JerSean Golatt for NPR
It was not the candle light and the soft music that made Luann and Jeff Thibodeau’s 40th birthday so memorable. He was looking out the window of Jeff’s retirement home in Texas, eating take-out from the Olive Garden. Just the two. And an auxiliary nurse.
“She fed him and I ate mine, and that’s it,” said Luann Thibodeau. “So it was our 40th wedding anniversary. “
The Thibodeaux have not been in the same room since mid-March. It was then that visitors were banned from nursing homes to slow the spread of the coronavirus. But family members say FaceTime and holding up window signs are no substitute for the practical care and emotional support their visits provide.
Family members are often an integral part of the care residents of nursing homes receive. They make sure meals are eaten, clothes are changed. They also offer invaluable emotional support.
Otherwise, the consequences can be dire. NPR has spoken to several families about what has happened since the ban on visits in mid-March. All said they had seen shocking declines in their loved ones.
Residents’ advocates say it’s time to rethink the ban outright.
Nursing homes can allow visitors to “compassionate situations”. But this is generally interpreted to mean end-of-life visits. Robyn Grant, director of public policy for the National Consumer Voice for Quality Long Term Care, says that compassionate care needs to be interpreted more broadly.
JerSean Golatt for NPR
“Residents are mentally, physically declining,” she says. “We think these situations are times when family members should be allowed. “
Luann Thibodeau saw this drop from her husband. She used to bring him dinner every night except Tuesday, when she went to Bible study. She says that as his multiple sclerosis has worsened, he is more and more disinterested in food.
“I intimidate him so that he finishes a meal. And I’ll say, ‘Jeff, you know, this is what an adult man eats. So you have to eat this. ‘ ”
A staff member cannot do what they do. Residents of nursing homes have rights. So if Jeff tells a nurse that he’s finished eating after 3 bites, she has to respect her wishes.
Without Luann’s push, the results of his absence are striking.
“When I see him at the window, I can see that his clothes are very big on him,” says Luann. “And I’m pretty sure he lost a lot of weight. ”
And while family members are locked out, residents are locked up. This was not the case before. Luann Thibodeau would take her husband to church on Sunday and to the movies. They were going out for fast food. But she says that since the lockdown, her anxiety has increased. Sometimes he called her 10 times a day.
“He said,” Why are you not here? Why don’t you come? No one will know, ”says Luann. “And he was developing a strategy so I could sneak in through the front door. I could sneak in through the back door and come see him. And so it was really difficult. “
Tara Pixley for NPR
It was also very difficult for Eva Gonzalez, a 98-year-old resident of a nursing home in southern California. She was used to the daily visits of her sons Sky and David.
“She probably feels that we have abandoned her,” said Sky Gonzalez.
Eva Gonzalez lived alone until about 18 months ago. Then she started to have falls and symptoms of dementia. She needed 24 hour care. But now that Sky can only reach her by phone, he no longer sees what type of care she is receiving.
“When I call, she always seems dehydrated,” he says.
She tells him that she needs water. Nursing home staff told him to check her every hour. “But how do you know what’s going on or not going on?” ” he asks.
However, calling her mother directly only makes things worse.
“She became more restless, wondering,” Where are you? Why are you not here? Come get me out of here, “he said.
He begins to cry. “My calls only created more stress for her. “
Tara Pixley for NPR
Banning all non-essentials from nursing homes may have been a wise move at the start of the COVID-19 epidemic. But now the policy needs to be reconsidered, says Tony Chicotel, a lawyer with the California Advocates for Nursing Home Reform. On the one hand, the ban did not keep COVID-19 out of nursing homes.
“The virus infiltrates the building through everyone who enters it, whether it be staff or visitors,” says Chicotel.
The coronavirus is likely to continue to find its way into nursing homes as long as it is still in the community at large.
The Centers for Medicare and Medicaid Services (CMS) have issued guidelines on how nursing homes could reopen to visitors. CMS administrator Seema Verma confirmed in a conference call with journalists earlier this month that it would be up to heads of state and local officials to lay down the rules.
Chicotel says his organization has a proposal that he says would work right now.
“For family members who provide more than companionship, who really support that person’s quality of life in a way that staff probably cannot, these family members should have access to residents as long as they follow the same security protocols. that the staff follows, ”explains Chicotel. These protocols would include the wearing of personal protective equipment and daily temperature controls.
Nancy Snider would have gladly done so. Her husband Matt was in a Michigan nursing home for many years with Huntington’s disease.
“This is one of the worst illnesses you can have,” says Nancy. “And he fought him like a warrior for all these years. ”
Either she, her daughter, or a close family friend saw Matt every day. They performed many tasks which, according to most people, were managed by staff.
“We were coming in and if his shirt had to be changed or if his bedding was not changed or if he still had breakfast food on his face, we would do it,” says Nancy. “Just anything. ”
Without this help and human contact, Matt’s decline was staggering. Her weight dropped to around 90 pounds.
“The fact that no one called me about the change of state really pissed me off because it cost me time. It cost my family time with him, ”said Nancy. “It is too late now. He is actively dying. ”
Shortly after our conversation, she transferred him to a hospice that allowed family visitors. He died a few days later, his wife and daughter holding his hands.