WAPAKONETA — A crisis of loneliness and isolation is unfolding in Ohio’s long-term care facilities, which since the start of the pandemic have restricted when and how families can visit their loved ones in an effort to prevent the disease from spreading to residents.
At least 56% of all COVID-19 deaths in Ohio have been linked to long-term care facilities since mid-April, when the Ohio Department of Health started tracking COVID-19 deaths in nursing homes and assisted living facilities.
And even with outdoor visitations now permitted in Ohio long-term care centers, families of those residents wonder whether there is an alternative, as residents continue to express feelings of isolation, loneliness and depression, and loved ones complain they are no longer able to assist with routine care or spot potential abuses.
“You can’t take a dementia patient and make a window visit work for them, or an outdoor visit work for them,” said Tami Fullen, whose husband, Ron, 76, died in July, months after he was first diagnosed with Lewy Body Dementia.
Fullen tried to care for Ron on her own before she learned of his diagnosis, but was unable to when Ron’s hallucinations and violent outbursts started. After a bad fall landed Ron in the hospital in March, the 76-year-old was transferred to a geriatric psychiatric hospital. He was then placed in a nursing home in Fremont before he ended up in Wapakoneta.
Window visits were stressful. Ron forgot how to hold a phone to his face, Fullen recalls, and would often throw the phone on his bed in frustration. Outdoor visits were not an option either, she said, because of Ron’s behavior.
Ron became even more violent, Fullen said, when he was quarantined after moving to a new facility.
“Imagine yourself: You don’t know who you are, where you are, what is going on and then you have people coming at you with masks on, you have a mask on and they won’t let you out of your room,” she said. “He was just scared.”
Fullen asked repeatedly to see her husband, who she said would crawl around on the floor or wander into stranger’s rooms looking for her. But because of COVID-19 safety restrictions, she wasn’t allowed inside until her husband was on hospice.
By then, Ron forgot his wife’s name. He couldn’t talk. But the couple held hands one last time before his death on July 28. Fullen is now committed to advocating for residents of long-term care facilities, who she says are isolated, lonely and possibly neglected amid the pandemic.
“Our elderly are dying,” she said. “They are what I call the forgotten society.”
What are options?
Some states, like Minnesota and Indiana, have adopted essential caregiver policies allowing designated family members access inside long-term care facilities.
Essential caregivers are still screened for COVID-19 and required to wear personal protective equipment, among other restrictions, but the policies were designed to give families more direct involvement in a resident’s care without fully reopening vulnerable long-term care facilities.
Joseph Gaugler, a professor and chair of long-term care and aging at the University of Minnesota’s School of Public Health Management, said he believes the benefits outweigh the costs because the policy lets families check on their loved ones and see what’s going on inside the facilities for themselves. And family members are often still involved in a resident’s care, even after they are placed in long-term care.
“When they were cut off because of the COVID-19 lockdowns, it was a terrible situation,” Gaugler said. “First and foremost, for the residents themselves, being subject to the potential of social isolation and having challenges connecting with families, particularly those family members or their loved ones who visited regularly. And then on the family members themselves.”
No access, no accountability
“There are people like me that need to make sure things are being done properly,” said Sara Anderson, whose mother, Sue, 72, is a resident at a nursing home in Lima.
Anderson has hardly seen her mother since March, save for the occasional window visit or trip to the hospital. So when Anderson was finally able to sit by her mother’s side at the hospital last week, she was shocked to see Sue’s lips were severely chapped; her feet covered with what appeared to be dead skin; and black gunk caked beneath her fingernails.
“They should be in there every day; cleaning her, making her feel comfortable,” Anderson said.
But Anderson worries that is not happening. And she has few options to make sure that it does.
Ohio eased its visitation restrictions for nursing homes and assisted living facilities this summer, allowing family and friends to schedule outdoor visitations with residents when it’s deemed safe, but visits are not allowed when there are outbreaks within the facility. And nursing homes may take other criteria into consideration, like the prevalence of COVID-19 in the surrounding community, shortages of personal protective equipment or staffing levels.
The policy was intended as a compromise for families who complained about their lack of access to loved ones, but some families and residents are still unhappy with the results.
Leslie Miller took her granddaughter, Presley, 8, to see Miller’s mother Geraldine Brown, 86, at a nursing home in Auglaize County as soon as she was able.
The scene reminded Miller of a jail visit: She and Presley were granted 20 minutes with Brown, who was separated from her family by a fence designed to keep residents a safe distance from outside visitors. Presley and Brown cried, unable to embrace one another as they were accustomed to. The experience was so unsettling that Miller is reluctant to put her mother or grandchildren through it a second time.
“She talks about, if she can’t see her family and this is the way she has to live for the rest of her life, she just wants to die,” Miller said. “She wants God to take her home … Our whole family would miss her, but I would have a peace knowing that she’s not sitting in a room 24 hours a day completely alone, other than staff.”