“Please don’t let her get sick when she can’t see me.”
Tara Moriarty tweeted the sentence, along with a smiling photo of her 76-year-old mom, in mid-March. Moriarty’s mom had just moved into a Toronto seniors’ home and days later the residence banned visits to reduce the pandemic’s spread. Seeing coverage of COVID-19 cases in Ontario’s long-term care homes worried her, but her mother’s progressing dementia required care that overwhelmed Moriarty and her partner. “She’s safer there than with us,” they believed.
Two weeks later, that no longer rang true for the couple. Public health officials were raising the alarm about failings in the long-term care system. Horrific reports of COVID-19 seniors’ home outbreaks were rising. That included an emerging story from Quebec, where 31 people reportedly died in less than a month in Résidence Herron in Dorval.
“At that point, I was like, ‘It’s going to happen everywhere, that’s it,’” she told HuffPost Canada.
The couple drove for nearly 10 hours in early April to take Moriarty’s mom out of the residence and bring her to their Sudbury, Ont., home.
“Should I take my mom or dad out of their care home?” is a question many frightened Canadians with parents in long-term care homes and assisted-living facilities are losing sleep over, for good reason. The elderly are among the most vulnerable for developing serious and deadly coronavirus complications. In a daily briefing last week, chief public health officer Theresa Tam said that almost half of the COVID-19 deaths in Canada (the toll then was 760; as of publication, 1,831 have died) happened in long-term care homes. The numbers are especially high in Quebec and Ontario, the latter of which may be underreporting, a Toronto Star investigation found.
Watch: Tam says number of deaths in long-term care homes expected to rise. Story continues below.
Toronto-based writer and designer Kate Atherley also has a parent with advanced dementia. Her father is in his late 80s and lives in a long-term care home in Oakville, Ont. Staff put him in isolation after he developed a fever last week.
“It’s the helplessness of it all,” she said, when asked how her family has been coping since they found out about his condition. “There’s absolutely nothing we can do.”
Dr. Samir Sinha, director of geriatrics at Toronto’s Mount Sinai Hospital, sympathizes with Canadians wracked with worry. He told HuffPost Canada that those who have experienced a COVID-19 death are “just in agony over feeling helpless about how they couldn’t help their loved ones.”
So should every Canadian with a family member in care rush like Moriarty to remove them? That’s not the case, say Sinha and UBC geriatric medicine professor Dr. Roger Wong. Both geriatric care experts cautioned against blanket recommendations and stated that the nation’s first priority should be to make care homes as safe as possible.
Wong is of the opinion that the focus needs to be on optimizing services, as well as standardizing across both public and private care sectors. He hopes that families whose seniors stay in long-term care can stay connected, as physical distancing may leave the elderly feeling isolated. Loneliness is an invisible risk that can negatively impact a senior’s overall health.
For Sinha, it is important to recognize that care home residents have rights and should feel empowered to choose to leave if they want to.
“If a resident says, ‘Thank you for trying to make this as safe as possible, but I’d rather go and live with my loved ones,’ we have to respect their decision,” he said. “We shouldn’t be paternalistic to families and say, ‘No, you have to stay here.’”
With no easy answers, making the tough call requires informed choices by the senior or their legal substitute decision-maker, which are usually their adult children.
Here’s what Canadians should know before discharging a parent:
Directives for care homes are changing
Although she describes her mom’s residence as a “good place,” Moriarty was partially motivated to discharge her mother because of flaws in the care system. A staff member asked for her help finding information on national pandemic-specific directives they worried hadn’t reached them. She also wanted to ease the burden on the home’s staff, freeing up time to care for other residents.
The limits of the care system, which include personal protective equipment shortages and dangerous levels of short-staffing, continues to be called out by advocates. Both Moriarty and Atherley believe the staff at care homes should be paid more, on top of hazard pay.
Attempts by public health officials to prevent rising numbers of deaths include the roll-out of new federal guidelines last week for long-term care homes.
Different provinces are updating their COVID-19 prevention strategies in these residences; Ontario recently eased its re-admission policies so discharged residents can return more easily.
While staying in touch with a care home’s staff on their safety protocols would be ideal, real-time updates aren’t realistic in many scenarios. It may be best for families themselves to stay aware of their province’s recommendations by following their area’s long-term home coverage or watching the provincial health authority’s regular COVID-19 briefings, available on local TV and online.
Ottawa researchers made tools to help families decide
The growing confusion about whether removal is safe led Sinha, who is part of a national task force on long-term care homes, as well as Ottawa researchers to develop a decision-making aid released last week. The support tool is in the form of a questionnaire for seniors in long-term care homes in Ontario, legal substitute decision makers and family members who would be affected by the decision. A similar decision aid for seniors in retirement homes is also available.
Both tools contain common pros and cons to removal, as well as questions about the senior’s care needs and how well COVID-19 can be prevented wherever they stay.
There’s no right or wrong answer to any of the questions posed, which include “Can someone be home 24 hours a day to check for safety and wellbeing?” and “Is there a call button or room monitor to call for help?” Instead of a scoring system, Sinha hopes the tools can guide families to assess their own abilities to care for seniors.
Families need to be honest with themselves
There’s not an hour in Moriarty’s day that isn’t spent caring for others. The University of Toronto professor works tirelessly to fight COVID-19 in her role as one of the country’s leading infectious disease researchers and in volunteer efforts co-ordinating a COVID-19 response database. All this happens around the life she’s built around caring for her mom’s needs, who needs constant supervision; Moriarty cleans her and helps her use the bathroom. Her partner stopped working to assist with primary caregiving too. Two people aren’t enough to meet all of her mom’s care needs, so Moriarty pays students to help out.
While the days are gruelling and her mother often gets bored (which the couple curb with daily walks and board games), Moriarty says her family is fortunate enough to be able to sustain home care, having done it for years. If her mother’s needs were more severe, home care may not have been doable.
“If my dad was in this situation, there’s no way we could do that [bring him home],” she said. Her father passed in 2017. On top of dementia, he had complex cardiovascular and kidney issues.
But bringing parents home isn’t possible for all families
Even if they wanted to, removal isn’t an option for many families, Wong points out. In many households, cramped spaces make physical distancing or self-isolation impossible. Many accessibility needs, like mobility devices or assisted technology, may not be available at home either.
“What are you going to do, if you have children at home who may be asymptomatic carriers?” he raises as another issue. “People are well-intentioned and we all want the best for our seniors, but in a pandemic we need tailored solutions.”
What’s more, Wong adds that COVID-19 stressors may magnify barriers: Families may be financially strapped because of pandemic-related job loss.
Before her father fell ill, Atherley had decided against removing him from the care home. Her father, whose condition has since improved, is unable to dress or wash himself, needing supervision and a walker to get around. She and husband can’t afford to care for her dad nor do they have space to adequately house him.
“In a care home, there’s activities, group meals, people to interact with, and people to check on your emotional welfare. That’s hugely important,” she said. “It’s distressing. [Keeping him in the care home is] not an option that we can feel wildly confident about because of the lack of information. But what choice do we have?”
There are trade-offs either way
Atherley doesn’t talk to her father every day, as arranging communication has been challenging. Her father’s residence is short-staffed and she knows how long it would take to get updated as much as she would like to.
“Honestly — this would sound terrible — but I would rather they spend the time nursing them than answering my phone calls,” Atherley said. They’re in touch regularly instead.
Whether a family member is discharged or stays, there are risks taken with either decision, Sinha says.
While Atherley has traded her father’s relative safety for occasional radio silence, Moriarty has sacrificed a lot of her free time and energy to take care of her mom. Having a demanding job as well means she and her partner are constantly exhausted and always running on empty.
Whatever decision a family makes, Moriarty stresses the importance of not feeling guilty. Seniors go into long-term care because they weren’t able to be safely and happily taken care of otherwise. A pandemic doesn’t make that any easier.
“Caring for someone at home who has very complex needs could destroy people; it could destroy families,” she said. “No one should be guilted into doing that. We did this for my mom, but we could not have done this for my dad.”
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