Jean White has fond memories of her mother visiting her at the horse farm she lives on in Brooksville, before her mom's dementia worsened and she started living in a memory care facility.
“Interestingly enough, she would remember one of my ponies' names, Teegan, long after she kind of didn't know my name,” White said as she prepared to feed her animals.
White's mother moved into a facility in Brandon just as coronavirus lockdowns began in the spring of 2020. The family never even entered her room.
White said window visits were too upsetting for her mom, and said even after families were finally allowed in months later there was no consistency. Sometimes she could visit; other times she couldn't because a resident or staff member had the virus. All the while her mom's health was deteriorating.
"You know it's going to happen, but still, when it does,” said White about the pain she felt seeing her mother’s decline. “And when you haven't — when you miss time that you thought you had."
Bills making their way through the state legislature would make it easier for people like White to see their loved ones by preventing facilities from limiting visitation if a patient or resident was in need, even in a health crisis.
White said in the beginning of the pandemic, when she never dreamed it would last this long, she believed the separation was worth protecting her mom from COVID. Now, she said she’s not so sure.
“What anxiety, loneliness and confusion she must have had ... I think I would have rather her seen her family,” White said.
White said things have improved recently. Her eyes welled up with tears as she recalled spending Christmas with her mom at the facility. When her dad told his wife he would “love her forever,” White said her mom, who is largely nonverbal at this point, perked up and said, “I love you too.”
White said she hopes this time the facility stays open for good so her mom can continue to have those small moments of joy. But she said she would want any law put in place to prioritize safety.
“My mom’s life is not more important than a staff members,” White said.
One proposal would allow residents in long-term care facilities to designate an essential caregiver who would be allowed to visit for two hours a day. Rep. Jason Shoaf (R-Port St. Joe) sponsors the House version while Sen. Gayle Harrell (R-Stuart) introduced its companion in the Senate.
A similar bill from Sen. Illeana Garcia, R-Miami, known as the “No Patient Left Alone Act” extends to hospitals and other health centers but is more vague about visitation rules.
Facilities could require families to follow infection protocols and ban people from entering who refuse to comply.
That's fine with advocates like Mary Daniel of Jacksonville, who gained national fame for taking a dishwasher job at her husband's memory care facility to see him during the initial lockdown.
She’s been fighting for visitation rights at the state and federal levels ever since as leader of the group Caregivers for Compromise, and played a major role in the Florida's decision to order long-term care facilities to reopen for visitation in the fall of 2020.
“I mean we're not here beating down the door saying, “You can never kick us out and I'm going to be here as long as I want to,’” said Daniel. “We understand, we want to protect their health, we want to be sure that everything is safe.”
Gov. Ron DeSantis has voiced support for visitation protections as well. At a press conference in Jacksonville earlier this month, he suggested some sort of "patients bill of rights" package would pass this session.
"COVID cannot be used as a excuse to deny patients basic rights, and one of the rights of being a patient, I think, is having your loved ones present," DeSantis said.
In late November, the Centers for Medicare and Medicaid Services directed nursing homes to open their doors to visitors even amid COVID-19 outbreaks, so long as the resident or visitor in question has not tested positive for the virus. Federal health officials clarified amid the omicron surge that adjustments may have to be made in extreme circumstances.
But assisted living facilities and other health centers aren't regulated the same way, and some industry leaders fear the state bills won’t provide operators the flexibility they need to protect residents and staff.
Veronica Catoe, CEO of the Florida Assisted Living Association, said she represents facilities with different capabilities to accommodate visitation. Some are large with private rooms and multiple common areas; others are single-family homes that just have a handful of residents.
“These operators are trying to protect not only the loved one that wants a visit but also the loved one that doesn't want these outsiders coming in and they both have resident rights,” said Catoe.
READ: Bill text for the essential caregivers legislation
The bills do allow facilities to restrict general visitation in health emergencies, but there are exceptions. These include if a patient is dying, having difficulty transitioning to their new environment or experiencing emotional distress, among other factors.
READ: Bill text for the "No Patient Left Alone Act"
Catoe said those situations aren't always easy to define.
“Is it the facility that makes that decision, or is it the family that makes that decision, or is it the resident?” she asked. “And when they're in conflict, who gets the deciding factor?”
Hospitals also face challenges when it comes to visitation in a pandemic.
“They are extremely reluctant to place restrictions on [visitor] access, and it has largely been done during this extremely unusual time period when we have had a virus — continue to have a virus — that we are often learning something new about every day,” said Mary Mayhew, president of the Florida Hospital Association.
Mayhew added the majority of patients in hospitals are people who are sick or injured, which makes them vulnerable to infection.
“There is significant risk of any of those patients getting exposed to, in this case COVID, that might be brought in by a visitor,” said Mayhew.
Mayhew stressed hospitals have tried to get families in for end-of-life visits even during case surges and lockdowns and said she supports giving families more protections in those situations.
Unfortunately, not all family members make it in time.
Parrish resident Glen Muirhead’s mother died from health complications in a Fort Lauderdale hospital in June 2020, when much was still unknown about the virus. Staff contacted his brother, who lived close by, when they realized his mother was dying. By the time he got to the hospital, she had already passed.
“The only person that my mother saw for the last ten days of her life were medical people,” said Muirhead.
He said the experience traumatized his family.
“She did not see her family members who were close and could be at her bedside to share the hugs,” he said. “We couldn’t give them, we couldn’t receive them, and right now as I’m talking I’m getting a little choked up. Those are treasures that I’ll never have.”
Even for some families that did get to see their loved ones, it was essentially too late.
"By the time we saw him, I mean, he was gone,” said Kevin Rzescut of Seminole.
His father died from a bacterial infection this past August, when hospitals were overrun with COVID patients sick with the delta variant.
For nearly two weeks Rzeszut couldn't see his dad until doctors told the family to come say their goodbyes. His then 11-year-old son went with him.
“I think the worst part for me was that my son got to see him, you know, just hooked up to a bunch of machines and totally out of it, like that was it, you know?” said Rzeszut, his voice breaking with emotion.
Rzeszut said staff did the best they could and ultimately blamed people who refused to get vaccinated or take other measures to prevent the spread of COVID for putting health facilities in a position where it was necessary to limit visitors.
Still he said his father's death was rather sudden and wonders if the family would have noticed a decline sooner had they been able to visit, especially his mom.
“The nurses and doctors, they can look at notes all day long, but they don't know him, they haven't spent 53 years with the man,” Rzeszut said. “Like she'd be more attuned to minor improvements or degradations. Maybe that’s a pipe dream, but it feels real.”
Health leaders say they recognize that families are vital to patient care.
The two bills are working their way through committees and could get combined, though advocates like Mary Daniel say they want lawmakers to consider the needs of long-term care residents in a separate section from hospital patients.
She and other supporters say given the staffing challenges the health care industry is facing, it’s more important than ever that families be allowed at the bedside with their loved ones.
"We're tired of fighting and we think we can do this as a team," said Daniel.
Stephanie Colombini produced this story as part of the America Amplified initiative using community engagement to inform and strengthen local, regional and national journalism. America Amplified is a public media initiative funded by the Corporation for Public Broadcasting.
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