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Relentless Goodbye: Grief and Love in the Shadow of Dementia Paperback – May 31, 2012


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Relentless Goodbye: Grief and Love in the Shadow of Dementia + A Caregiver's Guide to Lewy Body Dementia + Living with Lewy Body Dementia: One Caregiver's Personal, In-Depth Experience
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Product Details

  • Paperback: 272 pages
  • Publisher: Herald Press (May 31, 2012)
  • Language: English
  • ISBN-10: 0836196163
  • ISBN-13: 978-0836196160
  • Product Dimensions: 8.3 x 5.4 x 0.7 inches
  • Shipping Weight: 8.8 ounces (View shipping rates and policies)
  • Average Customer Review: 4.5 out of 5 stars  See all reviews (10 customer reviews)
  • Amazon Best Sellers Rank: #241,720 in Books (See Top 100 in Books)

Editorial Reviews

Review

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

From the Introduction:

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

More About the Author

Ginnie H. Burkholder was born on her grandparents' homestead and grew up near Rittman, Ohio, where she was fifth in a family of eight children.

After their wedding, Ginnie and Nelson lived in Chicago where they served as volunteers at Bethel Mennonite Church. They both went on to graduate from the University of Illinois at Chicago Circle, each with a BA in elementary education. After graduating, they moved to Canton, Ohio, where they raised their son, Eric, and daughter, Amy.

Ginnie did substitute teaching and worked in preschool during the years the children were in school. She and Nelson were both active at First Mennonite Church, serving over the years as elders, Sunday school teachers, singers in the choir, and worship leaders. Ginnie became involved with the American Friends Service Committee during the late seventies and was active with the Nuclear Weapons Freeze in peace-promoting activities.

Ginnie received an Elder Caregiver of the year award from the state of Ohio in 2007. She lives on the two acres she and Nelson have called home since 1986 and where sitting on the porch swing with friends is one of her favorite pastimes.

Customer Reviews

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See all 10 customer reviews
I visit every day.
Patricia Dohrman
I truly enjoyed reading this book it gave me a sense of calm knowing that I am not alone in the caregivers world.
Jill K. Simms
Ginnie Burkholder: thank you!
Amazon Customer

Most Helpful Customer Reviews

2 of 2 people found the following review helpful By Elsie Rempel on August 27, 2012
Format: Paperback
Relentless Goodbye by Ginnie Horst Burkholder (C) 2012 Herald Press, Harrisonburg, VI, Waterloo, ON.
Review - by Elsie Rempel, Formation Consultant, Mennonite Church Canada 2012-08-24
The Lewy Body Dementia Association director of programs says it well when she describes Ginnie Horst Burkholder's Relentless Goodbye as "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." (from the back cover endorsements).
Relentless Goodbye provides a relentless read. Reading it feels like embarking on a roller coaster ride that starts slowly, but then picks up speed and won't stop. While on the ride readers empathize with both spouses, the one with the chronic, debilitating disease, and the one who becomes the caregiver and learns to name and live her grief authentically.
By writing this book, Ginnie Horst Burkholder articulates the journey for other caregivers who share a similar grief, and for others who would like to empathize, but don't know how. Written mainly in journal style, Relentless Goodbye provides compelling windows into the grind of endless repetition, fatigue, and loneliness that become part of spousal caregiving as it gives voice to the unique experiences of loss and grief that spouses experience when their partner is affected by dementia. In this case, Lewy body dementia gives it's victim occasional breakthroughs to clarity which add relief, confusion, and pain to the experience of adjusting to the progression of a spouse's disease.
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1 of 1 people found the following review helpful By Christine J. Guth on April 22, 2013
Format: Paperback
Ginny Horst Burkholder tells a highly personal story of coming to terms, over many years, with her husband's dementia. Lewy body dementia gradually transforms him from beloved life partner to recipient of care, still much loved.

Readers who deal with cumulative losses, especially those due to disability of some kind, will find much to identify with in the author's gripping, searingly honest recounting of crushed expectations and day-by-day, dogged faithfulness to difficult commitments. As her husband's health spirals downward, Burkholder shares with readers the fruit of her determined effort to give her fears a voice, and the gradual empowerment this process gives her to claim her own value.

Relentless Goodbye is an expression of the author's faith, a faith planted firmly in this world of loss and grief, but connected to an enduring and renewing Presence. The tension between the two is reflected when she writes, "I seem to hold God's goodness in one hand and feelings of betrayal and abandonment in another" (99).

Faith and love are threads running throughout the book, surviving a relentless series of losses and sustaining the author through increasingly difficult circumstances. "I'm beginning to see that faith is not lack of questions, and love does not come without pain," she writes at the book's conclusion (263). Offering hope for all who confront life's hard limitations, she concludes, "I want to go forward knowing love and Presence even in the pain and loss. I hold on to hope that I will" (264).
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1 of 1 people found the following review helpful By Jill K. Simms on July 20, 2012
Format: Paperback Verified Purchase
I truly enjoyed reading this book it gave me a sense of calm knowing that I am not alone in the caregivers world. I have read other books but I felt the emotion and identified with it on a very personal level.
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Format: Paperback Verified Purchase
This book has been my "Bible" with having a husband with the same disease (Lewy Body dementia). I have read and re-read this book and loaned it to others. Tomorrow I will loan it to the director of the Home where my husband is as we talked of it today. My Paul has been in the Home now for a year and it has been a roller coaster for me. I come home and run for this book. My husband knows me at times and I still try to thank him for our 58 years together and our years of growing up together as children. It is too late to say all that I want to tell him but I still tell him. Once in a while he has a minute of clarity and he looked at me several weeks ago and said: "I feel sorry for you." Then he was gone again...I cried for days...I took care of him at home for 10 yrs...It was hard to let someone else take the reigns but so necessary. I visit every day. This book has been so helpful to me...In the past I would read it at bedtime and fall asleep with it in my arms....Patricia Dohrman in PA
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Format: Kindle Edition Verified Purchase
Helpful to LBD Caregiver. I can not imagine being a caregiver given the health problems of the author. But her book was very helpful to me. When she wrote about her feelings and emotions, tears came to my eyes. She put in print what I am feeling and do not talk about with anyone. I am now reading a third book re LBD caregiving; I find it so interesting that each LBD suffers in so many different ways from what I am experiencing in my husband. My husband also has cap gras syndrome which is not very common evidently, and that is only mentioned in one of the books.
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