The cover of DisElderlyConduct, which shows a hallway in an care facility, and a head shot of the author.
The call that woke Judy Karofsky in the middle of the night on May 18, 2015, was from a hospice nurse, who got right to the point: “I’m calling to tell you that your mother has died.” Karofsky, deeply shaken by the unexpected news, managed to ask, “Did she struggle?”
Karofsky’s important new book, DisElderly Conduct: The Flawed Business of Assisted Living and Hospice (New Village Press), does not mention the hospice nurse’s response to this question. But it does note that she called back a moment later to say: “I’m so sorry…I called the wrong number. I’m at a different facility and I had the wrong file.” Karofsky’s mother, Lillian Deutsch, had not died at all. It was someone else’s mother. Apologies were made.
This is just one of many stories Karofsky shares throughout the book about the final years of her mother’s life in Wisconsin. This particular anecdote strikes me as noteworthy not just as an example of the sort of awful things that can happen when facilities are understaffed and staff members are overworked, but also because Karofsky’s first reaction was to wonder whether she struggled.
The desire to minimize suffering — her mother’s and everyone else’s — is at the heart of this book.
DisElderly Conduct is an expression of Karofsky’s laudable desire to see something good come out of the many bad things that happened to her mom, who died a few days before her 100th birthday in April 2018. I understand that desire, having experienced and written extensively about my own mother’s terrible ordeal with an assisted living facility. There are thousands of such stories to tell. It’s important that they be told, and even more important that they be heard.
Lillian, who at age 11 lost her own mother to a self-induced abortion, was witty, fashionable and accomplished. After a career as an advertising executive, she retired to Florida with her husband and for a time dabbled in stand-up comedy. After her husband died, we’re told, somewhat obliquely, that she took up with a “nationally known magician.” She lived in Florida for 25 years; her remains are buried there today.
Lillian’s death was not without struggle; medication that could have eased her suffering was for various bureaucratic reasons not provided. Even the date of Lillian’s death was affected by holes in the elder care system. She died in her room, her daughter by her side, at about 11 p.m. on April 11. But since it was 1:30 a.m. before a hospice nurse arrived, her official date of death is April 12.
The crux of the problem, Karofsky explains at one point, is that the supply of elder care services has not kept up with the rising demand. As a result, “turnover, inconsistent training, and the profitable temporary service industry are placing the burden on the wider community — and especially on families.” And how.
DisElderly Conduct is not about nursing homes, which are federally licensed facilities that provide extensive round-the-clock care. Assisted living facilities are different. They operate under lenient state oversight, provide limited care, and typically are not covered by Medicare. But they are marketed, quite successfully, as an attractive alternative to nursing homes. The book also addresses the booming business of hospice care, which offers a wide range of services to people on Medicare who are expected to die soon.
In 2006, when Lillian was in her late 80s, she was hospitalized with a bout of pneumonia. Afterward, she moved to Wisconsin to be nearer to her only child, Judy, whose own professional career included a stint as mayor of Middleton. (One of Judy’s three children, Jill Karofsky, is now a justice on the Wisconsin Supreme Court.)
For the first seven-and-a-half years she was in Wisconsin, Lillian lived in an independent living facility. But over time, as her needs intensified and health deteriorated, the change was made to assisted living. Over the next four-and-a-half years, beginning in September 2013, Karofsky moved her mother to six different assisted living facilities in the Madison area. She left each for reasons ranging from dissatisfaction to eviction.
The eviction happened when Lillian lost her coverage for hospice care under a perverse rule that limits it to individuals who are expected to die within six months. For this offense — “not dying fast enough,” as Karofsky puts it — she lost her eligibility to remain at one facility and had to move to another.
At one facility, Lillian told her daughter that a male staffer had fondled her breasts; Karofsky reported it, but nothing much happened. At her next facility, someone — it’s not clear who — grabbed her so tightly it left bruises including the distinct imprint of fingertips, while saying, “I’ll give you something to scream about.” No charges were brought.
But Karofsky’s largest source of concern was not that her mother was being abused but that she was being warehoused, ignored, either under- or over-medicated, left unattended in times of need. Staff shortages and turnover were constant, even though the cost of care was astronomical ($7,000 to $10,000 a month).
Here’s how Karofsky describes her experience with assisted living: “I became unreasonably fearful of being away from my mom. I worried that she was receiving little to no care — at a facility that was being paid to provide care. I was constantly on emotional alert, even though there was no impending emergency.”
And yet, as with my mother, there were caregivers at these facilities who bonded with her mom and moments of tenderness, which are also part of the complex elder care equation. As Karofsky notes: “She was cared for, entertained, fed, appreciated, and loved; she was also hurt, bruised, neglected, marginalized, medicated, feared, ignored, and evicted.”
Karofsky presents a layered critique of the elder care system, from nursing care to food to activities. In all six assisted living placements, she writes, “I observed no consistent, reliable path to regular mental, emotional, and physical stimulation.” Only at one facility did her mother experience “fully staffed, reliable programming” — and then, only for a few months, until “employee shortages contributed more to disruption and disappointment than to a healthy routine.”
As Lillian’s health continued to decline, Karofsky’s role in her care, already substantial, grew larger. Indeed, she became her mother’s primary caregiver, bringing her food, doing her laundry, overseeing her medications, assisting with getting her into and out of wheelchairs.
In my mother’s case, my saintly sister Diane performed similar functions, visiting our mom, Elaine Benz, daily for years. This included standing outside in the cold and waving at our mom through windows when COVID-19 made in-person visits impossible.
In October 2021, when she was 97, Elaine was evicted from the senior care facility in Wisconsin where she had lived for 10 years. It happened from one day to the next, without appropriate notice or grounds, leaving our mother trapped at a physical rehabilitation center and sending us scrambling to find her a new place to live.
We complained to the state, which sent an investigator who determined that the facility, the Regency of New Berlin, had committed two violations of state administrative code in issuing its eviction. The facility was ordered to take corrective action and pay $1,500 in fines. But when the Regency’s lawyers complained, the state Department of Health Services promptly backed down and rescinded the citations without so much as a hearing, then falsified its records to make it look as though the violations were never flagged at all.
Karofsky also filed complaints with the state, regarding both assisted living facilities and hospice rules. Neither were sustained.
While the book is perhaps a bit more about identifying problems than solutions, Karofsky does provide some useful guidance: “We still have the power to formulate the discussion and redefine elder care. We can begin to downplay profits and establish the framework for a truly American system that honors direct care workers, families, and the elderly.”
When burying her mother’s remains in Florida next to her late father, Karofsky said to him, “I did the best I could.” Recalling this moment, she reflects on the failed elder care system she had encountered. “I might have been loud,” she acknowledges, “but I might not have been loud enough.
DisElderly Conduct is her attempt to turn up the volume. Let’s hope it’s loud enough to make a difference.
This article was originally published on the website of The Progressive, May 12, 2025.
