Every day, a quiet army of aides fans out across the country to fight off the creeping indignity and loneliness of old age. They head into individual homes and assisted living facilities, some to clip toenails or give baths or cook meals, others simply to converse or read aloud. They may be there as little as 30 minutes or as much as 14 hours.

But as everyone tries to shield the elderly from the new coronavirus, these caregivers and the people who employ them are facing unenviable choices. Communities for older adults are closing their doors to any worker or visitor deemed “non-essential” — but the line between necessary and unnecessary care is blurred at best.

Meanwhile, the caregivers themselves are in a bind, often unsure how best to protect themselves and their charges. There’s already an enormous shortage of them. Some face pressure not to let on if they’re sick, even though Covid-19 could be deadly for their clients. Others are simply out of work, leaving their “essential” colleagues to pick up the slack.

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“It’s a lose-lose situation,” said Josh Obeiter, owner of the Boston-area franchise of Seniors Helping Seniors, an agency in which younger seniors provide care and companionship to older clients. By Monday, he’d lost an estimated 40% of his customers, and by Wednesday, it was 50% — the vast majority because facilities were restricting outside workers and visitors. He understands that it’s paramount to protect the elderly from any potential carrier of coronavirus. He also knows that cutting off even those seemingly dispensable services may have dire consequences — especially for those with cognitive impairment or dementia.

“The person may not physically require our services for their activities of daily living, but for their social emotional well-being, we are — or our companions are — constants in their life,” he said. “So if that abruptly changes, it could easily wreak havoc in that person’s world.”

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Yet even the most basic daily rituals — bathing, say, or teeth brushing — may also be in jeopardy in some cases. Nursing homes, the kind of residence that provides the most intense level of care, are getting Covid-19 guidance from federal agencies, but for assisted living facilities, the emergency public health measures can change from state to state. Many governors are banning “non-essential” workers and visitors from these communities — and what exactly that entails isn’t always clear. “Individual assisted livings can interpret what ‘essential’ means,” explained Beth Kallmyer, vice president of care and support for the Alzheimer’s Association.

There are plenty of older adults infirm enough to be eligible for a nursing home, but who prefer to stay in assisted living communities and hire outside aides. “If we were not coming in and taking care of them, they would have to leave that facility and go to a nursing home,” said Denise Roskamp, owner of the Home Helpers franchise in the suburbs west of Boston. “They cannot ambulate by themselves, they cannot get up out of bed by themselves. We’re helping them transfer from bed to wheelchair, sometimes to get to the bathroom. We’re helping them to bathe, to get dressed, to get meals.”

Roskamp’s agency has not been denied access to any clients, as those services are considered essential. There are gray zones, though. In the chaos of a public health emergency, as the workers allowed inside facilities are restricted, some needs may be overlooked. “Families need to reach out and say, ‘Here’s the situation, my mom needs help bathing and has an aide who comes in to help her with that. Are they going to be able to come in? If not, how are we going to get my mom bathed?’” said Kallmyer, of the Alzheimer’s Association.

“I would bet there are residents who are going without getting their teeth brushed, because the staff is trying to implement measures to save their lives,” said Lisa Sweet, chief clinical officer of the National Association of Health Care Assistants. Such tradeoffs aren’t hypothetical. She’s been hearing from members through the organization’s private Facebook group about all sorts of concerns. Aides are worried about losing their paychecks because facilities won’t let them in, about finding child care for their kids who are suddenly out of school, and about not knowing how to protect themselves and their clients from possible infection.

Some caregivers are already scrambling to cover for their colleagues who are “non-essential” or can’t work because their kids are home from school — and that sometimes comes at the expense of good care. Sweet read one Facebook post from a certified nursing assistant aloud: “I have a 31-year-old quadriplegic patient who was left in his chair for almost two days without being repositioned because we, his staff, were all going 90 miles per hour trying to cover shifts, because there aren’t enough personnel to handle the load.”

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At the same time, new safety measures — such as delivering meals to residents in their rooms rather serving them in common dining areas — can add extra work for those caregivers who are still on the job.

The shortage of staff is causing other issues as well — pressure on aides to work even if they’re not feeling well. One caregiver in North Carolina, who asked to remain anonymous because she feared for her job, said her supervisor responded with skepticism when she reported a cough and chest tightness and requested time off. She works for a small elder care agency that provides services to some people at home and others who live in senior care residences. Over the past few months, her primary client has been a woman in her 90s with dementia, who lives in a large facility.

The caregiver knows just how vulnerable her client is: She has to brace an arm behind the shoulders and another behind the knees to help the woman from her wheelchair into bed. The older woman needs help putting on and taking off her glasses. “She got sick with a normal cold or flu last fall, and almost didn’t make it,” said the caregiver. “She’s very frail.”

When the caregiver’s medical providers decided she should get a precious Covid-19 test, and she took their advice, she said her bosses were livid. “The people I work with are pissed off with me for saying I got tested,” she said. She hypothesized that they weren’t taking the virus seriously — but also that they were worried that families would get scared and stop trusting the facility or the agency with loved ones’ care. “They don’t want their reputation hurt,” she said. “There’s still a stigma for being tested.”

(She provided screenshots of text messages and medical documents to STAT to corroborate her story.)

Sometimes, it’s the caregiver who wants to work despite feeling ill, so as not to lose a paycheck. One certified nursing assistant who works in a Georgia nursing home — she asked not to be identified, fearing for her job — said that the staff is taking hand-sanitizing precautions, but not everyone was staying away if they had symptoms. “I have seen some sick people at work,” she said. “One time I was leaving to go home, and I saw another person who was working day shift with a face mask on. She was talking about how she was sick, and I was like ‘Why are you here then?’ And she was like, ‘I need to make money.’”

The situation can be tricky even for those communities that have resources enough to provide the care that, a few days ago, would have come from visiting contractors. At North Hill Retirement Community, in Needham, Mass., every employee gets screened for fever and cough when they arrive for their shift. The company has interpreted the Massachusetts governor’s orders to mean that all 400 or so of North Hill’s own employees are essential, but the approximately 30 aides or companions that residents contract with from the outside are visitors, and so aren’t allowed in.

“When those 30 people are not here, the North Hill employees still need to provide those services. We have to pick up the slack,” said Ted Owens, the community’s president and CEO. He explained that his team already delivers a continuum of care, so the staff has the necessary expertise. “We just asked everybody to dig a little deeper and give us a little more,” he said.

Still, he knows that for stressed out, low-wage workers, a little more is a lot to ask.

  • I work at an assisted living facility in Florida as one of the cooks. We were told to implement hand-washing and sanitization practices, which we already do, and to ensure that any employee with respiratory problems stays home. When I asked for clarification, because Ive been dealing with an Asthma Exascerbation for more than 7 days, I was told that it was completely fine for me to show up to work, and that I was risking my job if I called out sick, or called out because I had no childcare for my two children. To me this shows how scared these facilities truely are, and that they want to take drastic measures to ensure that they do not tarnish their reputations.

  • I am a Director of Activities at an Assisted Living Facility. Would you consider me an essential worker?

  • John BaRoss’s approach is very sensible in the escalating pandemic chaos. As long as new caregivers have first successfully self-isolated for at least 14 days, and maintain social distance there-after. Ideally the elder should be tested before being moved, but unfortunately that is Fata Morgana these days. To place the elder in caring isolating separate environments also prevents the cruise-ship style spread that seems to run rampant in elderly care facilities.

  • Eric – Appreciate this important article. For the past 3+ weeks I have written and called dozens of health authorities, government authorities at all levels, as well as investigative journalists I have discovered in news feeds about the pandemic. NONE have spoken to the specific request for guidance on the intuitive prudence for families of at least ‘mobile’ elder loved ones in at least assisted living facilities to temporarily relocate them to vastly more isolated family homes where as little as 1-2 trips are made outside of a home-cocoon vs. a assisted living facility where dozens of staffers (with the best protocols) over 3 shifts commute daily (some possibly using mass transit in at least urban areas), plus others entering locked down facilities like the aides in your article who help elders in assisted living facilities, ad hoc visits by doctors, EMS and others … plus daily deliveries of food, meds, mail, supplies, etc. It is UNCONSCIONABLE that authorities remain silent on this (a staffer at a NJ State Senator’s office advised not waiting for authorities to speak to the “obvious” predunce of this safeguard, suggesting moving one’s elder loved ones out of assisted living without delay). Yesterday I relocated my 85 year old Mom from a assisted living facility of ~100 in metro NYC [in NJ] to my private home in distant western NJ to optimally isolate. Two days ago I created a Facebook Group (‘Social distance elders/Temp-relo them from Assisted Living to private home’) on this topic and already there are about 2 dozen stories posted about assisted living facilities being broached by coronavirus with 1 to 50+ testing positive in at least CT, CA, VA, IL, OH, FL, AR, LA, MA & elsewhere (https://www.facebook.com/groups/896525584113367/). Window of opportunity seems to be closing in many states to take this precaution as orders go out for all non-essential to shelter in place.

    • John, your mother is a lucky lady with a caring, action-taking son like you. I fear that several in your own age group (you are around 60 is my guess) actually are getting shunned by their own adult kids with young families. It seems that being over 60 is judged as so susceptible to covid-19 that contact with grand-kids is not allowed even when the 60-ish has self-isolated for well over 14 days. Under those solidly preventative circustances it puts the term “loved one” in question. So you have my sincere appreciation for taking care of your mother in your home, and for spreading the word about this viable option for a truly loved one.

  • I work for a home health aide agency. We have dementia patients with locked medication chests that need to have caregivers twice a day to open the boxes & supervise the taking of these essential medications. But if the caregivers are not allowed access to the patients, then what??

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