It Shouldn't Be This Way: The Failure of Long-Term Careby Robert L. Kane M.D., Joan C. West, Robert L. Kane M. D.
Pub. Date: 05/28/2005
Publisher: Vanderbilt University Press
The failure of long-term care is the country's best-kept embarrassing secret. Almost every adult in the United States will either enter a nursing home or have to deal with a parent or other relative who does. Studies show that 40 percent of all adults who live to age sixty-five will enter a nursing home before they die, while even more will use another form of
The failure of long-term care is the country's best-kept embarrassing secret. Almost every adult in the United States will either enter a nursing home or have to deal with a parent or other relative who does. Studies show that 40 percent of all adults who live to age sixty-five will enter a nursing home before they die, while even more will use another form of long-term care.
Part memoir, part practical guide, part prescription for change, It Shouldn't Be This Way is a unique look at the problems of long-term care. Robert L. Kane, a highly experienced physician and gerontologist, and his sister, Joan C. West, tell the painful story of what happened to their mother after she suffered a debilitating stroke and spent the last years of her life in rehabilitation, assisted-living facilities, and finally a nursing home. Along the way, her adult children encountered some professionals who were kind and considerate but also many frustrations—inadequate care and the need to hire private duty aides, as well as poor communication and lack of coordination throughout the system. The situation, they found, proved far more difficult than it needed to be.
As the authors recount their mother's story, they impart various lessons they learned from each phase of the experience. They alert those who are confronting such situations for the first time about what they will likely face and how to approach the problems. Closing with a broader look at why long-term care is the way it is, they propose steps to make necessary reforms, including the development of national organizations to work for change. Their message to families, care professionals, and policy-makers could not be more urgent.
- Vanderbilt University Press
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Table of Contents
Chapter 1: Introduction
We present our goals in writing this book
Chapter 2: Background
It is important to understand who our mother was, how her personality affected her experience with long-term care, and what values made her experience with long-term care all the more pathetic.
Chapter 3: The Stroke
The immediate treatment for her stroke took place in a community hospital. We then had to move her from Florida to New York. This care can be inappropriate for frail confused older people.
Chapter 4: Rehabilitation
We transferred her to a rehabilitation hospital; such care may benefit older people, at least up to a point.
Chapter 5: Assisted Living
We placed our mother in an assisted living facility that failed to meet her care needs. It emphasizes the lack of responsiveness and the poor coordination with medical care. The assisted living management insisted that we hire our own private duty aides.
Chapter 6: Dementia Unit
We moved our mother to an assisted living facility that operated a specific unit designed to oversee persons with dementia and the frustrations that ensued. Here again there were many problems coordinating her care and again we had to hire our own aides.
Chapter 7: Nursing Home
Our mother's last few months were spent in a nursing home, where she got better care but in a more sterile environment.
Chapter 8: Doctors, Other Medical Personnel and Hospitals
The full range of our experience focuses attention on the frustrations of dealing with the medical system: the poor communication, the lack of coordination, and the inconvenience. However, not all of these experiences were bad. Several physicians were kind and considerate, but the system made life harder than it needed to be.
Chapter 9: Informal Care
The experiences of giving care to a family member never ended even when our mother was being cared for in settings that were supposed to provide such care.
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