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

By Sandra Savell

At the time this book was written, the youngest person recorded with Alzheimers Disease was 28 years old. Since I learned about Alzheimers with my maternal grandmother suffering from and succumbing to the disease in the 1980s, the ages of Alzheimers patients have been steadily becoming younger and younger. In my mothers memory care unit was an educator who died of early onset Alzheimers at the age of 53. There is a new diagnosis of Alzheimers every 67 seconds and it is estimated that one in every three people in the United States will have Alzheimers by the age of 85. This disease lasts from 2 - 25 years. If this trend continues then every family in this country will be visited by Alzheimers and the affects on caregivers will also affect this nation. 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: Jan 6, 2015
• ISBN: 9781496958242

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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© 2015 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  01/06/2015

ISBN: 978-1-4969-5825-9 (sc)

ISBN: 978-1-4969-5824-2 (e)

Library of Congress Control Number: 2014921978

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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 (meaning don’t call anyone on a billboard):

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

In The Trenches…

This is Your New Normal (and sometimes it sucks)

Girl’s Day Out:

The Daily Grind:

Additional Mealtime Tips:

The Roommate From Hell or Stuff Happens

Hallucinations:

Paranoia:

Hiding and Hoarding:

Prepare, Prepare, Prepare:

That’s Entertainment!

First, Do No Harm:

Martini’s in the Morning

Cash (probably in short supply)

Fooled Ya!

Living In the Front Row…

Keep Your Xanax Prescription Current:

Hazmat! Hazmat!

Invest in a Tazer:

Falling Down the Rabbit Hole:

The Dreaded Hospital Stay:

The Rubber Meets the Road:

Adult Day Care:

Foster Care:

Respite Care:

Memory Care:

Nursing Homes:

State Mental Hospitals:

Hospice:

As the Shadows Gather…

Go Anywhere but on a Guilt Trip (and don’t let anyone send you on one either):

As time progresses:

Your Last Nerve, Your Last Hope, Your Last Option:

The Worst Day of My Life:

The Three R’s: Responsibility, Reacting, Resentment:

You are on the S List:

Making Friends and Influencing Staff:

Love, Laugh, and Love Some More:

The Other Side of the Valley…

Finality:

The Inevitable:

Fried Chicken, Pecan Pie and Sweet Tea:

Aftermath…

Stay Away From the Quicksand:

Time on Your Hands:

Your Relationship Changes but it Never Ends:

Dealing With Your Greatest Fear:

To test or not to test:

Gift Yourself with the Healthiest Life Possible:

My health issues:

Get mad, Get proactive, Get political:

Make peace with the past and move on:

References

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, first, could not have walked this journey and second, 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 faith, I don’t believe I would have made it to the finish line.

To my exceptional hubs, Dale, who was always 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. I asked God years ago for a loving, kind and godly husband and He did not disappoint. And 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.

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.

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.

To my friends around the globe who continued to love me, encourage me, pray for me and listen to me via email and Facebook. I couldn’t have finished the race without them. To the drug reps and doctors who stretched the money by providing drug samples for Mom. To Wanda and Bruce who devoted much time 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.

Foreword

I was recently emailing a friend who has cancer. She had finished her chemo and radiation; but was very depressed after a doctor’s visit. In my zeal to comfort and encourage her I had no idea that I was like a spur between her toes; completely irritating. She finally sent me a terse email informing me that I just didn’t get it. I sent an apology. The next day she sent an email explaining what her doctor’s appointment had been about and details of what her upcoming year would be like and how she felt about it. It dawned on me that I actually was completely clueless about what she was going through. It was then that I decided that I would just be there and not try to fix it. I couldn’t fix it. Ever.

This revelation helped me to forgive the people who thoughtlessly hurt me by their careless and clueless remarks, opinions, judgments, attitudes and advice while I was caregiving my mother. A few of those people are now walking through the Alzheimer’s nightmare in their own families and have since confessed that they were completely ignorant of my situation. But there are others who still truly believe that I did not give all I had to my mother. I can’t fix the way they think.

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 a marathon 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.)

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 victor 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 hope is that this book will give the reader a lot of hope, a few chuckles as well as information that will be helpful on their own journey into caregiving. I pray for all the caregivers of the victims of this incurable disease; 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 and realize 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, well, 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. Not to mention 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, my cousin died of early onset Alzheimer’s. 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 least 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 off site 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. Every time I visited 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 refused.

On my 50th 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 two months 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 her 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.

As I begin writing, it is four years since her passing. The tears are still there, but no longer close to the surface. I no longer put on my turn signal to pull into the assisted living where she spent her last months before remembering she isn’t there. I still glance over at IHOP in the mornings to see if the bus from her assisted living is there. I often would stop and surprise her for 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. I had taken care of Mom for so long that it was automatic with me.

There are also many days when I am grateful that my responsibility as well as the anxiety and the worry I continually experienced during my caregiving years has ended. I’m still somewhat tired in body, mind and soul. I am also very surprised that even though she has been gone over four years, my energy hasn’t returned completely.

I