CDC updates guidance on long-term care visits, but families say it is not enough

by  Harry Croton

SPRINGFIELD (WEEK) --- Friday, more than 20 members of the group Caregivers for Compromise took to the state capital to push for easier access to visit loved ones in care facilities.

Two key federal agencies, including the CDC, released guidance this week that loosens restrictions for visits. But many still aren't satisfied.

"(Facilities) are going to say they aren't ready until IDPH tells them they can use that," Caregivers for Compromise spokesperson Carrie Leljedal said. "They also risk that if they put it in place today and IDPH walks in tomorrow, IDPH can technically tag them. Because (the department) hasn't signed off on it yet."

The CDC is allowing more intimate visits at long term care facilities. Vaccinated residents can meet even with people who haven't gotten a shot yet.

Ann Cheverton, Senior Vice President of resident services for Bickford Senior Living, says guidelines and safety precautions are still in place, but the new CDC information is a big step in the right direction.

"The new guidelines give us a little bit of a wiggle room to allow for that hug to occur," Cheverton said. "They can wear a mask but they can have some close contact for a short period of time. But again, trying to limit that exposure if possible."

Cheverton says the focus right now is on new COVID variants that could increase risk of illness in these facilities.

But she says a return to complete normalcy may be closer than some think.

"I think it's going to be towards the end of the year - maybe fall into early winter," Cheverton said. "The reason why maybe not a bit sooner, is just where the play is going with these variants."

For now, care facilities will continue to keep an eye on updates from local and federal health departments.

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CDC updates guidance on long-term care visits, but families say it is not enough 

‘Shutdown is literally killing people’: families of isolated nursing home residents demand compromise

by Jessica Glenza

Relatives visit a loved one in a nursing facility in
Lindsay, California. Photograph: Jeremy Hogan/Barcroft Media via Getty Images

Eldercare advocates argue that facilities have allowed asymptomatic staff members with Covid-19 in, but kept loved ones out 

Martha Louise 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 the 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.

What made Duncan the “runway-ready” woman of Nichols’ memories has now slipped away, much of it during the 202 days when nursing homes in Texas were entirely shut to visitors due to the 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.”

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.”

Jack Campise talks with his mother Beverly Kearns through a window at a nursing home in Windsor, Connecticut. Photograph: Chris Ehrmann/AP

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 wither, 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.

Mary Daniels got a job as a dishwasher just so she could visit her husband Steve who lives in a nursing home in Jacksonville, Florida. Photograph: AP

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?”

 

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‘Shutdown is literally killing people’: families of isolated nursing home residents demand compromise 

Glimpses of Isolation Part I

Virus restrictions have put long-term care facilities on lockdown. The isolation has devastating effects on those who are being "kept safe" from the virus. Find out how you can help by joining the Facebook group at facebook.com/groups/caregiversforcompromise.

Source:
Glimpses of Isolation Part I

People in long term care ‘dying of isolation,’ Georgia group tells governor

Georgia Caregivers for Compromise

Photo of Betty

Kristian Hugo can’t hide her love for her “granny,” Betty, who is in a long-term care facility in St. Marys.

“Words can’t do it justice,” Hugo said. “She’s always been a caregiver. She’s always taken of, even as a little girl, she would go take care of the elderly.”

Click to Watch Video

Hugo is frustrated and worried since the pandemic has locked her and others out of the facilities where their loved ones live.

“It’s hard when you’re hearing, you know, the talks of theme parks opening and sports and schools,” she said. “Where are we talking about our homes that, you know, our loved ones have been in for five months in isolation?”

Hugo and Maxine Williams, her aunt, are both with Georgia Caregivers for Compromise. Williams is the administrator. A letter the group wrote to Gov. Brian Kemp reads in part:

”Our loved ones are dying of isolation and loneliness and it has to stop. While we appreciate the efforts to save them from the virus, there comes a point when the effects of isolation are more deadly than the risk of contracting COVID-19.”

The organization is asking the state for:

• A point of contact within the administration so they can make “informed decisions based on facts, not hopeful speculation”
• A plan for reopening facilities “in a safe, smart, step-by-step way”
• The implementation of an essential family caregiver designation program “that’s currently being implemented in Minnesota and Indiana”

Hugo says she misses the little things, like just “being there” for her granny. But she says speaking out is what she can do for her and others.

“They need us and they don’t have the voice,” Hugo said. “They don’t have the voice to tell everyone that they need us to be there and some of them, the ones with Alzheimer’s or they have dementia or are mentally incapacitated, they cannot look through a window at their loved one. They just don’t understand. It isn’t enough. They need their touch, and they need to hear their voice.”

The group is asking for Kemp to announce a plan by Aug. 3, but so far, the the group says it hasn’t received feedback from the governor.

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People in long term care ‘dying of isolation,’ Georgia group tells governor