PROVIDENCE — It had been nearly a year since 91-year-old Elena Carbone had been hugged by her family. When her five children were finally able to hold her hand in late January, at the nursing home where she’d been isolated since the start of the pandemic, Carbone was dying.
Her daughters, Patricia Medeiros and Maria Tavarozzi, rushed to The Cove, the memory care unit at the Saint Elizabeth Home in East Greenwich, after a nurse called and told them their mother hadn’t had a good morning.
The sisters said they could see why in a glance. Carbone was emaciated, unable to move or eat, and unresponsive. She’d also contracted COVID-19.
“We said, ‘We’re not leaving her,’ and nobody challenged us,” Tavarozzi said. And, for the next six days, until Carbone’s death on Jan. 31, her children took turns caring for her.
“We did everything that you could do, but we lost our mom,” Tavarozzi said.
The sisters say they don’t blame the virus for her death. They blame her isolation, depression, dehydration, staff shortages, and rules that prevented the sisters from visiting regularly and providing care for their mother themselves.
“Maria and I took care of our mom for 12 years. We were essential all those years, and someone else deemed that we were not essential,” Medeiros said. “I’ve come to despise that word.”
Rhode Island is one of more than a dozen states where people are protesting to demand an end to the isolation of loved ones living in long-term care facilities. Protesters in Providence are holding a rally outside the State House Friday at noon to thank the nursing staff and mark the one-year “Banniversary” of when nursing homes and assisted-living facilities in Rhode Island went into lockdown because of COVID-19.
The pandemic rampaged through long-term care facilities, with outbreaks that infected and killed residents and staff. In Rhode Island, nursing homes have had just shy of 1,450 deaths, and close to 170 residents of assisted living facilities have died, according to state Health Department data. Staffing shortages, a perennial issue at nursing homes, remain a problem: A recent analysis by AARP found that a third of the facilities in Rhode Island have reported being short of staff.
But as residents and staff have been vaccinated against COVID-19, new cases of infection, hospitalizations, and deaths have plummeted. In the last two weeks, there were fewer than 10 total new cases, spread across five different nursing homes and two assisted living facilities.
Still, visitors are highly restricted. Visits must be scheduled far in advance, and are kept short. Personal protective equipment is necessary. Social distancing is enforced. And family members are still not allowed to help provide care for their loved ones who are living in the facilities, something that could improve quality of life for residents and ease the burden on staffers who already are stretched thin.
Carbone’s family and others have been pleading for months with politicians, health officials, and nursing home administrators to allow visits from loved ones, and to designate some as essential caregivers during the emergency lockdown.
But the nursing home industry has mostly refused to enact a decision that then-Governor Gina Raimondo made in December for facilities to voluntarily allow essential caregivers, designated by residents, within the homes. The industry also is opposing legislation to require the state Department of Health to develop regulations in order to mandate essential caregivers during disaster emergencies.
Scott Fraser, president and CEO of the Rhode Island Health Care Association, which represents 64 nursing homes in Rhode Island, told the House Health and Human Services Committee during a hearing last Monday that the staff didn’t have time to train and monitor essential caregivers. He said they were concerned that visitors could bring in the virus.
Fraser said the homes were following rules set by the Health Department and encouraging visitation.
Several legislators pushed back. A few had their own personal stories or had heard from constituents, who’d told about being locked out of nursing homes when their loved ones died.
Charlie Galligan, whose mother lives in Saint Elizabeth Manor in Bristol, testified during the hearing that Fraser “was either uninformed or disingenuous” for saying that the homes encouraged visits.
“I would advise [Fraser] to spend more time talking to nurses and CNAs on the inside, who have been the true heroes through this pandemic, who have been working doubles for a year now, rather than the administrators and CEOs,” Galligan said.
The legislation allowing essential caregivers has the support of the Department of Health, but while the bills have found a sympathetic audience at the State House, they haven’t moved out of study.
“People are dying every single day in miserable isolation, and I don’t want you to forget it,” Galligan told the legislators.
Later, Carbone’s daughters said they believe that preventing families from visiting has allowed the homes to avoid accountability for the care.
They saw the toll that COVID-19 had taken on a place that, before the pandemic, was lively and well-staffed. The few nurses and CNAs left were scrambling to keep up with the needs of isolated residents when the sisters insisted on seeing their mother in January, as she lay dying.
“Their commitment and their loyalty and love of these residents is what was keeping them there,” Tavarozzi said. “The staff was hanging on for dear life. We were in awe of what the staff was trying to do under horrific conditions.”