PROVIDENCE — Roni Ferraro agonizes over the moments of her husband’s life that have slipped away, unnoticed, without her care over the last 10 months.
Since her last real visit with Louie in March at the dementia ward at St. Elizabeth’s Home, Ferraro said, she knows he has declined. When she went, she could see the smart, lovable man she remembered, despite the ravages of the disease. She used to spend hours with him each day, helping him eat, helping him walk.
“These are things that people assume that just because they’re in a nursing home, they are taken care of, but they don’t have the staff,” she said. “Some days they have three aides for 39 people.”
But nursing homes and assisted living facilities closed to visitors last March, as outbreaks of COVID-19 sickened and killed hundreds of people in their facilities. It was months before they allowed even limited, distanced visits — nothing like the one-on-one caregiving that Ferraro and others had done for their family members before the pandemic.
“Our loved ones — they can’t tell us. My husband can’t communicate with me anymore,” Ferraro said. “I call every day, if I can get through, and see if the CNA can bring the phone in and (he can) hear my voice. He’ll babble but sometimes he won’t say anything. I’ll try to imagine how he is.”
When Governor Gina M. Raimondo announced last month that the Health Department had agreed to allow nursing homes and assisted living facilities to permit certain relatives and close friends of patients to be essential caregivers, Ferraro and other families were hopeful. They’d been pushing the Raimondo Administration and local legislators to enact something like the Essential Caregiver Program for Nursing Homes and Assisted Living Facilities, similar to programs in other states.
But there was a caveat: The governor was leaving it up to nursing homes to decide whether they wanted to participate. “We are not forcing this on any nursing home,” Raimondo said on Dec. 18. “Nursing homes have their hands full and we want to be supportive. However, it’s a path to allow family members to visit and take care of their loved ones.”
To the frustration of families, very few have made it an option.
Charles Galligan, whose mother, Audrey, is at St. Elizabeth’s Manor in Bristol, calls the ongoing isolation of residents there “inhumane.” “They’re preserving their longevity and stripping their lives of meaning,” he said.
Now, the families are hoping for some mercy from the General Assembly. The Senate Committee on Health and Human Services is holding a hearing on a bill at 4 p.m. Thursday that would give the governor’s recommendation some teeth. The legislation amends the “Rights of Nursing Home Patients” state law by adding a provision for essential caregivers during a declared emergency. The meeting will be televised by Capitol Television and livestreamed at http://www.rilegislature.gov/CapTV/Pages/default.asp.
The bill, sponsored by Cranston Senator Frank S. Lombardi, would require the Health Department to promulgate rules and regulations to designate essential caregivers for residents of nursing homes and long-term care facilities during an emergency declaration.
Trish and Maria Tavarozzi, whose mother, Elena, is also at St. Elizabeth’s Home, said the families are invested in the care of their loved ones and eager to be trained, tested, and wear personal protective equipment to keep the residents safe. They believe that having family members as essential caregivers can relieve the burdens on overtaxed health care workers — and relieve the isolation of the residents.
“They are in prison for a crime they didn’t commit,” Maria Tavarozzi said.
However, Scott Fraser, president and CEO of the Rhode Island Health Care Association, which represents nursing homes in Rhode Island, said the essential caregiver program is an extra burden.
“In theory, it’s a nice concept, but the timing with COVID outbreaks, preparing for visitations, and vaccines, it’s a lot to ask of our members,” Fraser said.
“First and foremost, the battle is to keep COVID out and treat those who have it,” he added. “And to be asked to put together an essential caregiver program at the same time that we’re getting permissions for the vaccine, that’s a lot coming at our members at once.”
As of Jan. 15, almost all of the nursing homes have been visited by vaccination teams at least once, according to the Health Department. The roll-out of the vaccination program at nursing homes has been dependent on the supply of COVID-19 vaccine received by the state.
Kathleen Heren, Rhode Island’s longterm care ombudsman, said she’s aware of one nursing home that has refused to take part in the essential caregiver program. Others may be hesitating out of safety concerns, she said.
“I can understand. This is probably not the best time to roll it out,” Heren said.
But the whole point of the essential caregivers legislation is to help nursing homes and patients during the pandemic, the families say. They are the only ones who can advocate for the care of their loved ones, and they feel like they’ve been cast aside.
“It’s horrible. It’s indescribable,” said Ferraro. “When your loved one gets a diagnosis of Alzheimer’s, you prepare for a certain journey and you prepare to see them through. And to have it ripped out from under us, I can’t put it into words.”