Once a week outside a Newington nursing home, Peggy Johnson stands masked, 6 feet apart from her 94-year-old mom, imagining what it would be like to hug again.
“When they’re wheeling her back inside she’s crying,” Johnson said. “She says things to me like, ‘Nobody wants me. Nobody loves me.’ And it’s so hard. I want to grab the wheelchair and run with her.”
Johnson’s mom, Gladys Tucker, had a stroke six years ago, which gave way to progressive dementia. As the realization of a fading memory took hold, she had a request for her daughter.
“She made me promise that I would always take care of her. And, of course, I told her I would,” Johnson said. “I never dreamed that I would be locked out of the nursing home and not able to see her and continue to care for her.”
But COVID-19 has made the previously unimaginable a reality.
In Connecticut, more than 2,800 nursing home residents have died due to COVID-19 complications. State statistics show nursing homes reported around 8,800 cases of the virus, including Johnson’s mother, who was asymptomatic and later tested negative.
In March, in part to guard against asymptomatic transmission of COVID-19, state officials barred most family visits at nursing homes. Public health officials later ordered resident cohorting and COVID-19 testing for nursing home residents and staff.
Eventually, infection rates dropped. Only five cases and two COVID-related deaths were reported in the latest week of statistics. But a question persists: how to defend against a virus that’s killed thousands while also ensuring that social isolation doesn’t destroy the physical and emotional well-being of residents relying on family members for supplemental care.
“We’ve actually heard both sides of it,” said Mairead Painter, the state’s long-term care ombudsman who hosts a weekly Facebook Live call with family members of nursing home residents.
“I would say we’ve heard more from individuals who want connections to their loved ones,” Painter said. “There were many … care needs that were being provided and supplemented to the nursing home by family members … there’s some real gaps now.”
“We have other residents that are concerned,” Painter said. “They’re worried about exposure, who’s coming in and out of the home.”
This week a coalition of disability and eldercare advocates wrote to the state Department of Public Health, urging the agency to issue clearer guidance on visitation, which would allow for more in-person visits and expand the definition of indoor “compassionate care” visits.
Right now, those visits are only allowed when a nursing home resident is dying, according to the DPH.
Federal guidelines were updated to expand those types of “compassionate care” visits on June 23, allowing for a more lenient interpretation of who can visit with a loved one in a nursing home. But over a month later, it’s unclear when state guidelines will align with federal standards.
“Nursing home residents with comorbidities are perhaps the most vulnerable population during this pandemic,” DPH spokesperson Av Harris said in an emailed statement. “With the exception of compassionate care visits, indoor visitation is not being considered at this time, however, the Department has convened a working group that is evaluating potentially expanding the definition of compassionate care visits.”
The department declined to specify when the guidelines would be updated.
“We originally thought there would be something out last week, but with the storm and the response to the life and safety needs … a lot of the attention and time had to be diverted to that,” Painter said.
Meanwhile, Lucy Potter of Greater Hartford Legal Aid said some nursing home residents continue to suffer in isolation.
“This group of people in these nursing homes have just lived through this nightmare where people have been dying all around them,” Potter said. “It … can be very important to have that contact of the person who you’ve always known and loved to help you.”
Compromises have been made. DPH said the agency “purchased about 800 iPads and distributed these devices to every nursing home in Connecticut to help facilitate virtual visitation.” And in June, the state allowed weekly outside visits to alleviate resident isolation.
But Painter said implementation of virtual and outdoor visits is spotty.
“We have some [facilities] that are really doing a fabulous job with it. And we have others who just are not,” Painter said.
Meanwhile, major eldercare organizations say they can’t change visitation rules at their facilities until they have clearer guidance from the state.
“We’re all waiting for that reopening guidance and we will move along from there,” said Mag Morelli, president of LeadingAge Connecticut, which represents not-for-profit aging service providers. “We are looking forward to it. We’re optimistic about it.”
Morelli and Matt Barrett, president of the Connecticut Association of Health Care Facilities, said the prevalence of the virus in Connecticut will be crucial to any loosening of visitor restrictions.
“That will be a key feature as public health officials inform and advise on the next phase of reopening Connecticut nursing facilities to visitors,” Barrett said. “There is little disagreement that we need to move in that direction. … We think Connecticut officials are moving in that direction.”
Painter acknowledges it will be a long time before visitation at nursing homes is anywhere close to what it was pre-COVID-19.
“We know they can’t just open the doors and let everybody in … we don’t want to see Connecticut go backwards,” Painter said.
Peggy Johnson said she’s willing to wear appropriate protective gear or get tested before going to see her mother. She’ll do anything to give her mom a hug and comfort.
“I see her in the courtyard and she’s going back inside crying,” Johnson said. “And I dread the next morning I might get that call that says she’s gone. And the last I saw her, she was sad.”