KIRKLAND, Washington. – After months of isolation in his elderly care facility, Charlie no longer recognizes his almost 50-year-old wife. In another nursing home, Susan’s toenails grew so long that she couldn’t squeeze into her shoes. Ida lost 37 pounds and stopped talking. Minnie cried and asked God to just take her.
You are among the thousands of elderly people affected by another epidemic that has ravaged America’s nursing homes – an outbreak of loneliness, depression, and atrophy triggered by the lockdowns put in place to protect them from the coronavirus.
“A slow killer,” said Esther Sarachene, who said she saw her 82-year-old mother Ida Pasik wither and fall silent during the months she was locked in her nursing home room in Maryland. “She didn’t know who I was.”
Covid-19 continues to scour the halls of long-term care facilities despite a series of safety measures and visitor bans put in place months ago to slow the devastation.
More than 87,000 residents and workers have died from the virus, which has infected more than half a million people attached to facilities, and new clusters continue to break out with numbing regularity: 16 people were found this month at a Chesterfield, Virginia nursing home , reported dead. ;; All 62 residents of a Kansas nursing home are infected.
At the same time, the harm of loneliness is being overlooked, families and stakeholders say. They say widespread lockdowns are still necessary to keep people safe from the virus, but also that facilities now face increasing physical and psychological stress from social isolation as the pandemic shows no signs of subsiding.
The separation of family and friends is one of the most severe privations of the pandemic. Experts say the absence can cause particularly severe damage to people with dementia and Alzheimer’s disease, thousands of whom have been locked in their buildings since March.
Long-term care facility operators are faced with the impossible choice of depriving residents of vital human contact and inviting the virus inside.
“We have to walk a very fine line,” said Robin Dale, president of the Washington Health Care Association, a trade group that has recently seen a surge in virus cases in state facilities in a new national boom. “We have to work towards more personal visits, but it’s difficult right now.”
In more than two dozen interviews across the country, long-term carers reported increasing confusion, anger and fear among residents. Family members said their relatives deteriorated in low-staffed facilities that have scaled back physical therapy, exercise classes, and visits to the community.
One worker described how a resident told her one evening that she was the first person she had seen all day.
“Mom just isn’t there,” Deanna Williams said as she and two siblings went to the Life Care Center in Kirkland, Wash. To visit their 89-year-old mother, Peggy Walsh, who loved driving around the country before she left developed dementia.
Life Care in suburban Seattle was the country’s first Covid-19 hotspot in February. This place gave a first glimpse of how the virus could penetrate homes. 46 Life Care residents have died.
Every day since the outbreak, when the deaths of residents of long-term care facilities rose to nearly 40 percent of the country’s 229,600 coronavirus deaths, Ms. Walsh sat quietly in her wheelchair, gazing at the fence and bushes outside her room.
She always said “I love you” when her children came to visit and kiss her, but it has been eight months since they could touch her. Some days she doesn’t seem to notice when they wave through her bedroom window or dance around with decorative fall scarecrows to get her attention.
“If only we could hug her or kiss her on the cheek,” said another daughter, Colleen Mallory. “It’s like losing her over and over again.”
Life Care has continued throughout the pandemic, despite families saying the population has decreased by 200 patients. The initial outbreak, which killed dozens of residents and made much of the staff sick, has now faded, but families say they are still sporadically informed of a new infection inside.
When Ms. Walsh’s children were chatting at a Starbucks before a morning visit, their phones suddenly buzzed in unison – it was a text message from Life Care reporting that a patient and three employees had tested positive.
The Life Care Centers of America, which has more than 200 facilities, are being sentenced to death by the families of two former Kirkland residents, and federal and state regulators have cited flaws in their response to the outbreak.
Life Care has denied the lawsuits and appealed the findings of the regulatory authorities. In September, an administrative judge in Washington state largely sided with Life Care, stating that the facility violated some regulations, but the evidence did not show that the care or health of residents was at risk.
Nancy Butner, vice president of the Northwest Division of Life Care, said the Kirkland facility was good and a top notch facility. “They provide a high level of service in a safe environment that keeps our residents and their families safe,” she said.
In total, the virus has infected more than 581,000 people in around 23,000 long-term care facilities, including nursing homes, assisted living facilities, memory centers, retirement homes, and other care facilities for older adults.
In the first months of the pandemic, most older adult facilities banned family members and friends from entering their buildings. State and federal regulators issued guidelines restricting visitors and unnecessary health workers and cutting off community activities within buildings. In the months since then, government restrictions have been relaxed in many places, although disease and deaths have continued to occur in some facilities.
Research groups recently reported that thousands of nursing homes were still facing serious shortages of masks, gowns, and other equipment. In addition to the risks, nursing home workers have long worked in multiple facilities making them more likely to be able to move the virus from place to place, especially if the virus spreads more easily this winter.
Mark Parkinson, president of the American Health Care Association and the National Center for Assisted Living, a trade group, said they are largely at the mercy of the surrounding communities, despite the facilities’ efforts to protect residents.
There is currently a patchwork of state and federal guidelines governing how long-term care facilities handle visits by family members and friends of residents. Some let families in while many only allow outdoor visits, a dwindling option in colder weather.
Previously, relatives could pay a visit to ensure residents finished lunch and had their teeth brushed. A family member’s face and touch can be anchors, experts said, and such a presence helps evoke people’s long-term memories.
“These familiar faces are what our residents rely on to determine if they are in a safe place or not,” said Dr. Jim Wright, a medical director of a nursing home in Richmond, Virginia, who criticized the safety conditions at a facility he worked at after the death of 51 residents that spring.
At the beginning of the pandemic, Charlie Cape could still recognize his 50-year-old wife Linda.
Mr. Cape learned that he had Alzheimer’s a decade ago and had spent the last two years in a senior care facility in Sarasota, Florida, where Ms. Cape visited him almost every day. As a nurse, she would sometimes help him feed him, shower, shave, and give him regular pedicures.
His weight was stable, she said, about 180 pounds. He could string a few words together. He went to gatherings when they were pinned on his floor and even danced to “My Girl” with his wife before the pandemic.
Then the facility stopped admitting visitors.
Ms. Cape said she tried video chatting with her husband but that the technology was intimidating. He didn’t understand how the iPad worked and looked elsewhere or got up and walked away. On such calls between March and August, she could see him picking up and backing off. He no longer takes part in group activities, she said. It’s been months since she could understand everything he was saying.
Ms. Cape said she did not hold the facility responsible for banning visitors and was impressed with the staff and communications during the pandemic. HarborChase did not respond to interview requests.
“Charlie doesn’t know us anymore,” she said in October after seeing him as resumed visits. She and her son go out with a cookie and a Diet Coke every Sunday unless Mr. Cape is asleep. Sometimes during these visits Mr. Cape just sits and cries.
Part of his decline may be due to Alzheimer’s, Ms. Cape said, but she believes the long period of isolation from family accelerated her progress. If nothing else, she feels like she missed a crucial time in his life when he still knew who she was.
“I wish I had a little more time with him, a little more time,” she said. “This is my regret.”
A survey of 365 people living in care facilities across the country found that most no longer leave their rooms to socialize. Three out of four residents said they felt lonely.
Susan Hailey, 77, is trying to recover from five months of isolation. She moved to Kirkland’s Life Care Center to recover from knee surgery but contracted the coronavirus and watched her roommate and closest friend die from the virus at the facility. She fell twice and began to hallucinate that the dead were visiting her.
“I missed talking to my family, touching them and kissing them on the cheek,” she said.
In August she moved to a small adult care home, where she learned to walk again. She still has cognitive problems and can no longer read detective novels because she forgets what happened from one paragraph to the next.
But she says she is happy and hopeful now, and when her two daughters were visiting one evening, Mrs. Hailey smiled and asked, “Touch me, will you?”
Jack Healy reported from Kirkland and Danielle Ivory and Serge F. Kovaleski from New York. Susan C. Beachy contributed to the research.