Deborah Shouse - Love in the Land of Dementia: Finding Hope in the Caregivers Journey

Special Praise for
Love in the Land of Dementia

Love in the Land of Dementia is a very moving, but also convincing story. I recommend it as a good read for other caregivers who can be encouraged for their own caregiving journey. It is also important for the rest of us, who should not forget how big the impact of this disease is on peoples lives, and how urgently we need to advocate for better care, support, and ultimately finding a cure for Alzheimers disease and other dementias.

Marc Wortmann
Executive Director, Alzheimers Disease International

This is a story of love and compassion that is deeply personal, as well as giving a voice to so many people with dementia and their families. This book is written with honesty, insight, and humour, and will help society understand what it is like to support someone close with dementia, as well as offering some practical guidance. By humanising dementia, Deborah is reducing the social stigma so the social world around each person with dementia can offer compassion and love instead of judging and labelling. This book represents a personal journey to a new, enlightened paradigm of dementia care.

Jane Verity
Founder and CEO
Dementia Care Australia

We have been searching for a text by a family caregiver that we can recommend unreservedly, and now we feel we have found one in Love in the Land of Dementia by Deborah Shouse. Whilst never denying the downturns in caring for someone with Alzheimers, Deborah is intelligent and sensitive enough to notice all sorts of things that bring situations alive, give people hope, and constitute treasurable epiphanies.

John Killick
Author and Alzheimers Advocate
Dementia Positive, UK, The Journal of Dementia Care

Love in the Land of Dementia is an insightful journey of a daughter as her mother progresses through the stages of Alzheimers disease. There is wisdom in every anecdote, and Deborah Shouses unique perspective provides caregivers and family members with hope and meaning.

Jeffrey M. Burns, MD
Director, Alzheimer and Memory Center
Principal Investigator, Brain Aging Project,
University of Kansas Medical Center

I have read hundreds of true stories about families dealing with Alzheimers disease. None was written more wonderfully or truthfully about the grief, guilt, and, yes, grace of caring for someone with this disease. Readers journey with Deborah Shouse in her superbly written tale, finding hope in the loss and even happiness in the new connection.

LeAnn Thiemann
Coauthor, Chicken Soup for the Caregivers Soul

Deborah Shouse extends a glimpse of humanity within the very challenging role of Alzheimers disease and long-term care. Her stories have a message that cannot be conveyed or received in any better way. The stories are beautiful and wrought with genuine compassion.

Michelle Niedens
Education Director
Alzheimers Association, Heart of America Chapter

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2013 by Deborah Shouse
All rights reserved. Published 2013.

No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the written permission of the publisher.

Central Recovery Press
3321 N. Buffalo Drive
Las Vegas, NV 89129

18 17 16 15 14 13 1 2 3 4 5

ISBN: 978-1-937612-50-4 (e-book)

Publishers Note: This is a memoir, an inspirational and autobiographical work based on fact recorded to the best of the authors memory. To protect their privacy, the names of some of the people and institutions in this book have been changed, but any facts recounted are historically accurate.

Cover design, illustration, interior design, and layout by Deb Tremper, Six Penny Graphics

I dedicate this love story to my parents, Fran and Paul Barnett.

Table of Contents

Several years ago, I was a speaker at a national conference on aging, along with thousands of academics and other professionals. After my closing address, an elderly man came down the aisle toward me, pushing his wife in her wheelchair. He had that look in his eye that said, Listen here, young man, I am coming to talk to you; you stay right where you are. I did.

After a few pleasantries, during which I noticed that his wife was paralyzed, drooling, and clearly in her own reality, the man said, Isnt she pretty? I immediately replied, Yes, sir. He started telling me about how they had been members of their church for fifty-five years, when suddenly his wife coughed, gagging on her saliva. For a moment I thought she was going to die, but her husband calmly removed a handkerchief from his pocket and tenderly cleaned her up. Then he turned to me and said, I love her very much. I bathe her, I dress her, and I take her everywhere. Then he related how the previous week, his minister had told him that members of his Sunday school class had requested that he not bring his wife to class anymore. The reason? His wife made them uncomfortable. Brimming with anger, the man said, And what do you think about that, Dr. Oliver? It was a declaration, not a question.

As he left, I realized that his were the most profound words spoken at the conference. He had said, The problem is not my wife; it is those people in the Sunday school class. It is you and me. It is those of us who are uncomfortable with frailness, helplessness, dependency, and more. Though our reaction is normal, we are the problem. Ultimately, it is the rest of us who need hope and help. If we can enter the land of dementia with open hearts, minds, and souls, we might just be healed by those who are the object of our love.