Extreme Caregiving

Parents who care for children with special needs, particularly those whose children have multiple disabilities or intellectual delays, are pioneers in home health care and caregiving, yet their experience and expertise are rarely recognized. This book collects parent narratives, personal experience, and academic research to portray the lives of parent caregivers, looking at both the trials and the triumphs inherent in raising a child with special needs. Parents raising children with special needs often must devote all of their resources, both tangible and spiritual, to providing care long into their offspring's lives. Their experience exceeds the usual parameters of parenting. This book examines all of the facets of their parenting role, the care they provide, challenges they face, and questions many assumptions. It presents parents as neither emotional wrecks nor overburdened saints, but as moral individuals struggling to find their own waythrough relatively unexplored territory. This book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a virtue ethic framework isolates the various tasks involved, and evaluates the moral demands placed on the parent attempting to perform them. On their journey to provide for their child the best life possible, parents must alter their own lives and attitudes, and become the sort of person who can perform the necessary caregiving. Raising a child with special needs demands from the parent a reassessment of their personal and social lives. Some of the consequences, such as the presumed emotional and physical burden of constant attentiveness and the numerous unexpected responsibilities, have been reported previously. But the need for competence, which drives an acquisition of medical knowledge, has not previously been analyzed, nor has there been recognition of the enormous moral task of encouraging identity formation in achild with intellectual delays or disabilities. For a child who cannot attain independence, parents must continue to provide care and support into an uncertain future.

Sympathetic, thoughtful, and often moving, without judgment, doctor talk, or romanticizing cliches, this book illuminates a role so under-acknowledged by medical providers, so taken for granted by society at large, it has long been rendered almost invisible. By weaving together candid accounts from recent memoirs, thorny issues raised in her work as a pediatrician, and memories, rich in emotion and meaning, of family experiences with her own brother, Lisa Freitag makes us care, at long last, about those thrust into lives they never expected and who might well struggle to succeed. Look over here, this work of much-needed advocacy says. Pay attention to our stories, too., Advances in medical technology have made it possible for doctors to save premature and/or severely disabled babies who would have died in any other century. And yet no one is talking about what this means (practically, emotionally, socially) for the parents of those babies parents who are often called upon to create home ICUs and to devote their lives to what Lisa Freitag calls extreme caregiving. For everyone in the medical profession and for everyone who has wondered what it means to be a parent this book is essential reading., Extreme Caregiving is a foray into the moral hazard imposed by well-meaning clinicians on patients and their families, written by a pediatrician with a rare and singular vision. Generous, compassionate, yet unsparing, Freitag unfolds a humanistic portrayal of special needs children and their families; how they are disappeared in the medical narrative of specialist consultants and the vagaries of social services systems. She delivers this with the clarity and grace of a writer with the uncommon gift of soul and story.

Lisa C. Freitag practiced as a pediatrician for over twenty-five years, before returning to school to pursue an interest in the families of children with special needs. She received a Masters degree in Bioethics from the University of Minnesota Center for Bioethics in 2013. She continues to work in clinical ethics and explore the intersection between medicine and caregiving.