With a foreword by Judy Woodruff, The Unexpected Journey of Caring is a practical guide to finding personal meaning in the 21st century care experience. Personal transformation is usually an experience we actively seek out-not one that hunts us down. Becoming a caregiver is one transformation that comes at us, requiring us to rethink everything we once knew. Everything changes-responsibilities, beliefs, hopes, expectations, and relationships. Caregiving is not just a role reserved for "saints"-eventually, everyone is drafted into the caregiver role. It's not a role people medically train for; it's a new type of relationship initiated by a loved one's need for care. And it's a role that cannot be quarantined to home because it infuses all aspects of our lives. Caregivers today find themselves in need of a crash course in new and unfamiliar skills. They must not only care for a loved one, but also access hidden community resources, collaborate with medical professionals, craft new narratives consistent with the changing nature of their care role, coordinate care with family, seek information and peer support using a variety of digital platforms, and negotiate social support-all while attempting to manage conflicts between work, life, and relationship roles. The moments that mark us in the transition from loved one to caregiver matter because if we don't make sense of how we are being transformed, we risk undervaluing our care experiences, denying our evolving beliefs, becoming trapped by other's misunderstandings, and feeling underappreciated, burned out, and overwhelmed. Informed by original caregiver research and proven advocacy strategies, this book speaks to caregiving as it unfolds, in all of its confusion, chaos, and messiness. Readers won't find well-intentioned cliches or care stereotypes in this book. There are no promises to help caregivers return to a life they knew before caregiving. No, this book greets caregivers where they are in their journey-new or chronic-not where others expect (or want) them to be.
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 (www.donnathomson.com). 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" (www.unpreparedcaregiver.com), his original writing voice mixes first-hand experiences, communication expertise, and cultural analysis featuring a care-centered point of view.
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
Caregivers often sacrifice their own health and relationships to take care of loved ones, which is a big problem in the United States, where nearly 45 million Americans provide unpaid care to an adult or child with medical problems or chronic conditions. The authors, caregiving bloggers, recommend online forums and Facebook groups as wonderful sources of support at 3 a.m., and note that libraries offer book groups, talks, and film screenings. They authors share their own stories: one quit her job and left her husband and daughter to move in with her mom, who had early-onset Alzheimer's. Another found her son's care needs increase after his severe cerebral palsy caused his right hip to dislocate. This guide is best when it provides statistics (10,000 Americans turn 65 every day, and 70 percent of them will need long-term care for an average of three years) and advice (what tasks could someone else do?). PBS NewsHour anchor Judy Woodruff, whose older son needs help with "almost all activities of daily living," provides a foreword recognizing the nation's "silent army" of caregivers. * Booklist * The book describes the inherent challenges impacting caregivers. The chapters are organized into two phases. The first phase focuses on how caregiver life expectations are reshaped and remolded through initial disorientation and role change. The second phase provides an algorithm for reorientation and advocacy. Thomson and White provide a realistic, well-described process of the caregiving journey. They address repatterned thinking that develops, as unraveling threads of past expectations for the future become contrasted against present reality. The authors address the trespass of societal and cultural boundaries with the need for human understanding. The book authentically prepares caregivers for the quest of normalcy and life balance while addressing a myriad of challenges, including painful isolation, emotional exhaustion, and unyielding toxic stress. Personal narratives engage the reader, demonstrating the way in which caregiving misdirects assumptions for the future by fastening caregivers to their present reality. The latter chapters focus on empowerment, adaptation strategies, and strength-building autonomy to leverage against caregiver challenges. Directions for building community sharing provide meaning, hope, and promise to successfully navigate the often invisible lives of caregivers. * Choice * Speaker and consultant Thomson. . . and White, associate professor at Queens University in Charlotte, N.C., provide gentle guidance to help readers who are becoming caregivers in this instructive guide. The authors write honestly about the feelings of loss during this transition, including grief over a future that will not happen. They explore the feeling of disorientation during the initial months of caregiving while recognizing how the caregiver's relationships with one's own family and friends can be affected, manifesting commonly in intolerance or disappointment. In their "A New Way of Seeing and Being" that concludes each chapter, they ask readers to optimistically reframe the hardships of caregiving by emphasizing that "our responsibilities and connections highlight how we are rooted and grounded with others." The book includes a variety of practical and tangible actions for the caregiver, including resources and advice on how to navigate both real-life and online support systems, strategies for getting help from one's social network, and advice for contacting medical professionals. Specific tools such as the ABCD (Asset Based Community Development) approach and Atlas CareMaps (as well as specific libraries and community centers) are also included. Any caregiver will find an abundance of assistance here. * Publishers Weekly * Informed by original caregiver research and proven advocacy strategies, this book speaks to caregiving as it unfolds, in all of its confusion, chaos, and messiness. Readers won't find well-intentioned cliches or care stereotypes in this book. There are no promises to help caregivers return to a life they knew before caregiving. No, this book greets caregivers where they are in their journey-new or chronic-not where others expect (or want) them to be. * Well Spouse Association * This book should be read by not only caregivers but also health professionals and leaders . . . [Thomson and White provide] a personal and authentic picture of not only the caregiver experience but also the complexity of caregiving today. * Healthcare Quarterly * . . . inspirational, helpful and very relatable. . . . a hyper-honest look at what it's like to be a caregiver, whether for a child, a spouse or a family member, with invaluable reassurances and resources. * Love That Max * 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 www.caregiving.com and the National Caregiving Conference Donna Thomson and Zachary Taylor have produced a powerful and poignant work on caregiving. Caregivers who read this book will find comforting words, welcome affirmation, and profound insights into their experiences. The Unexpected Journey of Caring: The Transformation from Loved one to Caregiver is most remarkable because it is not only practical but also philosophical: it represents a definitive guide to understanding the phenomenon of caregiving within the context of human relations. -- Dr. Aaron Blight, Founder, Caregiving Kinetics
