'We don’t even know who is dead or alive': Trapped inside an assisted living facility during the pandemic

When someone in the building died, a notice was often taped to a window in the lobby: “WE REGRET TO ANNOUNCE THE PASSING OF OUR FRIEND….” The signs did not say how or where the friend had died, and because they were eventually removed, they could be easy to miss. In March, as these names began to appear more frequently at Bronxwood, an assisted living facility in New York, Varahn Chamblee tried to keep track. Varahn, who had lived at Bronxwood for almost a year, was president of its resident council. Her neighbors admired her poise and quiet confidence. She spoke regularly with management, but as the coronavirus swept through the five-story building, they told her as little about its progress as they told anyone else.

Some residents estimated that 25 people had died — that was the number Varahn had heard — but others thought the toll had to be higher. There was talk that a man on the second floor had been the first to go, followed by a beloved housekeeper. An administrator known as Mr. Stern called in sick. Around the same time, Varahn noticed that the woman who fed the pigeons had also disappeared.

The New York State Department of Health advises adult care facilities to inform residents about confirmed and suspected COVID-19 cases. But inhabitants of Bronxwood said they were kept in the dark. In the absence of official communication, it was difficult to sort out hearsay from fact. “I was told that it was 42 people,” said Renee Johnson, who lived on the floor above Varahn. “But honestly we don’t know. They are not telling us anything.” When for a couple of weeks Renee herself was bedridden — fatigued and wheezing — there were rumors that she, too, had passed away.

Because so many people were missing, and no one knew where they’d gone, life began to feel like a horror film. The dining room, once an outlet for gossip and intrigue, was shuttered and the theater room padlocked. Staff covered the lobby in tape, as if it were the scene of a crime. The library began filling up with the possessions of those who had vanished: their televisions and computers, their walkers and bags of clothes.

It seemed like a good omen when a few residents came back from the hospital grinning, having faced the ordeal and lived to tell about it. “I wouldn’t even say to them, ‘I thought you were dead,’” Varahn said. “I was just happy to see them.” But then she spotted these survivors in the lobby or going out shopping and worried that the sickness would continue to spread.

The virus was taking the worst toll in the Bronx, and Bronxwood sat within the borough’s hardest-hit ZIP code, although it would be weeks until anyone would know this. But by April, it was clear that elderly Black and brown people with preexisting health conditions, living in crowded housing in the city’s poorest neighborhoods, were among those most susceptible. That many of Bronxwood’s residents belonged to this demographic did not escape anyone there.

When Varahn arrived at Bronxwood in the summer of 2019, she was 65 and still worked at two salons. She hadn’t been planning to move to an assisted living facility, but she was desperate to find an affordable room. She had been sharing a ground-floor apartment with her 28-year-old son in Allerton, a working-class neighborhood in the Bronx, before her landlady pushed her out to make space for her grandchildren. Friends told Varahn she should have taken the matter to court, and maybe she could have, but she believed that things happened for a reason.

In the brick vastness of the east Bronx, with its towering apartment blocks and modest duplexes, Bronxwood’s cream-and-beige exterior stood out. The building was just a 20-minute walk up the street from her old apartment, so she didn’t have to worry about missing her clients, her church sisters or the kids she mentored, who called her Mother V. Her benefits covered the $1,270 rent, which included three meals a day and housekeeping. The shared bedrooms — crammed with two twin beds, two stout night tables, two wardrobes and two wooden dressers — were small, but Varahn didn’t think she’d spend much time in hers.

On the first floor, which housed the recreation and meeting rooms, there was always something to do. Staff threw holiday parties and monthly birthday celebrations. Visitors came by to help with knitting and coloring and computer lessons. There was Uno, Pokeno and afternoon bingo. On Wednesdays, members of the cooking club prepared Cornish hens, fish and chips, liver with onions. In the afternoon, bands would perform — classical and jazz, calypso and merengue — and some of the singers were quite talented.

Not long after Varahn moved in, she met Glenda King at a Bible study group. Glenda, who is 68 and has lived at Bronxwood for over seven years, wears square transition lenses and tucks her gray hair into a prim, low bun. Dryly self-deprecating, she considers herself an introvert who has the misfortune to live in a building with 270 other people. She makes a point of being friendly, even though she likes to say that she has no true friends.

At first, Glenda found Varahn to be reserved, but she soon realized that what she had mistaken for detachment was simply Varahn’s way of taking in her new surroundings. Varahn knew how to draw people out and listen to their problems. She had worked as a beautician since high school, first at flagship boutiques in the city and later for the disco diva Carol Douglas and on the sets of Spike Lee films. Her clients felt comfortable confiding in her, and before long, so did the residents of Bronxwood. “I can go up and talk to her about anything,” Glenda told me. “Her forte is humility.”

All adult care facilities are legally required to maintain a forum where residents can independently discuss their living conditions, but some resident councils, like Bronxwood’s, are more active than others. Although Varahn was new to the building, people encouraged her to run for president. She would bring an unusual amount of political experience to the council: She had previously served as vice chair of the Allerton Barnes Block Association and as president of both the neighborhood merchant’s group and a charity society at her church. Under her bed, she stored the plaques from various luncheons that had celebrated her civic advocacy.

After Varahn’s victory in the September elections, Glenda, who had worked for many years as a typist, took on the duties of council secretary, and Hurshel Godfrey, another longtime resident, assumed the vice presidency. Every month, the council gathered in the main lobby, which fit about 60 people, some of them perched on their walkers. Varahn, who has a broad, serious face and a sleek bob, dressed for the occasion in crisp two-piece suits with lapels. She worked to cultivate a shared sense of purpose. “I never said I could do something, even if that was true,” she said. “I always emphasized that we could do it together.”

One of the first things Varahn noticed that fall, as the weather grew colder, was how few residents had proper winter clothes. Some explained that they were stuck indoors because they lacked coats. Old men shuffled around in flip-flops in the rain. In the annual grant application for extra state funding, Varahn secured a bigger clothing allowance — $200 per resident — and a double-oven stove for the communal kitchen. She brought in educational speakers for Veterans Day and Black History Month, and planned field trips to go out dancing and to the casino. “Varahn had a lot of connections,” Hurshel said. “I knew a few people, but she knew a lot.”

Some of the local politicians Varahn was acquainted with started asking her if she had ever considered running for higher office: The City Council elections were coming up in 2021. In February, she started riding the subway to midtown Manhattan to take a class for first-time candidates. Former campaign managers shared tips on electoral strategy and the best kind of eye contact to make with large crowds. Maybe, she thought, electoral politics was her calling.

At this point, the virus was said to be on the other side of the world. It hadn’t yet surfaced in a nursing home in Kirkland, Washington, or in New Rochelle, just a short drive up the road.

Until the 1980s, elderly Americans with medical needs had limited options: They could age at home with family or aides, or they could “park and die,” as the saying went, at a nursing home. Assisted living facilities emerged as a third way, rejecting the clinical strictures of a medical institution in favor of a more informal, dormlike setting.

In the last four decades, demand for assisted living has soared. The paradigm promises residents the freedom to live autonomously — and operators freedom from regulation. Unlike nursing homes, assisted living facilities are not subject to federal oversight. The standards for care — along with the definition of “assisted living” — vary greatly from state to state (and from facility to facility).

During the pandemic, these freedoms have become liabilities. “If infection control was limited and regulation was already ineffective in nursing homes, it’s almost nonexistent in assisted living,” said David Grabowski, a professor of health care policy at Harvard Medical School who studies long-term care for older adults. “It’s all the problems we are talking about with nursing homes, but even more so. There’s less regulation, far less staffing and many of the residents are just as sick.” The population in assisted living often closely resembles that of nursing homes, yet there are no requirements that the former provide full-time medical staff. In New York, according to government data, half of those in assisted living are over 85, two-thirds need help bathing and a third have Alzheimer’s or some other form of dementia.

At Bronxwood, the state’s third-largest adult care facility, residents said that employees initially lacked protective gear as they cleaned dozens of rooms. As in other homes in the city at the start of the outbreak, shared bathrooms and group meals made it difficult to isolate. And because it is not a medical institution, residents continued to enter and leave the building as they’d always done. (Neither Bronxwood nor Daniel Stern, an administrator, responded to repeated requests for comment.)

Less than 1% of Americans reside in long-term care facilities — a category that includes nursing homes and assisted living residences — but these facilities account for around 40% of the country’s COVID-19 deaths. Researchers caution that this figure represents an undercount. Many states do not publish this data, or do so incompletely, and fewer than half of all states report cases in assisted living facilities, according to research by the Kaiser Family Foundation. “As a result,” the analysis said, “it is difficult to know the extent to which residents and staff at assisted living facilities have been affected by COVID-19 or the extent to which interventions are urgently needed.”

The way that New York counts deaths has been controversial from the start. That’s because the state’s Health Department will not attribute a death to a residential health care facility unless the death occurs on the premises. The unusual policy has baffled residents and their family members, along with lawmakers and health care experts. “This is a really big hole in New York state data,” Grabowski said. “If someone lives for a long time in a nursing home, it makes no sense that their death is then attributed to the hospital rather than the nursing home.” Without a proper count of cases and deaths, advocates argue, officials cannot direct scrutiny or resources to afflicted homes.

For more than two hours at a hearing in August, legislators repeatedly pressed the state health commissioner, Dr. Howard Zucker, for the number of deaths that could be traced back to residential health care facilities. His answers did not satisfy his interrogators. “It seems, sir, that in this case you are choosing to define it differently so you can look better,” said Gustavo Rivera, the state Senate Health Committee chairman, whose district includes part of the Bronx. “And that’s a problem.”

Gov. Andrew Cuomo has boasted about the relatively low death toll in the state’s nursing homes, despite the fact that no other state counts these deaths as New York does. As of mid-November, there have been more than 6,619 virus-related deaths within the state’s nursing homes and 179 in its adult care facilities, according to official data. Bronxwood, however, has never appeared in that tally.

“The public list is incomplete and misleading,” said Geoff Lieberman, the executive director of the Coalition of Institutionalized Aged and Disabled, an organization that advocates on behalf of adult home residents in New York City. “Either everyone at Bronxwood died at the hospital, or the information isn’t being accurately reported.” Before the August hearing, Lieberman and his colleagues at CIAD interviewed residents at 28 adult homes in New York City, including Bronxwood, and tallied around 250 deaths from their accounts — a stark contrast to the 53 deaths that facilities had self-reported to the state. Bronxwood employees likewise sounded the alarm: In April, six staff members told local news that by their count more than a dozen residents had died.

Residents played detective, too. In May, when the U.S. death toll hit 100,000, Renee Johnson tried to match the names she saw in the newspaper to those of her missing neighbors. “We lost a lot of friends,” she said. “And you’re scared — you’re really scared — because you don’t know if you’re next.”

Jonah Bruno, a spokesman for the Department of Health, defended New York’s approach to counting COVID-19 deaths in residential health care settings. “The Department goes to great lengths to ensure the accuracy and consistency in our data reporting,” he wrote in an email. Bruno did not disclose how many residents died in the hospital after falling ill at Bronxwood, but he noted that the facility passed an infection control survey in May. “Since the start of this pandemic,” he added, “we have made protecting the most vulnerable New Yorkers, including those in adult care facilities, our top priority.”

Slowly and then all at once, everything that had made Bronxwood bearable was taken away. Residents were discouraged from seeing one another, going outside or congregating in common areas. Visitors were banned. Whenever people lingered downstairs or smoked out on the patio, staff ushered them back to their rooms.

Varahn hung posters in the lobby to try to boost morale. The first gave the administration and staff five hand-drawn stars and thanked them “for caring during COVID-19.” “WE ARE ALL IN THIS TOGETHER,” read the second, on which she had colored an American flag. Some residents thought their president was doing the best she could, given the circumstances. Others were offended. They didn’t want to thank anyone: They were miserable.

Deborah Berger, who lives on the fourth floor, likened the new regime to living in a giant day care center. Glenda said she felt like a puppy in a doghouse. Renee compared it to jail.

The analogies were ready at hand, but what was harder to express was how little trust they had in the institution tasked with protecting them. “Nobody is talking to us,” Renee said. “The staff just say: ‘Go to your room. Go to your room.’ There’s no feelings. There’s no nothing.”

Glenda washed her hands until she felt as if they were going to fall off. She wiped everything down with bleach — door handles, dresser, windowsill. She had a weak left lung, and she was terrified. “If I get one hit of that coronavirus,” she liked to say, “I’m not going to make it.” When her legs got stiff from sitting, she paced up and down her cappuccino-colored hallway, about the length of a city block. Other times, wearing a surgical mask, she wheeled her walker downstairs, though the state of affairs there could be disappointing. A lot of residents didn’t wear masks. They huddled around the TV and crowded in the elevator. People were getting complacent. “Not me,” Glenda said.

The council had suspended its meetings, but toward the end of April, several residents approached Varahn to report that Bronxwood was not giving them their stimulus checks. In fact, complaints about missing or partial stimulus checks were so widespread throughout the city’s facilities that the state issued a guidance: Residents’ money belonged to residents. Varahn convened an impromptu meeting with the council’s leadership in the stairwell — the only somewhat quiet place in the building — to strategize about what to do.

Hurshel, the vice president, was planning to ask about his check. “Don’t ask,” Varahn coached him. “Say, ‘I came here to get my money and I’ll cash it myself.’” Glenda noted that people with dementia might not remember the existence of the checks in the first place, so she knocked on doors to remind them.

Part of Varahn’s role as president was to relay these and other concerns to Mr. Stern. They had an easy, playful rapport. Sometimes, he asked what an intelligent woman like her was doing living in a place like this. The question flattered her, but it also unsettled her, as if she wasn’t wanted or didn’t belong.

People talked about leaving Bronxwood almost as soon as they arrived, but the truth was that they were there because they had nowhere else to go. The elderly are typically steered to places like Bronxwood after a stay in the hospital. They have taken a fall or needed a surgery, and while they’re recovering, lose their apartment. Others, like Glenda, are recommended by a caseworker at a shelter. It’s not uncommon for such homes to hire recruiters to help fill their beds.

While many assisted living facilities cater to a wealthy clientele, who pay out of pocket, Bronxwood primarily serves low-income seniors. (It is, technically speaking, an adult home with an assisted living program.) Most residents sign over their supplemental security income to pay for the room and board — and out of that sum the facility gives them a $207 “personal needs allowance” each month. The money runs out quickly, since it often goes toward phone bills, toiletries, transportation and more nutritious food.

Out of Bronxwood’s 270 or so residents, more than half are enrolled in its assisted living program, whose costs are covered by Medicaid. In theory, the program offers an extra level of care to those who need it. In practice, it functions as a “huge financial boon” to the adult home industry, said Tanya Kessler, a senior staff attorney with Mobilization for Justice, a legal services organization. Bronxwood can charge Medicaid between $78 and $154 per enrolled resident each day, depending on his or her needs. But Kessler said there’s little oversight into whether this additional funding results in additional care. Bruno, the spokesman, said that the Health Department conducts regular inspections of assisted living programs “to ensure all applicable laws, regulations and guidelines are being followed.”

Healthier residents at Bronxwood told me that they seemed to be roomed with those who were more infirm, effectively placing them in the role of an extra aide. “One of the big complaints we hear is, ‘I’m not well myself, but they put this person in here that they expect me to look after,’” said Sherletta McCaskill, who, as the training director of CIAD, helps adult home residents organize councils and independent living classes. “It speaks to the lack of services that these homes are providing.” The most recent audit by New York’s Office of the Medicaid Inspector General found that Bronxwood had overbilled Medicaid by $4.4 million in 2006 and 2007. (Bronxwood requested an administrative hearing to challenge the findings, according to an OMIG spokesperson; the date is pending.)

In the pandemic, everyone’s escape plans, loudly discussed yet endlessly deferred, took on a new urgency. Residents told Varahn that they were joining the city’s long wait list for subsidized senior housing, or that a son or daughter was coming to rescue them. Faye Washington, who was 68 and lived down the hall from Glenda, tried to compile a list of senior housing options in the Bronx. “You know why I want to get out?” Faye said. “Because when all those people passed away, it killed me.”

Faye told Glenda, “I’m taking you with me.” But Glenda was not in any hurry. It was safer, she felt, to be where an aide could hear if she called for help. She had heart problems, anxiety, memory loss and chronic fatigue. Her family had asked her to stay with them, but she did not want to babysit relatives. As she saw it, if God had wished her to have more children, he would have let her keep getting her period.

Varahn’s family urged her to leave as soon as possible, even if it meant losing a month of rent. But where would she go? Varahn wondered. And then what would she do? The lady who lived across the hall had gone to see her daughter in Georgia, and now she was stuck there while all her things were here.

As the lockdown dragged on, Varahn felt herself sliding into a depression. Before March, she was always out with a client or at some community meeting. Now she was eating three meals a day on a rectangular folding table at the edge of her bed. She was gaining weight from staying inside. Her feet were swollen. Her back hurt.

She started taking walks, sometimes just a few blocks, to relieve the pain. The soccer field across the street, where kids played on Saturdays, was empty. Many of the stores on White Plains Road, Boston Road and Allerton Avenue, including the salons, were closed until further notice, and some days it felt like the entire world was at a standstill.

It wasn’t just the forced isolation that discouraged her. Everything was happening on some sort of screen, and the tedious video engagements and text messages often left her frustrated. In her class for first-time campaigners, which had migrated to Zoom, the connection was always faltering, making it difficult to understand what anyone was trying to say.

At other times, she wasn’t isolated enough. Her roommate rose at dawn and sold loose cigarettes throughout the day. People were always stopping by. Whenever Varahn was on a call or at a virtual meeting, the roommate muttered under her breath or cursed sarcastically. Once, the noise was so disruptive to the class that the instructor told Varahn to mute herself, which she found humiliating. What would have been merely an inconvenient pairing in normal times had under quarantine become an oppressively intimate arrangement. There was also the problem of Varahn’s older sister, Childris, whose heart was starting to fail. The grief put a constant pressure on her days. All this made it hard to concentrate, and she soon fell behind on her studies. So many things about her path to the City Council were uncertain now anyway. Was a person of her age expected to knock on doors? Would she have to campaign through a computer screen?

Varahn began searching for a way to reclaim her freedom. She asked Mr. Stern for a room of her own. As far as she could tell, there was plenty of space in the building. A private accommodation could double as a little office for the council, she reasoned — somewhere that residents could feel comfortable speaking to her. But management never acted on her request. Victoria Kelley, a former jazz singer who had lived at Bronxwood for three years, suspected that Varahn’s battle for the clothing allowance had turned administrators against her. Such retaliation is not unheard of, according to advocates who work with residents at adult care facilities. “If you don’t have someone on the council to fight for you, nothing gets done, but Varahn did fight,” Victoria told me. “Some of the naysayers got jealous.”

With the arrival of spring, a different approach revealed itself to Varahn. First she rented a car, so she could get around more easily. Bright flowers fringed the patio, and slender trees cast ragged patches of shade on the sidewalk. Her errands had been piling up, too. She needed to buy cases of bottled water, pick up her son’s stimulus check from her ex-landlord, haul her sheets to the laundromat after her roommate got bedbugs.

Then she started driving for the pleasure of it, humming along to power ballads on Christian radio and chatting on the phone with friends. She found herself going through the boxes in her U-Haul storage unit, making a mental inventory of all the things she didn’t have space for at Bronxwood, like her slow cooker, her turkey roaster, her Ashley Stewart outfits, her dance costumes. One weekend, a few FOR SALE signs caught her attention. That was when she realized what was happening: She wanted out.

It was a complicated undertaking. Most apartments were too expensive, which is why she hadn’t been able to get one in time last year. And even if she was lucky enough to find something affordable, she would have to keep working — perhaps, if salons weren’t allowed to reopen, somewhere that wasn’t a salon. Then again, she didn’t want any of the residents to feel that she was leaving them behind.

One morning toward the end of July, Glenda’s cellphone rang. The sound surprised her, because she had stopped paying the bill. When Glenda called the number back from the room’s landline, it turned out to be Varahn, who announced that she was moving out the next day and promised to stop by in September “to pass the torch.” Glenda told Varahn she was happy for her, and she was. But she wished her friend had let her know sooner. Hurshel, the vice president, was unable to step in, because he, too, had just left. After five years on the city waitlist for affordable housing, he’d finally landed a new spot. It was less than a block away from Bronxwood. “You have to get out of there,” he warned his old friends.

That same week, Bronxwood laid off employees without warning, apparently because of the declining number of residents. There was no longer an aide for the fourth floor, according to three people who lived there, and there was no one to speak up about it. “I feel stripped naked, like we’re getting ready for the slaughterhouse,” Glenda said the next day. We were sitting down the street, and as staff trailed out of the building at the end of the afternoon shift — a long procession of teal and navy scrubs — some of them were wiping away tears. “Right now, the administration can say anything goes.”

Glenda knew she did not want to serve as president, even in an interim capacity, and asked Renee, a former president, what to do. Renee was telling everyone who had asked her this question the same thing: She didn’t have a clue. “We’re so lost right now,” Renee said to me in August. Her bingo crew had dwindled from more than 15 players to fewer than 10. She was pessimistic about the prospects for a socially distanced election: “We don’t even know who is dead or alive.”

Varahn had implied to Glenda that she was staying in the Bronx. In reality, she was moving to suburban Maryland. She had signed the lease for a one-bedroom apartment in a senior living community just a short drive away from her daughter’s house. It was everything that Bronxwood was not: serene and quiet, lush with greenery.

She had told Glenda only half of the story because she couldn’t quite believe her good fortune. “I feel so sorry because some of them are waiting there thinking that they will someday get an apartment,” Varahn said. “If it wasn’t for my associations” — the support from her family, her earnings from the salon — “I would be stuck there, too.”

Her family was relieved about her departure, but Varahn remained uneasy. With a room of her own, she thought, or even a different roommate, she probably would have stayed. As it was, the likely return of the virus in the winter frightened her.

When she packed up her belongings, she felt as if she were packing up the future she had once imagined for herself. “By now, I would have been running for City Council, if this virus didn’t happen,” she said. “So I’m saying to myself, well, you know, that wasn’t in God’s plan.” Though she kept her move a secret, one resident spotted her carrying boxes in the hallway and asked her, “Are you just going to leave us like that?” It was the same question she had been asking herself for months.

In a handwritten letter Varahn gave to Bronxwood’s administrators before she left, she expressed her desire to remain president from afar until it was safe to hold an election. She had planned to retire there, the letter said, yet it was impossible to do so under the current circumstances. She expected Mr. Stern, or at least his secretary, to call to offer his regrets, but she never got a response. It made her feel as though nothing she had done at Bronxwood mattered — as though she had never lived there at all.