Family Caregiving from the Inside

Abstract

Black, K. In the Shadow of Polio: A Personal and Social History. 1996. Reading, MA: Addison-Wesley. 307 pps. ISBN 0-201-40739-6. Hardcover. 23.00 USD. Cohen, M. D. Dirty Details: The Days and Nights of A Well Spouse. 1996. Philadelphia: Temple University Press. 167 pps. ISBN 1-56639-426-0. Paper. Shanks, L. K. Your Name Is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's. 1996. Lincoln: University of Nebraska Press. 191 pps. ISBN 0-8032-4245-X. Hardcover. 22.50 USD. These three books were written by the well family members of individuals who were suffering from a chronic illness, and focus on the issues of illness, family, and caregiving. They tell the struggles of family life when a member is severely and chronically ill. Each book was authored by a skilled writer who uses the genre of personal narrative to both convey information about her experience of providing care to a family member in the home and to process her feelings about losing a loved one. Each book succeeds in making the caregiving experience come alive by personalizing the experiences of families coping with chronic and debilitating illness. Although the individual and his/her illness was the impetus for all three books, the stories center more around the effects of the illness on those who love and care for the afflicted individual. As such, events which parallel findings from aging and family caregiving research are vividly detailed in the stories of these families. Also, the books speak loudly to what is not addressed in social science research concerning around-the-clock family care. The three books are organized similarly in that each author weaves the story of family care into the life story of the family. The books also each contain a section of family photographs visually illustrating the family before and during the illness experience. The three stories differ in many respects (e.g., period of life in which illness experience occurred and author's relationship to the ill family member), yet similar themes emerge from their stories. The most prominent theme across the three books is that much of the care of an ill family member falls to a single inividual. Two of the books are written by such individuals and describe the paucity of information available to guide them in effectively providing the level and extent of care necessary to sustain their family member at home. Another common theme is the importance of establishing contacts and relationships with others confronting the same problem. A third theme is the acceptance of and appreciation for the abilities and contributions of the ill member despite the illness or disability. Your Name is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's by Lela Knox Shanks, and Dirty Details: The Days and Nights of a Well Spouse by Marion Deutsche Cohen explore the trials and triumphs of being in the role of primary caregiver to an impaired spouse. The situations described differ in important ways, however. Shanks relates the experiences of an older adult wife caring for a husband with diminished cognitive capacity due to Alzheimer's disease (AD) while Cohen details the provision of care by a middle-aged wife to a physically impaired husband suffering from multiple sclerosis. Despite these contextual differences, the experiences of the spouse caregivers are quite confluent. The extension of the impact of illness on family members beyond the ill person and primary caregiver is illustrated in the third book, In the Shadow of Polio: A Personal and Social History by Kathryn Black. Black describes her experiences as a child whose mother suffered from and eventually died with poliomyelitis. She offers both a personal and social history of the siege of American families by the fear of contracting the polio virus. Her story provides a detailed account of this era of American health and medicine. Although the experiences Black shares differ in many ways from those of Shanks and Cohen, the questions she raises regarding societal expectations for American families to provide enormous levels of support to ill family members resound here as well. …