H. Norman Wright - Experiencing Dementia

Copyright 2017 by H. Norman Wright

All rights reserved.

Printed in the United States of America

978-1-4336-5023-9

Published by B&H Publishing Group, Nashville, Tennessee

Dewey Decimal Classification: 616.8

Subject Heading: DEMENTIA \ MENTAL HEALTH \ MEDICAL CARE

Unless otherwise noted, Scripture is taken from the Holy Bible, New International Version, NIV Copyright 1973, 1978, 1984, 2011 by Biblica, Inc. Used by permission. All rights reserved worldwide.

Also used: the New King James Version ( nkjv ). Copyright 1982 by Thomas Nelson. Used by permission. All rights reserved.

Also used: the King James Version ( kjv ), public domain.

1 2 3 4 5 6 7 8 21 20 19 18 17

For God is not the author of confusion, but of peace.

1 Cor. 14:33 nkjv

In thee, O L ord , do I put my trust: let me never be put to confusion.

Ps. 71:1 kjv

Introduction

I have lived the life of a caregiver. At the time, Im not sure I realized that was my reality. In fact, I have been responsible for several individuals in this way.

You may be at a place where it dawns upon you that youve either become a caregiver or you are facing that prospect in the immediate and ongoing future.

In my case, my wife and I cared for our profoundly mentally disabled son who was born with brain damage and an improperly formed brain. Matthew died at twenty-two.

We also helped care for my mother-in-law for several years as dementia and Alzheimers took their toll.

A few years later my wife Joyce was afflicted with a brain tumor, and we struggled with it for four years until it returned, expanded, and then took her life.

As I reflect back over the years of caring for loved ones, in each case it was their brain that was affected. And that is what we are facing in this bookunderstanding how dementia impacts the brain.

Do you avoid using and dislike hearing the sound of the word dementia ? When many of us hear it mentioned, we know its not good news. We would rather avoid it, but what do we really know about it?

We need to know as much as we can about this condition in order to truly understand and help those who suffer from it. It is definitely more than one disease. There are different forms of dementia, like meandering streams branching off from a river. They take different paths as they progress that, if we are not knowledgeable about, can throw us off balance.

The more you know about the different kinds of dementia, the more you can be of help to your family and friends so youre aware in advance of the various needs that will arise, as well as what to expect. The more information you have, the more equipped youll be to handle the progression of this disease and the changes that will occur. The more you know will diminish the amount of surprises and ambushes you will experience. The phrase, I wish I knew that, can be lessened and even eliminated if you will follow through with the recommended reading in this introductory book. There will be topics in this book to read and discussions with your loved one you would rather not have to experience, but they are necessary. Its important to talk with your loved one as soon as possible about their care as well as their end-of-life concerns. If you are like most of us, you want the best care for your loved one, so it is important that you stay abreast of the latest research, especially on medications and studies that could improve the remaining life of the person.

Chapter 1

Youre Not Alone

Y our calling to take care of a person with dementia will take more than money and help from other family members. Its a giving of yourself as a person, which includes time, energy, commitment, and love. It also means you will enter a new world of continuous loss as you watch someone you love slip away from you, and there is nothing you can really do to stop the process. You will enter a world of upheaval as you watch this disease continue. Add this to all of your other responsibilities, and you may feel as though youre carrying the weight of the world upon your shoulders. As one daughter said, I feel like Im doing it all and theres no relief. Others dont understand! and they may not. Dont count on receiving thanks or recognition from others. You may end up feeling invisible.

This book has not been easy for me to write. Many thoughts and feelings were activated because I walked this path with my wife, Joyce, for more than two years. I didnt realize how much anticipatory grief I was in until after she died. Part of my knowing that she would die from her brain tumors wasnt always conscious. The surgeries, chemo, and radiation all held out the hope of healing, and our focus was on that; yet under the surface was the entertainment of another possibilitydeath. Perhaps that stemmed from the death of our son, Matthew, in 1990, after a two-week stay in the hospital for corrective surgery.

One of the greatest gifts we have ever received is our mindour thoughts and especially our imagination. With it we can be creative and resourceful and move forward in life. But it can also be one of the greatest sources of pain because of what we choose to dwell upon. What we think about and say to ourselves feeds our emotions and our grief. Imagination is to our emotions what illustrations are to a text, or what music is to a ballad. Often we fixate on thoughts and questions that plague the pathways of our mind.

I Wonder...

Do you ever wonder what goes through the minds of others? I have. I still do, and especially what went through Joyces during her last weeks of life. It causes me to wonder what I would think and feel were I in her circumstance and place in life. It causes me to wonder what I will think and feel when it is my time to die. At age seventy, and because Joyce is already gone, that is much more real than ever before. I see it less as an ending and more as a transitiona beginning. The hundreds of cards and e-mails I have received in the past month have had a consistent theme that leads to a sense of comfort and reassurance. But every now and then I still wonder.

I wonder...

• What went through Joyces mind each morning when she woke knowing there was a sleeping enemy within her head that could awaken at anytimeand eventually did?
• How much of her thoughts and feelings were for herself or for what this was doing to her loved one? And knowing Joyce as I did, I think I know, since she cared so much for others.
• What she experienced when she asked, How long? and heard, It could be two weeks, or a month, or two. What is it like when you are told the news and then experience the process slowly as symptoms intensify and the words and thoughts diminish?
• What frustration it must have been to think youve said something clearly and then see the puzzlement and wonderment on the faces of others and realize you didnt say what you thought.
• Did the pain and discomfort at the last overshadow looking forward to going to heaven? Could she remember the comfort of the Scriptures? Could she remember and hear and feel our expressions of love? I hope so.

I have a number of other wondrous thoughts. But they will remain in this state, at least for now. Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirableif anything is excellent or praiseworthythink about such things (Phil. 4:8).