month in income assistance he gets from the government, and all of that gets plowed back into the house.

Mr. Usher met 70-year-old Irving Richter when they were both living at a shelter in 2018. They connected, and Mr. Usher never forgot about him. After he got the house running, Mr. Usher went looking for Mr. Richter, found him asleep in a Tim Hortons and helped him get established in the house.

Mr. Usher’s one female roommate, who is 65 and asked that she not be named for personal safety reasons, became homeless after fleeing an abusive relationship. She was living in a local shelter when Mr. Usher found her.

Mr. Nutt, the oldest of Mr. Usher’s roommates, was referred to the house by social workers at a local hospital after he suffered a bad fall that left him with a concussion and a crushed vertebrae.

Jack Fedoranich joined the house in February, just before the pandemic hit. Mr. Fedoranich had just suffered a fractured ankle. He’d been in and out of hospital for various medical issues since shortly after his father died in April, 2019. At 57 years old, Mr. Fedoranich had lived his entire adult life with his father.

“It was the first time I’d been on my own in my whole life,” Mr. Fedoranich said. “Things didn’t go so good for me.”

Each roommate requires slightly different care, Mr. Usher said, but the result is that he can’t be away from the house for more than a few hours at a time. Once, after returning from a grocery store run, he found Mr. Nutt had taken another fall in the hallway.

In late June, after Mr. Nutt returned to the house from rehab after back surgery, Mr. Usher found the surgery had left him unable to shower on his own. He hadn’t had a a proper bath in nearly eight weeks, Mr. Usher said, and had developed an infection.

Though home health care nurses had visited Mr. Nutt in the days after he returned home, they hadn’t noticed the infection, Mr. Usher said.

After helping Mr. Nutt shower himself, Mr. Usher said he was left with no option but to send his roommate back to the hospital.

“I’m burning out,” Mr. Usher said. “I’m not trained for this. I do what I can, but there’s only so much I can do.”

“Brian and Irving should really be in an assisted-living home,” Mr. Usher said, but neither of them can afford the premium of a private facility and the waiting lists for a subsidized space can seem endless.

B.C.‘s seniors advocate Isobel Mackenzie said that’s a major challenge facing the province’s seniors.

The COVID-19 pandemic has shone a spotlight on problems with seniors care across the country that have been here all along, Ms. Mackenzie said.

Mr. Usher is providing essentially an informal version of seniors assisted living, Ms. MacKenzie said, which isn’t surprising because of what she called a serious shortage of subsidized assisted living spaces.

“We need to remember that there were problems before COVID-19, and there are problems created by COVID-19,” Ms. Mackenzie said.

In our rush to address the problems created by the virus, “we can’t forget the problems that existed before it,” she said.

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