Unexpected Journey of Caring

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 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.

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.