Always on Call: When Illness Turns Families into Caregivers
This powerful book 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.
From the Publisher
Twenty-five million men and women in the United States provide essential care to family members who are sick. The economic value of their work (the amount they would earn if treated as employees) is $196 billion. But since they are loved ones, these caregivers, who are often required to provide high-tech assistance or perform the same tasks as professional nurses or physical therapists, not only receive no pay for their work, but little respect, training, or support.
Why the demands on family caregivers are growing and how the health care system could better meet their needs are the focus of the United Hospital Fund's new book, Always on Call. Edited by Carol Levine, Always on Call illuminates the broad spectrum of family caregiving and challenges the health care and social service community to support family caregivers in substantive ways.
Carol Levine has a unique perspective for evaluating and critiquing the health care system. Not only is she currently the director of the United Hospital Fund's Families and Health Care Project, but she has been a family caregiver for her husband for the past ten years, ever since he was seriously injured in a car accident. When her husband was discharged from the hospital, she was left to not only pay for essential home care services for her husband, but also provide vital services herself.
Always on Call combines personal stories that reveal the way caregiving is experienced, with professional insight, in order to show how these problems can and should be addressed. The final section, a resource guide, provides caregivers with a wealth of information unavailable elsewhere.
Families and health care have both changed dramatically in the past century. Prior to the 20th century and the prevalent use of antibiotics, most people who suffered serious illness either recovered fully or died. As a result of medical advances, better nutrition, and safer jobs, there are now three times as many Americans aged 65 or older as there were in 1900 and 33 times as many people 85 years or older. Families, too, have changed: there are more women in the workplace, and families are more diverse and less likely to include multiple generations (and the support they can bring).
The prevalence of chronic rather than acute illness and trends toward shorter hospital stays, increased outpatient care, and limited insurance benefits for in-home care all leave family caregiving as the only option for many Americans.
Whether they are enthusiastic volunteers or pressured by guilt or crisis, family caregivers suffer enormous burdens, both personal and financial. Many are virtually tethered to patients who require hourly medication and need help using the bathroom and other constant care. Caregivers must sacrifice personal interests, social activities, and paid work. In addition to the financial strain caused by lost income, they incur out-of-pocket expenses not covered by insurance.
Long-term care is covered neither by most insurance plans nor by Medicare. Medicaid does offer some long-term care alternatives, but only to those below the poverty line. Always on Call demands a policy change-a revision in our health care policies to provide long-term care services to middle- and working-class patients. Levine and her co-authors also demand that, for those who choose to or have no alternative but to provide care themselves, the health care community offer training, advocacy, and emotional support to family caregivers-including improved discharge planning, negotiating with insurance companies, and ongoing education and technical assistance. For family caregivers, health care professionals, administrators, policy makers, and advocates, Always on Call offers support, resources, and concrete suggestions for building partnerships and fostering improvement in our health care system.
About the Author
Carol Levine is the director of the United Hospital Fund's Families and Health Care Project. She also directs The Orphan Project: Families and Children in the HIV Epidemic, which she founded in 1991. She was director of the Citizens Commission on AIDS in New York City from 1987 to 1991. 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. She lives in New York City and serves as caregiver to her husband.
Publisher's Weekly, July 17, 2000
In bold and compassionate essays, caregivers and activists [offer] resources for caregivers and practical ideas for momentous change.