Dear Clueless: A Daughter's Journey Through Alzheimer's Caregiving

By Sandra Savell

I have lost both parents, a grandmother, an aunt and a cousin to Alzheimer’s Disease. They all died either of the disease itself, or of another cause but in the advanced stages of Alzheimer’s. Currently, a cousin from each side of my family is living with the disease. One is in advanced stages in a nursing home and the other is beginning to lose ground.

The numbers stagger me. Every 63 seconds a new diagnosis of Alzheimer’s occurs in the US. 40 years ago, when my grandmother was diagnosed, very few people had heard of the disease. Now, it seems as if every new acquaintance has a family member or friend stricken with Alzheimer’s.

Age is no longer a factor although most cases are diagnosed after age 65. Early onset Alzheimer’s seems to be more and more common. The youngest person on record with Alzheimer’s is a two-year-old toddler. Death from the disease takes from 8-10 years after diagnosis usually. There is no cure, and currently treatment is woefully inadequate.
This book is both a personal story of a decade-long journey of caregiving as well as a call to arms for funding and research of this terminal disease.

• Language: English
• Publisher: AuthorHouse
• Release date: Feb 4, 2020
• ISBN: 9781728345673

Sandra Savell

Sandra Savell has been a nationally licensed massage therapist (NCBTMB) since 1998. From 2002 until 2010 she was the primary caregiver for her mother who suffered from Alzheimer's disease. She is a spokesperson and advocate for Alzheimer funding and research. She resides in Aiken, SC, with her husband, Dale, and her corgi, Mimi.

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© 2014 Sandra Savell. All rights reserved.

No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.

Published by AuthorHouse  02/04/2020

ISBN: 978-1-7283-4568-0 (sc)

ISBN: 978-1-7283-4567-3 (e)

Library of Congress Control Number: 2020902361

Any people depicted in stock imagery provided by Getty Images are models,

and such images are being used for illustrative purposes only.

Certain stock imagery © Getty Images.

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Contents

Dedication

Acknowledgements

Foreword

Introduction

Prelude

The Road to Hell is Paved with Good Intentions (and high hopes):

In The Beginning

Here’s Your Sign (even if you want to ignore it):

Talking to the Brick Wall(s):

Facing the Dreaded Truth:

Turn and Face the Ch-ch-ch-changes:

Find a Good Lawyer

Drafting the Family Because They Probably Won’t Enlist and Other Lessons to Learn:

In The Trenches

The Daily Grind:

Stuff Happens

Living In the Front Row…

Hazmat! Hazmat!

Falling Down the Rabbit Hole:

The Dreaded Hospital Stay:

Hospice is NOT a Curse Word:

As the Shadows Gather

The Other Side of the Valley

References

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Dedication

There is only one person that this book could possibly be dedicated to and that is the woman I have written about. The woman who did not want another child, but loved me fiercely. She was my abandonment and my overprotection; my staunchest supporter and my greatest critic. She desired so much for me, but was fearful of my dreams and ambitions. She wanted me to accomplish much, but to never leave her sight in doing so. She was an enigma. Until the day I became her parent and she became my child, I hacked away at her apron strings unrelentingly. Those strings did not release until 4:10 a.m. on November 19, 2010 when she took her last breath with my husband and I by her side. Although I deeply regret that our relationship was never what I dreamt it could be, she was my biggest heartache and my greatest love. She was my mother.

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Acknowledgements

I doubt that I will ever come close to remembering all the wonderful people who touched my life and gave me hope and encouragement during eight very difficult years of caregiving.

To my Abba Father, my Savior Jesus and my Comforter, Holy Spirit, without whom I could not have walked this journey and could not have written this book. I leaned on the everlasting arms then, as I did before and as I do now. Had I not had my faith I would have never made it to the finish line.

To my exceptional husband, Dale, who was consistently able to calm Mom. She always knew he was her son-in-law. She just didn’t know which one or what his name was. Dale stuck by me like glue when I was at my worst. Many years ago, I asked God for a loving, kind and godly husband and He did not disappoint. Also, for Dale’s editing, advising and the fact that if I wrote a single word, he backed up my computer in six different places so I would never lose anything at any time. You have brought immeasurable love and happiness into my life. You have also been a fount of support, the likes I never knew before. Thank you from the bottom of my heart.

To my dear friend, past employer and physician, Ann Kulik, who kept me employed when I felt exhausted and overwhelmed; who watched over the health of my family like they were her own and who was instrumental in helping me place Mom with the least amount of drama. When I floundered, she threw out life lines always.

To my incredible pastors and the members of Augusta’s First Assembly of God, who were kind and caring and never said a word when I would fall into a wearied sleep in the middle of the Sunday sermon because they all realized it was probably the first time I sat and relaxed all week. And they were right.

To my friends around the globe who continued to love me, encourage me, pray for me and listen to me via email and Facebook. To the drug reps and doctors who stretched the money by providing drug samples for Mom. To Wanda and Bruce who devoted much time, sweat and energy to help me sell my Mom’s house, thereby assuring that I had the funds to care for her. To my cousin Jeff, who told me I was his hero for taking care of Mom and lifting my spirits when I felt like the worst daughter of all time.

And for all the other unnamed people who applauded my efforts, lifted me up in prayer and knew I would be all I could be in this situation, and more. You know who you are. I am grateful without measure.

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Foreword

If this book causes just one person to understand that each person’s caregiving walk is based on the history with the patient; and that each history is personal and individual, then my goal for this book will be met.

I hope that I, also, have learned to not think I know what the other person is experiencing if I have not walked a mile in their shoes. However, the Alzheimer’s walk is more like an Iron Man without the cheering crowds at the end.

(Please note that when I refer to my mother in this book, it will also mean any Alzheimer’s patient [AP] or your loved one, etc. I use all of these terms interchangeably.)

"The journey of Alzheimer’s disease is long and arduous

for the caregiver." The Advocate/Baton Rouge

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Introduction

THE PRIMARY CAREGIVER RECEIVES THE LEAST

COOPERATION FROM THE PERSON WITH DEMENTIA.

The above statement is the crux of this book. I lived this statement for eight years. Some days I was the cherished daughter and other days I was dirt dust. More often I was the latter. There were moments I was proud of how I took care of my mother and moments when my thoughts were so dark that I will never reveal them.

After being involved for many years in the Alzheimer’s community, I have learned that I am not alone in how I handled this challenge. My hopeful goal is that this book will give the reader a lot of hope, some laughter, as well as information that will be helpful on their own journey into caregiving. I pray for all the caregivers of the sufferers of this incurable disease. I pray that you will stand tall and continue to love yourself, even during the bad days.

This is a book for YOU, the courageous Alzheimer’s Caregiver. You will need it. You will need to read everything you can get your hands on and find time for. You will need to find what works for you and the person you are caring for. But most of all you will need to learn to turn off the blather, acknowledging that YOU are the best person for this job and that YOU know what is best for you, your family, the life you lead, and especially for the person you care for. Be prepared. Everyone you meet will have an opinion. Please remember that opinions are like noses…everyone has one. In the end, your decisions are the ones that matter and they will be the ones you live by day to day. They will also be the decisions that you will live with when your caregiving days are over.

I came by writing this book honestly and through experience. My father had advanced Alzheimer’s when he died of mesothelioma at the age of 72. My maternal grandmother and one of my mother’s sisters died in the advanced stages of Alzheimer’s. As I was finishing this book, a cousin died of early onset Alzheimer’s. (And as I write the second edition of this book, two more cousins are suffering from the disease.) My sister had alcohol induced dementia at age 63 and resided in a nursing home in Florida for the last four months of her life before dying of organ failure. But most of my experience came from being my mother’s caregiver for eight years. Mom died at age 85 of coronary artery disease; but the Alzheimer’s had been eating away at her mind and memories for at over a decade before her death. She did not know me as her daughter for the last two years of her life.

For approximately four years I was Mom’s offsite caregiver. I flew to Florida as often as I could to check on Mom, her finances, the condition of her duplex and to take her to her doctor’s appointments. Each time I visited Mom, I broached the subject of her coming to Virginia for a visit; hoping that she would become familiar with our home so that if (and when) the time came for her to live with us, her transition might be easier. The visit never happened. She always refused.

On my 51st birthday I received a phone call from my cousin, Jeff, letting me know that Mom was hospitalized. She had been admitted the day before due to an episode with AFIB. This resulted in a five-day hospitalization which gave me the ammunition to inform her that her doctors did not want her to live alone anymore and that she needed to live with us. My husband and I moved her personal belongings and her cat into our home just fourteen weeks after her hospitalization.

Mom lived in our home for 28 months, and with the help of a part-time hired caregiver, my husband and myself, we did our best to take care of Mom. When her physical and mental condition, her hallucinations, her agitation and her delusions proved too much for us to safely care for her, we placed her in a memory care unit of a nearby assisted living facility. Mom was there for eighteen months.

Sadly, she fell and broke her hip two hours before a surprise birthday party for her 85th birthday. She died nine days later of complications of Alzheimer’s and heart disease with my husband and myself by her side.

I wrote the first edition of this book four years after she died in 2010. The tears were still there, but no longer close to the surface. I had finally stopped putting on my turn signal to pull into the assisted living where she spent her last months before remembering she wasn’t there. I would occasionally glance over at IHOP in the mornings to see if the bus from her assisted living was there. I often would stop and surprise her at breakfast. On the first New Year’s Day after Mom passed, I told my husband that we needed to wind up our day with friends so I could have dinner with Mom. She had been gone six weeks. The first year after she died, I bought lingerie for her, left the store, and came back to the store in tears to return it. I did the same thing in drug stores with cosmetics and candy stores where I stocked up for her sweet tooth. I had taken care of Mom for so long that it had become automatic.

I am grateful that my responsibility as well as the anxiety and the worry I experienced during my caregiving years has ended. I continually cope with many health challenges that I believe occurred because of caregiver stress. I have discovered through much reading and speaking to groups of caregivers that most of us have health problems resulting from years of emotional trauma and few of us return to our pre-caregiving days of good health. It takes a lot to be a caregiver. And it takes a lot to recover from being one as well. If recovery is even possible.

You will find this is a very personal story of mine and my mother’s journey through Alzheimer’s. This book may or may not address the situation you are currently traveling through. But I hope it will help and inspire you nonetheless.

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Mom & Dad, 1945, Courtship

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Prelude

The Road to Hell is Paved with Good Intentions (and high hopes):

As the year 2005 dawned, my husband and I began to realize that life in Northern Virginia was losing its sparkle. Our little 34-year-old ranch home was having major problems with no repairs being under the $4,000 range and many upward of that amount. We also acknowledged that within a couple of years we would need a new HVAC system as well as a new roof. We also realized that we did not want to invest any more funds on our modest home.

We were still living under the haunting specter of 9/11 with every trip on the Metro or into the city. Our Shining City on a Hill had turned into an over-shadowing threat.

One September morning we decided to drive 24 miles to the opening of a new sports and hunting store in another county. We merged onto I-95 at 9:00 a.m. We arrived at 12:30 p.m. We spent three and a half hours on the Interstate due to volume and only volume. No accidents. We did not exit and head home because the situation was just as bad in the opposite direction. It was then and there that we made the decision that we could not live in Northern Virginia for another ten years until retirement.

Dale’s brother had moved to a small town in South Carolina about four years earlier and we enjoyed the charm of the town when we would visit. We made the decision to place our house on the market and move there, without jobs and with nothing concrete waiting for us except knowing that Dale’s brother and sister-in-law would not let us live in our car or starve. One June 18, 2006, the day after Dale’s 56th birthday, we headed out of Virginia with our corgis, our cars and our belongings in a big yellow truck.

Dale’s brother had found a rental for us that was perfect. We moved in and began the job search. As a massage therapist, I was scooped up by a day spa on my first day of canvassing for work. Dale’s job search was a different story. His resume showing a TS6 (high top secret) clearance and a stint with the Joint Chiefs of Staff in the Pentagon frightened most Human Resource managers and his search went on for four months.

In August, Dale’s oldest son, Steve, was deployed to Afghanistan. Dale was very quiet about the deployment. I couldn’t watch the news and refused to think about it. I didn’t sleep much either during his deployment.

The week arrived when our liquidity bottomed out and we had to decide whether or not to head back to Virginia or cash in some retirement funds. Miraculously our house sold for full price and Dale was offered a job. On the same day. Just three hours apart. A new life began for real in South Carolina in October of 2006.

Dale and I began our search for a home near the end of October and it became very evident to everyone that this was not our finest hour. As I had moved into Dale’s home when we married, we had never shopped together for a house. I would walk into a listing and see all the possibilities of the home. Dale would walk in the front door, immediately know it was not for him, then walk out and wait in the car. By the grace of God, our dream home came on the market the day after Thanksgiving and we had a contract on it three days later. I’m not sure, but I think we dodged the possibility