At the breakfast table, Betty Bednarowski softly sings “Winter Wonderland” without the words, the same as she did in March and July and September.
Dessert today is pudding with seven pills crushed into the butterscotch. Between mouthfuls, Bednarowski, who has advanced Alzheimer’s disease, glances at 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, 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.
By the time Bednarowski’s family brought her home they, like thousands more with loved ones in 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.
That’s in the past now. But only because Ryder is her mother’s keeper.
“Oh God Oh God!” Betty wails.
On the floor, Ryder struggles with a nursing assistant to pull the compression hose over her mother’s calves.
“I know Mom,” she says. “I’m sorry. You’re doing great Betty.”
If anyone can relate it’s families who made the same decision: to bring home the people they love and find peace in the comforts and consequences.
“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. “The other thing we hear is, ’Oh My God, how difficult this has turned out to be.”
But families felt pressured to act. 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.
“It was fear for her safety, for her wellbeing — this is your mother!” says Ryder, herself the parent of two 20-somethings.
“What would you do?”
On a March afternoon in 2020, Ryder, then an office manager at a package delivery contractor, was planning to visit her mom at the Schenectady Center for Rehabilitation and Nursing. An hour before her workday ended, a social worker at the home emailed to say the facility was barring visitors.
The lockdown, while sudden, followed state and federal guidelines and visits were allowed to resume as soon as officials eased restrictions, 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. Her mother thrived on human interaction, whether it was fussing over customers at Subway or scooting her wheelchair up and down the halls to visit nursing home residents and staff.
When the family moved her to the facility in 2017, they made a pact to visit every day. The lockdown forced them to break their promise.
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 survey by the American Health Care Association, nearly four in ten nursing homes reported losing money because patients were moving out.
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 couldn’t visit her mother, but continued 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 home after a doctor determined she qualified for hospice care. She died in February.
Last September, Ryder and 40 others protested outside the nursing home demanding entry. Soon state officials began allowing visits with sharp restrictions.
At their first meeting mother and daughter were kept at opposite ends of an eight-foot table. Bednarowski’s hair was filled with lice. She was wrapped in a towel, eyes cast down in a vacant stare.
“I couldn’t touch her. I couldn’t hug her,” Ryder says. “She looked right through me.”
Last November 4, Ryder moved her mother out of the facility.
“She wakes up every single day to a familiar face. She tells me she loves me…and I know she’s safe,” Ryder says.
Now days have settled into a routine that seesaws between stresses and affirmation.
“Sweet Caroline! Good times never seemed so good!” Ryder sings on a recent afternoon spent as Bednarowski sways in her a recliner.
“So good! So good! So good!” Bednarowski sings back, gleefully. She can’t play the piano like she used to, but music is still her go-to place.
The good times, though, are often 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.
When Ryder was laid off soon after bringing her mother home, she devoted herself to caregiving. Medicaid pays for a nursing assistant for eight hours, four days a week.
But getting by on the paycheck of her husband, a flooring installer, has created a squeeze. She plans to seek a new job with hours and flexibility to allow for caregiving. The reasons, 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 looks up but doesn’t answer.
In the bedroom at the day’s end, Susan turns the radio on low so her mother can drift off to music.
“I love you,” she tells Bednarowski. “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,” Susan says, kissing her mother 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.”