From Mom-Care to Action: Identifying the Crises in Eldercare

 

“I didn’t set out to write a book,” author Judy Karofsky said during a recent reading at Magers & Quinn Booksellers in Minneapolis. “My mom was my inspiration.” The audience was made up primarily of worried women — caregivers for aging loved ones, or anticipating their own old age — who nodded in recognition. 

DisElderly Conduct: The Flawed Business of Assisted Living and Hospice (New Village Press, 2025) is the book Karofsky produced seven years after her mother died, just shy of age 100. It began as a notebook of jokes and one-liners that her mom would toss off during their time together. A one-time amateur comedienne, Lillian Deutsch “was an amazing personality,” Karofsky says.

 

 

After her mother had a stroke and became more physically fragile, Karofsky faced the realities and indignities of understaffed, overpriced senior living facilities. “Chores weren’t getting done, her clothes were dirty, her meds weren’t being taken properly,” she recalls.

As her mother slept more throughout the day, Karofsky stayed by her side and began to write essays in earnest. An agent helped her package the statistics and stories into a book aimed at aging Boomers (all of whom will be over 65 by 2030, Karofsky notes) and their families, who often have to face decisions about elder care quickly and under pressure.

“Sadly,” she writes, “the route to assisted living and memory care solutions is strewn with poorly researched and reactionary choices like mine.”

DisElderly Conduct walks readers through Karofsky’s journey through six assisted living facilities and eventual hospice care before her mother’s death in 2018. Several themes emerge in the well-researched book:

• Unlike nursing homes, assisted living facilities lack federal regulation.
• Facilities are marketed to downsizing retirees — and desperate, grieving family members — as more homelike, active environments than they have the staff or resources to be.

Hospice, as compassionate as the concept sounds, “is a business, with a bottom line,” Karofsky says. Its strict requirements for Medicare coverage include the expectation that a patient will die within six months.

“Other countries have co-generational housing,” says Karofsky, an only child who managed her mother’s decline largely on her own, with her mother’s dog, Bakin, at her side, enticing her out on daily walks. “I saw so many infractions, people left alone, left unfed, crying, messing on the floor. Right now, we’re in crisis mode.”

Agitate and Advocate

The Trump administration’s crackdown on immigration has only exacerbated the staffing shortage in an industry where workers already are underpaid and undertrained. “If people are afraid of deportation, they’re going to be less effective on the job,” Karofsky explains.

Karofsky’s book website offers stark evidence of the elder-housing crisis, including the story of a fire that killed 10 residents at an assisted living facility in Massachusetts in July. Another story is about how real estate developers are buying and selling nursing homes (also known as skilled nursing facilities) with an eye more toward turning a profit than improving conditions for the fragile residents.

That’s a pain point for Karofsky, who established a senior center in Middleton, Wisconsin — where she served as one of the state’s first women mayors — and researched elder economic security for a statewide women’s network. 

 

Elder-care facilities are “part of a real estate investment game,” she says. “We need to do something before private equity buys up every one of these.”

 

Karofsky brings people’s attention to hearings the U.S. Special Committee on Aging held on elder housing in 2024, as well as a 2023 report on nursing homes, “Residents at Risk,” coauthored by Senator Elizabeth Warren (D-Massachusetts), that calls for minimum staffing standards. (Minnesota does require assisted living licensure that includes a Bill of Rights requiring “appropriate level of care” based on a patient’s needs and written up in their contract with the housing provider. An “ideal” staff-to-patient ratio often is cited as 1:8. Michigan, by contrast, uses a nuanced formula of 1:8 certified nursing assistants to residents during the day, 1:12 CNA to residents in the evenings, and 1:15 at night.)

“This is not a blue or red issue,” Karofsky told the audience at Magers & Quinn. “Only 13 states have a minimum staffing level requirement for assisted living. We have to demonstrate [that this issue matters to us] and ask every candidate for office about their stance on elder care.”

Karofsky has appeared on more than a dozen podcasts since her book launch in May. Now, she wants others to speak out too. “I want people to say, ‘I’m not going to take this anymore,’” she declares, citing an article from ProPublica that warns consumers to be aware of hospice fraud. “The moneymakers [should not be] in charge here. Make sure these places are safe and well-staffed. There are so many angles to this issue.”

Karofsky, 83, has downsized from the house where she lived for 23 years into a one-story condo in Madison, Wisconsin, walking distance from a coffee shop, the post office, and a grocery store. Her new home has two bedrooms, so a caregiver or one of her three children could stay overnight. “I’m hedging,” she says. “There will be a time when I need care.”

If she has any say in the matter, with today’s standards, it will not be in senior housing.

Details: diselderlyconduct.com

 

 

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