The lockdowns and visitor restrictions meant to protect nursing home residents from the coronavirus can also threaten their lives.
Joanne Miles Thomas looks through a screened window at her father, George Miles Sr., a resident at a facility in Rochester, N.Y., on Oct. 10.Mariana Henninger / NBC News.
Oct. 27, 2020, 3:45 PM UTC / Updated Nov. 18, 2020, 12:28 AM UTC
By Suzy Khimm
The moment that Tammy Roberg stepped off the elevator, she could hear her father’s booming voice. Chester Peske, 98, loved to sit in the lunchroom at Copperfield Hill and talk to the other memory care residents about everything from the weather to the history of the highway that connected his hometown to downtown Minneapolis, 6 miles away. While he had Alzheimer’s disease, Peske still recognized his children when they came to the Robbinsdale, Minnesota, facility for weekly visits. “He would talk and talk and talk,” Roberg said with a laugh. Then, in March, there was almost no one that Peske could talk to. When the pandemic hit, long-term care facilities across the country, including Copperfield Hill, shut their doors to visitors and largely kept residents to their rooms, suspending most group activities and communal meals to protect residents from Covid-19. Peske was hard of hearing, so phone calls were a struggle. Roberg’s only lifeline to her father was the staff of the facility, who reassured her that he was doing well.
Tammy Roberg with her father, Chester Peske.Courtesy of Tammy Roberg
The first sign of a problem came in mid-May when her father tested positive for Covid-19. Roberg prayed for his health, but was relieved when his case appeared to be asymptomatic.
Then in late May, Roberg got another alarming call from the facility. It wasn’t the virus, they said — something else was wrong. “His head was down into his chest, and he was sitting slumped in his wheelchair,” her father’s aide said, according to Roberg. “He was not his perky, chatty self.”
Roberg later learned that her father, who’d always had a healthy appetite, had been losing weight. Even more isolated in quarantine after his Covid-19 diagnosis, he was becoming quiet and disengaged, even with the staff members who tended to him, a nurse later told her.
He still had no coronavirus symptoms — he was just withdrawn, according to Roberg and an administrator at Copperfield Hill. Roberg was hopeful that he would bounce back with more hands-on attention from the facility. But four days later, on June 2, she got another call: She should come right away. Her father was dying.
That morning, Roberg flew in from Wisconsin and met her brother in the parking lot of Copperfield Hill. Together they walked into the entryway of the facility, where they were temperature-checked, and then put on gowns, gloves and face shields. A nurse finally brought them up to her father’s floor and opened the door.
“Oh wait a minute—” she said, stopping short. “I think he’s gone.”
Roberg gasped when she saw her father’s gaunt body lying on the bed. After three months of separation, she missed her only chance to see her father by minutes.
His death certificate listed the cause of death as the progression of Alzheimer’s disease and “social isolation / failure to thrive related to COVID-19 restrictions.”
Social isolation was listed as a contributing cause of death for at least nine other Minnesotans — almost all long-term care residents — from June to September, according to state death records; no deaths in the previous two years cited social isolation as a cause.
One of the nurses who treated Peske later described his deterioration as a burning candle with no oxygen left to draw from the air. It was as if a light had gone out, Roberg said: “He couldn’t survive from being isolated.”
The effort to shield elderly, frail and disabled residents from the coronavirus has created another wrenching health crisis: The confinement meant to protect the most vulnerable is also threatening their lives.
“The isolation is robbing them of whatever good days they have left — it accelerates the aging process,” Joshua Uy, associate professor at the University of Pennsylvania Perelman School of Medicine, said.
“You see increased falls, decrease in strength and ability to ambulate. You see an acceleration of dementia, because there is no rhythm to your day. There isn’t a single part of a person’s life that isn’t affected.”
While there is no comprehensive tally of elderly people dying from causes linked to social isolation and confinement, evidence is mounting that restrictions related to Covid-19 are taking a toll on their health, according to a review of recent research and interviews with medical experts and dozens of families across the country. The phenomenon is far harder to track than the number of Covid-19 deaths linked to long-term care facilities — 84,000 as of early October, according to the Kaiser Family Foundation — as it is unusual to list isolation as an official cause of death. But the harms are still real, experts say.
One recent study of a Chicago-area nursing home found that from December 2019 to the end of April 2020, two-thirds of the residents had lost weight, in some cases dramatically — a change that researchers attributed to reduced social interaction, the cessation of family visits and schedule changes due to the pandemic.
Confinement, social isolation and the lack of external stimulation are also fueling cognitive decline and depression, which in turn increase the risk of high blood pressure, heart disease and stroke, according to Dr. Louise Aronson, a geriatrician and professor of medicine at the University of California, San Francisco.
With help from staff members, a nursing home resident stands to wave to family members below at St. John's Home in Rochester, N.Y., on April 24.Tina MacIntyre-Yee / Rochester Democrat and Chronicle.
“Sometimes the doors to their rooms are open, and you just see someone sitting in a chair with tears running down their face,” Aronson, who is assisting San Francisco’s response to the pandemic in long-term care facilities, said. “People ask me, ‘Is this the rest of my life? If so, I don’t want to go on.’”
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While most states have begun allowing some form of routine in-person visits for long-term care facilities, the guidelines vary widely, and many restrictions remain — not only to protect residents, but also vulnerable front-line staff members, many of whom are low-wage Black and Hispanic workers. Some states and facilities are only allowing limited indoor visits, and colder weather is already curtailing outdoor visits. Many nursing homes have resumed communal dining and group activities, but still require residents to remain distanced from one another. And a single case of the virus can put a facility back on lockdown for weeks.
The threat from the pandemic has not receded: On Friday, the U.S. hit a new record number of Covid-19 cases, and nursing homes from Massachusetts to Wisconsin are reporting new outbreaks. At the same time, policymakers need to weigh the competing risks, said David Grabowski, a health policy professor at Harvard Medical School, who recently served on an independent federal commission that recommended expanding in-person visitation at long-term care facilities.
“We’ve locked these older adults in their rooms in the name of safety without thinking about the unintended consequences here,” Grabowski said. “In many respects, the side effects are worse than the potential harm of a slightly higher risk of infection.”
Gloria DeSoto, 92, visits with her family in their car through a window of the Hebrew Home at Riverdale in Bronx, N.Y., on June 11.Seth Wenig / AP file.
Strict, prolonged lockdowns can dramatically alter residents’ health. Uy said that he saw some patients rapidly lose the ability to perform basic tasks — such as standing, feeding themselves and swallowing safely — while confined to their rooms. Physical therapy and other rehabilitation services have also been cut back because of the pandemic.
“Until the pandemic, ‘sudden frailty’ would have been an oxymoron,” Aronson said. “Normally, it would take months to years, and we are now seeing it in weeks.”
But while deadly coronavirus outbreaks at nursing homes tend to grab headlines, the slower-moving health crisis inside these facilities caused by social isolation and confinement remains largely invisible.
Unlike cases of Covid-19, it is not always clear when a resident’s health is deteriorating because of pandemic-related restrictions, given the complex medical issues that brought them to the facilities in the first place. “Failure to thrive,” for instance, is often characterized by weight loss, reduced appetite and lower activity levels — symptoms that could also be linked to other underlying health conditions. But the biggest marker is psychological, and closely linked to isolation.
“It means, they give up,” said Dr. Joseph Ouslander, a professor at Florida Atlantic University’s Charles Schmidt College of Medicine. “You do everything to get them to participate, to get them to eat, and despite that they continue to go downhill.”
Beverly Noody used to drop by her mother’s assisted living facility in upstate New York at least twice a week. The first thing she would do: Walk over to her mother’s chair to see that her feet were propped up.
Barbara White, 94, had congestive heart failure, so her limbs tended to swell from fluid buildup. She was supposed to keep her legs elevated when she was sitting down, and to get up and about a few times a day. But her daughter knew that wouldn’t always happen unless she made sure it did. “She never had her feet up when I came to visit,” Noody said. “If her ankles and knees were swollen, I would have noticed it.”
Two months into the pandemic, Noody got a call that her mother was en route to the hospital because of dangerous swelling in her legs. She recovered, but the same thing happened again in June, Noody said. She could no longer use her walker to get around safely, as she kept falling. Her condition ultimately deteriorated so much that she was moved out of assisted living and into the adjoining nursing home, Premier Genesee, where she could be supervised around the clock.
Noody had always thought of her mother as the no-nonsense type, true to her German roots. But in July, when she was helping to move her mother’s possessions into the nursing home, she found a letter that White had written during the pandemic, but hadn’t given her.
"Beverly, I want to come home for good. I don’t know how to get out of here,” her mother wrote. “I would do anything to get away. I was told today this was forever. Do you know how I can get away?”
New York was the first state to ban visitors from nursing homes in mid-March, and other states quickly followed suit. The virus has still taken a devastating toll on residents, many of whom were highly vulnerable because of their advanced age and underlying health conditions. At least 6,600 long-term care residents in New York have died from Covid-19, an undercount that doesn’t include those who died after they were taken to the hospital.
While nursing home cases and deaths have ebbed since the spring, New York has remained cautious about reopening long-term care facilities to visitors. In July, the state announced that limited outdoor visits and residential activities could resume, but only after facilities were free of Covid-19 cases for 28 days.
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