DisElderly Conduct: The Flawed Business of Assisted Living and Hospice: Excerpt 

Adapted from DisElderly Conduct: The Flawed Business of Assisted Living and Hospice 

by Judy Karofsky

On my mother’s first evening in her third assisted living facility, the main dining room was filled with music, visitors, and a western-themed buffet celebrating the facility’s third anniversary. I was certain we’d hit the motherload of abundant care. Besides being located near a city park, family restaurants, and a coffee shop, the facility’s com-plex offered patios, pergolas, and quiet seating overlooking a small duck pond. Some amenities were beyond my mom’s interest or activity level, but she could still enjoy the bistro, fireplaces, and library. 

We were emboldened when her hospice services were seamlessly transferred. Later, my mother told the assembled nurses and Certified Nursing Assistants (CNAs) that she was content. A new hospice team met her in the common area while she was listening to the piano. (As time went on, that setting and activity would become her most comforting.)

My small dog sat on her lap. The team noted that she greeted them with a smile, said she was looking forward to working with them, and denied any pain or immediate needs. Her “recent stroke” and the move “took a lot out of me,” she reportedly said. (In truth, the disabling stroke, which she continued to describe as her “minor stroke,” had occurred two and a half years earlier.)

A plaque at the entrance told a familiar story: a promise to create a comfortable home for elderly  people and to improve upon the quality of care that had been received by a beloved relative. I’d read or heard about similar pledges in suburban Boston, in the state of Oregon, and in Wisconsin: Families frustrated by unhappy experiences embark on new facilities and innovative care programs for others’ loved ones, who might soon be suffering from chronic diseases and dementia. Although good intentions may be pledged, senior housing remains a business—a classification of real estate. Residents’ private rooms, dining areas, and common spaces are planned and designed to utilize construction time and materials efficiently enough to maximize revenue per square foot. As in the hospitality and multifamily housing sectors, the income calculus works only if residents’ rooms are occupied. A retired physician, an observant resident in my mom’s first assisted living environment, had decided that the director was only interested in showing rooms to potential occupants. He said, “He’s a real estate agent.”

Within four months of my mom’s arrival, an exodus of staff members began. Five nurses left (three within one week), the manager of the secure memory care section submitted her notice, and the executive director either resigned or was fired (pre sent on Friday, gone by the following Monday). During one tumultuous year, the director’s position rotated among four different individuals— with four different leadership styles.

Caregivers transferred to other facilities or joined itinerant staffing agencies (some said goodbye, some simply failed to appear for their assigned hours, and a few walked away mid- shift). The activities staff, whose members had cared for my mom more consistently than the certified caregivers, became decimated. Almost every member left— except one talented and overworked music specialist— our favorite.

The specific, stimulating programming that I thought might occur in memory care never materialized. Colorful exercise equipment remained on open shelves or behind closed cabinet doors. “Want to see a movie?” became one long word: “Wannaseeamovie?”

As residents either moved to other assisted living facilities or died, vacant bedrooms were secured, and the staff removed tell-tale empty tables and chairs from the dining room. Possibly because my mom was older, we were more affected by the turnover of personnel than we had been at her previous homes. She became disoriented and sullen as an ever-changing mix of temporary caregivers was hired from staffing agencies. Lacking on-site experience, agency caregivers tended to be distant, disengaged, and unfamiliar with the facility’s schedule and the residents’ needs. Some worked irregular hours, while others served for a week or two. Frequently, the temporary agency personnel outnumbered the facility’s own employees.

Longer-term caregivers were sources of more consistent care, concern, and affection, but they struggled under constantly changing schedules, reassignments within the facility, and inconsistent supervision. Evening attention was delayed by the prevalence of sundowning, the state of confusion that occurs in late after noon and lasts into  evening for people suffering from Alzheimer’s disease and other dementias. Disoriented residents argued, screamed, and fought with their caregivers in the hours after daylight. 

To make matters worse, the dangerously inadequate number of caregivers was nearly always reduced by one CNA, because a difficult resident locked her door each night and demanded that one nursing assistant remain hostage until she was ready to release her— and she owned a cell phone (the only resident who had one), which she used at will to call the local police.

When the need was greatest, the staffing level was lowest. My aging mom had become a two-person transfer, and no one expected or wanted me to continue transferring her to bed by myself. Many nights, I paced while we waited for assistance. My mother dozed in her wheelchair, but she wanted to be in bed—and I wanted to go home.

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Judy Karofsky is the author of DisElderly Conduct: The Flawed Business of Assisted Living and Hospice (New Village Press, May 13, 2025), a housing consultant, and an advocate for eldercare reform.

DisElderly Conduct: The Flawed Business of Assisted Living and Hospice

The book is a personal account of unmet needs in assisted living and hospice aiming to spark discussions about new approaches for America’s aging population and family decision makers. There are 30 thousand assisted living facilities in the US, but most are unaffordable for middleclass Americans and fraught with staffing deficiencies and mismanagement. Chapters on the author’s experience helping her mother move from an age-restricted community in Florida to independent living in Wisconsin to assisted living will interest seniors and their family members who know the struggle of finding long term affordable care. The chapter on hospice care distinguishes it from assisted living through the author’s experiences and misconceptions, then moves to a broader discussion of Medicare spending, and finally a meditation on dying of old age. The author strikes an effective balance between the personal, political, and cultural aspects of aging. Karofsky dedicates the last chapter of the book to a discussion of recent failures to protect long term care patients during the COVID19 pandemic.

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