Isolated and lonely, ‘caged’ seniors driven to despair
Some defy lockdowns, as experts warn frail residents will decline without exercise or family visits
From the confines of her nursing-home room, Sharron Cooke can hear cries of loneliness. “Hello … Is anybody there? Hello?” Disembodied voices calling for someone, anyone, go unanswered.
In a facility gone quiet, forced into lockdown against COVID-19, the shouts of confused residents filter across the hallway and, after a time, disappear.
There is no virus in her residence, the New market Health Centre, but 72- yearold Cooke said that for safety’ sake, she and her fellow residents have been ordered to stay in their Frooms for nearly two months now, attended by just enough staff to drop off meals and leave.
Human connection, the mainstay of life for older people, is another casualty of COVID-19.
In Toronto, 87-year-old Devora Greenspon is living in another woman’s room, the missing lady’s furniture covered in black garbage bags after the home sepa rated residents with and without the coronavirus. Greenspon is not infected, although her loneliness is so deep it feels like a disease. “In the morning, I don’t want to get out of bed because I have nothing to look forward to,” she said. “I am very lonely. It’s like a pain in my heart. I have no human contact.”
“The (personal support workers) do come in and bring my food and tea or coffee,” Greenspon said. “They are so busy and have so many residents to deal with that they don’t have time to have a chat with me. I understand, but on the other hand, I feel bad. I feel very frustrated. I have very strong feelings of frustration. I miss my family so much.”
Outside the door of her tiny room at Extendicare Bayview, Greenspon hears screaming.
“We have residents who do not want to stay in their rooms. One woman creates absolute havoc. She goes to the nurses station and throws everything.
“She swears. It’s very sad, I feel for her. I feel for the girls. She hits them. Pushes her walker into them. I still feel for her because I know how she feels, being cooped up like that. I feel frustrated, too.”
Operators of both homes say staff are supporting residents and families through virtual calls and window visits.
York Region operates two nursing homes including Newmarket Health Centre, where Cooke lives. It has no coronavirus cases, says Lisa Gonsalves, general manager of paramedic and senior services. Gonsalves says the region placed an “iron ring” around the homes while providing “excellent care and support” for residents’ physical and mental health.
At Extendicare, regional director Niklas Chandrabalan says, “We absolutely recognize that this is a lonely time for our residents.”
Virtual visits don’t “compare to a hug or a kiss, but it does help,” Chandrabalan says. Extendicare Bayview, where Greenspon lives, is fully staffed, he says, and workers are “stopping in doorways to chat and keeping music playing in the halls.
“We hope we can reconnect our residents and families, but we have to make sure it is safe to do so. The last thing we can risk is introducing new cases of COVID-19 into the home.”
When the government banned all but essential visitors from long-term care in mid-March (a ban in retirement homes followed) advocates warned of the impact of social isolation as COVID began its deadly surge.
Loneliness is debilitating for older people. It has always been a problem for those living in long-term care, where most homes are short-staffed, with systems that focus on tasks and efficiencies instead of resident fulfilment. Now, with the lockdown, the situation is dire. Depending on an individual’s capabilities before the pandemic, some will lose verbal skills while others will fall into depression. Residents forced to sit or lie in bed risk losing strength and will struggle to walk, which can lead to falls on fragile bones and even a quick demise.
Details of declining mental health abound. At the Ontario Association of Residents’ Councils, where Sharron Cooke is president of the board and Devora Greenspon the treasurer, board members across the province have been telling stories from inside.
In some homes, council members say there are not enough workers or iPads to offer regular virtual visits with families. Some residents are trapped in their rooms on upper floors and cannot see family for window visits. These visits don’t offer what most now need: human touch. “I really miss hugging my family,” Greenspon says.
Last week, Dee Lender, the association’s executive director, and fellow seniors advocates wrote to Premier Doug Ford, asking him to show compassion. Seven groups signed the letter, including Advantage Ontario, CanAge and the Elder Abuse Prevention Ontario.
“On behalf of almost 80,000 residents, their families and staff in Ontario’s longterm-care homes, we are writing this letter to urgently request that the provincial government take immediate action to support the psychosocial and emotional well-being of residents,” the letter said. “People need people.”
The letter was sent to Ford, Health Minister Christine Elliott and LongTerm Care Minister Merrilee Fullerton on May 6. On May 12, the Long-Term Care Ministry sent the Star a written statement saying, “Our government is monitoring the situation closely and we look forward to a time when it is safe for us to lift visitor and isolation restrictions and reunite family and friends.”
In an interview, Lender said the group wants Ontario to broaden its definition of an “essential” visitor during the pandemic by including those who would spend time with residents and enhance their quality of life. Alberta made this change two weeks ago.
On April 28, Alberta’s chief medical officer of health, Dr. Deena Hinshaw, updated the visitor orders for long-term care and homes offering supportive living to ensure “residents’ quality of life can be maintained to the greatest extent possible.”
Lender recognizes the need for protections against COVID-19 in such a vulnerable population. “We’re not advocating for the doors of long-term care to be swung widely open. We want a very controlled, focused approach.”
In Ontario, seniors’ housing includes at least 145,000 people in three separate systems: 626 government-licensed nursing homes, 767 privately operated retirement homes, and a smaller number of independent- or assisted-living apartments.
At St. Clair O’Connor Community Centre in East York, residents of independent- and assisted-living units are asked to remain inside, after an outbreak in its long-term-care home on the same site. CEO Mary Hoare says the community is using virtual programming and sends a worker with a coffee cart to the door of each unit daily for a chat, but “nothing can replace the feel of a daughter’s hand.”
Like those in assisted or community living, residents of retirement homes are renters under the Residential Tenancies Act, although their homes have additional government regulations. Before the pandemic, retirement home dwellers had the freedom to come and go, with no restrictions. Now, however, government COVID directives for longterm care also apply to retirement homes — many have told residents to stay inside their rooms, 24 hours a day, their meals left at the door.
In one Toronto retirement home, a healthy 90-year-old woman feared losing her mobility after sitting for a month in a room measuring a few hundred square feet.
She decided to preserve her strength. Now, every day, she opens the door of her room and peers into the hallway, looking right, then left. It’s almost always empty, and she steps out for a surreptitious walk in the hallway, an otherwise law-abiding woman committing what she believes is civil disobedience.
And she has the full support of her geriatrician.
Dr. Samir Sinha recounts the doctorpatient telephone call when the woman told him of her secret exercises, weeks into lockdown in a home with no cases of COVID-19.
“She said, ‘None of us are allowed to leave our rooms right now,’ ” recalls Sinha, director of geriatrics for Sinai Health System. The patient explained her routine and, says Sinha, asked, “You are OK with that, right?”
“And I said abso-fricking-lutely. I don’t see why you can’t do these things — with appropriate physical distancing,” Sinha says. “That was her little act of defiance.” Sinha says if the woman lived in a home with a COVID outbreak, his advice would be different. However, Sinha and his colleague, Dr. Nathan Stall, believe enforced isolation in retirement homes is so debilitating that it will lead to a second round of punishment, diminishing the health of seniors who escaped COVID. “My patients are caged,” Sinha says. “It just seems cruel,” adds Stall, a geriatrician at Mt. Sinai Hospital. “Beyond the benefits of going outside, there are the obvious harms of isolation.
“There is talk about how we are not just going to have an economic recession; we are going to have a social recession as well,” adds Stall. “We know older adults are particularly harmed by social isolation. Paradoxically, this epidemic of coronavirus is exacerbating an already existing epidemic of loneliness.”
Sinha believes retirement home residents should have the freedom to leave their rooms with proper social distancing practices, like any other renters.
The outcome of the enforced lockdown, says Sinha, can be devastating.
He describes a Toronto man living with dementia in a retirement home who, prior to the lockdown, went for daily walks with his longtime caregiver.
“He was probably not able to go out on his own, but he was part of a pairing,” Sinha says. “It was the best of both worlds when the caregiver could take him for his daily walks out in the community and make sure he didn’t get into a situation where he interacted with somebody in a way that could make him come in contact (with COVID).”
Exercise and fresh air helped the man burn off energy, enabling him to sleep at night.
After the home went into lockdown, Sinha says the man was no longer allowed to step out of his room. He grew increasingly agitated and eventually became delirious, an extreme state of confusion that can cause hallucinations. The man assaulted his caregiver and ended up in hospital.
Sinha cites a study on older people which found the “three magical things” that add roughly five years to life are: not smoking, having meaningful in-person social connections, and regular exercise.
“You are really going to limit the life expectancy of some of these folks. So how do we find a balance that makes things tolerable?”
Not all retirement homes are fully enforcing a lockdown, says Cathy Hecimovich, CEO of the Ontario Retirement Communities Association.
“Each home has safety protocols around social distancing based on their current situation and physical environment, allowing residents to take walks and safely participate in other social activities as advisable given public health direction,” Hecimovich said in a statement.
Jane Meadus, a lawyer for the Advocacy Centre for the Elderly, questions the legality of forcing tenants to stay in their rooms.
“Homes have to follow the (government) directives, but I don’t see that they get detention authority over the residents. I don’t think you can do that,” Meadus says. “They are putting a blanket order over all of these people, whether or not they have COVID.
“I think the question is, are there less restrictive measures? Wear a mask, don’t touch anything. Stay six feet apart like the rest of us. It’s really trying to balance those issues.”