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It Shouldn’t Be This Way

The Failure of Long-Term Care

Robert L. Kane, M.D. and Joan C. West

Publication Year: 2005

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.

Published by: Vanderbilt University Press


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Table of Contents

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p. v

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Chapter 1. Introduction

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pp. 1-8

The demand for long-term care is increasing steadily. It is the country’s best-kept embarrassing secret. Almost every adult in this country will either enter a nursing home or have to deal with a parent or other relative who does. Demographic studies suggest that 40 percent of all adults in this country who live to age sixty-five will enter a nursing home before they die. Even more will use some ...

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Chapter 2. Background

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pp. 9-20

To understand this story, you have to know a little about our mother. Ruth was an extremely attractive, intelligent woman with a certain elegance and panache about her. She had been married to a man who had achieved modest success as an executive in various men’s retail clothing firms. He very much looked the part. Perhaps because clothing was our father’s occupation and because our mother ...

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Chapter 3. The Stroke

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pp. 21-40

On May 17, 1999, our eighty-five-year-old mother woke up confused and with a headache. Her right side was weak. This time she did not call 911. Instead, for reasons we will never understand, and with abilities we will never know how she summoned, she dragged herself out of her condominium apartment, into the elevator, and out onto the floor of the building’s lobby. She was able ...

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Chapter 4. Rehabilitation

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pp. 41-55

The rehabilitation doctor was clearly distressed when he saw our mother, hardly looking like a patient ready for active rehabilitation, Nonetheless, he admitted her late on Friday afternoon. Ordinarily a late Friday admission is wasteful because full rehabilitation cannot be mustered over the weekend. Many hospitals virtually shut down over the weekend, or at least they drastically cut back on their staffing and the related activities. Rehabilitative units, ...

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Chapter 5. Assisted Living

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pp. 56-84

When we brought our mother to the assisted-living facility in June 1999 she thought she was moving to a hotel. Her perception was quite apt, since the building had originally been a motel in a well-known chain. The new owners had created an attractive common space, with dining rooms that featured wait staff, recreational areas that included a theater with large-screen TV for ...

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Chapter 6. The Dementia Unit

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pp. 85-100

About the same time that it became clear that we would have to make a major relocation decision, Joan decided to move farther out on Long Island, where she would no longer be at a convenient distance from Terraceview. Close to Joan’s new home, however, was an assisted-living facility operated by one of the largest national chains, whose president had championed the ability to serve complex ...

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Chapter 7. Nursing Home

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pp. 101-116

Sunset had made it very evident that they could no longer care for our mother. Hiring a full-time aide on top of the money we were paying for the assisted living that provided ever less assistance seemed unworkable and expensive. At the same time Ruth’s financial resources were beginning to diminish rapidly. For the first time, we began to seriously think of her as a potential Medicaid candidate. If she were eventually to go on Medicaid we knew our chances ...

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Chapter 8. Doctors, Other Medical Personnel, and Hospitals

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pp. 117-129

Any frail older person will have plenty of encounters with the health care system. Indeed, medical care use is heavily skewed. A small number of individuals (perhaps 20 percent of the population) accounts for the majority (more than 70 percent) of all use. Not surprisingly, frail older persons are a large part of that 20 percent. Frail older persons present special challenges to the health care ...

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Chapter 9. Informal Care

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pp. 130-1`41

Informal care, which is jargon in the gerontological literature for the unpaid care of family and friends, is the heart of long-term care. Most informal care is supplied by women—wives, daughters, and daughters-in-law. Many observers have worried that as more and more women enter the workforce, the availability of this critical informal care will diminish sharply. So far there has been no sign ...

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Chapter 10. The Roads Not Taken

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pp. 142-150

During our mother’s illness, we made decisions that had particularly great consequences for the future. Each such decision meant choosing one option and forgoing another. There is no test to determine whether a decision is good or not, only the constant reassessment of an outcome experienced. Life is not a series of opportunities to go down each path, and in the end, we had to be ...

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Chapter 11. The End of Life

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pp. 151-156

We discussed end-of-life care on many occasions, regularly lamenting that the end of our mother’s life was not playing out as she had scripted it. Knowing how she dreaded being disabled, it was not difficult for us to interpret her desires concerning what she wanted done if she became even more incapacitated. In the two assisted-living facilities, Ruth eagerly completed advance directives that declared that no efforts should be made to resuscitate her. ...

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Chapter 12. What Kind of Long-Term Care Do We Want? What Can We Do About It?

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pp. 157-170

The message of this sad tale is that for families caring for their elderly, money and knowledge are necessary but not sufficient. In many respects our mother had a better chance at success than most other people in her circumstances. She was not wealthy but she could afford to pay privately for her care, although her resources would not cover as much private-duty nursing as might have been required and could not have lasted indefinitely. We, her two children, ...

Appendix 1: Suggested Reading

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pp. 171-172

Appendix 2: Web-Based Resources

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pp. 173-176


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pp. 177-180

E-ISBN-13: 9780826591944
Print-ISBN-13: 9780826514875
Print-ISBN-10: 0826514871

Page Count: 200
Publication Year: 2005

OCLC Number: 69407449
MUSE Marc Record: Download for It Shouldn’t Be This Way

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Subject Headings

  • West, Joan C., 1945-.
  • Caregivers -- United States -- Biography.
  • Frail elderly -- United States -- Biography.
  • Long-term care facilities -- United States -- Case studies.
  • Frail elderly -- Care -- United States -- Case studies.
  • Frail elderly -- Family relationships -- United States -- Case studies.
  • Kane, Robert L., 1940-.
  • Older people -- Long-term care -- United States -- Case studies.
  • Kane, Ruth, d. 2002.
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