Two weeks after the pandemic saw long-term care homes go into quarantine in March 2020, Barbara Heuman sat on a lawn chair outside her husband’s room. She could only see him through a window but she’d seen enough and the next day she began the process of bringing him home.
“It was a little bit scary, but I knew it would work out. I just had to be positive and do what I had to do for what was best for him,” she says.
Heuman essentially did what many Canadians vowed to do once quarantines and deaths became synonymous with LTC. The growing disaster led to a generational re-think about how we treat our seniors.
The Ottawa Hospital developed a decision aid online that allowed families to understand the risks of bringing seniors home. It asks questions related to the amount of care needed for living conditions and health with the goal of painting a realistic picture of everyone’s needs. The aid was used over 30,000 times but it’s unclear how many people decided to pull their loved ones out of LTC as a result because no one is collecting statistics on the issue.
“I certainly have heard stories in many provinces across the country where families have pulled their loved ones out of care,” says geriatric care expert Dr. Samir Sinha at Toronto’s Mt. Sinai Hospital.
“And it could be in the dozens, that could be in the hundreds. I don’t necessarily think it’s in the thousands.”
Dr. Sinha surmises many Canadians discovered it was far easier to pull seniors out of LTC homes in theory than in practice. Despite the fear of COVID-19, they just weren’t able to provide the care their loved ones needed. Issues like mobility and dementia proved too difficult to overcome.
“These are those things where you don’t want people to discover issues like this after they’ve actually left the home,” he says. “You want them to go in with eyes wide open.”
It certainly wasn’t easy for Heuman. She had tried to care for her husband Frank Carlucci several years ago after he suffered a severe brain injury. But ultimately, she discovered she wasn’t up to the task and found a nearby retirement home where he could get regular physiotherapy.
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“I honestly thought this is where he’s going to be for the rest of his life,” she says.
Carlucci ultimately recovered enough that Heuman was willing to try it again after the pandemic hit. But she says what she found was a system where the only way seniors ever left LTC was when they died. She says the directors of Carlucci’s home told her that if he left, he’d lose his bed.
Undeterred, she brought Carlucci home. And a few months later, the Ontario government (and other provinces as well) decided that anybody who pulled a senior out of a home because of COVID-19 would go to the front of the line for an LTC bed should they decide to return. The caveat is that the offer is only good until the pandemic is over, but when Global News asked the ministry of long-term care how it would determine that date, it sidestepped the question.
“If Ontario basically says as of Sept. 1, the pandemic is now over as far as far we’re concerned,” says Dr. Sinha, “then after that period you’re not protected under these changes.”
Almost 16 months after the first LTC homes went into quarantine, demand for beds has dropped considerably. Ontario’s waitlist has stayed relatively level with 39,000 seniors waiting for a bed. Dr. Sinha says that number should be much higher, considering 8,000 beds were eliminated to get away from putting too many seniors in the same room.
“So a lot of people, I think, have absolutely lost faith in our long-term care system and its ability to keep people safe, especially during a pandemic,” he says.
Seniors organizations have seen a shift as well. Bill VanGorder of the Canadian Association of Retired Persons (CARP) says the group believes 20 per cent of people in LTC would still be at home if there was appropriate community support.
“Long-term care facilities are important, but it should be restricted to those people who, for no other good reason, just can’t get the care they need unless they’re in a hospital-like facility, which some of these are,” he says.
Vancouver’s Susan Danard was asking that very question when her family determined her mother Audrey could no longer live alone. The 81-year-old was in a large house on Vancouver Island and was two weeks from moving into a retirement home when the pandemic hit.
When they decided not to take the chance, they moved to plan B, which involved selling Audrey’s home, as well as the home Susan shared with her husband, and combining assets to move into a more senior-friendly home in North Vancouver.
“It’s enormously difficult taking care of people,” Danard says. “And you know, not every family can do it. So we were lucky that it came together. But I mean, there really was a lot of luck. And also the goodwill of my husband, which I have to say is extraordinary because not every husband would say, I want to live with my mother-in-law. But he was OK with it.”
The Danards know everyone is not as fortunate as them. From a health and financial perspective, they were able to make it work.
And despite a learning curve, Susan says it was the only decision her family could make.
“For me, it was just a time to really reflect,” she says.
“At the end of the day, you know, what do I want to accomplish in my life? And to be honest, if I didn’t take care of my mom, nothing else would have mattered.”