Pulled from care homes during pandemic, these seniors thrived — highlighting 'urgent' need for change: expert

On a hot July day that was supposed to be one of her last, Mary Goertzen's grandchildren climbed one by one up a ladder to say goodbye through the window of her Winkler personal care home.

With visitor restrictions in place to stop COVID-19 from making its way into Salem Home, it was the only way most of Goertzen's family could see her for the last time.

"Everything about it was wrong," said Goertzen's granddaughter, Sharon Webb. "It was heart-wrenching to watch."

Days later, the care home's rules tightened again to only allow Goertzen one visitor every 12 hours. That meant her family would need to work in staggered shifts, keeping a meticulous schedule to make sure the 85-year-old wouldn't be alone.

But Webb saw another option. She and her husband decided to bring her grandmother home to live her last days with them — but what happened when she got there, Webb said, was nothing short of miraculous.

"Mentally, emotionally, spiritually, she just completely turned around," she said. "[She] just had this will to stick around."

About four months earlier, Lois Coleman Neufeld made the same decision for her mother, just as sites across Manitoba started restricting visits when the first cases of COVID-19 were detected in the province.

After one of their weekly Sunday outings — spent at church then at her house for lunch — Coleman Neufeld was walking her mother back into Parkview Place when a worker at the Winnipeg care home stopped them.

"[They] said, 'You can't come in. We're in lockdown,'" Coleman Neufeld said. 

"So we started asking questions about, 'Well, would we be able to come and visit tomorrow? Would we be able to take her out again?' And of course, it was new for everybody, so nobody had any answers."

In the meantime, she decided to bring her mom home to live with her. But over the next few days, it became clear what the new rules would mean for someone with dementia.

"I knew that if I left mom there, it would be like condemning her to a slow, painful death," she said.

And within a month of having her mom back at home, Coleman Neufeld said she also started seeing changes. The 91-year-old who could once only walk a few hundred metres before getting tired was now some days walking well over a kilometre.

It was a stark change from the woman living in Parkview Place who, unable to participate in most activities, was left in her room, discouraged and depressed.

"For the first time in years and years and years, I saw her cry. She's a very strong woman. She doesn't cry," Coleman Neufeld said, voice trembling. "So the question of taking her out wasn't a huge issue, in a way, to resolve. The biggest issue was, can I manage it?"

A difficult decision

While the improvements Webb and Coleman Neufeld saw were undeniable, so were the challenges they faced — and the sacrifices they had to make.

Webb, who is self-employed as a wedding planner, was able to take time off to become her grandmother's full-time caregiver.

And while she initially set her grandma up on a bed in her living room so she could spend her final days with a view outside, it eventually became clear that the arrangement needed to be more permanent. Webb and her husband moved to their basement while Goertzen moved into their upstairs bedroom.

Meanwhile, Coleman Neufeld was already on long-term disability, and her partner went down to part-time work to help her manage the new role. The shift also means she has less time for things that were usually part of her life, like camping, volunteering and seeing her grandchildren.

"I think acknowledging the difficulty is a really important step," said Coleman Neufeld, "and to always try to keep your pulse on the issues or the developments or how you're feeling, how the caregiver is feeling."

The decision to pull out of a care home

As care homes across Manitoba report COVID-19 cases, and as some report outbreaks and deaths, pulling family members out can seem like a good option — but not everyone is equipped to do that, said Michelle Porter, director of the Centre on Aging at the University of Manitoba.

"It is really important for people to be — if they are going to contemplate making this decision — that they are [as] informed as they can be in making the decision so that they are able to handle the load," Porter said.

There are many factors to consider before taking that step, Porter said.

Those include considering whether a family or individual can provide the kind of care needed, whether their home is safe and whether — if things don't work out — they'll be able to readmit their loved one to their place of choice.

Care home beds in the Winnipeg area, for example — where Coleman Neufeld's mother's former care home is — are only held for social leaves, not full discharges, said a spokesperson for the Winnipeg Regional Health Authority (though clients are given a long-term care contact who will try to help facilitate readmission to their facility of choice if a bed is available). 

In the Southern Health region — where Webb's grandmother's former care home is — social leaves are allowed for up to 21 days, a spokesperson said, but after that the person would have to restart the panelling process to be placed back in a care home.

The pandemic has also shone a light on longstanding issues in long-term care, said Porter, including shared rooms that have made infection control nearly impossible and inadequate staffing that means many residents aren't getting the level of care they need.

While there's no comparing the care a person would get in a facility to the one-on-one attention they might get at home, the current recommendation of 3.6 care hours per resident should be increased to 4.1, she said.

"We certainly know that staffing should be changed so that we can have more full-time positions that are better paid that would enable people to be working in one place, building relationships with residents," she said.

"If they're running from one place to another because they can only get so many hours at each place, that's obviously not good for the staff, but it's also not good for residents."

And while Manitoba now seems to be taking steps to address some of its more glaring issues within long-term care, it remains to be seen whether those efforts will be adequate, said Laura Tamblyn Watts, CEO of CanAge, a national seniors advocacy group.

"Do I believe that the Manitoba government, over the course of this first wave and now entering the second wave, knows the ingredients in the recipe for change? I do. The question is: will they actually move quickly enough?" she said.

"Every day that these issues are not addressed are days that lives are lost. It is, in my view, the most urgent situation that we have in Canada in the time of COVID-19."

Politicians 'shrug their shoulders'

Pulling their family members out of care didn't solve everything: Webb's grandmother still sees a palliative home care nurse and gets regular care for bedsores, and Coleman Neufeld's mother still requires help with things as simple as eating. But the thought of what may have happened otherwise is enough to make them grateful they were in a position to make that choice.

"Had we not pulled my grandmother out, I know she would not be here today. And I think it would have wrecked all of us," Webb said. "I think we would have just all been so wounded by that, I don't know as a family where we would be today."

Coleman Neufeld, whose mother lived in a care home that has since become the site of Manitoba's deadliest COVID-19 outbreak, is also haunted by what might have been.

"I think about it all the time. When the news came out, I felt so bad for the staff members and I felt bad for the families as well as the residents, that they're being isolated, that families feel abandoned, not being able to do what they feel is their responsibility to care for their parents," she said.

"I think I would have died.... I can only imagine the angst that families are feeling."

Both Webb and Coleman Neufeld are frustrated — even angered — by what they see as a general indifference from the people who are supposed to be solving problems in long-term care.

"I don't have any easy solutions, but neither do I hear discourse in amongst the politicians or in the care home setting," said Coleman Neufeld. "They mostly shrug their shoulders. 'Well, what can you do?'"

Reflecting on stories she's heard from families across the province, Webb agrees.

"I don't think the general public has even a glimpse of the things that are happening right now," she said. "And if we knew, nobody would want to put their loved one in a care home."

This story was possible in part thanks to Manitobans who filled out CBC's survey on personal care homes and health-care facilities. In it, we asked family members, employees and others to send us their top concerns and questions about care during the pandemic.