How COVID-19 has changed the way families think about long-term care in Ontario

This is part of Global News’ special series Care Gone Wrong: Inside Ontario’s nursing homesClick here to learn more about the series

It was a Friday night in mid-April, during the first wave of the COVID-19 pandemic, when Marie Tripp noticed her 89-year-old mother was vomiting in her bed at the Orchard Villa long-term care home in Pickering, Ont.

Tripp was watching her mother Mary Walsh through a camera she had installed in her room in 2019, after she suspected that something seemed off at the facility. 

For instance, Tripp noticed bruising on her mother’s forearms, which she was told was due to improper transferring. Before that, she said her mother’s hair went unwashed for about two-and-half months.

“I needed to know what was going on,” Tripp told Global News Radio 640 Toronto. 

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“I just didn’t want to catch anybody doing anything. It was just to make us feel better that we could see mum at any time.”

Read more: A look at what has gone wrong in Ontario long-term care amid the coronavirus pandemic

After Tripp saw her mother vomiting  that one April evening, she called Orchard Villa’s nursing station to try and get someone to assist her. She watched a staff member go into her mother’s room to help her change, reposition and clean up, and decided she would wait about an hour before she called back to see how her mother was doing.

“It was at that time that I found out my mom was COVID-0positive,” she said. “Nobody had told me anything. So I lost my mind, and they reassured me that mum’s vitals are OK — everything is fine.”

Three days later, on Monday, April 20, Mary Walsh passed away.

“She was a strong, strong woman,” Tripp said of her mother. 

“She always treated people with respect, dignity, compassion, and she never judged anybody. And she loved us dearly — you could see her smile in her eyes when the family would gather.”

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Mary Walsh, 89, passed away after contracting COVID-19 at Orchard Villa in Pickering, Ont., in April.
Mary Walsh, 89, passed away after contracting COVID-19 at Orchard Villa in Pickering, Ont., in April. Supplied

In Ontario, before the COVID-19 pandemic hit and forced long-term care homes to shut out nearly all visitors, Tripp went to see Walsh every day at Orchard Villa. She said she and her two daughters would have been considered her mother’s caregivers, who brushed her teeth, took her for walks and made sure she was being looked after appropriately.

If caregivers were allowed into long-term care homes in April, Tripp said she believes her mother’s outcome could have been different. She said she and her daughters would have changed her mother’s hearing aid batteries, helped her eat, move her legs and brush her teeth.

“Whether she would have survived COVID or not, I can’t say that, but I know her level of care, comfort and quality of life would have been 100 per cent better with family by her,” Tripp said.

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“Without human contact, my mom declined so fast.”

Mary Walsh throwing plastic axes in her granddaughter’s backyard in summer 2019. Tripp said her mother loved playing the game and was “pretty good.”
Mary Walsh throwing plastic axes in her granddaughter’s backyard in summer 2019. Tripp said her mother loved playing the game and was “pretty good.”. Supplied

In an email to Global News, Candace Chartier, the chief seniors’ advocate and strategic partnerships officer at Southbridge Care Homes, which owns Orchard Villa, said the company can’t address specific details pertaining to residents due to privacy reasons.

However Chartier said all residents are assessed by a physiotherapist to determine their best mode of transfer, which is laid out in their care plan. She also said all staff are trained on each resident’s care plan.

“Staff provide daily personal care and grooming to the residents,” Chartier wrote. “Residents’ hair is washed weekly or unless otherwise indicated (in) the care plan.”

Click to play video '‘Care Gone Wrong’ highlights flaws in Ontario’s long-term care and nursing homes' ‘Care Gone Wrong’ highlights flaws in Ontario’s long-term care and nursing homes

‘Care Gone Wrong’ highlights flaws in Ontario’s long-term care and nursing homes

According to Chartier, the company’s infection prevention and control lead “immediately” calls and informs residents’ power of attorneys if they receive a positive novel coronavirus test result and shares the result with registered staff in the affected home areas

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“We take all concerns regarding our homes seriously,” Chartier said. “Our residents are at the heart of everything we do, and we remain committed to ensuring that all of the concerns are appropriately addressed and that our residents receive a high standard of care at Orchard Villa.”

***

In March, in response to the COVID-19 pandemic, the Ontario government issued a directive that mandated long-term care homes to close to visitors, except for those visiting a “very ill” or palliative resident or those performing “essential” support services. This move implemented what was typically referred to as an “iron ring” around Ontario nursing homes, keeping almost all visitors out.

In June, the Ontario government began to allow visits to long-term care homes under strict guidelines. When the second novel coronavirus wave hit the province in the fall, the government modified its policy for visiting nursing homes, allowing up to a maximum of two essential caregivers into facilities, which wasn’t previously permitted during the first wave.

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The province’s “iron ring” around long-term care facilities has been criticized by advocates who’ve argued the policy didn’t work in controlling COVID-19 outbreaks and also contributed to adverse mental health effects among seniors who were in isolation.

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“It was a devastating decision for older people who were in long-term care,” said Laura Tamblyn Watts, CEO of CanAge, Canada’s seniors’ advocacy organization.

“Mental health was enormously affected — depression, anxiety and confusion … What we necessarily didn’t predict was the physical decline, so we have cases of people who were essentially starving to death because they were not being either fed or they weren’t getting the cues to eat.”

Tamblyn Watts said it’s important to limit general visits into nursing homes to stop the spread of the novel coronavirus, but that essential family caregivers should be allowed into facilities and provided with the proper personal protective equipment (PPE), training and support.

“There’s the myth that family caregiving ends and the role ends when someone goes into long-term care, but it doesn’t have to and it often doesn’t,” said Lisa Levin, the CEO of AdvantAge Ontario, a non-profit seniors care association.

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“Family members can play a very, very important role in being there to care for their family members in homes. They help them with eating, they can help them with dressing. They’re the ones often that people are most comfortable with.” 

Since there aren’t enough staff in the long-term care sector, Levin said, losing family caregivers results in putting more pressure on nursing home employees and greater stress on residents.

At a press conference on Nov. 9, Ontario’s chief medical officer of health, Dr. David Williams, said putting an “iron ring” around seniors at the beginning of the pandemic was the “right thing to do” at the time. 

“When we have COVID in the community, inevitably it spreads into congregate settings,” Ontario’s associate chief medical officer of health, Dr. Barbara Yaffe, said at the news conference.

“The outbreaks are being controlled quicker this time, and we’re doing a lot of work around infection prevention and control, human resources, testing, control on visitors, keeping in mind the balance. We don’t want to go too far in terms of control and have negative consequences for social isolation, mental health and so on.”

Read more: Fear, stress factors in staffing shortages at Ontario’s long-term care homes amid COVID-19 crisis

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Since the COVID-19 pandemic ravaged Ontario’s nursing homes, emerging research has suggested that Canadians may be thinking differently about putting their loved ones into long-term care when they age.

In a survey conducted in July, about 60 per cent of Canadians, and almost 70 per cent of Canadians age 65 and older, reported that the novel coronavirus pandemic has changed their opinion on whether they’d arrange for themselves or a loved one to live in a nursing or retirement home.

The same survey found 91 per cent of Canadians of all ages, and almost 100 per cent of Canadians age 65 and older, plan on supporting themselves to live safely and independently in their own home for as long as possible.

“I think what we’ve really seen is that the public’s confidence in our long-term care system has been greatly shaken,” said Dr. Samir Sinha, the geriatrics director at Sinai Health and University Health Network, as well as the health policy research director at Ryerson University’s National Institute on Ageing, one of the organizations behind the survey.

“This wasn’t a system that was being well-supported, and it remains a system that has a lot of vulnerabilities, which puts the residents in them at significant risk.”

Receiving homecare, where a professional caregiver attends a person’s home to provide them with the help that they need, can be one alternative to living in a long-term care facility. 

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According to a recent report, 78 per cent of Ontarians said they’d rather receive homecare for themselves and their loved ones over care in a nursing home.

“COVID has driven a lot of people’s thoughts about this because it’s very sad what’s been happening in long-term care,” said Sue VanderBent, the CEO of Home Care Ontario, an organization that represents homecare providers in the province.

“Everybody knows the safest place … to be is at home — it’s not going to places where we would congregate.”

***

It was close to midnight on April 19 when Tripp got the call from Orchard Villa that her mother wasn’t doing well after being diagnosed with COVID-19. It was then that Tripp said she was coming to see her mother, at which point she was told that she needed to follow outbreak protocol.

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When Tripp arrived at the facility just before midnight, she said staff provided her with personal protective equipment (PPE) before she went to visit her mother one final time. Tripp then stayed with her mother for about six-and-a-half-hours, until Walsh took her last breath.

“I kissed my mum through my mask, I rubbed her face with my gloved hand,” Tripp said. “She needed warmth and comfort from her family. Instead, I’m gowned up with gloves, a mask, a shield, and her granddaughters and great granddaughter are watching through a camera.”

In hindsight, looking back at Walsh’s one year at Orchard Villa, Tripp said the experience was “horrible.” If given the option, she said she’d prefer her mother was cared for at home, with the help of the necessary caregivers and agencies.

Marie Tripp, now 63, pictured with her mother Mary Walsh after coming back from Niagara Falls.
Marie Tripp, now 63, pictured with her mother Mary Walsh after coming back from Niagara Falls. Supplied

In 1995, Tripp lost her sister Eileen Walsh to HIV and AIDS. At the time, Eileen was able to receive palliative care at home with the help of Toronto’s Casey House, which specializes in HIV/AIDS care.

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“That was such a gentle, loving, compassionate passing for my sister that I thought I’d be able to offer that to my mom in her time,” Tripp said. “She didn’t get that.”

Read more: Coronavirus: Orchard Villa families detail conditions at facility before long-term care commission

Before being admitted into long-term care, Tripp’s mother received publicly-funded homecare through the Ontario government, although Tripp said her mother only received four hours of care a week, which was just enough time to get her showered.

“Because I happened to live in the home, I was told, ‘Oh, you can do more,’” Tripp said. “I have fibromyalgia, I have arthritis, I have IBS … I did what I had to, but I could have used more help.”

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While there’s a publicly funded homecare system in Ontario, it’s not currently robust enough to provide around the clock care to people who don’t require end of life care, according to VanderBent.

“Right now, across Canada, we have over 400,000 Canadians who actually tell us they have unmet homecare needs,” Sinha said. “If you can’t get enough care to support yourself to stay in your own home, where are you going to end up?”

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In a recently-released report, Sinha and his team propose establishing a program called Virtual Long-Term Care @ Home, which they say would address the growing nursing home waitlists and allow people to stay at home longer. 

The proposed program would see Ontario Health Teams, health care organizations and providers come together to provide the right mix and type of care to those eligible for long-term care, whether that’s community support services, homecare, community paramedicine or local primary care.

Click to play video 'New Global Radio series ‘Care Gone Wrong’ investigates Ontario’s longterm care homes' New Global Radio series ‘Care Gone Wrong’ investigates Ontario’s longterm care homes

New Global Radio series ‘Care Gone Wrong’ investigates Ontario’s longterm care homes – Nov 23, 2020

According to the report, the new model could also save the Ontario government “significant” costs of anywhere between $212,259 and $268,369 for every nursing home bed it might no longer need to build or upgrade.

“We’d be crazy not to actually deliver more care in people’s homes,” Sinha said. “It actually aligns more with what people want and, frankly, will actually take pressures off other parts of the system.”

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While some see homecare as a possible solution to Ontario’s nursing home crisis, Dr. Amit Arya, a palliative care physician who works in long-term care, cautions against only focusing on homecare, saying seniors care needs to be improved across the board

“Health care shouldn’t be a competition — it should be a continuum,” he said. “It doesn’t matter if it’s a hospital or a clinic, a long-term care facility or homecare, we need to improve seniors care everywhere.”

Read more: How to prevent the spread of COVID-19 and other infections at Ontario’s long-term care homes

In some cultures, however, putting loved ones in nursing homes isn’t an option — and doing so can be heavily stigmatized.

For example, in traditional cultures, there is a focus on family-centric environments, Arya said.

“In Eastern cultures, traditional cultures, man and woman ha(ve) a duty to care for their parents,” said Luma Simms, a fellow at the Ethics and Public Policy Center in Washington D.C. 

“The stigma comes from the pressure and the expectation that you are to care for your parents the way they cared for you.”

Additional pressures can also arise because some cultures face barriers when it comes to accessing Ontario’s long-term care system.

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“These places are not designed to be culturally safe,” Arya said. “They’re not designed to actually provide appropriate and equitable care for people who face, for example, language barriers or cultural barriers within the system.”

Part of that, he said, is likely because long-term care homes are designed as “big warehouses” that house hundreds of people who receive care that’s “regimented and rationed,” as opposed to care that’s individualized.

“Across our health care system, we have a system that’s designed with a one-size-fits-all approach,” Arya said.

“The system is extremely challenging to navigate for anyone, and it’s much worse for people who face issues around discrimination and racism.”

***

Looking ahead, Tripp, 63, said she’s contemplating signing an assisted suicide waiver if she becomes too sick to live on her own in her elderly years. After witnessing what happened to her mother, she said she’d rather “die with dignity” than go into a nursing home.

“There is no way I’d want to go in and be treated the way my mother and so many other seniors were,” Tripp said. “How can any Canadian offer this to a loved one?”

Read more: Coronavirus: Families allege neglect at Pickering, Ont. care home where 70 died, call for police investigation

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While Walsh passed away after contracting COVID-19 more than seven months ago, Tripp continues to speak out for other families who have loved ones in long-term care.

“My mom is gone — her story might have ended with Orchard Villa, but I’ll keep her voice alive and fight for all other seniors,” Tripp said. “I’m silent no more.”

Mary Walsh: March 26, 1931 to April 20, 2020
Mary Walsh: March 26, 1931 to April 20, 2020. Supplied

— With files from Global News Radio 640 Toronto’s Dave Woodard, Sandy Salerno and Sheba Siddiqui

© 2020 Global News, a division of Corus Entertainment Inc.

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