By Will Englund, The Washington Post, June 27 2020
Before the coronavirus lockdown, care for untold thousands of nursing home residents across the country came as much from family members as from the aides on the floor. From Maine to Hawaii, relatives would drop in to feed residents of chronically short-staffed nursing homes, brush their teeth, check for bedsores, get them moving, keep them company.
Barred since March, many have worried that no one has sufficiently taken up the slack.
Now, after tens of thousands of residents died as the coronavirus swept through one nursing home after another, more than a dozen states are cautiously setting rules for the return of a limited number of family visitors. They range from New Jersey, where officials believe the peak of the pandemic has passed, to New Hampshire, which has seen very few cases all spring, to Oklahoma, where even as cases are spiking, criteria have been drawn up to allow family access. But the distancing rules in effect will prevent visitors from carrying out much of their earlier hygiene care.AD
Limited access raises difficult questions about equity and bias. Not every resident, or every family, will qualify for a visit. Nursing homes vary considerably in their capacity to control infection. The pandemic is still raging, and some states — including New York, Pennsylvania, Ohio and Florida — have not budged.
June Cox had gone to see her mother, Dorothy Cox, three times a day at her nursing home in San Diego. “I tried to take care of her physically, emotionally, musically, spiritually, every way I could think of,” she said.
After March 13 she called as often as she could on FaceTime. “ ‘I’ll be there as soon as I can be, as soon as I’m allowed, Mama,’ ” she told her mother. “She’s not a prisoner. She hasn’t committed a crime. She’s not supposed to be living in solitary confinement.”
Dorothy began declining shortly after the lockdown began and died alone April 7 after a seizure. “My mother would still be alive, I’m pretty sure,” said June, if she had been able to keep looking after her.AD
On March 11, Leonard Beatty of Ashland, Mo., seemed as robust as he had been in months. His appetite was back. His wife, Myrna, and daughter, Cindy Harper, had made plans to bring him home from The Bluffs nursing home in nearby Columbia by early April. The staffers “worked their butts off,” Harper said, but they felt they could care for her father, who had dementia, better at home. He was unnerved, she said, by the “hollering” and crying of other residents.
“Then covid hit,” she said, referencing the disease caused by the coronavirus. “The door slammed. What do you do?”
They visited with him through a window March 31, his 84th birthday, and he still seemed strong. But when they sang “Happy Birthday,” he started sobbing.
The next time they saw him was a week later. “We were shocked,” Harper said. “He was just a shell of himself. We didn’t know what was going on.”AD
No one from the nursing home had told them he was failing.
Two days after that, a staff member called them and said he should be put in hospice care. He had bronchitis, they were told. He was not tested for the coronavirus. Instead, with considerable difficulty, they arranged to bring him home, where he died 29 hours later.
Myrna Beatty believes that by being there she had enabled him to survive a bout of pneumonia in October. She and Harper think their absence this spring was fatal to him, that he would still be alive if they had been able to bring him home April 1 as they had planned.
“I have to accept this is the way it went down,” Harper said. “We have to tell ourselves we did our best. It was out of our hands that we weren’t there to help him. And that hurts. Covid? It did us in. We’ll feel forever guilty.AD
“He may not have died from covid-19, but he definitely died because of it.”
The tension with renewed visits is between safety and compassion, said Susan Frampton, president of an advocacy group called Planetree International. Staffers and residents alike shouldn’t be needlessly exposed to the virus. But neither should someone be cut off from all family contact. Frampton points out that family members can spot troubling signs in residents more quickly than can staff members, who may be rotating through shifts and not well acquainted with certain residents.
“Isolation has serious impacts on the health and well-being of the residents of these facilities,” said Daniel Rusyniak, chief medical officer of the Indiana Family and Social Services Administration. As with most of the other states relaxing visitation rules, Indiana now permits families to meet outdoors only, socially distanced, masked, supervised and tested for the coronavirus.AD
New Jersey’s rules are similar, with special attention given to infection control measures as residents move through the nursing home to meet their relatives outdoors. Visits are allowed only at nursing homes that have “attested” to the state their ability to meet the requirements. As of this week, more than 300 had done so, according to Dawn Thomas, a spokeswoman for the Department of Health.
In Oklahoma, the rules are not so strict. “We encourage families as they reunite with their loved ones to consider getting tested in advance and to wear masks for visitations and closely follow heightened protocols at the facilities,” Commissioner of Health Lance Frye said in a news release.
On June 18, Texas Gov. Gregg Abbott (R) said that guidance for visits would be coming within a week. But since then, cases have spiked and he has announced a pause on further reopening in the state.AD
Elaine Ryan, vice president of state advocacy and government affairs for AARP, said she is concerned that the states are moving too fast and too haphazardly.
“No state has the infection and death count under control in nursing homes and assisted living,” she said. “Nursing homes are struggling with just the basics. We have a long way to go to have the assurances that these kinds of visits can be done safely.”
But the coronavirus already has a foothold in many if not most nursing homes, brought in through the “back door” by staff, said Mike Dark, an attorney with California Advocates for Nursing Home Reform.
And since March, those nursing homes have been operating without the vigilant oversight that visitors provide.
“Facilities have spiraled into apocalyptic conditions without that outside eye,” he said. “And we’re looking for this crisis to play out over years, not months.” There’s no way that residents can be kept isolated from their families that long, he said.AD
A California woman who spoke on the condition of anonymity out of fear of reprisals said of her 38-year-old son, paralyzed four years ago when he was hit by a truck: “I don’t want him to feel like he’s been put in a closet and forgotten.” He can’t speak because of a tracheotomy, and she fears that has contributed to less-than-attentive care.
“It’s very easy to ignore people who don’t have voices themselves,” she said. That’s why she wants to get back in to be his constant advocate.
Marcia Reimer’s 93-year-old mother, Joyce, was in a nursing home in Orchard Lake, Mich. Marcia visited at least four days a week. “I had made up my mind to be a presence there so they knew I was watching,” she said. She believes it paid off; she has no qualms about the care her mother received.
Joyce had always been strong and independent, Marcia said, but went into the nursing home after falling and breaking her hip. One day after the lockdown began, a trusted aide told Marcia over the phone: “You know, I’ve never seen her mad. But today she was as mad as could be. She was mad at that virus.”AD
She died May 30. The doctor said it was congestive heart failure.
“She slipped away,” Marcia said. “That was her wish and my wish. She would have hated the drama, that bedside vigil thing.”
She knew that the lockdown was out of her control, that there was nothing she could do about it. She had been praying that Michigan would change course and allow visits. “I would have gowned up and masked up and done whatever I would have had to. That’s the one thing that haunts me, that I wasn’t able to see her.”