Reprinted with permission of Oncology Nursing Society
Poignant Moments: A Caregiver’s Perspective. John Francis Wissler. North Charleston, SC: BookSurge Publishing, 2005, 332 pages, $19.95.
Poignant Moments captures the story of the joint struggles of a patient with end-stage renal disease (ESRD) and her family caregiver. The trajectory tracks early disease and culminates at the end of life. The purpose of the book is to share the chronic care experience with descriptions of the horror, fear, uncertainty, and real anger so often experienced by family caregivers.
The foreword was written by an individual with renal failure. The text begins with a description of the last 24 hours of life and discusses a history of ESRD and Medicare. An epilogue, glossary, and references also are included. The remainder of the book is divided into three sections and 19 chapters.
The author describes his experience as a caregiver for his wife during her long trajectory (1990–2002). He discusses care ambiguities, uncertainties, many complications, ethical dilemmas, medical conspiracies of mixed communication, and misrepresentations of information from healthcare providers. The journey is filled with periods of complexity and dilemmas dealing with the regulation for healthcare coverage and eligibility to receive a renal transplant.
The book poignantly describes the experience of the patient and caregiver. The author takes readers through the complexities of care with very vivid detail and conversation.
Poignant Moments contains an extensive discussion of the journey, beginning with kidney stones through changes of physicians, numerous medical setbacks, dialysis, preparation for kidney transplants, amputations, and death. Each is told with careful dialogue between the patient and family caregiver.
Caregivers’ emotional highs and lows are presented effectively. Each chapter is filled with examples from patients and their family members experiencing longitudinal chronic care. Direct quotations add to the richness of the descriptions. Comments from the author, facts about the disease, healthcare regulations, and dilemmas are interspersed with the dialogue.
One limitation of the book might be the amount of technical language that is used. Many lay caregivers and readers would have difficulty with the technical language, even though a glossary is provided. Perhaps a summary of helpful strategies could be included for family caregivers. A specific list of resources also might be useful.
Poignant Moments is a narrative with strong descriptions and quotations that make the accounts seem alive and truly poignant, which is consistent with the title. The intended audience should be family caregivers throughout the United States who need to know that they do not struggle alone. However, the book’s audience also should include physicians, nurses, and other healthcare providers and policy makers so that they see how families struggle with chronic care and family caregiving. Very detailed descriptions of emotions, reactions, and feelings are captured in this account of being a caregiver.”
Barbara Given, PhD, RN, FAAN
University Distinguished Professor
Michigan State University
East Lansing, M