Table of Contents

Acknowledgments Prologue 1. The Precarious Situation of the 1950s Woman 2. Athlete to Cane: The Elusive Search for a Disease 3. The Reluctant Long-Distance Caregiver 4. Coping with Blindness 5. From Crisis to Crisis 6. The Bottom Falls Out 7. From Bad to Worse: Rehabilitation to Debilitation 8. Through the Looking Glass 9. A Place in Pennsylvania 10. Navigating Our Way Home 11. Reports of Her Death Are Greatly Exaggerated 12. A Good Enough Place 13. A Nursing Home Daughter 14. Peeling the Onion: A Glimpse into Long-Term CareProvider Ownership 15. Conclusion: The Future of Long-Term Care Notes Bibliography

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.

Reviews

"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