Feeling powerless, families bring elderly home in pandemic

Adam Geller, Associated Press

Pushed up to the breakfast table, Betty Bednarowski folds and refolds her napkin with studied intensity, softly singing “Winter Wonderland” without the words, the same as she did in March and July and September.

Dessert today is a tiny cup of pudding, like yesterday’s, with seven pills Bednarowski can’t swallow, crushed into the butterscotch. Between mouthfuls, Bednarowski, who has advanced Alzheimer’s disease, glances at her daughter, Susan Ryder, and flashes a blissful grin.

It’s probably just as well that, a year after Ryder took her mother out of a nursing home locked down against COVID-19 to rescue her from isolation and neglect, the retired sandwich shop worker never remembers what comes next.

“OK Mom, I’m going to put your stockings on,” Ryder says.

“I don’t want to help!” the 79-year-old growls. The pudding smile is gone. “I can’t do this!”

By the time Bednarowski’s family brought her home they, and thousands more with loved ones in nursing facilities slammed by the pandemic, were desperate. After months of separation, Bednarowski had dropped 20 pounds. Her delight in other’s company had given way to a hollow stare. Her hair was filled with lice.

That’s in the past now. But only because Ryder is her mother’s keeper.

“Oh God! Oh God!” Betty wails. “I’m too...” Before she can finish the sentence, the thought slips away.

Crouched on the floor, Ryder struggles alongside a nursing assistant to pull the compression hose over her mother’s scarred calves. Today is easier. On mornings without help, she presses her face against Betty’s knee to hold it down.

“I know Mom,” she says. “I’m sorry. You’re doing great Betty.”

Mothers and children have battled over getting dressed forever, only here the roles are reversed. If anyone can relate it’s the many families who made the same decision: to bring home the people they love and find peace in comforts and consequences that could outlast the pandemic itself.

“We mostly hear two things. One, they’re really happy they did it. They’re genuinely happy to have their loved ones at home,” says John Schall of the Caregiver Action Network, which has fielded calls from thousands of distressed families. “The other thing we hear is, ‘Oh My God, how difficult this has turned out to be.’ ...It really is fairly unrelenting.”

To families like Bednarowski’s, the longer the lockdowns stretched on the less that leaving loved ones in a nursing home felt like a choice.

Patients, many frail and unable to communicate their needs, were walled off from the family members who could advocate for them, even as staffing shortages and pandemic restrictions sharply reduced care. COVID has killed more than 140,000 residents of U.S. nursing homes, with deaths from other causes also far surpassing previous years.

And Ryder and others like her -- standing at nursing home windows watching the condition of their loved ones deteriorate -- felt powerless to do anything about it.

“It was fear for her safety, for her wellbeing — this is your mother!” says Ryder, herself the parent of two 20-somethings.

“I mean, I don’t know if you have kids. But can you imagine being at work and the school calls and says ‘We’re going to lock the school and we’re going to keep your kids for their own safety’?”

“What would you do?”

The search for an answer to that question began on a March afternoon in 2020. Alarm over COVID was rising quickly, but in New York state it was still focused mostly on the area around the nation’s biggest city, about three hours south.

Ryder, then an office manager at a package delivery contractor, was planning a stop to see her mom at the Schenectady Center for Rehabilitation and Nursing. An hour before her workday ended, an email arrived from a social worker at the home. The facility was barring visitors, effective immediately.

“He was just very matter of fact: we’re doing this for the safety of the residents,” says Ryder, whose family had joined others to raise concerns about care at the facility well before the pandemic. “He promised me that he would check on my mother every day which, in hindsight, was lip service.”

The decision to lock down, while sudden, followed state and federal guidelines and visits were allowed to resume as soon as officials eased restrictions and virus cases were in check, said Jeff Jacomowitz, a spokesman for the nursing home.

But “families who were willing to take their loved ones out of the facility permanently to take care of them were opened to do so,” he said in a written statement.

Driving home, Ryder cried at the wheel. Anyone who knew her mother could see she thrived on human interaction. She loved fussing over customers at Subway, where managers made her the hostess after dementia began limiting her abilities behind the counter. At the nursing facility, she scooted her wheelchair up and down the halls to visit residents and staff.

That need for social connection was one of the reasons the family had resisted placing her in a nursing home. One of Ryder’s sisters spent five years as a live-in caregiver. But after their mother was hospitalized again in 2017 the siblings decided to move her to a care facility, with a pact that family members would visit Bednarowski every day.

In three years before the pandemic hit, they missed just one. Family members brought Bednarowski homemade macaroni and cheese and picked up her dirty laundry. They danced with her, took her out for burgers, held her hand and tucked her in at night.

Then the lockdown forced them to break their promise. They were far from the only ones.

It’s hard to know just how many families have taken loved ones out of nursing homes during the pandemic. But this year has seen a 14 percent increase in patients discharged to go home, according to CarePort, a software provider that connects hospitals with nursing facilities.

In a June survey by the American Health Care Association, an industry group, operators of nearly four in ten nursing homes said they were losing money because patients were moving out.

And with 1.3 million Americans in nursing homes before the outbreaks, advocates say it has forced a painful reckoning in many more households.

“We’ve heard from a lot of families who are just crushed by guilt, in these really tough positions, who want to take their loved ones home but they know they can’t live independently,” says Sam Brooks of the National Consumer Voice for Quality Long-Term Care, which advocates for nursing home residents.

As lockdowns stretched on, taking action began to feel like a necessity to some families.