Carol B. Amos - H.O.P.E. for the Alzheimers Journey: Help, Organization, Preparation, & Education for the Road Ahead

for the Alzheimers Journey

Help, Organization, Preparation,
and Education for the Road Ahead

CAROL B. AMOS

NEW YORK

LONDONNASHVILLEMELBOURNEVANCOUVER

H.O.P.E. for the Alzheimers Journey

Help, Organization, Preparation, and Education for the Road Ahead

2019 Carol B. Amos

All rights reserved. No portion of this book may be reproduced, stored in a retrieval system, or transmitted in any form or by any meanselectronic, mechanical, photocopy, recording, scanning, or otherexcept for brief quotations in critical reviews or articles, without the prior written permission of the publisher.

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ISBN 9781683509035 paperback

ISBN 9781683509042 eBook

Library of Congress Control Number: 2017918890

Cover Design by:

Christopher Kirk

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Interior Design by:

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Author Photo by:

Theresa Knox Photography

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The Holy Bible, King James Version

Michael G. Boyd and Ronald D. Boyd emails

Copyright 2018, All rights reserved. Used by permission.

Materials from the Alzheimers Association Website

Copyright 2017. All rights reserved. Used by permission.

The Global Deterioration Scale (GDS)

Copyright 1983, Barry Reisberg, M.D., All rights reserved. Reproduced by permission.

He Looked Beyond My Fault (and Saw My Need), Dottie Rambo

Copyright 1968, Designer Music (SESAC) (adm. at CapitolCMGPublishing.com) All rights reserved. Used by permission.

I Smile, Writers: Fredrick Tackett, James Samuel Harris III, Kirk Franklin, Terry Lewis

Copyright 2011 Aunt Gertrude Music Publishing Llc. (BMI) Bridge Building Music (BMI) (adm. at CapitolCMGPublishing.com) / Hoceanna Music () / Avant-Garde-Music Publishing Inc. (ASCAP) All rights reserved. Used by permission.

I Smile, Words and Music by Kirk Franklin, Frederick Tackett, James Harris and Terry Lewis

Copyright 2011 EMI APRIL MUSIC INC., FLYTE TYME TUNES INC.,

AVANT GARDE MUSIC PUBLISHING, INC., BRIDGE BUILDING MUSIC, AUNT GERTRUDE MUSIC PUBLISHING LLC AND HOCEANNA MUSIC

All Rights for FLYTE TYME TUNES INC. Controlled and Administered by EMI APRIL MUSIC INC.

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ALL Rights for AUNT GERTRUDE MUSIC PUBLISHING LLC Controlled and Administered by BRIDGE BUILDING MUSIC

All Rights Reserved, International Copyright Secured, Used by Permission Reprinted by Permission of Hall Leonard LLC

Through It All, Andrae E. Crouch

Copyright 1971, Renewed 1999. Manna Music, Inc. /ASCAP (admin. By ClearBox Rights). All rights reserved. Used by permission.

The Leaning Tree, Win Thompkins

Copyright 2009, Uncle Wins Music Productions, Inc. All rights reserved. Used by permission.

To my parents, Elizabeth and Clarence Boyd

Honor thy father and thy mother: that thy days may be long upon the land which the Lord thy God giveth thee

(Exodus 20:12).

M y brothers and I were devastated when our mother began displaying signs of Alzheimers disease, also referred to as Alzheimers. We became part of the estimated ten million unpaid family members caring for a person with Alzheimers in the United States. We banded together to face this challenge head-on. I learned about this disease through reading, attending workshops, observing caregivers, and on-the-job training. I have learned from my successes and my failures during this eleven-year period. As a result, I have shared my learning, experience, and encouragement with friends, family, and colleagues as they embarked on their journey. The information has helped them tremendously, and I have learned from their experiences.

H.O.P.E. for the Alzheimers Journey was written from one caregiver to another to provide help, organization, preparation, and education. Information is shared in an easy-to-read format. The book is a combination of structured information, insights, and personal narratives to demonstrate The Caregiving Principle. This simple and original framework is introduced to give a deeper understanding of the person with Alzheimers and the caregivers role. Many of the ideas and suggestions can be used for caregivers of persons with other health challenges.

Dementia is a group of symptoms characterized by difficulties with cognitive skills that impact the ability of a person to perform everyday activities. Common causes of dementia are:

• Alzheimers disease
• Vascular dementia
• Dementia with Lewy bodies (DLB)
• Fronto-temporal lobar degeneration (FTLD)
• Parkinsons disease
• Creutzfeldt-Jakob disease
• Mixed dementiaa combination of multiple causes of dementia. Alzheimers disease and vascular are the most common mixed dementia.

Alzheimers disease is the most common form of dementia. It accounts for 60 to 80 percent of all dementia cases. Although each person with the disease is unique, and his or her experiences can be different, there are generic symptoms and similarities. This book will focus on the person with Alzheimers disease. It is an attempt to provoke thought and offer ideas on how to improve the care of a person with Alzheimers.

H.O.P.E. for the Alzheimers Journey incorporates a few original emails my brothers and I wrote to one another during this period. They serve to provide information and examples. The emails have been shortened, typos were eliminated, and some names have been removed. Wording may have been added for clarity. The emails are not in chronological order but are appropriate for the theme of the chapter. Below are some milestone dates to allow the reader to understand the particular phase of our journey.

Jan 2003 First email expressing concern

Oct 2003 First attempt to start Alzheimers medication, Aricept

Apr 2004 Start of Aricept

Sept 2004 Move to assisted living in Ohio, car sold

Oct 2005 Relocation to memory care facility in Delaware

Jan 2006 Start of additional Alzheimers medication, Namenda

July 2007 Start of low dose anti-anxiety medication (eventually as needed)

Jan 2014 Approximate start of last stage of Alzheimers disease

June 2014 Mother passes away

I am opening up the life of my family so H.O.P.E. for the Alzheimers Journey can provide you with insight, tools, and encouragement for your journey. I believe it will make a difference in your life and the life of your loved one. Most of all, I pray my book will be a ray of hope during this season of your life. May it give you hope to become the caregiver you need to be, hope that you can endure the deterioration of your loved ones mind and body, hope that you can take care of yourself, and hope that you can connect with and enjoy your loved one.

I lost my mother, friend, and role model on June 15, 2014. I was blessed to have her with me all of these years. I am grateful for the precious memories we created as her mind and body slowly deteriorated. I am grateful for Gods presence throughout. I am grateful for the support of family, friends, and medical and caregiving professionals. I am grateful I was able to help provide the care and quality of life she deserved.