TALLAHASSEE, Fla. – A Florida lawmaker from Tallahassee has filed legislation to make sure 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 went viral for getting a job as a dishwasher at her husband’s facility in Jacksonville to reunite with him, shared images and stories of the toll that lockdowns and isolation can have on residents of such facilities. She said she’s collecting this content from Floridians to publish a book titled “Saving them to death” to hand out to every Florida lawmaker as HB-987 makes its way through the next legislative session in January.
“We think we are saving them, we think we are doing the right thing, but we are saving them to death,” Daniel said. “The isolation is killing their spirit, it’s killing their health and killing their family members.”
Family members’ firsthand experience
It’s something Cynthia Desilvio witnessed with her 83-year-old mother, who suffers from dementia. During lockdowns, Desilvio’s only way of seeing her mother was through a camera set up in her room at a long-term care facility.
“I named it solitary confinement, that is what I felt my mother received. She received a sentence,” Desilvio said. “I had a camera in the room, which was my only saving grace being able to see her, and I saw my mother’s loneliness. I saw her screaming out, ‘Hello, anybody? Hello?’, for hours by herself.”
Once Desilvio was finally able to see her mom in person, she said she was unrecognizable.
“I thought she was dying,” Desilvio said. “I thought she was on her death bed.”
Desilvio shared images of her mother in that state, but later images show her full of life, even salsa dancing at her 83rd birthday party in March.
“She does look happy, we were able to take her out during her birthday and the video of her dancing — she loves her music, she just is in a better place even though her dementia has gotten worse,” Desilvio said.
It was the same story for Michelle Starks, who said her father is recovering from a stroke and quickly declined during lockdown.
“My father was doing really well before COVID. He was happy, active in his community, they would do activities and once the lockdown hit and losing staff, they were very isolated,” Starks said. “What you were seeing was my father 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.
“I couldn’t do the advocating from Maryland anymore, this year was really rough,” Starks said.
Like Desilvio, when Starks finally had a chance to see her father after about two weeks of isolation, he too was unrecognizable.
“When I walked in the room, I thought he was dying,” Starks said. “It was devastating, he lost a lot of weight, they assumed he was bed bound and he wasn’t able to get out of bed. For me to see my father going from this strong man who was able to dress himself to be reliant on them to do everything for them, he had no dignity left.”
However, Starks shared a photo of her father taken weeks ago as she took him to get his flu shot, showing him back to a healthy weight with rosy cheeks and a smile.
“He’s sitting up and hanging out with his roommate, it’s a huge difference,” Stark added.
Isolation kills, medical professionals say
Dr. Kevin O’Neil, geriatrician and chief medical officer of the assisted living facility group ALG Senior, 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 belief that isolation kills.
“Social isolation, we know, is toxic,” O’Neil said. “It’s associated for higher risk of heart attacks, stroke, high-risk diseases and even death.”
At the long-term care facilities he works for, O’Neil said he saw with his own eyes the rapid deterioration in patients during lockdowns.
“What we are seeing during these times, these folks here having decline more than we would have expected during the natural course of the aging process,” O’Neil said. “Then, seeing the improvement that occurred when they were engaged and active confirmed to us it was really related to loneliness and isolation and not any intervening illness.”
O’Neil said he supports the new legislation in order to prevent that from happening again.
“I think heightening public awareness and among our lawmakers is important for them to understand how important those essential caregivers are to older adults,” O’Neil said. “It’s going to light a fire and I think it’s important.”
New legislation
These stories are what compelled State Rep. Jason Shoaf to officially file HB-987.
“When COVID first hit, the world completely overreacted. Driving by fear, we shut down and locked people out. One example of that is when nursing homes locked out visitors,” Shoaf said. “HB-987 will make sure Floridians in nursing homes won’t be locked in again. This bill guarantees their right to a visit from their loved one.”
Daniel, who advocated with groups across the country to pass federal bills such as this, said it’s already happened in Texas.
“It (the Texas bill) allows a minimum of a two-hour visit every day by this essential caregiver,” Daniel said. “The truth is we absolutely need this bill, so to get it filed right before Christmas is the best thing ever.”
Now, Daniel hopes these stories will help get HB-987 passed in Florida.
The legislation still needs a companion bill filed in the Senate. The Florida legislative session begins Jan. 11.
“We do understand we need to be careful and safe, but we also know isolation kills, too, and we have to be able to get in there,” Daniel said.