Mary Daniel took a job washing dishes at her husband’s Florida memory facility to see him during the initial coronavirus lockdown. She has fought for visitation rights ever since.
Tiffany Manning for NPR
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Tiffany Manning for NPR
Mary Daniel took a job washing dishes at her husband’s Florida memory facility to see him during the initial coronavirus lockdown. She has fought for visitation rights ever since.
Tiffany Manning for NPR
Jean White’s mother suffered from dementia and moved to a memory care facility near Tampa, Fla., as soon as the coronavirus lockdown began in the spring of 2020. For months, the family was not allowed inside for visits. .
They tried video chat and visits from outside her bedroom window, but White says it only annoyed her mother, 87.
White’s mother couldn’t understand why she could hear familiar voices but couldn’t be with her loved ones.
When the family was allowed in to see her, things continued to happen. White said the facility continues to close any time a resident or employee is infected with the virus.
During that time, her mother’s memory deteriorated.
“You know it’s going to happen, but still, when it happens. And when you haven’t – when you miss the time you thought you had,” said White, tentatively and emotionally. when talking about his mother’s downfall.
White said that visitation restrictions have been eased in recent months, but she questioned whether protecting her mother from COVID-19 was worth the long period of separation.
“She must have been worried, lonely and confused – I think I would rather she would see her family,” she said.
On March 11, the Florida Legislature passed a bill that would make it easier for people like White to see their loved ones in medical facilities. Governor Ron DeSantis is expected to sign it in the coming weeks. At least eight states have passed similar legislation, and several others are considering bills.
Some laws, such as those passed last year in New York and Texas, are specific to long-term care facilities. They allow residents to designate essential caregivers, also known as compassionate caregivers, to visit regardless of a health crisis. Texans also added protections in their constitution.
Other states including Arkansas, North Carolina and Oklahoma have passed similar “Do Not Leave Patients Alone” laws that also ensure visitor access in hospitals.
Hospitals and long-term care facilities place pandemic restrictions on visitors to protect patients and staff from infection. But proponents of the news law say they want to ease restrictions because the rules could have harmed patients.
An Associated Press investigation found that for every two long-term care residents who die from COVID-19, another resident dies prematurely from other causes. Report, to be published by the end of 2020, claiming that some of those deaths were due to neglect. Other deaths, listed on death certificates as “undeveloped”, are associated with despair.
Even in areas of the US with low COVID rates, the risk of death for nursing home residents with dementia is 14% higher in 2020, compared with 2019, according to a study. announced in February. in Neuroscience JAMA.
The researchers point to factors beyond COVID infection that may contribute to increased mortality, such as less access to home health care and community support, and “impact negative effects of isolation and loneliness in society”.
She worked as a cook so she could meet her husband
As long-term care facilities and hospitals began to close to family visitors, patient advocate Mary Daniel, from Jacksonville, Fla., worried about what might happen to her husband. you, Steve, who has Alzheimer’s disease.
“I made a promise to him when he was diagnosed that I would be by his side every step of the way, and for 114 days I couldn’t do it,” Daniel said.
To get back inside, Daniel had a job washing dishes at her husband’s assisted living facility so she could see him.
Daniel would work in the kitchen two nights a week, then after the shift she would go to his room. She would help him change into his pajamas and lay beside him watching TV until he fell asleep.
“That’s really why I was there, being his wife, holding his hand, letting him feel that love,” Daniel said.
Daniel has been fighting for visitor rights at the state and federal level ever since. She is a leader of Caretaker for compromise, an alliance with thousands of members. She also served on a state task force that announced Florida’s decision to require long-term care facilities to reopen to families in the fall of 2020.
“We understand that COVID kills people, but we want to make sure that people also understand the acts of isolation that kill people,” Daniel said.
While visitation laws are wide open, they also include provisions to protect patients and staff by directing facilities to establish infection control measures that families must follow in order to enter. That could mean mask requirements or health checks. In Florida, visitor procedures couldn’t be more stringent for staff, and vaccination status couldn’t be a factor.
Also in Florida, establishments will be able to ban visitors who don’t follow the rules. That’s fine with supporters like Daniel.
“I mean we’re not here banging on the door and saying, ‘You can never kick us out and I’ll stay here as long as I want,'” she said. “We want to protect their health, we want to make sure everything is safe.”
DeSantis, who appointed Daniel to the 2020 task force, is a strong advocate of expanding visitor access.
“COVID cannot be used as an excuse to deny basic patient rights, and one of the patient’s rights, I think, is to have your loved ones present,” DeSantis said. in a press conference in February.
Balance the joy of being examined with the risk of infection
In November, Centers for Medicare & Medicaid Services directed nursing home open to visitors even during a COVID-19 outbreak, as long as they screen visitors to see if they test positive or have symptoms of COVID-19.
Hospitals and assisted living facilities are not regulated the same way as nursing homes. Some healthcare industry leaders fear the new laws for hospitals and assisted living will not give operators the flexibility they need to respond to the crisis.
Veronica Catoe, CEO of the Florida Living Support Association, said she represents facilities with different capacities to accommodate visits. Some are large with private rooms and many common areas; others are single-family homes with only a small number of residents.
“The operators are trying to protect not only the relatives who want to visit, but also the relatives who don’t want these outsiders in. Both have residency rights,” Catoe said.
Florida law provides for different situations in which visitation must be authorized at all times. Those factors include if a patient is dying, is struggling to transition to a new environment, or is experiencing emotional distress, among other factors.
Those situations aren’t always easy to identify, Catoe said.
“Is it the basis of that decision, is it the family that makes that decision, or is it the resident?” she asked. “And when they’re in conflict, who’s the deciding factor?”
The loved one wants to spend more time with the dying loved one
Mary Mayhew, president of the Florida Hospital Association, said the decision also makes it difficult for medical centers.
“They are extremely reluctant to place restrictions on [visitor] and it’s largely done during this extremely unusual time when we’ve had the virus – keep having the virus – that we’re usually learning something new every day,” Mayhew said.
She added that people go to the hospital because they are already sick or injured, which makes them more susceptible to infection.
“There is a significant risk to any of those patients coming into contact with COVID, possibly brought in by a visitor,” Mayhew said.
Family is very important to the patient’s care, she said, and stressed that even as COVID surged and closed, hospitals struggled to bring in loved ones, especially when the patient was dying.
Kevin Rzeszut says his family needs more than that.
“I mean by the time we saw him, he was gone. He was no longer conscious; he was on a lot of drugs,” Rzeszut said. His father died at the age of 75 from an infection in August 2021, when Tampa hospitals were overwhelmed with patients with the delta variant.
Rzeszut said he was unable to visit his father for almost two weeks. When doctors asked the family to say goodbye, Rzeszut’s 11-year-old son also followed.
“I think the worst part for me was that my son saw it, you know, just got stuck in a bunch of machines and didn’t work at all, that’s it, you know?” said Rzeszut, his voice cracking with emotion.
He said the staff did the best they could.
“Nurses and doctors, they can look at the notes all day, but they don’t know him, they haven’t spent 53 years with the man” like his mother had, Rzeszut said. “She’ll be more than satisfied with small improvements or setbacks. Maybe it’s a pipe dream, but it feels real.”
Rzeszut said he is in favor of measures to give families more access to their loved ones, as long as coercing them doesn’t add extra workload to an “already” healthcare system Overload”.
What he really wants, he said, is that more people will take COVID seriously so people don’t need the law to visit their loved ones.
This story comes from NPR’s health reporting partnership with WUSF and KHN (Kaiser Health News).
