Relentless Goodbye: the emotional journey of caring for a loved one with dementia

Mennonite Church Canada/MennoMedia joint release. June 8, 2012 – Melodie Davis

big relentless goodbyeRelentless Goodbye book cover. View or download full sized image.

WATERLOO, Ont. and HARRISONBURG, Va.— Ginnie Horst Burkholder, author of the recently released memoir Relentless Goodbye, was only in her 40s when she first felt that something wasn’t right with her husband Nelson. A small group at church was doing a personality test just for fun, and it was obvious that Nelson needed much more help than warranted for the simple activity. She just blamed it on poor sleep.

And why not? Ginnie and Nelson had built what she felt was a wonderful life together in Canton, Ohio. They were both elementary school teachers near Ginnie’s hometown of Rittman; had two wonderful children, Amy and Eric; and enjoyed the typical activities of a young family: gardening, remodeling a fixer-upper, hot dog roasts and volleyball in the backyard, and attending church every Sunday.

However, when Nelson continued to have difficulty sleeping and performing tasks that once were second nature, they started looking for answers. So began the months and years of doctors’ visits, specialists’ exams, and long afternoons in waiting rooms. Eventually, Nelson’s illness was diagnosed as Lewy body dementia (LBD), a multisystem formf dementia that affects people’s cognitive, physical, sleep, and behavioral functions. Those with LBD suffer a “slow and sure decline to eventual helplessness,” says Burkholder.

Sheescribes both the path to diagnosis and the ensuing journey in her book, Relentless Goodbye: Grief and Love in the Shadow of Dementia, to be released May 31 by Herald Press, the book imprint of MennoMedia.

“This book didn’t start out to be a book,” states Burkholder. “My writing was simply my tool for processing the changes that were mandated by LBD and the emotions they triggered as dreams and expectations scattered and fell away.” In her stories, she outlines the long, relentlessly pounding journey of living with dementia, about the laughter that bubbles up from hearing a word misused and the grief that settles like dust again after the laughter has stopped.

Burkholder first started recounting her emotional journey through journal entries on the website for the Lewy Body Dementia Association (www.lbda.org). Her writings connected with many other caregivers, and from there, grew into a book.

By writing Relentless Goodbye, she hopes people will be enlightened about some of the challenges brought to the lives and marriages of anyone giving major care to a spouse or loved one with dementia. Yet anyone who is a caregiver will identify with the emotional toll of caregiving that Burkholder describes. The book also includes study questions for personal or group use.

“Many how-to books talk about the practical issues of living with dementia,” Burkholder notes. “But few people are willing to talk [in print] about the emotional journey loved ones are abducted into taking. I hope this book will help other caregivers know they are not alone.”

The Burkholders are members of First Mennonite Church in Canton, Ohio.

MennoMedia is the publishing ministry of Mennonite Church Canada and Mennonite Church USA.