(CNN) When news broke months ago about the country’s first coronavirus outbreak at a nursing home, Linda Mayberry immediately recognized the home’s corporate logo as it flashed across her television screen. It was the same one emblazoned throughout the long-term care facility where she lived.
Her nursing home, she realized, was owned by the same company struggling to curtail a rising death toll in Kirkland, Washington. Mayberry began to dread what would happen if coronavirus swept through her building.
Soon after this discovery, her facility in Bellflower, California, instituted a lockdown in March, barring all visitors to try to keep the disease out. Mayberry spent her days alone in her room.
Before the pandemic, she passed the time watching hours of classic movies, but now, as the black and white films played in the background, she scoured the internet for news about what was happening in the outside world.
At first, few local governments released information about how Covid-19 was ravaging the vulnerable populations residing in nursing homes. But as data started coming out, Mayberry saw that the deaths in other facilities were skyrocketing.
And then, in mid-April, she said she learned from staff that a resident somewhere in the building had tested positive for the disease.
Since the early days of the pandemic, nursing homes have been hit particularly hard — grappling with supply shortages and accounting for tens of thousands of deaths. But it is difficult to know what is actually happening inside these facilities, as measures aimed at protecting residents from the spread of the disease have left them even more vulnerable and closed off from the public.
They have been locked away from friends and family, routine government inspections have been severely limited due to the virus and some employees fear retaliation for raising concerns. It is even more rare to hear from the residents themselves — since many suffer from dementia and other debilitating conditions or don’t have an outlet to share their stories.
Mayberry, now 66, said she felt that local government officials weren’t doing enough to protect residents in nursing homes. She knew many of her fellow residents didn’t have the ability to speak out. But she had an iPad and a Twitter account, so she began sending dispatches from the inside of her room and hoped that someone would see them.
“As a nursing home resident, I feel as though I am in #DeathCamp2020 and we just got our first #COVID19 case 2 days ago,” she wrote on April 12. “No testing for staff or patients. Please help us.”
Mayberry never envisioned spending the early years of her retirement in a nursing home.
She had a nearly 40-year career at a local school district working as a computer technician and retired in 2015, only to develop a dangerous skin infection, she said. Then, she said she suffered a broken leg and shattered ankle from a fall during her recovery. The injuries ultimately left her bedridden as she attempted to find a way to pay for the surgery she would need. She was single with no kids, and her brother lived hundreds of miles away in Oregon. Because she needed full-time care, Mayberry resorted to becoming a paying patient at the nursing home, Bel Tooren Villa Convalescent Hospital, owned by the national chain Life Care Centers of America.
She had a surgery scheduled for the end of March that she hoped would finally enable her to move back into the home she owns in Long Beach, only around 15 minutes from her facility.
But then, coronavirus hit.
Mayberry has always been outspoken. In earlier years, she wrote letters to the editor of her local newspaper, opposing the renaming of her childhood park and criticizing the “stock” obituary of a local woman and classic film actress, saying she deserved much better. And she was already active on Twitter before the pandemic, criticizing President Donald Trump and sharing her love of old cinema with her modest list of 200-something followers, which includes a small stable of movie buffs.
The official Twitter account for the Los Angeles City Attorney became a follower more recently, after Mayberry saw a tweet about a price gouging investigation and responded with a photo of the same bottle of hand sanitizer being sold for $80 that still had its $1.99 price tag.
Now, as she learned from several of the nurses taking care of her that a growing number of employees and fellow residents were also testing positive for the virus, she said she made it her mission to draw attention to people like her, who are stuck in nursing homes where the coronavirus is spreading.
In some cases, she replied directly to tweets from government officials and journalists. In others, she simply offered dispatches of what her life was like, detailing the outrage and frustration she was feeling. She didn’t know if anyone was seeing them, but it made her feel like she was doing something.”
Mayberry tweeted about how she spent weeks asking to be tested — and how it finally happened last month.
A nurse showed up in her room in protective gear several days after her 66th birthday to deliver the news. She was positive for the virus and needed to be moved to the isolation unit — which Mayberry described as starting with a hallway of the facility blocked off by a thick layer of plastic that hung from the ceiling to floor but growing to take over a large part of the building.
Keeping the sick here and not testing the staff was a recipe for disaster,” she told CNN in late May. “I am really pissed off. This didn’t have to happen.”
When staff at her nursing home discovered that she had been publicly voicing concerns about the situation, she said she was “grilled by a corporate bigwig.” A Life Care spokesman told CNN that residents are free to speak with reporters and that it would never punish someone for doing so. The company will speak to residents concerned about their care to try to resolve any issues, he added. Mayberry said she told them her anger was mainly directed at the Department of Public Health in Los Angeles County, where her facility is located, for failing to ensure that all employees were tested for coronavirus until recently.
Thank you. Tested positive on May 15, so I am hoping I don’t get any worse. The isolation within a locked down facility is crazy. It took me a month after the first positive case to get sick. 41 positive here. I hear only 8 patients don’t have it. The Health Dept. Is to blame.— Linda (@Neurosturgeon) May 22, 2020
The first positive case had been confirmed well into the facility’s lockdown so Mayberry was convinced that a staff member had unknowingly brought it to the facility. And as they went room to room treating patients like her, she worried they continued to spread it.
The spokesman for Life Care said it was first notified of a positive case at Bel Tooren on April 10 and acknowledged that “testing has been constrained, and has taken longer than we’d have liked” — noting that testing for the facility has been coordinated through the county health department.”
What is your rationale for not testing the staffs at nursing homes, since there are so many dying but have no outside contact? Asymptomatic infection seems to be the cause. This seems like criminal negligence. https://t.co/DlDD2Bk7WF— Linda (@Neurosturgeon) April 17, 2020
The Los Angeles County Department of Public Health said it has been working to support testing of both residents and staff at county nursing homes and that not all have completed this testing. A spokesman said the county will audit facilities to make sure they are complying with new state testing requirements, and said earlier this week that Bel Tooren is “still under investigation.”
At first, the only personal possessions that were brought to the makeshift isolation unit for her were her iPad and iPhone. Her new room still had the belongings of someone else, she said, including fake flowers and a dresser full of items that she was afraid to touch.
She said her temperature became slightly elevated and she noticed that her oxygen levels were lower than usual when she checked them herself using a pulse oximeter, but otherwise she said she was mainly asymptomatic.
Soon after receiving her diagnosis, she began railing against people she believed were being irresponsible and spreading the virus, using the hashtag #Covidiots.
According to Mayberry, she wasn’t given a shower in more than a month, and that was the last day she was helped out of bed until recently. She was given a “bed bath” in mid-May, but claims that was only because she requested it for her birthday.
“It’s been a little bit uncomfortable, but I understand they’re just really, really shorthanded,” she said, adding that many of the nurses have become like family to her. “You feel sort of guilty that they’re giving up so much to work here … this isn’t a job I would wish on anyone and they do it with kindness.”
Signs in the windows of Bel Tooren express gratitude for nursing home employees during the pandemic.
After CNN contacted the facility spokesman for comment, Mayberry said she was retested and given a shower and moved from isolation — suggesting that her test result came back negative for coronavirus this time.
Her biggest fear is that employees — some of whom she said are older than she is — will stop coming to work entirely, as she has read about happening at other nursing homes.
“I am afraid that I am going to be ignored to death here,” she said.
I am in a nursing home and we have been so short-handed, RN’s have had to do diaper changes because each CNA had 25 patients. Just know that the patients love you for what you are doing. And congratulations.— Linda (@Neurosturgeon) May 28, 2020
The Life Care spokesman said he could not comment on specific patients due to privacy laws, but that “normal routines for patient care have been adjusted, particularly for those patients who have tested positive.” He said the facility is starting to see residents recover from the virus, and that when someone is listed as recovered, they are moved into a new wing of the nursing home — apart from those residents who are positive or negative.
He said that for the safety of staff, and since many rooms do not have private showers, some residents are given sponge baths two to three times per week.
“We recognize this has been a difficult time for residents, their families, and our staff,” he said. “Our staff have endured much and are truly heroic for their efforts to stay and care for their patients, even while they are at risk for contracting the virus.”
‘The biggest problems at nursing homes include three clearly identifiable deficiencies: not enough testing, not enough protective gear, and not enough workers.”— Linda (@Neurosturgeon) May 3, 2020
As a nursing home resident. I agree. Please save us. https://t.co/zLO23olbaZ
Other than the bits of information she is able to glean from her caregivers, she said residents are not given any detailed updates on Covid-19 cases, so she regularly checks the data posted by the state to try to find out what is happening in her own building.
More than 50 residents at Bel Tooren have contracted coronavirus.
Before she was moved to isolation, and then to a different room, she was able to listen for sirens, knowing that an ambulance would likely be called if someone had died. But lately she said she has been too far away to hear anything.
As of May 29, Bel Tooren Villa Convalescent Hospital has reported 61 resident cases and 16 staff cases, according to the facility.
Twelve of Mayberry’s fellow residents have died.
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