My Journey with Dad: A Caregiver’S Perspective in Caring for a Loved One with Alzheimer’S Disease

By JoAnn Devine

This is a true story about a daughter and her fathers journey through the stages of his Alzheimers disease. Caregivers are the main focus of this story. The author shares techniques and strategies in handling certain behaviors and situations. The goal is to make the caregiving process more manageable so that both you and your family can enjoy those special moments and days ahead with your loved one. The writer stresses the need for the caregiver to reach out for help and support so that the caregiver can keep physically and emotionally healthy. A resource list is included.

• Language: English
• Publisher: Xlibris US
• Release date: Apr 16, 2014
• ISBN: 9781499003482

JoAnn Devine

JoAnn Devine is a registered nurse. By reliving this life changing event in a story format, she wishes to reach out to all caregivers of Alzheimer’s individuals and share her knowledge and experience. The first part of her nursing career was in the acute care settings in hospitals. The remainder of her career was spent in community health care in home health services. JoAnn developed a free standing, Medicare certified home health agency in the community that her father’s business was located in while she was growing up. She is a past board member of the Kansas Home Care Association. During her tenure on the board, she helped develop a code of ethics for the Kansas Home Care members and worked closely with the Midwest Bioethics Center in Kansas City. She is a past founding member of the Clay County Senior Services and committee chair for the formation of in home services. Her focus has been on development and strengthening of the continuum of care for those that need it and to keep individuals as independent and safe as possible in their home environment. Through her varied roles, she has been a part of a network of community organizations and business associates to meet those needs. JoAnn is an alumnus of Saint Mary University and the Sisters of Charity School of Nursing in Leavenworth, Kansas. She lives in Kansas City and is active with her community’s 50+ program for travel, socializing, and learning. Her two sons and families also live in Kansas City.

Book preview

Copyright © 2014 by JoAnn Devine.

Library of Congress Control Number:   2014906981

ISBN:      Hardcover      978-1-4990-0349-9

      Softcover      978-1-4990-0350-5

      eBook           978-1-4990-0348-2

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Design by Timothy P. Devine, AIA

Rev. date: 04/11/2014

To order additional copies of this book, contact:

Xlibris LLC

1-888-795-4274

www.Xlibris.com

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614481

CONTENTS

Acknowledgments

1   Introduction

2   The Beginning

3   Transition: Loss Of Wife And Home

4   Adapting To A New Environment

5   Current Level Of Functioning And Stages Of Alzheimer’s Disease

6   Professional Help/Management/Guidance

7   Caregiving Strategies

8   Family/Caregiver Stages Of Grief

References and Resources

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This book is dedicated to my

father and mother, Bob and Jo,

and to all those Alzheimer’s caregivers.

ACKNOWLEDGMENTS

I wish to thank my two sons, Kevin and Tim, for their continued support and encouragement in my endeavor to complete this story. My oldest son, Kevin, contributed the digital images for this book. My youngest son, Tim, drew the design for the front cover.

To my sister, Jean, and my brother, Bob, thank you for sharing our walks down memory lane and for all your past support in caring for our dad.

To my longtime friend, Marian Gerhold, thank you for our weekly coffee klatches and lending me your ear. Your support eased my frustrations and concerns, enabling me to complete this work. You are a true friend.

To my newfound friend, Kim Booz, thank you for providing me insight into the classification of long-term care facilities and their functions and roles in the continuum of care. As a nursing home administrator, your information and advice were invaluable.

My thanks is extended to Kim Logan, executive director of the local hospice agency that provided care for my father. Kim clarified the process of arranging contracts between selected Medicare-certified extended care facilities and hospice agencies to provide continuity of care.

Thanks goes to the founding board members and staff of my county’s senior services board for their patience and belief in my ability and resolve to see this project through to its completion.

And lastly, I wish to thank the team of professionals at Xlibris Book Publishing Company for introducing me to self-publishing and providing me with the means to get there.

1

INTRODUCTION

T his is a true story about a daughter and her dad’s journey through the stages of Alzheimer’s disease. Much has been written about the disease itself; however, this story addresses the role of the caregiver.

That role can be delivered by a family member, companion, friend, or hired caregiver, depending on the stage of the disease and physical or health condition of your loved one. As the disease progresses, you will need to provide care twenty four hours a day. Care can be done in the home setting with the help of using several of the people mentioned above or, if finances allow, hiring professional services as caregivers. It is important to give the primary caregiver some respite. Still, at some point, it may become necessary to place your loved one in a long-term care facility that has an Alzheimer’s unit with trained professionals administering the care. It is also important to have a physician following this care with you.

In caring for my father for three and a half years, I utilized all of the above. I am the oldest of three children and quite close to my brother and sister. I feel lucky and grateful to have had their full support during this time of caring for our dad. This has been a journey that I will cherish for the rest of my life. It brought me closer to my dad than ever before. His life had come full circle, and as the disease progressed, he became more childlike. This was not just physically, but mentally and emotionally. At times, his true playfulness came shining through. It reminded me of the times he would chase us kids and tickle us until we said uncle. Granted, it wasn’t always a bed of roses in caring for Dad, but those bad times soon became less and less.

Now, as a registered nurse, I have seen a variety of behaviors and personalities exhibited by Alzheimer’s patients. It affects individuals differently. That’s why it is important to know the background and lifestyle of the one you are caring for. You need to know their likes and dislikes. It will come into play in managing certain situations. In the following story, I will share some interventions and techniques that worked and made life simpler and happier for us both.

2

THE BEGINNING

O n September 11, 2001, our lives here in the United States changed. It has a double meaning for me. My mother had recently had a mild myocardial infarction (heart attack). On that fateful day, my brother and sister and I learned that she needed another angioplasty. This would be her second plus her original coronary bypass fifteen years earlier. Our mother would not live to suffer along with the entire nation on our national loss. My parents lived in a Midwestern recreational community area at the Lake of the Ozarks in