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Martha Marie Duncan was as bright as the blue Texas sky of the Rio Grande Valley where she was born, and when she was young, she styled her hair to just about touch it. She was clever, fashionable, and determined to climb the corporate ladder.
She worked her way up to become vice president of one of America’s largest advertising firms, and bought a dark red Porsche and mauve Pendleton suits along the way.
“My mom was a brilliant, brilliant woman,” said Duncan’s daughter, Mary Nichols. Duncan would marry five times and have four children before she began to suffer from Alzheimer’s disease.
Now, what made Duncan the “runway ready” woman of Nichols’ memories has slipped away, much of it during the 202 days when nursing homes in Texas were entirely shut to visitors due to the ongoing coronavirus pandemic.
Just as the virus has exposed chasms in American society around race and inequality, it has also sharpened the plight of many families with vulnerable members in care homes: denying them vital social contact when time is a rapidly vanishing possession.
“There’s no eye contact, she can’t speak, she can’t move her own arms or legs, she can barely, and I mean just barely turn her own head. She can barely swallow her own saliva at this point,” said Nichols. “She doesn’t look like she’s going to die any day now, her organs are still functioning, but she’s definitely – there’s no cognition left at all.”
Now, a grassroots movement of families is demanding compromise on nursing home lockdowns, arguing that social isolation for nursing home residents is nearly as deadly as the virus that sent their facilities into lockdown. The calls come amid uneasiness from eldercare advocates and as rapid Covid-19 tests are only beginning to reach nursing homes.
“Many of these facilities’ families haven’t been in there in months, and they can see their family members dwindling away, and they’re losing days they can never get back,” said Dave Bruns, a spokesperson for the American Association of Retired Persons (AARP) of Florida. Nevertheless, they face a “lose-lose” proposition.
“Just the isolation caused by the shutdown order is literally killing people,” he said. “If you don’t reopen them, that’s definitely going to kill some people, and if you do open them it’s definitely going to kill some people.”
Window visits and Facetime, caregivers argue, are insufficient and can be actively distressing to some patients. Further, they argue lockdowns have allowed asymptomatic staff members with Covid-19 into nursing homes, but allowed “no room for error” for family members.
“I know there are groups out there who do feel it’s too soon. We still need to be social distancing,” said Mary Daniels, founder of Caregivers for Compromise. She has organized the groups primarily on Facebook, after she was barred from seeing her husband.
US health authorities severely restricted visitation to long-term care homes in March, after 46 people associated with the Life Care Center in Kirkland, Washington, died. Those who helped feed, bathe and dress their loved ones were suddenly and summarily locked out, including Nichols and Daniel.
Since the early days of the pandemic, experts have said the key to reopening nursing homes is rapid Covid-19 testing. But seven months later, nursing homes are only beginning to get the kinds of less-accurate-but-rapid tests experts believe are needed.
According to the publication LeadingAge, federal authorities say about 7,600 nursing homes have received rapid tests to date, focused on facilities in counties with high infection rates. That is about half the nursing homes in the United States.
The new tests have also posed a new problem: once facilities run out of testing supplies provided by the government, they must pay $32 per test for more supplies, the New York Times reported.
Now, seven months after facilities were sent into lockdown, families have watched loved ones whither, lose weight, and withdraw. Many were helpless as loved ones died alone from Covid-19. And the United States is diagnosing more than 50,000 new Covid-19 cases per day. Concerns about isolation are “pervasive” across the industry, experts told the Journal of the American Medical Association.
Caregivers for Compromise has been especially influential in Florida, after Daniels went to drastic lengths to see her husband. Daniels, after watching her husband cry in confusion through a window, got a job as a dishwasher to see him. She was permitted to see him in his room on her days working.
“My response to that, again, is why is it OK as a dishwasher, but it’s not OK as a wife?” she said. “I would buy that at two months, and three months and four months, but these patients need stimulus and touch,” she said.
Nichols has a starker way of putting it: “We have been saving them to death.”
Daniels was able to gain significant traction with Florida’s “mini-Trump” Republican Governor Ron DeSantis, after her story went viral. She served on a task force, and successfully lobbied for an “essential caregiver” designation and hugs.
But other advocates noted Florida loosened restrictions, but did not enhance testing protocols, even as rapid tests were just becoming available.
“They specifically did not require testing, and it came at a time when the facilities, many of the facilities, were just getting the rapid point of care testing that would be perfect for this,” said Jeff Johnson, state director of AARP Florida. “If we didn’t need to wait for the testing, why did we need to wait to let people back in?”
Many facilities, petrified of legal liability and reeling from the cost of caring for patients with Covid-19, still bar visitors. Others severely limit time with family, many require all visits be conducted outdoors.
Sue Grover has to be monitored while she visits with her mother, Betty, in full personal protective equipment on a hot Florida patio. But the aides who accompany her mother wear no PPE at all, Grover said.
She asked: “If [the staff] can be there right up next to my mom … without anything, why can’t I go in and be in her room with a face mask? With whatever?”
The issue of how to reopen nursing homes is still one of “dignity”, said Patricia Davidson, a professor of nursing at Johns Hopkins University.
“The big challenge in the US is dealing with a pandemic in an individually focused, non-coordinated way,” said Davidson. “You can be a fabulous healthcare facility and have every system and process including testing, but people are going out into a world where bars are open and people are out in the street,” she said.
“This is something that I really believe we’re going to be debating for decades to come: what was really the right thing to do?”
Source: The Guardian
Keyword: ‘Shutdown is literally killing people’: families of isolated nursing home residents demand compromise | Coronavirus outbreak