Every day for a year, Kathy James peered through the window at her mother’s assisted living facility outside Chicago and dreamed of the day they would be together again.
That moment finally came in March, when James packed a goody bag full of family photographs, a Sunday copy of The Chicago Tribune and a container of potato soup, and met her mother, Renee Koerber, 90, inside the nursing home.
“I said, ‘Mom, we’re in the same room!’” said James, 63, her heart swelling with relief.
They had made it.
But sitting several feet apart in a common area, where they were not allowed to hug, James was also startled at how frail her mother looked. She seemed to grow tired after just 15 minutes.
“I thought I would be so happy,” James said. “And I just feel such grief because of the year of time I have lost and I will never get back.”
Many U.S. nursing homes have begun to welcome visitors again after a year of excruciating lockdowns. The Biden administration in March published sweeping guidelines allowing indoor visits in most cases. It is a profound change that comes as vaccinations ramp up, reaching nearly 100 million Americans, including a majority of people in nursing homes.
Even as the head of the Centers for Disease Control and Prevention warned this week of a possible fourth coronavirus surge, nursing homes are so far holding steady, reporting drastically fewer cases and deaths since the start of vaccinations. The improved outlook means that across the country, people are once again greeting loved ones in nursing homes with bouquets of flowers, with homemade pudding and lemon bars, with news from children and grandchildren.
Yet the swinging open of the doors has also exposed new consequences of a pandemic that has killed more than 179,000 residents and employees of long-term care facilities and left many others withering in isolation.
“A year lost is a big loss,” said Pauline Boss, a family therapist and professor emeritus at the University of Minnesota.
Nursing homes now offer an early glimpse at what everyone may face in trying to go back to normal after a year of separation and stillness. Some reunions may be tinged with grief, others with reminders of all that has changed.
Boss said the experience of families coming back together a year into the pandemic reminded her of research she had done on husbands returning home to wives after war, or cancer patients who suddenly learn they are in remission.
“Things don’t quite get back to normal,” she said.
Nursing homes have been centers of the pandemic since the beginning, when an outbreak was first identified at a facility outside Seattle. Across the country, one-third of all coronavirus deaths have been linked to nursing homes.
As a geriatrician in San Francisco, Dr. Teresa Palmer, 68, was well positioned to advocate for her 103-year-old mother, Berenice De Luca Palmer, after federal officials recommended in March 2020 that nursing homes shut down to visitors. Palmer did local news interviews, checked on her mother often over Zoom and even accompanied her to occasional doctor’s appointments.
But when Palmer finally walked into her mother’s room recently, she was shocked to find that her mother, who had shrunk to 98 pounds, was spending all of her time in bed.
Palmer tried to raise her mother’s spirits, helping her write a letter to a cousin one day, bringing pizza for lunch the next. But by the third day, it became apparent that the problem was far more serious.
Palmer took her mother to a hospital, where she said her mother was told she had an advanced form of pancreatic cancer.
“I’m sad and angry,” said Palmer, who has found herself reflecting on all that her mother missed in the past year. Trips to the beach. Sunflowers in bloom. Family meals complete with pasta, wine and the elder Palmer, the matriarch of their Italian family, presiding over the dinner table.
“It’s the quality time that has been lost,” said Palmer, who has since brought her mother home for hospice care.
For others, emotions have ranged from euphoria to concern.
“My mom is really different,” Shirley Kwong said of her 85-year-old mother-in-law, who lives in a nursing home in the Bay Area and has grown more confused after a year apart. “Worse than before.”
Adriane Bower, 59, thought her mother, Angeline Rujevcan, 89, looked older, maybe a little weaker. Still, Bower said she was “over-the-moon happy” just to be able to sit with her at her nursing home in Crestwood, Illinois. Although they were not allowed to hug, she knew she was one of the lucky ones.
“My mom survived,” she said through tears.
The new federal recommendations allow for indoor visits in most cases, regardless of whether people have been vaccinated.
But like many policies during the pandemic, the federal guidelines have rolled out haphazardly across the country. Some people have been allowed to hug, hold hands and visit in their loved one’s room. Others are required to schedule 30-minute appointments in public areas.
Almost no facility is completely back to normal, and with coronavirus cases ticking upward again, some fear that even the limited access could be halted again. Under federal guidelines, one new case can temporarily shut down visitation in a nursing home, though visits may resume if an outbreak is not widespread.
In New York City, Henry Grullón, 50, had been anxiously waiting to see his grandmother, who lives at a large facility in the Bronx. Until last week, New York state guidelines required that facilities be coronavirus-free for 14 days before allowing visitors.
So it was a welcome surprise when his grandmother, Catalina Perez, 98, was wheeled into the lobby Friday. Grullón’s mother, who is 81 and had been despondent over their separation, inched toward her, crying.
“I need to hug her,” said his mother, Ana Grullón, who set aside rules urging families to stay apart and embraced her mother for the first time in a year.
“She kept just saying, ‘mom, mom, mom,’” Henry Grullón said.
For the moment, he pushed aside his worries that his grandmother had lost weight and seemed depressed amid the pandemic.
“My God, it was incredible,” he said.
Experts worry that some of the physical and cognitive changes experienced during the pandemic could become permanent because it is often difficult for older people to regain strength after losing weight or becoming bed-bound. The lost year has been particularly consequential for people with dementia, some of whom no longer recognize family members.
“That is time that you are not going to get back with that person,” said Lori Smetanka, executive director at the National Consumer Voice for Quality Long-Term Care, an advocacy group for residents and families. “We don’t know how to reverse that.”
A year ago, Janet Hooks still recognized one person in the haze of her dementia: her husband of 62 years, Chauncey Hooks. Each day, she scanned the hallways of her nursing home in Worthington, Pennsylvania, outside Pittsburgh, waiting for him to visit.
But at the beginning of the pandemic, Chauncey Hooks grew suddenly ill with what doctors said was the flu. He died March 12, 2020.
After holding her father’s hand in his final moments, a daughter, Lori Turberville, drove from the hospital to her mother’s nursing home to break the news. By the time she arrived, the facility had been shut down.
Turberville dreaded sharing such upsetting news with her mother over the phone, and decided to wait until she could comfort her in person.
“I didn’t think it was ever, ever going to last this long,” she said.
A year later, Turberville, 60, is thrilled to be able to have daily visits again. Brushing her mother’s hair and feeding her small bites of vanilla swirl ice cream have sparked something inside her mother in ways that window visits never did. Still, she has yet to tell her mother about her father’s death.
Her mother is weaker than she was a year ago, she said, and doctors have advised her that conveying that news now may do more harm than good.
So Turberville has taken to reassuring her mother with some version of the truth: “You know how much he loves you.”
Still, she worries each time she catches her mother’s gaze searching the halls.
“It really does go through your mind: Is she waiting for him to walk down there?” she said. “Sometimes I feel like, after 62 years of marriage, she deserves to know.”
While the visits have brought peace to many nursing home residents who feared they would never see their family again, others are still waiting for something else: independence.
Before the pandemic, Bruce Carmona, 63, regularly left his long-term care facility in the Chicago area, taking himself out to concerts, riding the train downtown or simply going out to grab a beer.
“I put 1,200 miles on my wheelchair,” said Carmona, who was paralyzed in an accident in 2018 and had grown to enjoy the small pleasure of cruising around town, listening to country music on his stereo and feeling the wind on his face.
Despite the new guidelines, many residents are still not allowed to leave their facilities for extended trips. So although Carmona is vaccinated, he said he is still largely confined to his room.
“If I could get out, that gives me freedom,” he said. As it is, he said, “I’m in prison.”