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Relentless Goodbye

Grief and Love in the Shadow of Dementia
Relentless Goodbye

By author: Ginnie Horst Burkholder
Product Code: 9616
ISBN: 9780836196160
Binding Information: Paperback / softback
Size: 8.50 x 5.50 inches

Publication Date: 5/31/2012
Availability: In stock.

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Ginnie Horst Burkholder shares from the heart about caring for a spouse who is slowly slipping away to Lewy body dementia (LBD). Burkholder’s memoir reveals how she handles the constant challenges through humor, love, commitment, and faith. At the same time, she does not gloss over the loss, pain, and loneliness on this emotional roller coaster ride that invaded her marriage and family following her husband’s diagnosis.

The book is about the gritty and glorious substances of life—how illness and health, faith and doubt, grief and acceptance all flow together in the river of change. It leads each of us to a greater awareness of our own life experiences.

Study questions are included. They are not only a tool for understanding dementia or the role of caregivers but can bring greater self-awareness to every person’s life experience.

LBD is not a rare disease. It affects an estimated 1.3 million individuals and their families in the United States. It affected the author Ginnie Horst Burkholder's family before the age of 50. Learn more from the Lewy Body Dementia Association at www.lbda.org. Read more of Ginnie's writing and other Essays on LBD Caregiving by clicking here.

A great companion resource to Relentless Goodbye is the book Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief by Pauline Boss, PhD. Click here for more information.

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Table of contents

Foreword

Introduction

Year 10

The way it is
Is this Nelson?
Chronic sorrow
Humpty Dumpty kingdom
How we love
Good grief
Hurt and the holidays

Year 11

Change is the one constant
Living and managing life with LBD
On the long road to acceptance
Word salad
Respite and the re-entry blues
Banish the Judge
Visiting the memories
Living with the dissonance dragon
Tug of war
Giving thanks
A caregiver's Christmas list

Year 12

My new year
Struggle and hope
A longing and a gift
The communication conundrum
Lost power
Before and after
What can he do today?
Kaleidoscope

Year 13

I have survived
Sometimes it matters
Bridging the gap
What can I do?
Another go at freedom
It is time
A caregiver's prayer
Three times a lady
No bed in long-term care

Year 14

Waiting
Longing to be known
Long-term care but still a caregiver
Finding Nelson
How many times can you say goodbye?
The hardest thing
Maybe this is mercy
How are you doing?
Taking care of me
Voices

Year 15

Happy you, sad me
Promises, promises
Give feelings a voice
A cleaner grief
No words for his grief
Going forward

Acknowledgments

About the author


Relentless Goodbye

Sample Chapter

Chronic sorrow—August

I'm reading a book by Susan Roos called Chronic Sorrow. The title stands out like a beacon. Roos has opened my heart and dissected its dull ache into knowable little pieces. I'm reminded that I'm not weird or weak or too needy. I'm responding as people do when they are faced with a loss that unfolds new consequences day after day until years have stacked up.

She tells me the disconnect I feel with "normal" people is not unusual. I can't relate to their way of ordering the world. They can't relate to mine. I don't mark time by the same events as they do: retirement treats, pursuing common interests beyond what early marriage allowed, assisting or following adult children. If I mark time at all, I mark it by the losses and crises that litter the path of a caregiver.

Roos sees what most people can't—that the more I attempt to make life normal for Nelson, the more abnormal life becomes for me. Yes, he can still enjoy the paintbrush in his hand, the sense of accomplishment, the satisfaction of doing a job at which he was once so adept. But someone needs to get in the car and go for the paint; make sure the brush is still usable; map out and monitor the steps of scraping, priming, painting; note what has been overlooked as he paints; and clean up afterward. While others look at him and say he is doing so well, Roos sees the scramble it creates for me the caregiver.

There's a double bind in chronic sorrow. I want to be with other couples, but when I am, I see so many should-have-beens that trigger feelings of loss. I can avoid those triggers by isolating myself, but then the loneliness increases. I've learned to live in both places, weighing in the moment which one is least discomforting: being with others and facing the triggers, or staying away and facing the loneliness.

Roos tells me to separate the disease from the man. I recognized this distinction soon after diagnosis. I knew I needed to take out my anger on the disease and not on Nelson. It sounds simple, but at times it seems impossible. When my life repeatedly has to bend and mold to his need, or when I just want the comfort of someone else's competency to fall back on, he and the disease meld into one.

Our family physician says he sometimes forgets that behind Nelson's flat facial expression there is often a smile. How do you know a person if not by their expressions and their behaviors? How do you know a person if not by how they respond and what they present? It seems I'm being asked to base my knowing him on memories and gritty should-have-beens.

Fantasies, Roos tells me, have a lot to do with how we cope. My fantasy has always been about mutual companionship, comfort, and support. If my fantasy had been about taking care of someone, pouring out myself for someone else's need, it would have been an easier adjustment. But whose fantasy is only about giving? Dismantling a fantasy is exhausting.

I grew up in a family of eight children. I was the oldest of the second four children and had some responsibility for younger siblings at the same time that I needed something from my parents that they were not equipped to give me. Life with Nelson brought a comfort and support that I'd not experienced before. Having it taken from me throws me back into the feelings of a child adrift in the world with responsibilities that seem too big for me.

Roos talks about families who disintegrate initially and then begin to pull together. I didn't know how to cope with my own uncertainties, losses, and fears. Our two children, one in high school, one in college, were also experiencing loss but I couldn't help myself, let alone them. They were losing not only their father but their mother. Now we're learning as we go how to be family.

Finally, Roos talks about faith. My faith in God feels blunted, as if I can't quite hold on to it. But neither can I let it go. Diminished faith is protection, she tells me, from further feelings and perceptions of betrayal and disappointment. For now some part of me lies quietly, deep inside a place of knowing that ultimately God is good. The rest of me is tentatively waiting for the storm to pass to see if God will appear beside me. It's hard to see in the thick of the storm and it's hard to hear my name.

***

Absolutely nothing would get me to read about my current incarceration. Every free moment I'm running away from it. Probably not the healthiest response, but my fantasies were never to be a caregiver. That's the masochistic type, no?
—"Liz"

I am fifty-one years old and have been caring for my fifty-four-year-old husband for seven years. He has lost thirty pounds, is in a diaper, and cannot walk or feed himself. I placed him in a nursing home and my heart is burning with pain. I feel as though I have failed him.
—"Connie"

Questions for reflection

  • How well do you think you would do at bending and molding your life to the needs of a person with dementia?
  • If you have ever "dismantled a fantasy," what was it like?
  • What fantasy would you have to dismantle if your spouse developed dementia? Or your parent?

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