Health care reform, which has dominated domestic policy discussion for months, took a major step forward Tuesday after the Senate Finance Committee unanimously approved a bill that seems to augur substantial, if centrist, reform.
One part of the health care reform effort that has received comparatively little attention is the Nursing Home Transparency and Improvement Act.
Among the bill’s major elements: improved access to information about how well nursing home providers staff their facilities; more quality-related information being made available to the public; making it easier for family members to file complaints about poor care and protect them from retaliation; and ensuring better care of the 70 percent of nursing home residents with Alzheimer’s and other dementia by requiring pre-employment training in dementia management and abuse prevention.
Daniel Jay Baum is a retired law professor and childhood friend of my father.
His mother spent her final six years in an assisted living facility-a stint during the end of which her dementia became more and more pronounced.
Baum writes a personal, insightful account of his and his mother’s experience in Assisted Living for Our Parents: A Son’s Journey.
The journey is a decidedly mixed one.
Baum writes the book three years after his mother’s death, and it’s clear both that he is processing the experience and has enduring misgivings his mother’s treatment at Glengrove, an assisted living facility hundreds of miles from his home in Canada.
Assisted LIving for Our Parents opens with Baum’s recognition that his mother, at age 89, could no longer live safely in her home.
Divorced and working, Baum weighs, but decides against, his mother coming to live with him. These realizations prompt him to encourage her subtly, and not so subtly, to sell the home in which she had lived for more than 40 years and move to an assisted living facility.
In many ways, the move seemed like a positive one.
Baum was in the position to pay the comparatively hefty price tag for the facility, which catered to both Reform and Orthodox Jewish residents. His mother was sprightly and had both intact mental facilities and significant mobility when she entered the home, which promoted itself as committed to helping residents’ “aging in place”-a term that essentially conveyed a belief in practices that help residents retain as much independence as possible.
Although distressed about leaving her home, Baum’s mother instantly connected with another resident, Alice, with whom she established a close relationship, enjoyed talking with staff and the in-house deli and became a model resident for how she maintained her room.
But the experience was far from universally positive, especially when Baum’s mother’s mental and physical decline became more pronounced. In addition, and perhaps more importantly, Baum and his mother rapidly came to understand that the home’s rhetoric about residents’ independence was just that-a largely empty set of promises that was belied both by staff behavior and administrative practice.
In fact, matters ranging from residents’ sexual activities to the people invited to Baum’s mother’s birthday party were deemed as to be under managerial control.
This controlling approach combined with what Baum characterizes as inattentive and even incompetent medical care as his mother’s dementia worsens leads to some painful moments and frantic interactions between Baum and the home’s staff, doctors and administration.
One of the book’s many strengths is Baum’s unsentimental and unsparing look both at his own and others’ conduct.
He writes at the beginning of the book, for example, about his not so subtle advocacy of his mother’s leaving her home-a decision about which he appears ultimately to have some regret. His sticking with Dr. Brian toward the end of his mother’s life also seems in retrospect to give him pause.
His gaze applies to the home as well. The technocratic actions of the home’s administrators receive some attention, as does the facility’s largely indifferent response to Baum’s mother and other residents’ experience of having some of their belongings stolen.
Yet the book is not simply the account of a loving son working through emotional catharsis or an anti-nursing home screed. While holding himself to account in place, Baum also appears to be sharing his experience so that others can benefit. He writes approvingly of the presence of both Orthodox and Reform rabbis as well as of a number of staff who repeatedly demonstrate their concern for, and dedication to, the residents.
This balanced approach gives the book intellectual credibility as well as emotional resonance.
Assisted Living for Our Parents is a valuable work whose utility is only likely to increase as the baby boomers age and the need for assisted living and other nursing home care grows. While Baum’s inclusion of a set of recommendations is helpful, his honest and probing recounting of the details of his mother’s final six years is even more so.
As the most major health care reform in decades appears to gain decisive momentum, I hope that readers will consider this slender and accessible book.