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Donna Thomson (The Caregivers’ Living Room) and I are excited to announce that our book, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver,is now available.

Order Your Copy Now!

A short film, produced by North of Now Productions, was recently made based on our book. Watch the film here:

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 clichés 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.

Another short film, produced by North of Now Productions, was recently based on why so caregivers use the label “caregiver.”  This is the subject of our book’s first chapter, “I’m (Not) a Caregiver.”

Here are early reviews of our book:

“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 authentically prepares caregivers for the quest of normalcy and life balance while addressing a myriad of challenges …  Directions for building community sharing provide meaning, hope, and promise to successfully navigate the often invisible lives of caregivers.”

—Choice

“ … (G)entle guidance to help readers who are becoming caregivers … 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 … Any caregiver will find an abundance of assistance here.”—Publishers Weekly

“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

“… 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…”—Jan Willem Gorter, Director of CanChild Research Center, McMaster University

“ … 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® 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

“…  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