The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver

by Donna Thomson, Zachary White

This book is written for caregivers of all kinds, whether they are preparing to care, are caring now, or are seeking to understand the meaning of a care experience after the death of a loved one. Within the last year, 28 percent of Canadians provided informal, unpaid care to a chronically ill or disabled loved one. Approximately 43 million caregivers in America have provided informal care to an adult or child. 34 million Americans have provided informal care to an adult over the age of 50. Nearly 40 million caregivers provide care to adults with an illness or disability. And 16 million people care for someone with dementia or Alzheimer's disease. Simply put, by 2020, 117 million Americans are expected to need informal care (Portrait of Caregivers, 2012; Family Caregiver Alliance, 2015). Friends and family who want to offer assistance to a caregiver will also learn how to offer help that is meaningful and impactful to another's experiences. Personal transformation is usually an experience we actively seek out--not one that hunts us down. In the 21st century, becoming a caregiver is one transformation that comes at us, requiring us to rethink everything we once knew. When a loved one becomes a caregiver, everything changes--responsibilities, beliefs, hopes, expectations, and relationships. 'Being' a caregiver is not something most people think about, dream about, let alone prepare for because this role and relationship seemingly defies understanding. 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. 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 burned out by constantly feeling underappreciated and overwhelmed. Unwittingly, we become ineffective advocates for our loved ones and ourselves. Caregivers today find themselves in need of a crash course replete with 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 care roles. This learning curve pushes steeply upward just as caregivers must orient to a new role requiring an ongoing re-evaluation of everything once believed to be known and secure. Our book, From Loved One to Caregiver: Transformational Moments and Skills Every Caregiver Needs draws upon lived care experiences and research drawn from hundreds of interviews with caregivers and practitioners. Informed by original academic caregiver research and proven advocacy strategies addressing the full range of care experiences and contexts, this book speaks to caregiving as it unfolds, in all of its confusion, chaos and messiness. Readers won't find well-intentioned clich�s 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. This book is designed to help readers diagnose the complicated and changing care realities that are transforming them while also highlighting how their care role and relationships makes possible new ways of seeing and being. In the process, readers are invited to begin actively reclaiming and remaking how they think of themselves, their care situation, and their capacities so caregiving isn't just something that happens to them, but a life-altering role and relationship that calls them to actively leverage their experiences to more fully enhance individual and familial wellbeing.

Genres: Nonfiction

256 pages, Hardcover

Published June 5, 2019

About the author

Donna Thomson is a caregiver, author and award-winning educator. She is the mother of two grown children, one who has severe cerebral palsy and medical complexity. Donna also helped care for her mother who lived with dementia until she passed away in the summer of 2018 at the age of 96. Donna is the co-author (with Dr. Zachary White) of The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver (Rowman & Littlefield, 2019) and author of The Four Walls of My Freedom: Lessons I’ve Learned From a Life of Caregiving (McArthur and Co., 2010 and The House of Anansi Press, 2014). She blogs regularly at The Caregivers’ Living Room. Donna is a co-designer and Co-Director of CanChild Family Engagement in Research Program as well and she facilitates the Caregiving Essentials Course, all at McMaster University. Donna is the past vice-chair of Kids Brain Health Network and currently sits on the advisory board of the Canadian Centre for Caregiving Excellence where she won the inaugural Vickie Cammack Trailblazer Award.

Reviews

[Vicki · Rating 5 out of 5]

Incredibly well-written and thoughtful! The authors capture both the privilege and the difficulty of caring for a loved one. This book will be extremely helpful both for professional caregivers and others who have found themselves in this position. The chapter on “cultivating connection” inspired me to have an authentic conversation with my parents while being mindful of their dignity. Thanks to the authors for this beautifully written book!

[Sylvia · Rating 5 out of 5]

This is a much needed, comprehensive guide to being a caregiver. It is both practical and emotionally satisfying.

[David B. · Rating 5 out of 5]

Genuine and sincere, The Unexpected Journey of Caring explores the nuances of caregiving in today's world, often drawing from the author's unique, personal experiences. It's the thoughtful articulation of these perspectives that resonate so strongly. White and Thomson bring an authentic perspective on what it means to be a caregiver, doing so with honesty and grace, but not avoiding the poignancy and frustration that often also accompanies one on their journey of caregiving.

[Dorinda · Rating 4 out of 5]

Fortunately no cliches but actual thoughtful and practical discussion of how to apporach the changes in a relationship that becoming the care provider and the care recipient imposes with or iwthout our acknowledgement.

[Anita · Rating 4 out of 5]

Very well written, eye opening

[M.A. · Rating 2 out of 5]

Lots of great information, if a bit too detailed.