"This is my story, too"

So many people's loved ones have received poor care in assisted living

Last week, I published a story in the Guardian, “In the US, not even $11,00 a month can buy you dignity at the end of life,” which unexpectedly became their #1 article of the day, with over 800,000 readers.

The story wove together my personal experiences with my father’s poor end-of-life care in what seemed to be a well-run and well-appointed facility with a lot of reporting about the miserable these places give throughout the country. Ironically, my mother had been an activist for the elderly and an ombudsman for the nursing homes, and had tried to plan a better end for my parents. Now, as was true when she was working 20 years ago, most assisted living and nursing homes are run by corporate chains that are owned by private equity or real estate investment trusts. They focus on the bottom line, not on the vulnerable people who live in their facilities. Staff are overwhelmed, and with so many people, unable to provide good care, even if they’d like to.

As with the climate, bottom-line capitalism is antithetical to quality of life here in the US.

The heartlessness of the assisted living system is overwhelming. After I visited a residents’ council and called the executive director to get her response to their complaints, the mother of the woman who had organized the council Betsy Zampa, was asked to leave. They had a problem with Betsy and her rabble-rousing, not her mother. But think of how disorienting it is for an elderly woman with dementia to have to move from her home. What little kept her tethered to reality would be lost. I’m glad to hear that Betsy and a local elder rights lawyer are suing to prevent her eviction.

A lot of people wrote to say that the story I told about my father was their story, too, of “assisted living” places neither providing assistance nor much quality of living. I tried to answer everyone. (Except the people who wrote to ask me to critique their articles on completely different topics—WTF?)

A lot of people who wrote have tried to make reforms, inside and out of the system, but it’s tough. One woman wrote, “I used to work in leadership roles the assisted living industry, but ultimately couldn't stomach the false promises, profit motives, and bureaucratic barriers to reform. I did my best to create positive change but I burned out hard.”

A nurse who has worked in assisted living facilities wrote, “As a nurse, I went into it because I love helping and caring for others. My first job, working in a long term care facility, I was responsible for 20-60 patients. If this number was whittled down, we would have had time to give each resident the attention they deserved and craved. I tried to help every patient who needed it, even those who didn't ask- simply cleaning someone's glasses made their day. I would get in so much trouble for staying overtime to chart but it was inhumane to ignore cries for help, loneliness, and severe depression. There's so much abuse and neglect in these places, it's disgusting.”

Another woman, Beth Steffy, is trying to get some safety measures passed after her mother, along with 23 other disabled seniors, was abandoned at her assisted living facility in Santa Rosa as the 2017 Tubbs fire headed toward them. Her mother survived; two did not. She tried to work on reforms —legislation for minimum staffing levels, posted evacuation plans with drills, and backup power. She focused on backup power, and her bill (SB435) requiring backup power is working its way through the CA State Senate, and having passed the Human Services Committee with a unanimous vote a couple of weeks ago, is now headed toward Appropriations, where it faces bigger headwinds—because the nursing home lobby knows it will cut into their bottom line to have to have backup power for emergencies like fires so that people are trapped. And, of course, another emergency is on the way.

If you’re in California, this would be a good time to write to your state senator.

Meantime, in Texas, U.S. District Court Judge Matthew Kacsmaryk judge recently ruled that the rules about minimum staffing levels set by the Biden administrations Centers for Medicare and Medicaid Services could not be implemented because any changes to federal nursing home statutes must be done by Congress.

This victory for the nation’s nursing home industry was predictable, given the current political climate, where lobbyists had welcome ears for their complaints that the requirements were too costly and unworkable for facilities that are already having difficulties attracting workers (because of the low pay). The Trump administration had already targeted these staffing minimums for elimination.

The rules, which were finalized in April 2024 and scheduled to be phased in over the next few years years, included a requirement of at least 3.48 hours of total nursing care for each resident per day, including just over half an hour from a registered nurse. (In assisted living, which are not regulated by the feds, there are no requirements for resident nurses or staffing minimums).

The U.S. may be the worst place in the world to grow old. A reader from New Zealand wrote me that his mother, who had duel New Zealand/US citizenship, died last year in NZ. When she became ill, she received hospital care at no personal cost. When it was clear she was declining, the hospital suggested he get her a hospital bed for the living room-and they’d arrange the rest.

“Two care workers came three times a day. If she got bed sores then a district nurse would come,” he said. “If she needed a doctor, as long as I paid for a half hour appointment to cover walking time, her doctor would come over, and a local podiatrist would do home visits for her toenails. In the last few days doctors and nurses came at no expense—apparently end of life care is all covered.” He and his relatives concluded, “She was being treated very well in her own home and the level of care she was receiving we could not have afforded in the US.”

That’s my plan as I age, as I wrote in the story. I’m going to get the hell out of this country.