After nearly five months, families are demanding the state allow some form of in-person visitation in Florida nursing homes and assisted living facilities. But their push comes as the state continues to be a coronavirus hotspot, with long-term care residents most at-risk. Officials are looking for a solution.
Mary Daniel, 57, and her husband Steve, 66, had a routine. Every night, she'd visit him at Rosecastle at Deerwood, the Jacksonville memory care facility he's lived in since his Alzheimer's disease progressed. She'd feed him dinner, help him change into pajamas and they would lie in bed for a couple of hours watching TV.
Until one day in March, when she found out she couldn't go back.
“I promised him when he was diagnosed seven years ago that I would be by his side every step of the way, and for 114 days I was not able to do that,” Daniel said.
Daniel said her husband lost ten pounds within the first month of separation. They tried window visits and video chats to stay in touch, but they didn’t work, often leaving Steve extremely distressed. Daniel said she felt like they were running out of time, and she questioned whether protecting him from the coronavirus was worth it.
“What am I saving him from?” she would ask herself as her husband's Alzheimer's continued to advance. “I'm going to miss this period of time when he knows me, when he knows my love, and knows a hug, and knows he's not alone, for that?”
Daniel, who is a professional patient advocate, took a part-time job washing dishes at her husband's facility last month. Now they can spend time together two evenings a week and she said he's already improving.
Taking action
Daniel’s story went viral and she's gone on to become the leader of a grassroots movement to restore visitation in long-term care facilities. She formed a Facebook group called “Caregivers for Compromise – because isolation kills too!” that has more than 7,000 members from across the country.
Many members use the forum to lament the toll the separation is taking on their families. Some say they decided to bring their loved one home, a complicated decision that involves a lot of time, money and effort that isn’t an option for everyone.
Others post horror stories about resident neglect they say wouldn’t have happened if they were there to spot it. One man recently posted that hospital staff contacted him to inform him when his father was transferred there from his nursing home after a fall, they found him caked in dried feces.
Daniel has been organizing members to petition their governments for change. She’s calling on Florida to emulate states like Indiana and Minnesota that have “essential caregiver” designations for people who can prove they visited their loved ones in homes at least twice a week prior to the pandemic. If they test negative for COVID-19 and follow safety precautions, they’re allowed to see them again.
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Her activism got the attention of Gov. Ron DeSantis. He met with her in Jacksonville on Tuesday and appointed her to a task force that’s forming a plan to re-open nursing homes and assisted living facilities to visitors.
“We’ve got to figure out a way to not only protect folks from the virus, but also address some of the serious emotional damage that has been done by our countermeasures to the virus,” DeSantis said.
But doing that is tricky. Florida is still reporting thousands of new coronavirus cases each day.
As of Thursday morning, 3,301 residents and staff at long-term care facilities have died from COVID-19. About one-third of those deaths happened in July alone.
How to visit safely?
Ultimately it will be up to the task force, which also includes Agency for Health Care Administration Secretary Mary Mayhew and several elder care leaders, to come up with guidelines. DeSantis floated his own ideas at the press conference.
“One of the things I think we can do is, any family member who has COVID antibodies should be allowed to go visit the facility,” he said.
That suggestion inspired Diane McMillen of Tampa to schedule a test to see if she has antibodies that could provide immunity against the coronavirus. She doesn’t think she has ever had COVID-19, but she’s willing to get tested if it means she could visit her 85 year-old mother at the assisted living facility she lives in.
McMillen said her mom is physically healthy, but is now depressed and feels like residents don't have a voice in this issue.
“Her words to me, and I wrote them down: ‘It's very hard to walk away without touch,’” she said, describing her mother’s frustration about having to see her kids and grandkids behind windows and screens.
“And we would do anything to be able to go see her, and we want to be safe, definitely.”
But an antibody test won’t tell people if they have the virus right now, and that concerns McMillen.
And experts like Dr. Marissa Levine, a professor in the University of South Florida's College of Public Health, say there’s not enough evidence about how much immunity coronavirus antibodies provide.
"We really do need to learn more about the immunity factors, including what level of antibodies is protective, how long is it protective and could you potentially harbor the virus, say in your nasal passages,” she said. “And you know, quite frankly, we've had a lot of trouble with the antibody tests. They've been among the least reliable of the three major categories of tests, so that’s the challenge, the test itself and then issues related to what antibodies mean."
Brian Lee, a former state Long-Term Care Ombudsman in Florida who now directs the advocacy group Families For Better Care was more blunt.
“If the governor is relying on those tests, it will result in more people dying, that’s it,” he said.
Still, both Lee and Levine say they understand the importance of reuniting families.
“You need to have families in the nursing homes not just to visit their loved ones, but also to hold nursing homes accountable for what’s going on in those hallways, in those rooms, and the families not being there is disadvantageous to the safety of the residents on a daily basis,” said Lee.
He has called for months to put rapid molecular testing machines in every long-term care facility, which could catch active infections in visitors at the door.
Levine agrees that would be the ideal solution, but Florida is nowhere near that point.
The only real movement on rapid testing in nursing homes has involved antigen testing machines that the federal government is deploying to coronavirus hotspots. Levine cautioned even these tests could be risky for visitation because they are more likely to produce false negatives than molecular tests.
Nearly 70 percent of the state’s nursing homes are expected to receive rapid test kits from the federal government, but of the 84 facilities that were supposed to get them in the first wave of shipments last month, only a handful have confirmed they’ve arrived.
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Levine said until testing is ramped up or a vaccine and treatment are widely available, the community will have to “learn how to live with COVID.”
“So I’m all for figuring out a path forward, I think we just need to look at the science and see what makes sense,” Levine said.
Levine recommends limited outdoor visits with masks and physical distancing as a start, and if indoor visitation is necessary, then with families wearing more extensive PPE. That’s happening in a number of other states that have already reopened nursing home visitation, but have lower case rates than Florida.
“The other piece of this is that we have to be laser-focused to get the community transmission rates down, because if they stay high, that just means there’s more probability for COVID to get into a facility,” said Levine. “But if we can get those levels down to a really low level, then I think all these other efforts are more likely to be protective, and we know this population is at the highest risk for death, so it makes sense to be really thoughtful about it.”
”We’ll do anything.”
Families say they will take anything at this point, they’re just desperate to be with their loved ones again.
McMillen’s mother turns 86 in September. On her birthday last year, the whole family gathered for a party at the facility. While that won’t be possible this year, McMillen would settle for a quiet visit on her mom’s front porch.
It may not be filled with the intimacy and physical contact her mother is craving right now, but she said at least it’s a first step.
“Not only do we have to talk about compromise I think for the families, but we have to really talk to our loved ones about compromise,” she said.
McMillen is a member of Daniel’s Facebook group and said she plans to closely follow the state task force.
Daniel said talks have already begun with committee members and she hopes to present plans to the governor soon because “time is of the essence.”
In the meantime, she will keep working her dishwashing shifts at her husband’s assisted living facility until there is a way for her to see him without being a member of the staff. They have resumed their routine of watching TV programs in bed together on the nights she’s there. She said she knows how fortunate she is to be able to see him and will work hard to ensure other families get that opportunity.
“Our story is a love story and it’s something good we all need right now, but the beautiful thing about it to me is that it’s opened the door to be able to make this issue in the forefront of a lot of people’s minds, a lot of media, a lot of politicians, to say, 'We’re desperate to get back to our loved ones, what do we have to do to make that happen?'”
