Elder Care Journey: A View from the Front Lines

by Laura Katz Olson

Overview

Winner of a Gold Medal, 2017 Living Now Book Award in the Caregiving category

Shortlisted for the 2016 Sarton Women's Book Awards in the Memoir category presented by the Story Circle Network

For millions of Americans caregiving is the "new normal." For Laura Katz Olson, a respected researcher of long-term care for the aging, Elder Care Journey chronicles the disruption of her world and how it is upended by the ever-increasing long-distance needs of her own mother.

A healthy, Senior Olympics medal winner, Olson's mother is slowly and steadily incapacitated by Parkinson's disease and a gradual loss of vision. Thrust into a long-distance caregiving role, Olson finds her previous academic notions about assisting a frail parent increasingly at odds with the reality of the lived experience. In a narrative full of "ah-ha!" moments, tears, sighs, and outrage that will be familiar to many, Olson opens a window into the nursing home and home care industries that consume much in the way of taxpayer dollars, but often fail to deliver quality care. Olson's personal story vividly demonstrates not only the overwhelming bureaucratic barriers faced by care-dependent seniors but also their beleaguered adult children's attempts to ensure their parents' health, safety, and well-being.

Product Details

ISBN-13:	9781438460734
Publisher:	State University of New York Press
Publication date:	06/01/2016
Series:	Excelsior Editions
Pages:	228
Product dimensions:	6.40(w) x 9.40(h) x 0.80(d)

About the Author

Laura Katz Olson is Professor of Political Science at Lehigh University and the author and editor of many books, including The Politics of Medicaid and The Not-So-Golden Years: Caregiving, the Frail Elderly, and the Long-Term Care Establishment. She lives in Wind Gap, Pennsylvania.

Table of Contents

Acknowledgments ix

Prologue xiii

1 The Precarious Situation of the 1950s Woman 1

2 Athlete to Cane: The Elusive Search for a Disease 9

3 The Reluctant Long-Distance Caregiver 17

4 Coping with Blindness 29

5 From Crisis to Crisis 41

6 The Bottom Falls Out 59

7 From Bad to Worse: Rehabilitation to Debilitation 73

8 Through the Looking Glass 87

9 A Place in Pennsylvania 95

10 Navigating Our Way Home 103

11 Reports of Her Death Are Greatly Exaggerated 117

12 A Good Enough Place 125

13 A Nursing Home Daughter 139

14 Peeling the Onion: A Glimpse into Long-Term Care Provider Ownership 149

15 Conclusion: The Future of Long-Term Care 167

Notes 175

Bibliography 197

Editorial Reviews

"…an engrossing tale that is by turns poignant and enraging … The book is a searing indictment of the elder care system in the United States, particularly the spread of the market model and the dominance of for-profit providers in recent decades. It is a must-read for policy makers, scholars, and the public, as nearly all of us will confront this deeply flawed system at some point in our lives." — Journal of Aging & Social Policy

"In carefully relaying both the tasks involved and the emotional turmoil that ensues, Olson provides a wonderful teaching volume for the preparation of scholars, policy-makers, and practitioners of all disciplines, especially those who may be decades away from their own caregiving journey or individuals with little experience living with limited income. This well-crafted story contains many opportunities to explore further the social, political, and economic factors that have shaped the separate silos of care and support—financial, medical, residential, and so on—and also created the exhausting and difficult path for the caregivers who are the backbone of elder care." — The Gerontologist

"After losing two siblings, Laura Katz Olson is left singularly responsible for her physically active and lively mother, Dorothy, a thousand miles away, both young at heart and eagerly bicycling everywhere, but increasingly limited by the normal process of aging. Being an expert on aging and health care, Olson is at first confident as she tries to let her mother 'age in place.' More than anyone, she believes, she should know what to do. Shuttling between Florida and Pennsylvania, Olson settles into a crushing routine, and with each visit she finds incremental downward change in her mother's health. Pulled by daughterly guilt at times, but also a wellspring of love, Olson is frank about the resentment she sometimes experiences.

"With a unique perspective that links the systemic flaws in our policy approach to elder care to real-world experience, Olson exposes the challenges we all face or are likely to face. More than a personal story, but nevertheless an extremely compelling one, the book should be read by those confounded and frustrated, and by those without direct knowledge of what quietly repeats itself millions of times a day." — Miriam Laugesen, Department of Health Policy and Management, Columbia University

"In Elder Care Journey, Laura Olson tells the riveting story of helping her aging, disabled mother navigate the system of long-term services and supports. A renowned scholar of aging and long-term care policy, Dr. Olson was nevertheless unprepared for the daily frustrations involved in confronting a bewildering array of obstacles, deceptions, burdensome and repetitive procedures and paperwork, and catch-22s, ranging from the annoying to the downright dangerous. She shows how well-intentioned policies can fall far short of meeting people's needs, especially for those in greatest need, in a system based on fragmented interests and private-sector profit maximization. Combining scholarly expertise with personal experience, she ends the book with a detailed but highly accessible analysis of the long-term care system and how it could be improved to the benefit of both taxpayers and beneficiaries. This book is a compelling read for policymakers and for students and scholars of health care and social welfare policy, highly recommended for undergraduate and graduate courses. The author's experiences also provide helpful advice to caregivers on what to expect and how to deal with it, as well as reassurance that they are not alone." — Christine L. Day, University of New Orleans

"If a society is judged by how well it treats its most vulnerable members, Laura Katz Olson, a prominent health policy scholar, demonstrates that we have a long way to go in how we serve frail and disabled elders in need of long-term services and supports at the end of their lives. Olson develops a compelling narrative that describes the subtle and not-so-subtle indignities imposed on elders and their caregivers navigating the complex maze of health and social service systems at their hour of greatest need. Even an expert such as Olson struggled in light of the challenges posed by these impediments.

"By connecting her own personal journey to the larger societal challenges within which her struggles are embedded, Olson makes a significant contribution to the literature that should be required reading for scholars, practitioners, and policymakers looking to advance the welfare of the nation's most vulnerable citizens." — Edward Alan Miller, author of Block Granting Medicaid: A Model for 21st Century Medicaid Reform?

"This page-turner is at once a tender tale of a daughter's devotion and a stinging indictment of the hugely complex and wholly inadequate American long-term care system. That an elder-care expert can barely navigate the Byzantine web of public and private insurance and services for her disabled mother is alarming enough. Truly horrific are the system's shortcomings and the increasing role that for-profit providers play, fleecing and even abusing their customers. A startling wake-up call." — Andrea Louise Campbell, author of Trapped in America's Safety Net: One Family's Struggle

From the Publisher