Living in the Land of Limbo: Fiction and Poetry about Family Caregiving

Resources

273 Resources The following is a selected list of resources in two main categories, medical humanities and family caregiving. Each item has references and links to other resources. Medical Humanities Websites www.narrativemedicine.org The website of the Program in Narrative Medicine at the College of Physicians and Surgeons at Columbia University, directed by Rita Charon, MD, has extensive resources in this growing field.There are bibliographies, links to other university programs, specialized sites, and other resources. litmed.med.nyu.edu The New York University Medical School’s database in medical humanities has annotated references to art, literature, and performing arts. It is frequently updated. www.narrativemedicinenetwork.org The International Network of Narrative Medicine is a joint effort of King’s College, London, and the Program in Narrative Medicine, Columbia University. Books Nell Casey, An Uncertain Inheritance: Writers on Caring for Family (New York: Morrow, 2007). Rita Charon, Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press, 2008). Arthur Frank, The Wounded Storyteller: Body, Illness, and Ethics, 2nd edition (Chicago: University of Chicago Press, 2013). Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition (New York: Basic Books, 1989). Suzanne Poirier and Lioness Ayres, eds. Stories of Family Caregivers: Reconsiderations of Theory, Literature, and Life (Indianapolis: Center Nursing Publishing , 2002). 274 Fiction and Poetry about Family Caregiving Family Caregiving Websites www.aarp.org/home-family/caregiving The AARP Caregiving Resource Center has information about AARP programs, blogs, columns by experts, and other information. www.alz.org The Alzheimer’s Association website is a major resource for family caregivers for people with Alzheimer’s and other dementias. It has research reports, support for family caregivers, guides to local chapters, and other resources. www.caregiver.org Family Caregiver Alliance’s website has a wide range of materials, including research reports, caregiving information and advice, policy briefs, and other features. www.medicare.gov/campaigns/caregiver/caregiver.html The Medicare website has information about benefits and other government resources. www.nextstepincare.org The United Hospital Fund’s Next Step in Care website has an extensive list of easy-to-use guides for family caregivers navigating transitions in health care settings.The guides are free and available in English, Spanish, Chinese, and Russian.There are also guides for health care providers working with family caregivers.The Links and Resources section suggests federal, state, and local resources for further information, as well as links to disease organizations. newoldage.blogs.nytimes.com The New York Times New Old Age blog has timely posts by Paula Span, Judith Graham, and others on topics related to family caregiving including financial matters, relationships, practical tips, and many other subjects. www.wellspouse.org The Well Spouse Association website has stories from well spouses, event announcements, and other information for this group of caregivers. Books American Red Cross, Family Caregiving (Yardley, PA: StayWell, 2007). A book in the American Red Cross Safety series, this spiral-bound book has practical directions for taking care of a sick or disabled person at home.There is an accompanying DVD. Jane Gross, A Bittersweet Season: Caring for Our Aging Parents—and Ourselves (New York: Knopf, 2011). Part memoir, part guide through the world of hospitals, nursing homes, and finances, written by a former New York Times reporter. Resources 275 Barry Jacobs, The Emotional Survival Guide for Caregivers: Looking after Yourself and Your Family While Helping an Aging Parent (New York: Guilford Press, 2006). Written by a clinical psychologist, this book has useful advice on coping with the emotional strain of caregiving. Carol Levine, ed., Always On Call: When Illness Turns Families into Caregivers, 2nd edition (Nashville: Vanderbilt University Press, 2004). A section with personal narratives is followed by chapters on employment , public policy, the emotional impact of caregiving, and other topics. Nancy L. Mace and Peter V. Rabins, The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life, 4th edition (Baltimore: Johns Hopkins University Press, 2006). This classic guide was revised in 2006 for its twenty-fifth anniversary. Gail Sheehy, Passages in Caregiving: Turning Chaos into Confidence (New York: William Morrow, 2010). Sheehy, a well-known writer, describes her experiences over the many years she cared for her husband who had cancer. Paula Span, When the Time Comes: Families with Aging Parents Share Their Struggles and Solutions (New York: Springboard Press, 2009). Span is a journalist...