Always on Call: When Illness Turns Families into Caregivers / Edition 2

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"First published in 2000 and now substantially updated, Always on Call provides 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." 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.

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: 9780826514615
  • Publisher: Vanderbilt University Press (TN)
  • Publication date: 11/28/2004
  • Series: A United Hospital Fund Book Ser.
  • Edition description: Updated and Expanded Edition
  • Edition number: 2
  • Pages: 296
  • Product dimensions: 6.00 (w) x 9.04 (h) x 0.80 (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

1 Introduction : the many worlds of family caregivers 1
2 First my mother, then my aunt : a caregiver's diary of Alzheimer's disease 23
3 A crisis of caregiving, a crisis of faith 34
4 Learning to be a caregiver, trying to be a brother 45
5 Pushing the boundaries in assisted living : failures in caring 54
6 Family caregiving : both sides now 66
7 Bringing up Alex : a parent becomes an advocate 77
8 The courage of caring 87
9 The loneliness of the long-term caregiver 99
10 From sadness to pride : seven common emotional experiences of caregiving 111
11 Caregiving and the workplace 126
12 The financial impact of caregiving 136
13 Social workers, the health care team, and caregiver advocacy 149
14 The trouble with families : toward an ethic of accommodation 166
15 'Til death do us part : family caregiving at the end of life 176
16 Caregiving on the public policy agenda 193
17 The visiting doctors program : bringing care home 208
18 Windows to the heart : a family-centered hospital unit for dementia patients 221
19 Connecting caregivers through technology 235
20 On the quest for resources : a guide for caregivers and professionals 253
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