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Always on Call: When Illness Turns Families into Caregivers

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Combining powerful personal stories with astute analysis and recommendations, Always on Call reveals the hidden struggles of the more than 25 million family caregivers in the United States. While family members have always provided care for one another, recent changes in health care have placed tremendous new responsibilities on them—responsibilities that, only a decade ago, were a routine part of hospital care. The prevalence of chronic rather than acute illness, trends toward shorter hospital stays, increased ...

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Overview

Combining powerful personal stories with astute analysis and recommendations, Always on Call reveals the hidden struggles of the more than 25 million family caregivers in the United States. While family members have always provided care for one another, recent changes in health care have placed tremendous new responsibilities on them—responsibilities that, only a decade ago, were a routine part of hospital care. The prevalence of chronic rather than acute illness, trends toward shorter hospital stays, increased outpatient care, and limited insurance benefits for in-home care now leave family caregiving as the only option for many Americans.

This book, first published in 2000 and now substantially updated, presents an intimate look at the world of family caregiving. The compelling narratives by caregivers capture the intensity of the caregiving experience, while chapters by noted health care professionals, many of whom speak of their own experiences, analyze the impact of caregiving, urge more professional advocacy on behalf of caregivers, and offer insightful suggestions for building partnerships for change and fostering improvement. This second edition includes:
- caregiving as a workplace dilemma
- the added burdens of end-of-life caregiving
- clinician-family conflicts (and new approaches for resolving them)
- new federal and state policy initiatives
- resources for families and professionals
- a new section on innovative caregiving programs
- new chapter on the financial impact of caregiving

Designed for family caregivers, health professionals, administrators, pastoral care providers, policymakers, patient and caregiver advocates, and human resource professionals, Always on Call is an essential book for understanding the current realities of family caregiving. Equally important, it builds a compelling case for change.

A United Hospital Fund Book

There are more than 25 million family caregivers in the U.S.:relatives, spouses, partners, and friends caring for those who are seriously ill or disabled. Yet despite their numbers and the growing burdens they face, the healthcare system provides them with woefully inadequate support. This new book by the United Hospital Fund chronicles the experiences of caregivers and calls for change. It includes powerful personal accounts of six family caregivers. Their stories echo with remarkably similar themes: feeling abandoned and isolated; being overwhelmed by technical tasks for which they received very little training; encountering healthcare professionals who ignored their needs; and often being consumed by the sheer volume of responsibilities. Accompanying the caregivers' stories, this book challenges healthcare professionals and policymakers to recognize and better respond to caregivers' needs. Healthcare professionals contribute chapters about the emotional and financial impact of caregiving, caregiving as a workplace dilemma, the added burdens of end-of-life caregiving, professional responsibilities toward caregivers, and clinician-family conflicts. A resource guide provides family caregivers and healthcare professionals with a wealth of information and sources of support.

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Editorial Reviews

From the Publisher
Always on Call provides useful advice to anyone who ever has been or will be a family caregiver, and it adds insights and policy suggestions that should enrich the broader health-care debate in this country.
Philadelphia Inquirer

In bold and compassionate essays, caregivers, activists and physicians take on the current 'process of market-driven health care' and turn it inside out, offering resources for caregivers and practical ideas for momentous change.
Publishers Weekly

. . . a wonderful book. the straightforward and simple style makes it a friendly resource for professionals and non-professionals.
Journal of Social Work in Long-Term Care

Levine and her authors cover most of the essential dimensions of caregiving, including several richly detailed and emotionally powerful caregiver narratives that touch on a wide range of caregiver experiences. These intimate accounts reflect the grinding hardship, mundane routines, constant challenges, and spiritual fulfillment of caregiving.
The Gerontologist

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Product Details

  • ISBN-13: 9780826514608
  • Publisher: Vanderbilt University Press (TN)
  • Publication date: 11/28/2004
  • Series: A United Hospital Fund Book Ser.
  • Format: Library Binding
  • Edition description: Expanded
  • Edition number: 2
  • Pages: 296
  • Product dimensions: 6.10 (w) x 9.10 (h) x 1.10 (d)

Meet the Author

Carol Levine joined the United Hospital Fund in 1996 as director of its Families and Health Care Project. From 1987 to 1991, she directed the Citizens Commission on AIDS in New York City. As a senior staff associate of The Hastings Center, she edited The Hastings Center Report. In 1993 she was awarded a MacArthur Foundation Fellowship for her work in AIDS policy and ethics.

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Table of Contents

CONTENTS

Foreword
James R. Tallon, Jr.
1. Introduction: The Many Worlds of Family Caregivers
Carol Levine

Part I. VOICES OF FAMILY CAREGIVERS

2. First My Mother, Then My Aunt: A Caregiver's Diary of Alzheimer's Disease
Carol Ann Young

3. A Crisis of Caregiving, a Crisis of Faith
Rabbi Gerald I. Wolpe

4. Learning to Be a Caregiver, Trying to Be a Brother
Timothy J. Sweeney

5. Pushing the Boundaries in Assisted Living: Failures in Caring
Robert L. Kane and Joan C. West

6. Family Caregiving: Both Sides Now
Jane Bendetsen

7. Bringing Up Alex: A Parent Becomes an Advocate
Kathryn Cooper Corley

8. The Courage of Caring
Gladys González-Ramos

9. The Loneliness of the Long-Term Care Giver
Carol Levine

Part II. THE IMPACT OF CAREGIVING

10. From Sadness to Pride: Seven Common Emotional Experiences of Caregiving
Barry J. Jacobs

11. Caregiving and the Workplace
Gail Gibson Hunt

12. The Financial Impact of Caregiving
Donna L. Wagner

13. Social Workers, the Health Care Team, and Caregiver Advocacy
Terry Altilio and Raymond L. Rigoglioso

14. The Trouble with Families: Toward an Ethic of Accommodation
Carol Levine and Connie Zuckerman

15. 'Til Death Do Us Part: Family Caregiving at the End of Life
Connie Zuckerman

Part III. RESPONDING TO CAREGIVERS' NEEDS

16. Caregiving on the Public Policy Agenda
Lynn Friss Feinberg

17. The Visiting Doctors Program: Bringing Care Home
Shoshanna Korn-Meyer, Lili Toborg, and Jeremy Boal

18. Windows to the Heart: A Family-Centered Hospital Unit for Dementia Patients
Jeffrey N. Nichols

19. Connecting Caregivers through Technology
Andrea Y. Hart

Part IV. RESOURCES

20. On the Quest for Resources: A Guide for Caregivers and Professionals
Alexis Kuerbis

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