November 19, 2020
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1 of 16In this photo provided by Kevin Amerson through his attorney Shuttlesworth Law Firm, P.C., Amerson's father Donald Wallace is pictured in an undated photograph in Birmingham, Ala. Wallace, a retired truck driver, avoided infection as COVID-19 swept through his nursing home, but he died of conditions his family say amount to neglect. Medical records show he was malnourished and dehydrated before his August death. Advocates for the elderly and disabled say even as the pandemic has killed more than 90,000 long-term care residents in the U.S., a tandem wave of death linked to neglect and isolation is quietly claiming thousands more. (Kevin Amerson/Shuttlesworth Law Firm, P.C. via AP)
When COVID-19 tore through Donald Wallace's nursing home, he was one of the lucky few to avoid infection.
He died a horrible death anyway.
Hale and happy before the pandemic, the 75-year-old retired Alabama truck driver became so malnourished and dehydrated that he dropped to 98 pounds and looked to his son like he'd been in a concentration camp. Septic shock suggested an untreated urinary infection, E. coli in his body from his own feces hinted at poor hygiene, and aspiration pneumonia indicated Wallace, who needed help with meals, had likely choked on his food.
"He couldn't even hold his head up straight because he had gotten so weak," said his son, Kevin Amerson. "They stopped taking care of him. They abandoned him."
As more than 90,000 of the nation's long-term care residents have died in a pandemic that has pushed staffs to the limit, advocates for the elderly say a tandem wave of death separate from the virus has quietly claimed tens of thousands more, often because overburdened workers haven't been able to give them the care they need.
Nursing home watchdogs are being flooded with reports of residents kept in soiled diapers so long their skin peeled off, left with bedsores that cut to the bone, and allowed to wither away in starvation or thirst.
More than 90,000 long-term care residents have died of the coronavirus in the United States. But experts say tens of thousands more have died from neglect and sorrow related to the pandemic.
Beyond that, interviews with dozens of people across the country reveal swelling numbers of less clear-cut deaths that doctors believe have been fueled not by neglect but by a mental state plunged into despair by prolonged isolation ̶ listed on some death certificates as "failure to thrive."
A nursing home expert who analyzed data from the country's 15,000 facilities for The Associated Press estimates that for every two COVID-19 victims in long-term care, there is another who died prematurely of other causes. Those "excess deaths" beyond the normal rate of fatalities in nursing homes could total more than 40,000 since March.
These extra deaths are roughly 15% more than you'd expect at nursing homes already facing tens of thousands of deaths each month in a normal year.
"The healthcare system operates kind of on the edge, just on the margin, so that if there's a crisis, we can't cope," said Stephen Kaye, a professor at the Institute on Health and Aging at the University of California, San Francisco, who conducted the analysis. "There are not enough people to look after the nursing home residents."
Comparing mortality rates at homes struck by COVID-19 with ones that were spared, Kaye also found that the more the virus spread through a home, the greater the number of deaths recorded for other reasons. In homes where at least 3 in 10 residents had the virus, for example, the rate of death for reasons besides the virus was double what would be expected without a pandemic.
That suggests the care of those who didn't contract the virus may have been impacted as healthcare workers were consumed attending to residents ill from COVID-19 or were left short-handed as the pandemic infected employees themselves.
Chronic understaffing at nursing homes has been one of the hallmarks of the pandemic, with a few homes even forced to evacuate because so many workers either tested positive or called in sick. In 20 states where virus cases are now surging, federal data shows nearly 1 in 4 nursing homes report staff shortages.
On New York's Long Island, Dawn Best saw that firsthand. Before COVID-19 arrived at Gurwin Jewish Nursing Home, she was pleased with the care her 83-year-old mother Carolyn Best received. She enjoyed activities, from tai-chi classes to visits from a pony, and was doted on by staff.
Dawn Best says her mother never contracted COVID-19 but died instead of dehydration, perhaps because the staff was so consumed with caring for COVID-19 patients that no one made sure she was drinking enough fluids.
But when the lockdown started and the virus began to spread in the home, Best sensed the staff couldn't handle what they had been dealt. The second time her mother, a retired switchboard operator, appeared on screen for a scheduled FaceTime call, she looked awful, her eyes closed as she moaned, flailed her arms above her head and just kept repeating "no." Best insisted a doctor check her out.
A few hours later, the doctor called, seemingly frantic, saying she only had a moment to talk.
"The COVID is everywhere," Best remembered her saying. "It's in every unit. The doctors have it, the nurses have it and your mother may have it."
In the end, 59 residents at Gurwin would be killed by the virus, but Best's mother never contracted it. She died instead of dehydration, her daughter said, because the staff was so consumed with caring for COVID-19 patients that no one made sure she was drinking.
"My mom went from being unbelievably cared for to dead in three weeks," said Best, who provided medical documents noting her mother's dehydration. "They were in over their head more than anyone could imagine."
Representatives for Gurwin said they could not comment on Best's case. The home's administrator, Joanne Parisi, said "COVID-19 has affected us all" but that "our staff at Gurwin has been doing heroic work."
West Hill Health and Rehab in Birmingham, Alabama, where Wallace lived prior to his Aug. 29 death, said he was "cared for with the utmost compassion, dedication and respect." Wallace's son provided medical documents outlining the conditions he described.
Full Coverage: Health
The nursing home trade group American Health Care Association disputed that there has been a widespread inability of staff to care for residents and dismissed estimates of tens-of-thousands of non-COVID-19 deaths as "speculation."
Dr. David Gifford, the group's chief medical officer, said the pandemic created "challenges" in staffing, particularly in states like New York and New Jersey hit hard by COVID-19, but added that, if anything, staffing levels have improved because of a drop in new admissions that has lightened the patient load.
"There have been some really sad and disturbing stories that have come out," Gifford said, "but we've not seen that widespread."
Another industry group, LeadingAge, which represents not-for-profit long-term care facilities, said staffing challenges are real, and that care homes are struggling in the face of federal inaction to provide additional stimulus money to help pay for more workers.
"These incidents, stemming from the challenges being faced by too many committed and caring nursing home providers during this pandemic, are horrific and heartbreaking," said Katie Smith Sloan, LeadingAge's president. "I hope that these tragedies will wake up politicians and the public."
When facilities sealed off across the country in March, advocates and inspectors were routinely kept out too, all while concerning reports trickled in, not only of serious injuries from falls or major medical declines, but of seemingly banal problems that posed serious health issues for the vulnerable.
Mairead Painter, Connecticut's long-term care ombudsman, said with dentists shut out, ill-fitting dentures went unfixed, a factor in mounting accounts of malnutrition, and with podiatrists gone, toenails went untrimmed, posing the possibility of painful conditions in diabetes patients.
Even more widespread, as loved ones lost access to homes, was critical help with residents' feeding, bathing, dressing and other tasks. The burden fell on aides already working tough shifts for little pay.
"I don't think anyone really understood how much time friends and family, volunteers and other people spent in the nursing home and supplemented that hands-on care," Painter said.
Strict rules barring in-person visitation persist in many homes, but as families and advocates have inched back inside, they've frequently been stunned by what they found.
June Linnertz poses with photos of her father at her Chaska, Minn., home.
When June Linnertz returned to her father's room at Cherrywood Pointe in Plymouth, Minnesota, in June for the first time in three months, she was struck by a blast of heat and a wall thermometer that hit 85 degrees. His sheets were soaked in sweat, his hair was plastered to his head and he was covered in bruises Linnertz would learn came from at least a half-dozen falls. His nails had been uncut so long, they curled over his fingertips and his eyes crusted over so badly he couldn't get them open.
The father, 78-year-old James Gill, screamed, thinking he had gone blind, and Linnertz grabbed an aide in a panic. She snipped off his diaper, revealing genitals that were deep red and skin sloughing off.
Two days later, Gill was dead from Lewy Body Dementia, according to a copy of his death certificate provided to the AP. Linnertz always expected her father to die of the condition, which causes a progressive loss of memory and movement, but never thought he would end his days in so much needless pain.
This April 17, 2020, photo provided by June Linnertz shows her father, James Gill.
"What the pandemic did was uncover what was really going on in these facilities. It was bad before, but it got exponentially worse because you had the squeeze of the pandemic," Linnertz said. "If we weren't in a pandemic, I would have been in there ... This wouldn't have happened."
The assisted living facility's parent company, Ebenezer, said: "We strongly deny the allegations made about the care of this resident," adding that it follows "strict regulatory staffing levels" required by law.
Cheryl Hennen, Minnesota's long-term care ombudsman, said dozens of complaints have poured in of bedsores, dehydration and weight loss, and other examples of neglect at various facilities, such as a man who choked to death while he went unsupervised during mealtime. She fears many more stories of abuse and neglect will emerge as her staff and families are able to return to homes.
"If we can't get in there, how do we know what's really happening?" she said. "We don't know what we can't see."
The nagging guilt of unnecessary death is one Barbara Leak-Watkins understands. It was just in February that her 87-year-old father, Alex Leak, went for a check-up and got lab work that made Leak-Watkins think the Army veteran, contractor and farmer would be with her for a long time to come.
Sisters Barbara Leak-Watkins, right, and Alberta Lynn Fantroy pose with photos of their late father, Alex Leak Jr., at Watkins' home in Greensboro, N.C.,
"You're going to outlive all of us," Leak-Watkins remembered the doctor saying.
As nursing home outbreaks of COVID-19 proliferated, Leak-Watkins prayed that he be spared. The prayer was answered, but Leak was nonetheless found unresponsive on the floor at Brookdale Northwest in Greensboro, North Carolina, his eyes rolled back and his tongue sticking out.
After he arrived at the hospital, a doctor there called Leak-Watkins with word: Her father had gone so long without water his potassium levels rocketed and his kidneys started failing. He'd be dead two weeks later of lactic acidosis, according to his death certificate, a fatal buildup of acid in the body when the kidneys stop working. For a man whose military service so drilled the need for hydration into him that he always had a bottle of water at hand, his daughter had never considered he could go thirsty.
"The facility is short-staffed ... underpaid and overworked," Leak-Watkins said. If they "can't provide you with liquids and fluids to hydrate yourself, there's something wrong."
Two buttons handed out to mourners at Alex Leak Jr.'s graveside service sit on an ottoman in his daughter's home in Greensboro, N.C.
The daughter is considering filing a lawsuit but a North Carolina law granting long-term care facilities broad immunity from suits claiming negligence in injuries or death during the pandemic could stymie her efforts. Similar laws and executive orders have been enacted in more than two dozen states.
The owner of the father's facility, Brookdale Senior Living, said it couldn't comment on individual cases but that "the health, happiness and wellbeing of each of our residents will always be our priority."
Around the country, the heartache repeats, not only among families who have already buried a member, but also those who feel they are watching a slow-moving disaster.
In Hendersonville, Tennessee, Tara Thompson was able to see her mother for the first time in more than six months when she was hospitalized in October. The 79-year-old had dropped about 20 pounds, her eyes sunken and her legs looking more like forearms. Doctors at the hospital said she was malnourished and wasting muscle. There were bedsores on her backside and a gash on her forehead from a fall at the home. Her vocabulary had shrunk to nearly nothing and she'd taken to pulling the blankets over her head.
The facility Thompson's mother lived in had been engulfed in virus outbreaks, with more than half its residents testing positive and dozens of employees infected, too. She never caught it, but shaken by the lack of care, Thompson transferred her mother to a new home.
"It has nothing to do with the virus. She's declined because she's had absolutely no contact with anybody who cares about her," she said. "The only thing they have to live for are their families and, at the end of their life, you're taking away the only thing that matters to them."
"Failure to thrive" was among the causes listed for Maxine Schwartz, a 92-year-old former cake decorator whose family had been encouraged prior to the lockdown by how well she'd adjusted to her nursing home, Absolut Care of Aurora Park, in upstate New York. Her daughter, Dorothy Ann Carlone, would coax her to eat in the dining room each day and they'd sing songs and have brownies back in her room. Several times a week, Schwartz walked the length of the hallway for exercise.
When the lockdown began March 13, Carlone feared what would happen without her there. She pleaded to staff: "If you don't let me in to feed her, she won't eat, she will starve."
On March 25, when a staffer at the home sent a photo of Schwartz, Carlone was shocked how thin she was. Carlone was told her mother hadn't been eating, even passing up her favorite brownies.
Two days later, Carlone got an urgent call and when she arrived at the home, her mother's skin was mottled, she was gasping for breath and her face was so drawn she was nearly unrecognizable. An hour later, she died.
Dawn Harsch, a spokeswoman for the company that owns Absolut Care, noted a state investigation found no wrongdoing and that "the natural progression of a patient like Mrs. Schwartz experiencing advanced dementia is a refusal to eat."
Carlone is unconvinced.
"She was doing so good before they locked us out," Carlone said. "What did she think when I wasn't showing up? That I didn't love her anymore? That I abandoned her? That I was dead?"
Before the lockdown, Carlone's mother would wait by an elevator for her to arrive each day. She thinks of her mother waiting there when her visits stopped and knows the pain of the isolation must have played a role in her death.
"I think she gave up," she said.
Sedensky and Condon reported from New York. AP data journalist Larry Fenn and investigative researcher Randy Herschaft contributed to this report.