En español | NEWCASTLE, WYOMING — “If my daughter comes, I want to go with her,” said Karen Krause, 79, in her raspy voice as she made her way to the head of the makeshift bowling alley in the Weston County Manor nursing home on a Tuesday afternoon in March.
"OK, honey,” replied Meredith Tolley, the activities director of the 58-bed nonprofit facility in this small city in east Wyoming. She knew that if Krause's daughter were to arrive, COVID-19 restrictions would prevent her from taking her mother off premises. For the past year, residents wanting to leave the facility were required to undertake a 14-day quarantine upon return in most circumstances. The venture out wasn't worth it.
The staff of the Manor had lost count of how many times Krause, a dementia patient, had asked to leave with her daughter during the pandemic. Attempts to explain why she couldn't only made Krause confused, stressed and sad. “I don't want to put her through that,” Tolley said.
Reassured by Tolley's white lie, Krause continued with her game, leaning over her walker, placing her left hand atop the lightweight blue bowling ball and pushing it down the ramp aimed at the pins. Seven out of 10 fell over. Her fellow residents clapped and cheered.
Afterward, as residents headed back to their rooms, Krause turned to Tolley once again. “If my daughter comes,” she repeated, “I want to go with her."
Tolley nodded. “Yes, ma'am.”
A couple of weeks later, Krause's wish came true. The Manor's management team gave residents who were fully vaccinated against COVID-19 permission to leave for a few hours to enjoy an Easter outing with loved ones, without having to quarantine afterward. The families of 16 residents signed them up for short escapes over the holiday weekend.
The changes followed new federal guidance to nursing homes that made it easier for residents to visit with their loved ones after a year of pandemic-inspired lockdowns. While the new guidance didn't directly address whether residents should leave a facility, the Manor decided that vaccinations and declining cases were grounds for short, off-premises visits.
So a few minutes before 10 a.m. on Easter Sunday, Tolley met Krause at the entrance doors of the Manor, carefully placed the loops of a surgical mask over the oxygen cords that sit behind Krause's ears and asked: “Are you ready, Karen?”
Krause didn't respond. She pressed the wheels of her walker up against the glass doors that separated her and her daughter, Tammy Harman, who was waiting outside, waving. Tolley pushed open the doors, allowing Krause to leave the Manor for the first time in months.
"Oh, my daughter, my daughter,” said Krause, as she buried her face into Harman's shoulder. “Oh, I love you, I love you, I love you.”
"I love you too, Mom,” said Harman, rubbing her mother's arched back. “Now, come on, let's get you out of here.” Krause relished the embrace a few moments longer before pushing her walker — a little quicker than usual — toward the parking lot.
Coming back but far from normal
It's been a grueling year of COVID-induced loss, loneliness and longing for normalcy in America's nursing homes, where the virus has killed more than 130,000 residents, infected around 650,000, and stripped hundreds of thousands more of their routines, social connections and freedoms.
And while there is no official tally of how many residents died from the effects of social isolation and loneliness caused by lockdowns — which were meant to protect residents from COVID-carrying visitors — experts predict the toll is high.
Now, thanks to a sharp decline in COVID-19 cases in nursing homes after widespread vaccinations among residents, simple pleasures are returning. Bowling with friends, holding a family member's hand, a quick jaunt out of the facility — all off limits for most of the last year — are coming back.
And yet the challenges and confusion continue.
Some residents at Weston County Manor won't emerge from their rooms, where they were forced to stay for months. Continued mask mandates make family reunions and socialization tricky. Burned-out workers continue to face overloaded schedules in the face of new hurdles, including low vaccine uptake among staff members. And as a possible fourth coronavirus surge looms, many worry that the recent liberties granted to nursing homes might be taken away again.
"Life is still far from normal,” said Maureen Cadwell, chief executive officer of Weston County Health Services, which includes the Manor. That's “wearing on everybody,” she said — residents, staff and loved ones.
The struggles extend to nursing homes throughout the country, which are home to more than 1.2 million residents. “In a lot of ways, we are coming back to ourselves,” said Carol Silver Elliott, the chair of the board for LeadingAge, a national association representing 5,000 nonprofit aging services providers, including Weston County Manor. But “our people are antsy and impatient for the world to open up.”
"We spend a lot of time preaching about how we have to still be cautious because it ain't over till it's over.”
Bingo and bonding
Sharla Lax, an activities aide at Weston County Manor, sat at the head of the dining room in front of a large television screen that displayed the bingo numbers her laptop was autogenerating. Each time a new number appeared, she had to shout it out extra loud so that the residents, who were spaced 6 feet apart, could hear her through her mask.
"The little ball that started it all — what is it?” she asked.
"B1,” the residents shouted back, as they ran their markers over their playing boards — which only they can handle, to avoid cross contamination of equipment — searching for the lucky number.
"Bingo!” yelled Jo Shackelfurd, 88, collecting the two winner's nickels for herself, then a “neighbor nickel” each for the players to her right and left.
"Thank goodness I'm sitting next to you,” quipped Melva Keever, 89, who hadn't won a game yet, “or I'd be broke.”
Communal activities, which beyond bowling and bingo include gardening, ceramics workshops, manicures and movie nights, have been some of the most celebrated returns of the past couple of months at the Manor.
Beginning in March 2020, when the federal Centers for Medicare & Medicaid Services (CMS) issued its first COVID-19 memorandum, instructing nursing homes to cancel communal dining and all group activities, the Manor's residents were largely confined to their rooms. Meals were eaten bedside. Activities were performed alone. Exercise often fell by the wayside. Loved ones were seen only through windows or phone screens.
In mid-September, the CMS — which regulates the nation's 15,000 nursing homes — recognized that “residents may feel socially isolated, leading to increased risk for depression, anxiety, and other expressions of distress,” and revised its guidance to allow for communal activities and visitation under certain conditions.
But the Manor identified its first COVID-19 cases of the pandemic shortly afterward. More positive tests followed, with a total of five residents and 15 staff members becoming infected with the virus over the next few months. Two of those residents died from COVID-19.
It wasn't until December, when all of the facility's residents and staff had finally been COVID free for two weeks, that the dining room reopened for the first time in nine months, only to be shuttered again three days later when a staff member tested positive. When communal events finally returned consistently in January, amid the facility's rollout of COVID-19 vaccinations, residents rejoiced.
"It was wonderful,” said Norma Reman, 87, of the first meal with her fellow residents. “You're all together — kind of,” she said, gesturing with her hands that residents are spaced apart, “and you can have different things to eat.”
"And you don't have to eat on paper,” noted Suzanne Steele, an activities aide.
Reman agreed, enthusiastically. “I didn't like that, having to stay in the room,” she said. “I just hoped that [the virus] would finally go or get to where we were able to do everything together.
But not all residents are embracing the Manor's return to communal life. One of the recent challenges for staff here has been persuading residents to come out of their rooms.
Increased rates of depression or worsened physical debilities caused by extended isolation during the lockdown are likely driving decreased engagement, said Carla Perissinotto, M.D., associate chief of clinical programs in geriatrics at the University of California San Francisco. Shifts in routine, particularly for residents with dementia — who can find change disorienting — could also be a cause, as could lingering fears of catching the virus.
But finding ways to reengage residents is critical, Perissinotto said. Isolation and loneliness are associated with a roughly 50 percent increased risk of developing dementia and a nearly fourfold increased risk of death among heart failure patients, according to studies.
"Be aware of who is lonely as a result of all of [the pandemic] and find out from each person what may help them,” Perissinotto said she tells nursing homes. “Open up the discussion … acknowledge that this sucks and we're here and we'll get through it, to try and bring some hope.”
'I'm smiling under this, I swear’
In early March, following vaccinations at nearly every nursing home in the country and plummeting infection and death rates, the federal government revised guidance for facilities again, making it easier for residents to see, hug and hold hands with visiting loved ones, even indoors. “There is no substitute for physical contact, such as the warm embrace between a resident and their loved one,” the recommendations said, while noting that precautions, including masks, time limits and number caps, should continue.
The very next day, the Manor announced that each resident would be allowed two 30-minute or one 60-minute indoor visit per week with two guests at a time.
It was a sunny Sunday morning in April when Frieda Waterson, 95, spotted her granddaughter Keyra Comer and great-grandchildren, Connor, 17, and Kenna, 19, approaching the Manor's entrance. She gasped as she looked out the window of the main lobby. She hadn't seen them in person in 15 months.
Keyra and Connor entered the building first, following the two-guest limit, while Kenna waited outside in the Manor's gazebo. Connor filled his great-grandmother in on his past year and three months: high school classes, another growth spurt, a new girlfriend. After 15 minutes, it was time for the great-grandkids to switch places.
"Oh, this was the most lovely surprise,” said Waterson, as Connor crouched down beside her wheelchair to give her a goodbye hug. Waterson grasped her great-grandson's arm as they posed for a photo. “I'm smiling under this, I swear,” she said, pointing at her cheetah-print mask.
But for some families, masks are obstructing more than smiles.
When Connie Reimer heard she was now allowed to sit next to her 99-year-old mother, Doris “Dode” Voss, during their visits at the Manor, she asked the staff to dust off Voss’ family photo album, planning to help her mother flip through the pages. Reimer thought it might trigger memories for her mother, who has dementia. But Voss, confused and panicked by her mask, wouldn't keep it on.
"I couldn't hold her hand or give her a hug because she wouldn't wear the mask,” said Reimer. “She doesn't understand why that goes together."
Many families face the same struggle, given that more than a third of nursing home residents have severe cognitive impairment and around another quarter have moderate cognitive impairment, according to a 2015 CMS report.
To keep seeing each other, Reimer and Voss had to move to one of the facility's visitation booths, which use clear plexiglass dividers to keep residents and visitors separated. Voss didn't have to wear her mask, but hearing her daughter through the wall was difficult. Reimer eventually gave up on conversation and instead played her mother soothing music through her phone for the time they had left.
"That was very frustrating,” Reimer said. “And we both are vaccinated now, so it'd be nice if we could just have a nice visit without all of this."
Although the Centers for Disease Control and Prevention (CDC) recently released new guidelines for the general population, giving fully vaccinated people the go-ahead to unmask indoors around other fully vaccinated people, the CMS has not issued the same recommendation to nursing homes. Instead, it continues to list face coverings and masks as a core principle of COVID-19 infection prevention that “should be adhered to at all times."
"Individuals in health care facilities, particularly nursing homes, are generally more susceptible to severe infection from COVID-19,” a CMS spokesperson told AARP, “and therefore more caution is often warranted.”
Reimer hopes those rules loosen up soon. “She's in decline,” she said of her mother, noting that Voss has lost weight and mobility during the lockdowns. Her dementia has also worsened. “The sooner I'm able to be with her, the better.”
Sapped and skeptical
Staff members at Weston County Manor work hard to keep residents’ spirits up, decorating walls and doors with colorful collages and playing nostalgic ‘60s music over the dining room speakers. And they know how to smile with their eyes above their masks.
"We had to stay strong for our residents,” said Tolley, the activities director. “For a year, we were all they had.”
But staff members, like the residents, are eager for relief. COVID-19 sparked heightened infection control measures for the nation's 1.6 million nursing home workers: extra screening, testing, disinfecting, training, reporting, scheduling, caring and more. When outbreaks occurred at homes and infected or exposed staff members were barred from working, it exacerbated staffing shortages. Other staff had to work overtime, in an environment that threatened their own health. Many did so on minimum wage and without benefits like sick leave.
"There were so many times where burnout was so real,” said Tolley, recalling a day in October when all three members of her activity team were out due to a COVID-19 infection or exposure. “It was just me left … and I cried and cried.”
There are still plenty of difficult hours and days.
During Voss and Reimer's failed in-person visit, it was Tolley who had to ask the women to move back into the visitation booth, after she pleaded with Voss to put her mask back on multiple times. “I hate being the bad guy,” she said, “but I have to follow the rules.”
One new infection control challenge: staff inoculations. Although more than 95 percent of the Manor's residents have received a COVID-19 vaccine, less than 50 percent of staff members have opted to get one, mirroring a national trend. As of March 15, roughly half of all long-term care workers offered COVID-19 vaccines through a federal program had declined the shots, according to CDC data provided to the Center for Public Integrity.
National long-term care organizations have launched education campaigns to encourage workers to get vaccinated, but many Manor staffers remain skeptical. That's mainly because of the newness of the shots and the unknowns that come with it, said Angie Phillips, the Manor's infection prevention nurse. Widespread misinformation on vaccine side effects, particularly on social media, is having a “huge, huge effect,” she added.
"I do think little by little it's going to become more routine, like a flu shot,” said Sarah Gregory, the Manor's director of nursing. “But I just feel like it's going to be a very slow transition and possibly even take years to see it where we want to see it."
A great escape
While stuck in her room during the COVID-19 lockdowns, Alice Cunningham, 79, kept herself busy doing diamond art. By positioning hundreds of tiny diamond stickers onto different patterns, she created a bunch of mosaic-like prints and bookmarks that she offered to those who helped her out by bringing her perfume and body lotion, or by exchanging her bingo nickels for notes at the bank.
"Just a small token of my appreciation,” she'd say, as she handed over her masterpiece.
Before COVID-19 lockdowns took hold, when Cunningham was allowed to leave the facility at will, she'd shop and visit the bank herself, venturing to reach her target of 5,000 steps per day. Now, despite the new liberties at nursing homes, residents still can't leave the Manor as they please. “I miss that,” she said, “being able to do my own thing.”
No one knows when that will return. The staff is waiting on community transmission rates to drop and for the federal government to release guidance on the issue.
Still, Cunningham remains optimistic. As the president of the residents’ committee, she's already planning the first big outing for Manor residents for when conditions finally allow it. “We're going to get in our bus and we're going to take a nice drive through Spearfish Canyon, then have a lovely dinner together somewhere, then drive all the way back,” she said one afternoon, peering out her bedroom window in the direction of the Black Hills, which the canyon runs through.
"Now, wouldn't that be somethin'?” she said as she picked up her blue piggy bank off her dresser. “There's about $12 in here, I reckon,” she said. “I can use that for my dinner.”
"Even if we could just go down to the local supermarket,” she said. “That'd be good enough for us."
Emily Paulin is a contributing writer who covers nursing homes, health care, and federal and state policy. Her work has also appeared in Broadsheet, an Australian lifestyle publication.