As a teenager, I was an orderly in a nursing home. As an adult, I watched my mother die from dementia in one. Decades of neglect have contributed to a nursing home crisis that, coupled with the coronavirus, has caused countless deaths by treating people like my mother and my former patients like disposable objects.
The figures, which are probably undercounting the totals, say over 60,000 American nursing home residents and workers have died from COVID-19. Many more have been sickened. And who knows how many older people have experienced terror and confusion while the crisis rages on?
Who knows how many older people have experienced terror and confusion while the crisis rages on?
The Rockland County, New York, facility where I worked nearly 50 years ago provided good care, but residents’ social and emotional needs were often neglected — and so were their personal stories.
I recall one resident, a 95-year-old man I’ll call Jacob. Jacob’s doctor had called for daily immersion in water.
“Putmedownputmedownputmedown!” Jacob would shout while being lowered into the bath, a call that turned to, “Liftmeupliftmeupliftmeup!” as soon as he made contact with the water. He’s never satisfied, complained my fellow attendants. Who would be?
True, Jacob could be disagreeable. But when I spent some time with him, I learned his life story, which included fighting with the revolutionaries in the Russian Revolution of 1905. Other residents had equally compelling stories. That’s the thing about our elders: They’re living history.
My mother kept my performance review from that job for years. As I recall, the gist of it went like this: Richard gives the patients lots of attention, and they’re very fond of him, but he’s not very good at his actual job. (Mom thought it was sweet.) I thought they needed and deserved that attention; I still do. But I was fired shortly afterward.
Nearly half a century later, I was sitting with my mother in her room in the Los Angeles nursing home when the head nurse stopped by for her daily visit. It’s vivid in my memory: “How nice to see you!” the nurse said with a bright smile. “How nice to see you!” my mother said, beaming back. “May I offer you a cup of tea?” The nursing director demurred, and the two women beamed at each other wordlessly for a few more seconds.
“You have no idea who I am, do you?” the nurse asked, still beaming. “No!” my mother beamed back. The nurse repeated her name and job title and left, her smile never wavering. “What a nice person,” my mother said. “Who was she?”
I’ve thought of that exchange often in recent months. Masking, while necessary, deprives struggling seniors of reassuring smiles. That may make their lives more frightening.
Studies have shown that health providers’ facial expressions may improve health outcomes in older patients and that health outcomes are affected when doctors wear masks. Experts have also said masks make communication more difficult for people with hearing loss, a condition many older people have. When they become ill with COVID-19, they’re often deprived of family contact, too. If you’ve seen dementia up close, that’s a horrifying thought.
My mother’s nursing home experience would last several more years, as her dementia advanced and her financial situation worsened. “Richard,” I remember her telling me in a conspiratorial whisper, “Are you alright … financially? Because, you know, I could give you a little something. Don’t be shy now.”
By this point, I was literally sleepless worrying about her bills. She was rapidly running out of money and was already in a lower-cost facility. She always loved the thought of leaving her life’s savings to her children. I never told her most of it was already gone.
At the end, my mother was functionally blind and deaf, unable to walk and in a state of advanced dementia. This may sound terrible, but her dying before the pandemic feels a lot like mercy. COVID-19 would have shrunk her world even more, as the deadly virus forces family members apart.
Attorney and senior care advocate Mike Dark described to Quartz in April how he received calls from family members who can only look through windows and “see family members turning blue, getting sick through the glass and they can do nothing to help them.”
While the pandemic has made the lives of nursing home residents around the country worse, America has been failing our elders for decades. Long-term factors include an over-reliance on the private sector for social services and Medicaid’s often onerous rules for nursing home coverage, including “spend down” rules that require an older person to use up their assets and “excess” income before qualifying for nursing home assistance, under strict and often complicated rules over how the money can be spent. Medicaid pays for about two-thirds of all Americans in nursing homes — and homes aren't cheap. According to the Kaiser Family Foundation, the average nursing home cost over $80,000 a year in 2016.
There were more than 1,246,000 people in certified American nursing homes in 2019, according to the latest statistics. That’s more than the population of eight U.S. states. But they have no senators, no members of Congress, nobody to speak for them. Too often, they are “out of sight, out of mind” when important decisions are made.
Nursing home life is expensive. As of 2016, the average monthly cost was $6,844 for a shared room, and additional care needs can drive the cost much higher. For-profit nursing homes had little financial incentive to prepare for pandemics, which worsened the crisis.
Political decisions also contributed to today’s crisis. Early in the pandemic, a Democratic governor, Andrew Cuomo, ordered hospitals to return older COVID-19 patients to nursing homes, a controversial decision that may have contributed to the death toll.
There were more than 1,246,000 people in certified American nursing homes in 2019. But they have no senators, no members of Congress, nobody to speak for them.
It could be argued that an overall shortage of medical facilities forced Cuomo into a no-win situation. It’s harder to find a rationale for President Donald Trump’s initial mockery of concerns about the virus.
New evidence suggests that community transmission, the very concern Trump dismissed, was the main cause of infections in nursing homes. The federal government dragged its feet on everything from COVID-19 testing to personal protective equipment for medical workers. This was on top of a system that lacked the long-term investment in medical resources needed to effectively care for older COVID-19 patients.
Medicare was less than 10 years old when I worked at that nursing home. We’ve learned much since then that could help us improve it and extend it to everyone, which would have helped us deal with COVID-19. Then, as now, there was very little commitment to meeting the emotional needs of patients, or to record and honor their life stories. Our society treats older people like burdens, when their experience and wisdom could be enriching us all.
More than 60,000 people have already died from COVID-19 in nursing homes. This is a national crisis, one that targets a population we too often treat as invisible. And while we may never know the full extent of this tragedy, we can be sure of this: Each of those tens of thousands of people had a story like Jacob’s, and each life was as precious as my mother’s.