TALLAHASSEE, Florida –A Florida lawmaker from Tallahassee introduced legislation to ensure Floridians in long-term care facilities have the right to designate an essential caregiver for in-person visits.
Advocates such as Mary Shannon Daniel, who has gone viral for getting a job as a dishwasher at her husband’s Jacksonville facility to track him down, have shared pictures and stories about the toll as the lockdowns and isolation may have on residents of these facilities. She said she is collecting this content from Floridians to publish a book called “Save the Dead” for distribution to all Florida lawmakers as the HB-987 makes its way into the next legislative session in January.
âWe think we are saving them, we think we are doing the right thing, but we are saving them to death,â Daniel said. “Isolation kills their minds, it kills their health and kills their family members.”
First-hand experience of family members
This is something Cynthia Desilvio witnessed with her 83-year-old mother, who suffers from dementia. During the closures, the only way Desilvio could see his mother was by using a camera installed in her room at a long-term care facility.
âI named it isolation, that’s what I felt my mother was receiving. She received a sentence, âDesilvio said. âI had a camera in the room, which was my only saving grace to be able to see it, and I saw my mother’s loneliness. I saw her scream, ‘Hello, anyone? Hello? ‘, For hours on her own.
Once Desilvio finally got to see her mother in person, she said she was unrecognizable.
âI thought she was dying,â Desilvio said. “I thought she was on her deathbed.”
Desilvio shared footage of her mother in this state, but later footage shows her full of life, even dancing salsa at her 83rd birthday party in March.
âShe looks happy, we got to take her out on her birthday and the video of her dancing – she loves her music, she’s just in a better place even though her dementia has gotten worse,â Desilvio said.
It was the same story for Michelle Starks, who said her father was recovering from a stroke and quickly declined during the lockdown.
âMy dad was doing great before COVID. He was happy, active in his community, they were doing activities and once the lockdown hit and losing staff they were very isolated, âStarks said. “What you were seeing was that my father was deteriorating.”
Deteriorating to the point, Starks said that she and her husband decided to sell their Maryland home and change careers to move to Florida.
âI couldn’t do any more advocacy from Maryland, this year has been really tough,â Starks said.
Like Desilvio, when Starks finally got the chance to see his father after about two weeks of isolation, he too was unrecognizable.
âWhen I walked into the room I thought he was dying,â Starks said. âIt was devastating, he lost a lot of weight, they assumed he was bedridden and couldn’t get out of bed. For me to see my father go from this strong man who was able to dress himself to depend on them to do everything for them, he no longer had any dignity.
However, Starks shared a photo of his father taken weeks ago as she took him out for his flu shot, showing him again at a healthy weight with rosy cheeks and a smile.
âHe’s sitting and hanging out with his roommate, that’s a huge difference,â Stark added.
Isolation kills, health professionals say
Dr Kevin O’Neil, geriatrician and chief medical officer of the ALG Senior assisted living group, said he supports the new legislation and shared two medical studies – published in Public Policy & Aging Report and Global Health Research and Policy – supporting his conviction that isolation kills.
âSocial isolation, we know, is toxic,â O’Neil said. “It’s associated with a higher risk of heart attacks, strokes, high-risk illnesses, and even death.”
In the long-term care facilities he works for, O’Neil said he saw first-hand the rapid deterioration of patients during the closures.
âWhat we see during these times, these people here have declined more than we expected during the natural course of the aging process,â said O’Neil. “Then seeing the improvement that happened when they were engaged and active confirmed to us that it really was related to loneliness and isolation and not to intermediate illness.”
O’Neil said he supported the new legislation to prevent this from happening again.
âI think it’s important to educate the public and our legislators to understand how important these essential caregivers are to older people,â O’Neil said. “It’s going to start a fire and I think it’s important.”
These stories are what forced State Representative Jason Shoaf to officially drop HB-987.
âWhen COVID first hit, the world completely overreacted. Driving out of fear, we closed and locked people up. An example of this is when nursing homes have locked out visitors, âShoaf said. “HB-987 will make sure Floridians in nursing homes are no longer locked up.” This bill guarantees their right to visit their loved one.
Daniel, who has advocated with groups across the country to pass federal bills like this one, said it has happened in Texas before.
âIt (the Texas bill) allows at least one two-hour visit per day by this essential caregiver,â Daniel said. “The truth is, we absolutely need this bill, so having it tabled right before Christmas is the best thing.”
Now Daniel is hoping these stories will help get HB-987 adopted in Florida.
The legislation still needs an accompanying bill tabled in the Senate. Florida’s legislative session begins January 11.
âWe understand that we have to be safe and careful, but we also know that isolation kills too, and we have to be able to get into it,â Daniel said.
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