Some families say isolation is worse than COVID for loved ones in long-term care homes

With nearly 40 COVID-19 outbreaks in Alberta long-term care facilities, all retirement homes are limiting visitors because of the threat of the virus. But some families and advocates are calling for change.

A man from Lethbridge says his mother-in-law died from COVID-19 without ever contracting the virus, cut off from family and friends in her long-term care home.

"My mother-in-law was an avid reader and then when she had dementia, and lost her sight, basically she didn't have anything left other than touch," said Les, who called in to Alberta at Noon and did not wish to use his last name. 

"And there we are sitting outside ... six feet apart, and she can't even tell who it is over there. We can't touch her, nothing. And ultimately, I think she just basically gave up and died."

The guidelines for long-term care facilities are different from province to province.

For seniors like Devora Greenspon, who lives in Toronto, it's causing mental anguish.

"We are confined basically to our room and our home area. We cannot associate with our peers in other areas of the home. There are no activities as such. We don't go on trips or go out for lunch," Greenspon told CBC's The Current last week. "It's super hard for me because I'm used to going out and doing things and now I'm like a bird with its wings clipped. But I know it's for my own good and they're trying to keep the residents safe and keep the virus out."

The National Institute on Aging is tracking COVID-19 and the toll it is taking on retirement homes across the country.

Greenspon's comments show how care home residents are struggling to cope, said Dr. Samir Sinha, the director of Health Policy Research for the Institute, and the director of geriatrics for the Sinai Health System.

"It really speaks to the fact that a lot of people are struggling, because when you're isolated like this, especially as you go into the winter months, when your socialization, where your ability to connect with your family is limited," Sinha said. "Most people living in these homes are within the last two and a half years of their lives. And I don't think this is how many bargained that they would be planning to spend the last two and a half years of their lives."

Worth the sacrifice?

Sinha said seniors need to be in the home to get the care they need, but for many it may not be worth the sacrifice of giving up contact with loved ones and caregivers.

"At the very beginning of this, we just want to keep people safe because we knew that if the virus gets into a home, then this would be, you know, it could be a catastrophe," Sinha said, adding that as the months wore on, family members became frustrated, and health-care providers noted increasing numbers of depression.

Sinha supports finding ways to safely allow visiting.

"We've seen many circumstances where family members have seen their loved ones really deteriorate rapidly because they haven't been able to get the level of socialization, the support that they need," he said. "And a lot of families still really feel that they're being limited from being able to be with their loved ones, or even provide care to their loved ones as family caregivers."

Sinha said the past few months have shown that there needs to be a balance.

"We're seeing increasing rates of depression, loneliness, social isolation, and that actually can be even more dangerous than never having gotten the virus in the first place," he said. "Some people are saying, 'Look, I know that I could get the virus and die, but I might rather have that, frankly, than not being able to be with my loved ones for the next six months.'

"I think we have to remember that residents have rights," Sinha said. "Their families have rights as well."

Louise in Edmonton, who did not want her last name shared, says her 94-year-old mother is in a small and very well-run care home, but has still deteriorated with the isolation.

"Sadly, in the last six months, she has declined to the point where now she's considering palliative care," Louise said. "To be fair, I mean, she's 94, almost 95-years-old. But I do believe that it's the emotional, mental health of these residents that I think has declined."

Louise said she believes the care home is doing everything it can to care for its residents. 

But despite a caring staff, they have to follow the guidelines. Louise said the limits on physical touch have affected all aspects of life for residents — from tables in the dining room being pushed further apart, to the staff wearing plastic shields, to the end of weekly visits from a hands-on hairdresser.

"It wasn't so much getting her hair done, but being touched, and talked to," she said. "I think my sister and I would say that in many respects, you know, COVID has killed her."

Importance of touch

Dr. Sinha said Louise's story highlights the importance of touch, for the benefit of both the senior and the loved ones — like Louise, who just wanted to hold her mom's hand and give her a hug.

For Diane Jaynes, who lives in Fort McMurray, it has been frustrating to try to keep up with her mother's care at a facility in Grande Prairie.

"When COVID-19 first broke out, she was in the hospital, and so they weren't allowing anybody to come to visit her at all for a while there," Jaynes said. "And she quit eating and nobody knew she wasn't really eating as much as she should be. And then when we finally were allowed to come see her again, she was down to, you know, slightly less than 100 pounds, and the doctors told us she had maybe three weeks to live. 

Jaynes said her mother suffers from dementia, but knew she'd had no visitors.

"She was very confused. She thought that my dad had quit coming to see her because either she was in trouble or he had died," Jaynes said.

Jaynes' mother has since been moved out of the hospital and is improving back at her care facility.

Dr. Darren Heyland says family members play a critical role in patient care, and that Jaynes' story is troubling.

"Particularly in the ICU, where we're dealing with people who are seriously ill, the person themself isn't able to engage with us, so we rely heavily on family caregivers, family members to participate with us in decision making," Heyland said.

Families play vital role

"You know, these are life and death decisions that have tremendous impact on not just that person, but the whole family unit. So excluding family caregivers from that role in acute care causes a lot of problems and distress and likely medical error."

Heyland is with the group Caregivers4Change, which advocates for the rights of family members in long-term care facilities and hospitals. The group has worked with infectious disease experts across the country to create new guidance on safe in-person visiting.

"We actually address the issue of hugging and hand holding in our guidance, saying you actually can do it quite safely, as long as you're using certain precautions," Heyland said.

"What really bothers me is at the end of the day, they just want to give their mother a hug. And frankly, the infectious disease, you know, guidance out there, you can do it and you can do it safely. But that lack of touch has really been heartbreaking, both for their mom, but also her daughters."

Heyland said the medical system must take a broad view of health to include the emotional, the spiritual and the mental well-being of patients.

"We want to allow for these essential family caregivers to be present, to have access, to be able to hold and touch and support, advocate for and participate in decision making."

Heyland would like to see family members have more rights to be present for their loved ones, and to standardize the system across the provinces.

Listen to the full interviews on Alberta at Noon here: