The Flawed Business of Assisted Living and Hospice
Former Middleton, Wisconsin, mayor, Judy Karofsky, admits that she was unprepared when her mother, Lillian Deutsch, was hospitalized with pneumonia in 2006. Her mom had always been independent—she had not only performed stand-up comedy but had also been a corporate manager in an era when few women, especially Jewish women, held positions of authority.
Still, Deutsch’s declining health meant that it was risky to continue living on her own, and in short order, Deutsch left Florida and moved to the Badger State, grateful to be near her only child. For the next seven years, she was able to preserve her autonomy and lived comfortably and actively in a continuing care retirement community. But this arrangement changed in 2013 when Deutsch, then 95, began having frequent ischemic attacks, or mini-strokes. These were soon followed by a massive stroke, a broken hip, and advancing dementia.
Karofsky’s account of her mom’s last four-and-a-half years—she died several weeks shy of her 100th birthday—is harrowing and chronicles the negligence and indifference she experienced at six different assisted living facilities. Likewise, her family found dealing with hospice, which both women expected to offer compassionate palliative care, to be riddled with frustrating encounters and bureaucratic roadblocks.
It’s a sad and enraging account. That said, by outlining the ways that the growing assisted living and hospice industries fail elders who rely on them, DisElderly Conduct (New Village Press, $24) provides readers with essential data. Part memoir, part exposé, part call to action, the book makes its case by moving from the personal to the political. As it unfolds, it gives readers an inside look at the failures endemic to so-called “professional” care. In Deutsch’s case, the indignities experienced in assisted living ranged from physical and sexual assault to being left on the floor for hours following a late-night fall. What’s more, on more than one occasion, Karofsky found her mom lying in urine-soaked sheets and noted that, while her mom did not keep kosher, her requests to avoid pork products and shellfish went unheeded. Complaints went nowhere.
Adding to these affronts, the family paid between $5100 and $12,000 a month, out of pocket, for Deutsch’s “care.” Karofsky explains that while Medicare pays for hospice, it does not pay for assisted living or memory care. Worse still, neither program is subject to federal oversight, unlike federally-monitored Skilled Nursing Facilities. This has led to a power grab in which assisted living and hospice industries have been purchased by unscrupulous franchises and corporations with no expertise. In place of a professional staff of doctors, registered nurses, and licensed physical and speech therapists, assisted living facilities now rely on a revolving workforce of underpaid Certified Nursing Assistants.
The result has been a boon for the industry and a bust for seniors. More than 70 percent of America’s burgeoning long-term care and hospice providers— Karosky reports that 1.2 million people currently reside in 30,600 assisted living facilities—are run by for-profit companies, including private investment firms. “The senior care industry is bottom-line oriented,” Karofsky concludes.
Unfortunately, DisElderly Conduct does not offer an alternative model for non-profit or better-run public (or even private) eldercare. Nonetheless, Karofsky’s impassioned plea gives face to a growing crisis, one that hits at the heart of feminist concerns like bodily autonomy, and dignity. “Our parents and grandparents are not mere digits,” she concludes. “Our obligation is to work together to create and advance a care plan that will honor the defenseless and protect our most vulnerable.” Feminists have long championed beginning-of-life care as our issue; now many of us are seeing that end-of-life care is ours to advocate for, too.
Eleanor Bader is a writer based in New York City.
