Donna Thomson and Dr. Zachary White are the co-authors of The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (Rowman & Littlefield, June/2019). They are delighted to share thoughts and ideas about their new book.
Q: Tell Us About Your Book, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (Rowman & Littlefield, June/2019):
A: Donna and Zachary:
a foreword by PBS News Hour anchor Judy Woodruff, The
Unexpected Journey of Caring is
a practical guide to finding personal meaning in the 21st century
We know from personal experience and from research that caregiving changes everything. 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.
This book greets caregivers where they are in their journey—new or chronic—not where others expect (or want) them to be.
Q: Tell Us About Your Background and Expertise in the Area of Caregiving:
Donna Thomson: I
am the author of The
Four Walls of My Freedom: Lessons I’ve Learned From a Life of
of Anansi Press, 2014).
I’m a consultant and speaker on issues relating to family
caregiving, disability and aging and I’m also a patient and family
advisor on health research and policy. I blog regularly at my
website, THE CAREGIVERS’ LIVING ROOM (www.donnathomson.com).
A: Zachary White, PhD: I am a university professor who teaches undergraduate and graduate courses in communication 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. I have published academic research on the care experience across the care spectrum, from birth to death. I’m also the founder of the caregiver blog and resource “The Unprepared Caregiver” (www.unpreparedcaregiver.com).
Q: How did the book come to be?
A: Donna Thomson:
The funny thing is that Zachary and I have never met in person! But we’ve Skyped so many times over the past couple of years that we consider each other dear friends. Zachary and I began our correspondence as fans of each other’s blogs. We discovered that we shared similar values and ideas about family caregiving, so we began to explore how our respective expertise might combine to develop a podcast workshop. Encouraged by a very positive audience response, we decided to flesh out our ideas in book form.
A: Zachary White:
Through our care experiences, research, and advocacy, we sought out community and understanding with others. As Donna says, we feel like we know one another so well even though we haven’t met in person. But from the very beginning, and in our countless email and Skype conversations, we know we work tremendously well together and our work and perspectives so complement one another as we merge the need to make meaning our of the care experience so we can become better advocates for our loved ones and ourselves.
Q: How did you go about structuring a co-written book?
A: Donna Thomson:
First we had to decide on themes and subject areas. We wanted to make sure that the ‘story’ of caregiving experience made sense. Zachary’s work centers on caregiving identity, while my knowledge is rooted more in practical tools and community assets. In a nutshell, we decided that if we could help caregivers to develop a language to describe their experience, then they could better understand their life story. That life story and the expression of it can be a springboard to becoming proactive in the community in order to ease the burden of care and develop more meaningful relationships with others.
Q: Zachary, what subjects did you write about in the book?
A: We work from the premise that caregivers are experts in their own care experiences. But what we can provide is an explanation as to why caregivers feel, think, and act the way they do because of the dynamics at play in both the caregiver role and relationship. For too many of us caregivers, care is relegated to a ‘private’ experience. In our book, we examined and explore the various transformations caregivers experience, including:
- the challenges of making sense of care experiences
- why caregivers may feel so disconnected from family and friends
- the support limitations of people caregivers know best and expect the most from
- why caregivers often feel that they lose parts of themselves amidst their never-ending responsibilities
- how care threatens and complicates pre-existing relationship expectations
- and why it’s so important to begin paying attention to the newfound values and ways of being with others that caregivers are developing as a result of their care experiences.
Q: Donna, what did you write about?
A: Knowing what you need and how to get what you want in the way of home help is my area. I’ve written about topics such as coordinating circles of family and paid support, mapping care relationships and locating hidden (helpful) resources in the neighborhood. Each chapter of our book includes caregiver stories of how the themes we discuss play out in peoples’ lives.
Q: What do you Hope Readers will take away from your book?
A: Donna and Zachary:
The greatest compliments we’ve received from early readers of our book is that we put into words what they have been feeling and experiencing. We hope that readers can find themselves in the care transformations we talk about. Our book seeks to help people understand how their care role and relationship is shaping them—their values and beliefs in ways they could not have anticipated and perhaps, did not know how to articulate before reading our book. Advocacy doesn’t happen by accident—it’s a byproduct of a deeper understanding of what you need and knowing how to get what you want for yourself and your loved one. We hope this new understanding of the caregiver identity, combined with a set of practical tools, will ease the burden of care for readers and reveal to them the strength and wisdom that comes with their care experiences.