Dancing with Rose -- the Book

The author of this book is Lauren Kessler, a journalist whose mother died of Alzheimer's. Eight years after her mother's death, Lauren wanted to learn more about the disease, to confront what she had been too frightened to confront at the time of her mother's illness. She admits that it was an attempt, in part, "to make up for being a lousy daughter."

Her avenue of learning was to take a position as a Resident Assistant at 'Maplewood', an Assisted Living facility which specializes in Alzheimer's Care. (I use the word 'facility' deliberately. As one reads the book, it is clear that despite the love and care of the caregivers, there is, as a result of the corporate model, an institutional approach to care. It is run by schedule; it is not person-centered. It is not a community; it is a facility.)

Undoubtedly the touching descriptions of her bonding with the residents ring true, and leave the reader with a sense of gratitude. Lauren loves those in her 'neighborhood' and she senses that same devotion among many of her peers. She reflects upon a funeral of one of the residents where at least nine staff people from Maplewood are present, some at no small cost. Resident Assistants (RAs) who were scheduled to work that shift have switched with another RA, and they will work a shift for that RA when requested.

One can only conclude that Lauren does not know that long-term care does not have to be in the institutional mode. The transformative power of culture change has not found its way to the corporate offices of the Maplewood chain. Thus, when Lauren reflects on the state of the "eldercare industry", she reflects what is found in the all-too-numerous 'traditional' retirement settings, not the transformative HOME of culture change. This is what she says:

She apologizes to a resident for his having to wait for so long after he told her he needed to go to the bathroom. His response was, "I guess that's my job now, to wait."

"I think about Larry's comment for the rest of the day. I think about the time old people spend waiting, not just in places like Maplewood but throughout the eldercare system – nursing homes, assisted living, rehab, any facility that houses those who are no longer able to take care of themselves. They lie in bed, wide awake at 5:00 a.m. waiting for a caregiver to help them get up and dressed. They sit at the table waiting for meals, the first ones wheeled in fifteen or twenty minutes early because it takes so much time to get everyone in their places. They wait, like Larry, to be taken to the bathroom. They wait for attention.

"The problem is understaffing. The problem is undertraining. The problem is high caregiver turnover. The problem is paying minimum wage. The problem is the eldercare industry. (I could go on and so I will: The problem is undervaluing the elderly. The problem is fear of aging. The problem is fear of dying.) Some problems can be easily fixed and others can't. Whatever the problems they are either ours to solve or, twenty or thirty or forty years from now, ours to live." (emphasis mine)

I hope that Lauren and every future long-term-care resident find a person-centered retirement community and then demand that operational philosophy from long-term care providers. We will either change it or live it.