Like most, I knew about Alzheimer's disease. It causes old people to forget. When my relationship with this disease began, it highlighted how little I knew. Following my widowed mother's Alzheimer's diagnosis, I researched this disease to gain insight about my new role as her caregiver and decision maker. What I learned and experienced during her affliction still left me somewhat unprepared for what was yet to come. Sixteen months following my mother's diagnosis, my dear wife and best friend was diagnosed with early-onset Alzheimer's. Though now I was familiar with this silent killer, my wife's diagnosis set into motion many changes and challenges in our lives. Someone is diagnosed with Alzheimer's every sixty-eight seconds. Currently, Alzheimer's is the only disease in the top-ten causes of death that is on the increase and has no means of prevention and no possible cure. Given these facts, support for those afflicted relies on increasing levels of caregiving as the disease progresses. Let me explain something about this "old folk's disease" Alzheimer's affects more than just parents and grandparents. It is also the disease of siblings, spouses, and children. Alzheimer's forces many families to decide between home versus institutional care. An estimated fifteen million caregivers provide some level of care to the Alzheimer's victims still living at home. No matter what level of care you are providing, the importance of preparation is paramount. Arming yourself with knowledge begins that preparation process. I was unprepared for the roller-coaster ride my life became as the sole caregiver for two Alzheimer's victims. To meet their varied challenges, I adapted and developed multiple techniques for targeted personalized care. If only I knew then what I know now. By sharing my knowledge and experience, I hope to better prepare you for your caregiving journey.

Never Giving Up & Never Wanting To

A Caregiver's JourneyBy Barry Tutor

Trafford Publishing

Copyright © 2012 Barry Tutor
All right reserved.
ISBN: 978-1-4669-4880-8

Contents

Preface.........................................................ixOur Fairy Tale..................................................xiiiAcknowledgments.................................................xvMe—Caregiver..............................................1Us Everlasting..................................................9Lynne's Background..............................................15Lynne's Alzheimer's.............................................19Lynne's Stories.................................................27Lynne—Published Author!...................................31Hazel's Background..............................................35Hazel's Alzheimer's.............................................41Mary/Grandma/Mom................................................47People..........................................................49Touring the AMA.................................................65Alzheimer's Facts and Figures...................................73Planning for the Present and the Future.........................91Caregiver's shopping and Wish List..............................111Caregiving in the Real World of Alzheimer's.....................119Controlling the Caregiving environment..........................143Delusions and Hallucinations....................................147Sundowning......................................................151Activities of Daily Living......................................153Alzheimer's Assisted Living Facilities..........................159Hospice Care....................................................169Clinical Trials.................................................173stories from the Real World.....................................181Many Lessons Learned............................................195You—Caregiver.............................................201My Closing, My Challenge........................................207Resources and other Information.................................211The Seven Stages of Alzheimer's.................................213Possible Signs of Alzheimer's disease...........................219The Internet Resources..........................................221

Chapter One

Me—Caregiver

You may ask (and justifiably so), "Who are you to give me advice?" Me? I'm just another caregiver who hopes and prays that we will all gain some much-needed perspective on caring for someone with Alzheimer's disease and how it will rule and possibly ruin your life. And it will, in fact, rule your life. You will doubt decisions and spend time second-guessing yourself because you know that you can always do better. And what makes it worse is the person you are doing this for may not know you from Adam or Eve. To make things doubly worse, you have to do it all again tomorrow.

I have fought this battle every day without fail. I have fought on even though I have had so little sleep and several pains, ailments, and injuries. Forget the flu, the back strains, toothaches (including one from a tooth chipped by my wife's elbow), minor surgeries on my feet—and the list goes on. My mission is to care for the love of my life while forgetting or ignoring the physical pain that would put most on the sidelines, as it would me if I led a normal life.

My mother, Hazel, presented her early symptoms in 2002, and my wife, Lynne, presented in 2000 but was not diagnosed until 2006 at the age of fifty-eight. My caregiving knowledge and skills come from caring for the two most important people in my life. These skills also come from being involved with Alzheimer's support groups and observing at the Alzheimer's care facility that my mother entered in 2007 when I was no longer able to care for both singlehandedly, simultaneously, and at two locations. For over two and a half years, my mother lived in an Alzheimer's care facility that we called Happy Valley.

I feel the mission I was given—to care for two Alzheimer's patients—was given to me so I could provide the best care possible and be their voice with the medical professionals while I could hopefully use my sense of humor to lift the spirits of my AD victims, family members, friends, and the people I have met along the way. And maybe I could also educate new caregivers and the uninformed about this disease and how it affects everybody. Then maybe it is also my mission to warn the uninformed that this disease is not just the disease of their parents and grandparents. It is also the disease of spouses, siblings, and children.

Through all the never-ending days, sleepless nights, and times of wondering what's next and how I am going to handle it, I have maintained my sense of humor. It helps me cope and often hides the pain of watching this slow-motion nightmare play itself out. It seems odd to still have a sense of humor, but little can be done to help the victim unless you can keep your head in the game and keep from upsetting the person you are caring for.

I find as I speak with people about caring for my two AD victims that maybe my assignment was not just random chance but guidance from a higher power. Many people will care for a parent or grandparent who suffers from Alzheimer's. It is more common than many think. But why did I get two? While you can do most anything with written instructions, you usually learn best with hands-on training. I am sure that the few years I cared for my mother comprised my apprenticeship, preparing me for the long haul of caring for my wife. Lessons learned while caring for my mother, watching the staff at the assisted living facility, attending support groups following my mother's diagnosis, and meeting other families experiencing Alzheimer's all occurred before Lynne was diagnosed. When we finally got Lynne's diagnosis, I already had exposure, limited knowledge, and experience with the disease. So maybe the double dose of AD wasn't a curse but a blessing in disguise. And for some time, it was very well disguised!

Just who am I? Many times while dealing with this disease that has robbed me of my wife and my mother, I have asked myself the same question. I must tell you that I'm not a writer; I'm a storyteller. The wealth of experience I have with Alzheimer's care comes from caring for two drastically different Alzheimer's patients simultaneously.

Many have called me a hero, a good man, an expert, and even a saint. Many are amazed at my positive attitude, strength, and resilience in the face of such insurmountable odds. Others are surprised that I don't spend what little time I have available being mad at God for allowing such a disease to invade our home, the drug companies for not finding a cure, and the numerous doctors who failed to help us.

As I travel along the often rocky and always unpredictable path that is Alzheimer's care, I have found many people who want to know more about how to manage what some call the "long good-bye." Many have marveled that I have maintained a positive attitude and my sense of humor while many more wonder how I do what I do. But so many just want to know why I chose the role of solo caregiver. It's got to be more than love; it sure isn't for the glamour or the money. And it certainly is not for the challenge of seeing how long I will survive on too little sleep, too little exercise, and not always taking the best care of me.

Am I a control freak? Do things always have to be done my way? I answer a resounding yes to...