Isolated And Depressed: Some Long-Term Care Residents Are Losing The Will To Live
While most Arizonans are free to go where they want, when they want, there are thousands of long-term care residents who are living, mostly, in isolation, waiting for that day when they can be reunited with their family. While the intention is to protect this vulnerable population, it could be leading to another crisis.
"The first time he saw me out there, I was on the phone with him. And he said, 'Oh, what do you do now?'" CJ Kaudy said.
She talking about the early days of the coronavirus pandemic, when long-term care facilities, like the one where her dad, John, lived, restricted visitors.
The only way she could see him was through a window.
"And I said, Dad, nobody can go in, you know, it's a virus. It's, you know, they want to want to keep you healthy,'" she said.
Before the pandemic, Kaudy would visit her dad every day. She would spend hours with him. But after the shutdown, Kaudy says her dad went downhill fast.
Then, in early June, Kaudy got the call. Her dad was dying. She says she was able to see him once on June 4 and again on June 11 — the day he died.
"So I got to be with him," she says almost crying. "But, you know, he needed me. He needed me before and he needed me the whole time."
Before he died, Kaudy says her dad was confined to his room. And the only interaction she had with him was through that window.
"You know, COVID killed him," she says. "Even though he didn't die from COVID, it did kill him. I wasn't there for him, and I wasn’t supplementing his meals."
Kaudy says her dad lost the will to live.
Lori Smetanka is the executive director of the National Consumer Voice, a national organization that advocates for quality long-term care.
"What we are seeing is that residents are really suffering as a result of the isolation," Smetanka said.
"People are really declining. The, the, the symptoms of dementia are, are increasing significantly as a result of the isolation, as are the physical declines. We’re hearing lots of stories of people giving up the will to live," Smetanka said.
Like Kaudy’s dad.
But to understand why this might be happening, you have to understand what it means to be a family caregiver. Just because the family decides to place a loved one in long-term care doesn’t mean the work — the giving of care — stops. It’s just different.
Kaudy says she would help feed her dad or bring in special treats like cookies, and that’s not uncommon. Families often support paid caregivers by helping feed their loved one at lunch or dinner; or they might help with grooming, and these are very intimate tasks.
So if all of a sudden those visits come to an abrupt halt, that’s confusing; that’s suffering. As a result, "we think that the deaths we're hearing from COVID don't tell the whole story," Smetanka says.
In mid-May, the Centers for Medicare and Medicaid issued guidelines for how to reopen long-term care facilities.
For example, there has to be no new COVID-19 cases in a facility for 28 days; there has to be adequate staff and personal protective equipment like gowns and masks.
"So unless, or until that's modified, I'm afraid that families will not be able to go into nursing homes and assisted living facilities to visit their loved ones," explains Bridget O’Brien Swartz, a partner at the Phoenix-based law firm Dyer Bregman & Ferris.
The other challenge?
"CMS has left, and the state has left a lot of discretion in the facilities, she says. "There really is no guidance beyond those orders, and so each facility is doing the best that it can, but making its own rules."
An example would be what CMS calls “compassionate care visits." It’s a carve out to the visitation restrictions that are currently in place at most long-term care facilities.
"One of the problems has been that many facilities have equated that to end of life, that the individual is dying," O'Brien Swartz said.
But that’s not the definition of compassionate care, says O’Brien Swartz. In fact, just last week, CMS clarified their own language, saying compassionate care does not exclusively refer to end of life.
"So there is room to advocate to allow for visitation if you're seeing a loved one declining in their health, mental or otherwise," she said.
"We think that the deaths we're hearing from COVID don't tell the whole story."The National Center on Elder Abuse says social isolation is one of the greatest risk factors for elder abuse, and while many long term care facilities are doing their best under dire circumstances, there is cause for concern.
— Lori Smetanka, executive director of the National Consumer Voice
Smetanka says across the county staffing levels have been exceptionally low during the pandemic, and so the question becomes: Are residents getting everything they need to remain healthy for the long haul?