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The Unexpected Journey of Caring


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Table of Contents

Foreword by Judy Woodruff Introduction Chapter 1: I'm (Not) a Caregiver Disorientation: From Loved One to Caregiver Chapter 2: Living In-Between Scripts (Transformational Moment #1) Chapter 3: A Hyper-Intolerance of Others (Transformational Moment #2) Chapter 4: Audience Betrayal (Transformational Moment #3) Chapter 5: Who am I Becoming and Why am I So Hard on Myself? (Transformational Moment #4) Chapter 6: When "Getting Through" isn't Good Enough (Transformational Moment #5) Re-orientation and Advocacy Chapter 7: Making Meaning That Matters Now Chapter 8: Begin With the Basics: What Is My Role at Home, What Do I WANT It to Be? Chapter 9: You Are Not Alone, But Who Are the People in Your Neighborhood? Chapter 10: Navigating the Rough Waters of Transition Chapter 11: Not a Social Network, But a Care Network Chapter 12: How to Know What You Want and Get What You Need Chapter 13: Power and Love = Empowerment Chapter 14: Cultivating Connection Conclusion: A New Way of Seeing and Being

About the Author

Donna Thomson is the author of The Four Walls of My Freedom: Lessons I've Learned From a Life of Caregiving. She is a consultant and speaker on issues relating to family caregiving, disability and aging. Donna is a patient and family advisor on health research and policy and she teaches family caregivers in Canada how to advocate for care in hospital and in the community. She blogs regularly at THE CAREGIVERS' LIVING ROOM ( Zachary White, PhD, is an award winning university professor who teaches undergraduate and graduate courses addressing topics such as provider-patient communication, caregiver communication, the patient experience, health and illness narratives, digital health literacy, social support and disclosure, and sense making amidst life transitions. As the founder of the caregiver blog and resource "The Unprepared Caregiver" (, his original writing voice mixes first-hand experiences, communication expertise, and cultural analysis featuring a care-centered point of view.


Nobody grows up planning to be a caregiver, but many of us will become one and sometimes when we least expect it. Donna Thomson and Zachary White bring powerful insights to help us understand what it means to be a caregiver and how to truly support those of us who will travel this unexpected journey. -- Samir K. Sinha, Director of Geriatrics, Sinai Health System and University Health Network, Toronto and Health Policy Research Director, National Institute on Ageing (Canada)
One is never prepared to be a caregiver for a terminally ill spouse. The physical and emotional consequences of the role are devastating. Thomson and White expertly describe the effects of being a caregiver, including effects one might not be aware of, and the transformation that takes place in our lives because of our caregiving role. -- Pamela D. Larsen, PhD, RN, University of Wyoming, editor of Lubkins Chronic Illness: Impact and Intervention (10th Edition)
This is much more than a story about caregiving for a child with a disability. In The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver, Donna Thomson and Zachary White remind us that living as a caregiver is a state of both being and becoming. This book made me think about the importance of providing opportunities for parents of children with disability to share their experiences with caregiving, and to understand what it means for them to be a caregiver. We learn to ask what caregivers need on their journey becoming a complete person. Through this powerful book I hope we dare to have true conversations between caring families and health professionals. After all, caring for caregivers is as much about us (health professionals) as about them (caregiving parents)! To the journey! -- Jan Willem Gorter, Director of CanChild Research Center, McMaster University
Recognizing that each caregiving situation is unique, Zachary White and Donna Thomson bring readers into that life. Common threads bind all caregivers regardless of the illness or relationship to our beloved care recipients. They describe the inexorable transformation into "caregiver" in a story EVERYONE should read. This book details the psyche of caregiving - how it can change you forever; as well as the physical and daily duties of such 'work' in easily understood terms. Best of all, it gives caregivers ideas on navigating the inevitable roadblocks and surviving this under-recognized segment of American society - 45 million family caregiving heroes! -- Lawrence Bocchiere, President Emeritus/COB, The Well Spouse (R) Association
Everyone who spends months and years caring for someone who isn't getting better will find that Donna Thomson and Zachary White have given voice to their inner feelings and thoughts. They will find comfort and counsel in the authors' wise observations. -- Rajiv Mehta, Founder and CEO of Atlas Caregiving
There are many entry points into a good life for ourselves and those we love. That said, if someone offers you a road map to their version of your worthy end, you ought to be very wary. In this most refreshing and authentic book, no road maps are prescribed. Instead a compass is offered, lovingly brought together from Donna Thomson's lived experience as a mother, carer and advocate and Zachary White's experience as an authentic and reflective civic practitioner. Every page is embossed with hard won nuggets of wisdom from each of their domains and the interface between their experiences. If you are searching for genuine companions on the journey towards the Good Life, look no further. -- Cormac Russell, Faculty ABCD Institute, Director of Asset-based Community Development in Europe
Finally! A totally honest assessment of the caregiving experience. Not just another workbook, disease specific account or "how to" book (though there are many helpful guidelines), but a no-nonsense look at the ongoing reality and challenges of how the caregiving experience changes your life. Fear, anger, the unknown-normalcy-are dealt with in a direct, caring and expert manner. Whether you are a "newbie" or a long-term caregiver, this book illustrates all we have in common and gives us guidelines to cope wherever we are in our journey. -- Adrienne Gruberg, Founder and President, The Caregiver Space
The Unexpected Journey of Caring provides insights into the mind and heart of the family caregiver. After reading this book you'll better understand the caregiving emotions and thoughts which can feel so confusing and lead to so much guilt! Thomson and White share the very good reasons why you feel as you do. They also offer solutions and tools you can use to feel better because you can. If you're a health care professional, this book will equip you to better understand and help those family caregivers you encounter every day. -- Denise M. Brown, founder of and the National Caregiving Conference

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