‘I was at a breaking point’
Canada lacks a plan for its aging population, critics say. That leaves many exhausted caregivers little choice but to move their loved ones to long-term care, if they can find a space
When Crystal Nikolich reached her absolute limit, she put her mother in a long-term-care home.
That was a decision that haunts her to this day.
For five years, she’d been running back and forth between her home and job in Toronto, and Oakville, where she cared for a mother who had been diagnosed with dementia at 76.
But her problems had been mounting. Her mother Dagmar Nikolich, who had worked mostly afternoon shifts as a nurse in long-term care until she was diagnosed, had taken to getting up and wandering in the night.
Nikolich wasn’t set up to deal with her mother’s hygiene, and it was near impossible to get her mother in and out of the bathtub. Her bathroom didn’t have any of the assistive devices that would have made that easier.
There was a program at Sheridan College that provided activities during the day, freeing Nikolich to go to work, but she had to drive down in the morning to take her mother there and in the afternoon to bring her back.
There was home care too, but it was only a few hours a day and not exactly dependable — Nikolich says she discovered at one point the home-care workers had been giving her mother sleeping pills with her breakfast in the morning before Nikolich picked her up to take her to Sheridan.
When the day program no longer had room for her mother, it was the final straw.“I was at a breaking point, mentally and physically,” says Nikolich.
11 more residents have died of COVID-19 in long-term care, the province reported Sunday, bringing the total to 3,123 lives lost since the start of the pandemic
“I probably was mentally cracked at that point. It was too much, because I have nobody else to support me.
“I’m here on my own with my mom. My brother lives in North Carolina. And that’s it. That’s all the family we have.”
Across the country, thousands of families have wrestled with a similar situation: an older family member, no longer able to live on their own, whose needs have grown beyond the family’s ability to cope.
Those families are then faced with the difficult decision of whether to place that elder in a long-term-care home.
On the one hand, a family must admit they haven’t the capacity to properly care for an elder. On the other, the longterm-care homes tend to be understaffed, underfunded and institutional.
But choices are limited. And critics say most government attempts at reforming our care of the elderly are focused in the wrong direction.
Without the day program at Sheridan, Nikolich felt she had no choice but a long-term-care home for her mother.
In 2015, she managed to find her mother a bed at a home run by the Halton municipality.
But since then, she says, she’s watched her mother deteriorate from a lack of activity.
She’s watched her suffer one urinary tract infection after another, due to lack of hygiene care. And she’s watched with other caregivers through the ground floor windows as her mother and other residents regressed during the isolation of another COVID-19 lockdown.
She’s clear that she doesn’t blame the staff — like many homes, it’s woefully understaffed and underfunded. But she does blame a system that allows so many of these homes to be understaffed and underfunded.
“I totally regret it now,” she says of her decision. “Absolutely. One hundred per cent. I’d take her out of there in a second, if I could. And I know a lot of family members feel that way.”
Making the decision to put a family member in long-term care can be an agonizing process, says Katherine Bennett, the leader of the family council at Marochel Manor in Ottawa.
The council functions as a support group for families of residents of the long-term-care home.
Many older people have been to such facilities themselves to visit friends, she says, and they come away dreading a stay.
More than anything, it’s the loss of independence. The inability to get themselves a glass of water because they don’t have a kitchen. Or make a phone call. Or make their own decisions. Operating on someone else’s schedule.
But for many, it becomes the only option.
According to the Canadian Institute for Health Information, the majority of residents of long-term-care homes have some form of cognitive impairment, and that makes it difficult for them to live on their own or for their families to care for them.
Home care, funded publicly or privately, isn’t an option for many, as it offers only a few hours a day of help and only with specific tasks.
Retirement homes can be prohibitively expensive and depend on residents being more able to look after themselves.
That means, for many families, the only choice they are left with is a long-term-care home … if they can find a space.
In 2017, there were about 200,000 long-term-care beds across the country and a demand for an estimated 263,000, according to a Canadian Health Coalition policy brief. That means that tens of thousands of Canadians are on waiting lists and it can take from months to years before a bed becomes available.
So we have an option many people dread and an overcrowded system. Why is it, then, that long-term care has seemingly become the default option in our society?
To a large extent, that has to do with poor planning and ageism, says Laura Tamblyn Watts, president and CEO of CanAge, a national seniors advocacy organization.
“Canada has been unique in the OECD for not having a plan for aging and that’s not unique in a good way,” she says, referring to the 37-nation Organization for Economic Co-operation and Development.
In Sweden, for example, which is inching toward a near future in which nearly one quarter of the population will be 65 or older, government funding and subsidies mean seniors are offered ready-cooked meals that can be home delivered, daytime activities for the elderly and disabled, and transportation for those who can’t take public transit. Seniors with disabilities can receive at-home assistance around the clock, meaning many can stay at home for the remainder of their lives.
The reason care choices are limited for seniors in Canada, says Tamblyn Watts, lies not only in the fact that Canada doesn’t have such plans, but that older people are not considered the same way as the rest of the population.
At a governmental level, we tend to spend money more on younger people than older ones and, at a cultural level, we have some harmful ideas about what constitutes aging and the burden seniors place on society, she says.
One major reason families find themselves unable to cope with caring for their elders is increasing dementia. According to the Canadian Institute for Health Information, 87 per cent of residents in long-termcare homes had dementia or some other form of cognitive impairment.
As time goes on, Canadians will be caring for a larger and older group of seniors — more prone to dementia and increasingly with additional health problems — who will need more intensive care than they can provide at home.
CanAge recently produced a report titled “VOICES of Canada’s Seniors: A Roadmap to an Age-Inclusive Canada,” with a six-point data-based plan for dealing with aging in Canada.
In the section that deals with long-term care, the road map lays out some sobering facts.
By 2056, as the proportion of seniors continues to increase, Canada’s total demographic dependency ratio is projected to rise to 84 dependants for every 100 people of working age.
Also, per a 2012 Statistics Canada report, Canada has approximately four million self-identified family caregivers to an aging parent. A third of those spend 10 or more hours a week providing care, with most travelling 30 to 60 minutes to reach their care recipient.
Tamblyn Watts says governments in Canada have mostly placed their emphasis on the institutional model of longterm care, which is gradually being phased out for people with disabilities, for prisons, for children.
Those are big institutions, very medical, with a no-choice patient approach. They are also very expensive.
Long-term care can cost from $1,000 to $4,000 a month in Canada but, unlike retirement homes, governments might subsidize some or all of that cost.
Where Tamblyn Watts believes the emphasis should lie is in funding the means to keep seniors at home where possible — the more effective, preferred and affordable solution — reserving long-term-care facilities for the more dire situations.
And she believes more emphasis should be placed on alternative methods of long-term care.
“We haven’t fully pivoted into what we would call the Nordic model, where people live in congregate settings and homes. Sort of like eight to 20 people with support, not wearing medical uniforms. But they’re getting the care they need in smaller supportive environments. And it’s not about medical care as much as about person care,” she says. Crystal Nikolich can imagine an ideal world.
In it, she’d be able to take her mother out of long-term care and have her at home again. There would be a program like the one her mother used to attend at Sheridan.
She’d be able to drop her mother off, and there would be a day full of activities and care, and the staff-to-senior ratio would be low. And, at the end of the day, she could pick her mother up and take her home.
They’d be able to give her mother a shower, something she can’t currently do at home, and perhaps do her laundry. And perhaps, send her home with a meal when Nikolich came to pick her up.
Those are things she’s hearing about Acclaim Health’s new Dementia Care Centre, which is scheduled to open in Oakville in the fall.
Acclaim Health — which ran the day program at Sheridan that Nikolich’s mother attended — says once the new centre is built most of its funding, 85 per cent, will come from government sources and United Way funding. The rest will be covered through fundraising.
Community engagement director Melissa Cameron says providing showers for seniors isn’t part of the initial plan, but acknowledges that’s a widespread concern for caregivers.
But the thing that sets the new centre apart from other day programs — the thing that really appeals to caregivers such as Nikolich — is an on-site overnight respite program, which will allow seniors to stay at the centre for up to two weeks. During that time, they would get 24-hour care, just like a nursing home, and their caregivers would get some relief.
“That, to me would be the ideal because I can have her here at home, I could drop her off in the morning, pick her up at night, everything’s taken care of,” says Nikolich. “And now and then I can also have some breaks.”
Those breaks would be monumental for a lot of families worn down by the daily stress of caregiving.
“You’re just emotionally interwoven in their care every single day and looking after them,” she says. “I haven’t been on a trip or travelled, or done anything now in 10 years, but I could have a night off with my girlfriends. It gives you that emotional reset.
“My entire life is wrapped up in this. I’d like to have a little of it back.”
“Canada has been unique in the OECD for not having a plan for aging and that’s not unique in a good way.”
LAURA TAMBLYN WATTS PRESIDENT AND CEO OF CANAGE