Long-term care facilities are the only option for many. What happens when they fall short?

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WATCH: Who will be held accountable for the crisis in long-term care homes? – May 27, 2020

Hundreds of long-term care facilities across Canada have struggled with outbreaks of the novel coronavirus, leaving a string of deaths and communities shaken.

In response to the overwhelming outbreaks in Ontario and Quebec homes, the Canadian Armed Forces were deployed to the worst-hit long-term care facilities to help control the spread of COVID-19, the disease caused by the virus.

What the soldiers saw ⁠— including poorly trained staff, cockroaches, flies, rotten food and residents left in soiled diapers or crying out for help for lengthy periods, according to reports ⁠— led to the launch of formal investigations in both Ontario and Quebec.

Now, experts worry Canadians won’t feel confident accessing long-term care for aging or sick family members, but there aren’t really alternatives.

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READ MORE: Military teams raise concerns about conditions at Ontario care homes

Kristy S. is one Canadian who has had to make the difficult decision to place a family member in a long-term care facility. Her mother was diagnosed with early onset Alzheimer’s disease in 2014, and she says it was her only option.

At first, Kristy and her older sister were able to care for their mother at home with help from both government-provided and privately hired personal support workers (PSW).

However, their mother’s condition was rapidly deteriorating. With Kristy, a full-time student, and her sister, mother to two young children, the situation quickly became untenable. Not only was it expensive to pay for extra PSW (which would’ve cost somewhere in the $20-25 per hour range), they weren’t trained to care for someone with Alzheimer’s.

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The sisters put their mother’s name on multiple wait-lists for long-term care facilities in the area, and she was accepted to one in 2018.

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“It’s not an easy thing, giving up your loved one and institutionalizing them, but it had to be done,” Kristy said.

That Kristy felt like she had no other option than to move her mother into a long-term care facility is not unique ⁠— in fact, it’s practically by design.

In Canada, there are three main types of long-term care: publicly funded home care, privately purchased home care and institutional long-term care. Long-term care homes can be publicly funded, private for-profit or private not-for-profit facilities.

There are a few problems with this structure, according to Audrey Laporte, director of the Institute of Health Policy, Management and Evaluation at the University of Toronto.

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The first is that long-term care falls outside of the Canada Health Act, which means there’s “variation across provinces” in terms of how the facilities are run, Laporte said. This can lead to inconsistent levels of care depending on where you’re located.

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The second is that the quality of care a person can access is largely dependent on what they can afford.

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“To some degree, people that have additional resources can purchase supplementary care,” Laporte said.

“In some nursing homes, people pay to have additional care workers to come into the home and provide care … and people who have means can purchase private duty nurses, which allow some people to stay in their homes much longer.”

READ MORE: Canada’s nursing homes worry coronavirus outbreak will mean residents ‘dying alone’

The third problem is, for people in a dire situation seeking around-the-clock care — like an extremely frail, elderly person or someone with a degenerative disease like Alzheimer’s ⁠— the only feasible option is often long-term care.

For families like Kristy’s, home care is typically not an option because publicly funded home care usually only covers a few hours per week, depending on your province, and costs for private home care are extremely high.

“That’s why the answer is not to ask families to figure out how not to place their loved ones into these homes,” Laporte said.

“The mandate should be (to) find out how we can ensure that long-term care facilities are providing the highest quality care possible.”

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Families backed into a corner, expert says

Right now, there’s an assumption in Canada that every family has “informal caregivers” available, Laporte said.

“Families continue to carry the heavy burden of informal care,” she said. “But right now, we have a relatively larger population of people in their advanced years who need care and a smaller population of able-bodied people who can provide that care.”

Combine that with the reality of caring for someone with a disease like dementia, which requires specialized training and constant supervision, and problems are bound to arise.

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“If there wasn’t a bed available by the time I graduated, I would’ve had to put my career on hold,” Kristy said.

Laporte says that families feel backed into a corner, with long-term care facilities as their only option. For this reason, the government needs to offer more support.

“There’s going to be the issue of differences in who can bear the cost, who can afford not to work to instead be a caregiver … which leads to differences by socio-economic status,” Laporte said.

“Eventually, you’ll get to the point where the person needs more intensive forms of care … and that’s where the institutional sector is needed.”

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Even prior to the COVID-19 pandemic, Kristy was skeptical about her mother living in a long-term care facility. In addition to paying for a private PSW to go into the home and supplement care, Kristy and her sister go in four times each week to provide her mother with even more support.

“There are definitely short-staffing issues,” Kristy said.

“(My mother) gets two showers a week, and limited time (with a PSW) to get ready in the morning. Sometimes I would come in, and my mom wasn’t wearing a bra or … it wasn’t on correctly.”

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After the military reports published in May amid the coronavirus outbreak, Laporte anticipates more families will be hesitant to access the long-term care offered by these institutions in the future.

READ MORE: Ontario to hold independent commission into long-term care home system

However, they will have few other options ⁠— especially if they have a lower income or can’t afford to leave the workforce and become a caregiver.

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“The COVID-19 crisis shone a light and … amplified gaps in the system that have existed for some time,” Laporte said.

Finding solutions

The first way care can be improved is to include long-term care facilities in the Health Act, making them subject to regulation that would make care more consistent across the country. However, failing that, there are several changes individual provinces can and should make as soon as possible, Laporte said.

A key area in need of improvement is staffing. In Canada, the number of personal support workers in each home is relatively low, resulting in fewer hours of care for residents and over-worked, under-supported for staff.

“I think we’ve got some low-lying fruit here, in the sense that we know we need to enhance the human resource investments that are made,” Laporte said.

“What skills are needed to care for people who are in long-term care homes? What kind of training and support are we providing them?”

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Pre-pandemic problems with Canada’s long-term care homes

Dr. Samir Sinha, director of geriatrics at Sinai Health System and the University Health Network in Toronto, agrees ⁠— employees need better wages and more benefits.

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In Ontario, long-term care workers are also not receiving enough masks or the same employment support when it comes to taking sick leave compared to doctors in a hospital, Sinha previously told Global News. This can put more pressure on workers to come in even if they feel unwell.

“What would you do if you’re a low-paid worker… where if you don’t show up to work, you don’t get paid? And you have to put food on the table, what would you do?” he said. “And that’s the sad reality.”

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Since the lockdown started in mid-March, Kristy hasn’t been able to see her mother, and per the provincial emergency order, her privately hired PSW hasn’t been able to enter the home.

This means her mother is only accessing the few hours of care per week provided by the home, and she fears her mother is lacking care.

“The residents are being isolated and neglected without family being able to go into the home,” Kristy said.

“I don’t know if these issues will be addressed in my lifetime, by the time I need to be in a home, but I hope they do.”

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Questions about COVID-19? Here are some things you need to know:

Symptoms can include fever, cough and difficulty breathing — very similar to a cold or flu. Some people can develop a more severe illness. People most at risk of this include older adults and people with severe chronic medical conditions like heart, lung or kidney disease. If you develop symptoms, contact public health authorities.

To prevent the virus from spreading, experts recommend frequent handwashing and coughing into your sleeve. They also recommend minimizing contact with others, staying home as much as possible and maintaining a distance of two metres from other people if you go out. In situations where you can’t keep a safe distance from others, public health officials recommend the use of a non-medical face mask or covering to prevent spreading the respiratory droplets that can carry the virus.

In situations where you can’t keep a safe distance from others, public health officials recommend the use of a non-medical face mask or covering to prevent spreading the respiratory droplets that can carry the virus.

For full COVID-19 coverage from Global News, click here.

⁠— With files from Global News’ Olivia Bowden

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