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They have masks and gloves, there's more testing capacity: What nursing homes really need is more help, advocates say

In pre-pandemic times, Peter Karris visited his mother Margaret several times a week, sometimes even more.

He would keep her company, feed her meals and support other residents in the nursing home where she lives. Once, he collected dolls to give each resident; other times he'd paint with them and sell their work to raise money for the Alzheimer's Association.

Then COVID-19 came.

First, the nursing home where she lives, Parker Jewish Institute for Health Care and Rehabilitation in Queens, New York, closed to all visitors. Then, the virus swept through.

Dozens of residents caught it, including Margaret. Her roommate didn't make it, nor did a number of others on their floor. By the end of the spring surge, 81 Parker residents had died.

Margaret, 70, hung on, and Peter and his sister were able to resume their regular visits, wrapped in full protective gear looking like astronauts. She improved immediately. The nurses, Karris said, "said they don't think she would have been able to make it this far without us."

Now, as cases surge again in the New York area and across the country, Karris and others with loved ones in nursing homes are worrying again.

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About a quarter of the U.S. deaths from COVID-19 – nearly 74,000 of the 280,000  – have been nursing home residents and caregivers. 

COVID-19 cases at nursing homes are at record levels, reaching 18,238 cases for the week ending Nov. 15, the most recent data available. And about 1 in 5 nursing home residents with COVID-19 die from the illness, according to the Centers for Disease Control and Prevention.

Nursing homes also found out last week that they could begin getting COVID-19 vaccinations as soon as the middle of this month. The CDC committee that prioritizes groups for vaccination put nursing home residents at the top of the list, along with front-line health care workers.

On Monday, nursing home advocates said their residents and staff should get vaccinated before anyone else. 

Peter Karris and his mother, Margaret, who is in a New York nursing home with early-onset Alzheimer’s.

"The single best way to very quickly reduce the number of COVID deaths is to get the population vaccinated who is dying from the disease," said Mark Parkinson, president and CEO of the American Health Care Association and National Center for Assisted Living. “A one-month delay in distributing the vaccine to all long term care residents and caregivers could result in more than 20,000 of our residents losing their life when a vaccine could have saved them.”

As residents await their shots, nursing homes overall appear to be in better shape than they were in the spring, a number of sources told USA TODAY, with more personal protective equipment such as masks and gloves, and much more testing capacity.

However, many still don't have the resources to adequately protect residents. And efforts to keep them safe by avoiding other people have taken their own toll. 

"There's a rapid decline when there's no social interaction and you're never going to be able to get back to where that person was," Karris said. 

Beth Kallmyer, vice president of Care and Support for the Alzheimer’s Association, a national advocacy group, said she's frustrated that 10 months into the pandemic, she's having some of the same conversations she had at the start.

"We know a whole lot more now than we did in March, but we're still talking about" lack of adequate protection in nursing homes, Kallmyer said. "I find it really, really hard to understand why the senior and elderly population in this country can't be prioritized."

Protective gear in greater supply than in spring

When COVID-19 rates rise in a community, they rise among nursing homes in that community as well, said Dr. David Gifford, chief medical officer of the American Health Care Association and the ​National Center for Assisted Living, which represents more than 14,000 long-term and post-acute care providers across the United States.

The virus gets into nursing homes in a variety of ways, he said, including staffers who catch it during off-hours or another job, family members who visit, residents who leave to go to doctor's appointments or other reasons and bring it back with them.

Over half of all nursing homes in the country already have been hit by COVID-19, he said. It's tough to prevent the spread into homes and within them, but it's not hopeless.

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"If you take the right precautions, you can really diminish the chance of spread," he said.

Resource challenges have definitely improved since March, said Dr. Lissy Hu, CEO of CarePort, a Boston-based company that helps a third of hospitalized patients in 43 states transition from hospitals to nursing homes and other post-hospital facilities.

Only 6% of the nursing homes CarePort works with are reporting shortages of gowns now, she said, down from 18% earlier in the pandemic. Shortages of hand sanitizers have fallen from 7% to 3% of facilities. And more than 90% of facilities are current on federal record-keeping during the pandemic, she said.

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The Trump Administration announced Monday that it will distribute $523 million to over 9,000 nursing homes to reward them for successfully reducing COVID-19 related infections and deaths between September and October.

Most nursing homes have more personal protective gear available now than they did in the spring and early summer, and most facilities now have eyewear and face shields as well as masks, said Sheria Robinson-Lane, an assistant professor in the University of Michigan School of Nursing. Nursing homes have gotten better at coordination, working together to share information and strategize procuring needed supplies.

"I think we're better prepared," Robinson-Lane said. "Is it still challenging? Absolutely."

Nursing homes 'need more help'

Robinson-Lane agrees with Karris that isolation is a major issue for nursing home residents.

Like him, Robinson-Lane thinks drive-by visits are better than nothing. Cards, FaceTime chats and outdoor and window visits also help curb the physical, emotional, social and spiritual costs of isolation, she said.

Testing everyone as they come into a nursing home – both staff and visitors – would also be helpful, she and others said.

About 87% of nursing homes now have the capability to test their residents, thanks to a federal program that provided machinery. But whether the home can actually use the machine to produce timely results is another question, Hu said.

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Gifford said he's hearing again about five- to seven-day delays in receiving test results, which makes them essentially worthless. "We're flying blind," he said.

Nursing homes are doing their best, Hu said, but "they need more help." More funding to cover the extra personal protective gear and testing costs, and hazard pay for workers would make a huge difference, she said.

Staffing has long been a problem at nursing homes, with high turnover common. Now, that problem has gotten worse, Hu and others said.

Hospitals, often able to pay better wages, snap up registered nurses and nursing assistants from nursing homes. Traveling nurses, who filled gaps earlier in the pandemic when the outbreaks were more localized, are now in demand everywhere.

Coping with more empty beds

Another major issue for nursing homes: Declining revenue. Just as costs are rising to provide a COVID-19-safe environment, fewer people are moving into nursing homes. They have seen a 20% drop in patients coming from hospitals, Hu said.

Families today can't even visit a nursing home to decide if they think it would be a good fit for their loved one – making an already difficult choice nearly impossible, said the Alzheimer's Association's Kallmyer.

Keeping a struggling family member home might put them at risk of wandering or unable to get the care they need from an elderly spouse. Day centers, which often provided relief for families coping with dementia, have mostly closed during the pandemic, she said. 

But moving someone into a nursing home now means cutting them off from everything familiar.

Transitioning into long-term care is often difficult for both families and the person living with dementia, "then you layer a pandemic on top of it where you're not going to be able to visit them, that's a really, really hard decision to make," Kallmyer said. "I suspect many, many families are putting that off. The cost to that is sometimes to the well-being of the person living with dementia and sometimes to the caregiver." 

Charles Clifton, 48, and his mother Mary Helen Clifton, 87, spoke via Zoom earlier this summer. During COVID-19, Mary Helen, who has Alzheimer's and lives in a nursing home, has not been able to see her only child as much as both would like.

Tough COVID-19 choices take a toll

Charles Clifton put his mother Mary Helen in memory care in August 2016 when the aide who had been helping with her care couldn't lift her anymore from the couch to her wheelchair to the bed.

Clifton, 48, an only child with a back problem, couldn't manage alone but he visited her at least three to four times a week. 

When her Durham, North Carolina, nursing home first closed to visitors on March 21, it was "tough, but given what we didn't know at the time about COVID and seeing the outbreaks, I understood why they did it," said Clifton, a computer software engineer. "I wouldn't want to pass COVID on to my mom or any of the other residents if I didn't know I had it and was asymptomatic."

He was able to see his mother, now 87, for the first time via video chat in May – the longest time he'd ever gone without seeing her face. "It was a great visit," he said. "Both of us were happy to see each other."

But the second video call didn't go as well. "She just could not stop crying," he said. "I was trying to console her and say, 'It's OK, it's OK,' but it did not work, so I had to cut the session short."

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Starting in July, he was allowed to see her outside for 20-minute visits once a week. "It brought me some sort of satisfaction, you could see the whole picture of how she was doing – whether she was eating good or had lost weight, things that you can't really tell during a Zoom call," he said.

But with Clifton covered in all sorts of protective gear, his mother had trouble recognizing him, and she wasn't very talkative.

Earlier this month, he was allowed to go indoors for the first time, and the former school teacher and assistant principal "perked up more," recognizing him right away, despite his mask.

Clifton is eager for her to be able to get a vaccine against COVID-19 but worries that with cases surging in North Carolina, her nursing home will shut down to visitors again until residents are vaccinated. "I feel like the isolation is affecting her," he said. 

Maybe the situation will improve in a month or two.

"You can only hope and pray," Clifton said.

Contributing: Ken Alltucker and Mike Stucka, USA TODAY.

Contact Karen Weintraub at kweintraub@usatoday.com

Health and patient safety coverage at USA TODAY is made possible in part by a grant from the Masimo Foundation for Ethics, Innovation and Competition in Healthcare. The Masimo Foundation does not provide editorial input.

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