ROTTERDAM JUNCTION, N.Y. (AP) — 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 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 others’ 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.”
But to many families who felt pressured to act, like Bednarowski’s, the longer the lockdowns stretched on, the less leaving loved ones in a nursing home felt like a choice. Patients, many frail, were walled off from those who could advocate for them as staffing shortages sharply reduced care. COVID has killed more than 140,000 U.S. nursing home residents, 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’?”
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% 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.
“I was like an archaeologist looking for clues,” says Beth Heard Frith of Lafayette, La., who was barred for months from spending time with her 92-year-old mother, but continued stopping by the nursing home to pick up her laundry. “Why is there a hospital gown in there when I know she’s supposed to have eight nightgowns? Why did everything reek of urine?”
Last fall, Frith moved her mother out of the facility and into her home after a doctor determined that Elizabeth Heard’s declining health qualified her for hospice care. When Heard died in February, her family was there to pray at her bedside.
Of course, when the lockdowns started, no one knew how long they would last. During window visits, when Bednarowski motioned to her daughter to come inside, Ryder promised she’d be right there—knowing that within a few seconds, the moment would slip from her mother’s mind.
Once a week, nursing home staffers put a tablet computer in front of Bednarowski and connected her with her children by video. But she just stared into the air before shuffling away, leaving family members with a view of the nursing home ceiling.
Ryder says she tried hard not to let her mother’s condition bother her. Late on many nights, though, husband Jimmy heard her sobbing in the bathroom. “It killed her,” he says.
Bednarowski’s family and the relatives of other nursing home residents pressed for entry, arguing that the care they provided was essential, but got no traction. By early September, after six months of separation, the frustration was boiling over.
Ryder joined about 40 others on the sidewalk outside the nursing home demanding entry. A few weeks later, state officials began allowing brief visits, but with sharp restrictions.
At their first meeting, in late September of 2020, mother and daughter were required to stay at opposite ends of an eight-foot table. Bednarowski’s hair, wet and unbrushed, was filled with lice. Instead of clothes, she was wrapped in a towel, eyes cast down in a vacant stare, a photo taken during the visit shows.
“I couldn’t touch her. I couldn’t hug her,” Ryder says. “She looked right through me.”
Back in her garage, Ryder spent hours mounting protest signs on lengths of wood molding. “Essential Caregivers Work for LOVE,” read one. “SAVE Betty,” demanded another.
In mid-October she joined dozens of other New Yorkers with relatives in nursing homes in front of the state Capitol, calling on Gov. Andrew Cuomo to give family caregivers immediate access. Their request was denied.
About 10 days later, Ryder’s brother, Bill Bednarowski, the oldest of the four siblings, had his own distanced visit with their mother and left shaken. “Actual photo of how well I’m keeping it all together right now,” brother texted sister afterward. He attached a picture of an electrical pole snapped apart like a toothpick and held up, just barely, with bands of duct tape. There was only one thing the siblings could do.
“Let’s bring her home,” Ryder answered.
Early last October, a woman named Jill Wisler, who lives about 200 miles from Ryder on New York’s Long Island, took her own mother out of a nursing facility.
Months of separation had been hard on both women, the only two living members of their family. When staffers wheeled Arlene Wisler, 88, to the nursing home window with a black eye and no adequate explanation, her daughter knew she couldn’t leave her there.
Jill Wisler, an insurance fraud investigator working from home during the pandemic, learned New York state would allow her mother’s Medicaid assistance to pay for home care. Wisler spent months cycling through nursing aides, who are in short supply. Because her mother has advanced Alzheimer’s, she does not know who Wisler is and she must be lifted in and out of bed.
With care, Arlene has regained lost weight and stabilized. And Jill, who stays home each night to be with her mother, has found some peace. “Even if the pandemic ended tomorrow, I still have my mom,” says Wisler, of Plainview, New York. “Some days are good and some days are bad. But every day is a victory.”
After bringing her mother home, Wisler mentioned her decision on a Facebook group for families battling the lockdowns, Caregivers for Compromise. Another New York woman looking to remove her mother from a nursing home asked Wisler for guidance. Then another. And another.
Susan Ryder was one. Last November 4, days after collecting advice and encouragement from Wisler, Ryder pulled up in front of the nursing home. Employees had piled all of Betty Bednarowksi’s clothes and other possessions into clear plastic bags, waiting at the curb.
In addition to the lost weight, Bednarowski was no longer continent. She spent hours whistling “Winter Wonderland,” something she hadn’t done before the lockdown. Her children believe she seized on the song as a source of comfort from the isolation.
Ryder settled her mom into a bedroom one of her sons left behind, hanging a sign on the door salvaged from Bednarowski’s quarters at the nursing home: “Betty’s Place.” On shelves above the bed, she lined up plush figurines her mother had won at nursing home games of Bingo.
“She wakes up every single day to a familiar face. She tells me she loves me…and I know she’s safe,” Ryder says. “I don’t have to wonder where bruises came from on her body. I don’t have to wonder if she’s sitting in a wet undergarment.”
With those worries put aside, the days have settled into a routine that seesaws between a new set of stresses and moments of affirmation.
“Sweet Caroline! Good times never seemed so good!” Ryder sings on a recent afternoon spent, like so many others, with Bednarowski swaying to her lead from a recliner in the living room.
“So good! So good! So good!” Bednarowski sings back, gleefully. She can’t play the piano or dance the jitterbug the way she used to, but music is still her go-to place.
Other times mother and daughter bat a balloon back and forth or sit together to watch episodes of “Friends.” On Tuesdays, Ryder’s brother takes a seat alongside Betty at dinner and on Friday mornings, it’s his sister Cheryl’s turn.
Bednarowski struggles to remember who they are. But from the moment she wakes to Ryder’s touch, she is reminded that this is home. The good times, though, are often just moments removed from the hard ones. Bednarowski, fierce in protecting her modesty, curses at her daughter when she tries to change soiled clothes. She strains to get away when Ryder takes a blood sample, required to monitor one of her medications.
It’s like being the parent of a small child again, Ryder says, except a toddler learns to do things. Betty never does so Susan has to. “I used to be like: ‘You have to do this. Put your foot in this pants legs!’… And she would fight me,” Ryder says. “Now I take five seconds and just wait and do nothing and try again. And sometimes it works and sometimes it doesn’t.”
One night this fall, locked together in the bathroom, the battle of wills over changing soiled undergarments exploded just as Ryder broke into the sweat of a hot flash. The feelings that welled up inside her were so intense, she kicked a hole in a wall.
When Ryder was laid off about a month after taking her mother out of the home, she embraced it as a chance to fully devote herself to caregiving. Medicaid pays for a nursing assistant to visit for eight hours, four days a week, giving Ryder a chance to leave care to someone else, shop for groceries and get to the chiropractor.
But getting by on the paycheck of her husband, a flooring installer, has created a squeeze. Not long before Bednarowski came to live with them, the Ryders finally retired thousands in credit card debt they took on to rebuild their home after a 2011 flood. Now, Ryder is back to agonizing over which bills she can delay paying.
The couple agrees she should look for a new job. But she worries about finding one with hours and flexibility that will allow her to care for her mother. The reasons for going back to work, though, extend beyond finances.
“Do I wish I had my life back? Some days, especially when there’s so much craziness going on,” Ryder says. “But I know she’s safe. I know she’s happy and that’s what matters most. Right?”
Bednarowski, sitting across the breakfast table, looks up but doesn’t answer.
The Ryders joke that the past year, with all its joys and exasperations, could be a reality television show. They’d call it “Bringing up Betty.”
Today’s episode ends where it began. In the bathroom, Betty curses at her daughter for trying to change her clothes, but Susan laughs off the threat. Waiting in the hallway, Jimmy Ryder takes his mother-in-law’s hand and guides her to her bedroom. Susan turns the radio on low so her mother can drift off to music.
“I love you,” she tells Bednarowski, tucking her in. “Who do you love? How about Susan and Cheryl and Karen?” It’s a gentle reminder to her mother that she raised three daughters.
“You’re right!” Betty says, beaming.
“I had a good Mom. She taught me lots of stuff,” Susan tells her. She leans down to kiss her mother, then turns off the light as a 1980s anthem floats from the radio.
“We are strong. No one can tell us we’re wrong,” it goes. “Both of us knowing, Love is a battlefield.”