One of the best caregiving memoirs I have read. Burkholder teaches us about the delicate balance of constant caring for a loved one while also tending to one's own needs. Her humanity and love are apparent on every page. A must read for professionals as well as family caregivers.
--Pauline Boss, author of Loving Someone Who Has Dementia
Relentless Goodbye is an exquisitely written look at a marriage forever changed by Lewy body dementia a testimony to the devotion and commitment of caregivers who carry someone's entire world on their shoulders.
--Angela Taylor, director of programs, Lewy Body Dementia Association
Gritty, straightforward, and inspiring. An intimate and revealing memoir.
--Shelly Weaverdyck, PhD, consultant on the brain, cognition, and dementia
Uniquely positioned among caregiver books, Relentless Goodbye addresses a relatively new diagnosis that is frustrating to diagnose and understand.
--Jim Ellor, PhD, author of Methods in Religion, Spirituality, and Aging
From the Author
This book didn't start out to be a book. My writing was simply my tool for processing the changes that were mandated by LBD (Lewis body dementia) and the emotions they triggered as dreams and expectations scattered and fell away.
Writing was my voice for truth as I experienced it on any given day. I needed to give voice to the whole story to the reiterated loss, ongoing grief, underlying pain, and the constant struggle in and out of acceptance. I also needed to combat the isolation that creeps into the life of a caregiver. I began to post my writing on the Lewy Body Dementia Association website and received numerous responses from other caregivers over the years. Some of these are included in this book.
The stories and reflections in this book repeat the themes of loss, grief, and the struggle for acceptance. That is what a relentless goodbye is. It means grieving the loss of today and coming to terms with a different expectation of your spouse. Then, just when you've figured out how to cope, you start all over because now there is something new falling away in this snail-paced, growing-down goodbye.
I have learned so much and grown in ways I value and couldn't have imagined. Still, this journey is a hard teacher. I've heard people say about difficult experiences that they wouldn't change a thing. Maybe someday I will say that. I just know that I'm not there yet.
--Ginnie Horst Burkholder