eBook
Available on Compatible NOOK devices, the free NOOK App and in My Digital Library.
Related collections and offers
Overview
Product Details
| ISBN-13: | 9781466948785 |
|---|---|
| Publisher: | Trafford Publishing |
| Publication date: | 10/10/2012 |
| Sold by: | Barnes & Noble |
| Format: | eBook |
| Pages: | 238 |
| File size: | 524 KB |
Read an Excerpt
Never Giving Up & Never Wanting To
A Caregiver's JourneyBy Barry Tutor
Trafford Publishing
Copyright © 2012 Barry TutorAll right reserved.
ISBN: 978-1-4669-4880-8
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 both questions, especially when it comes to Lynne's comfort and care. While the list of dementia and caregiving "experts" floating through my life grows, everyone has an opinion, a suggestion, or a thought on how I should handle our situation to take some of the pressure off myself. Most of their input is appreciated because it shows that at least some people have concerns for someone other than themselves. But as the disease continues, Lynne and her care are the most important things I have to be concerned with as long as she needs me. What's best for Lynne always takes precedence over my needs and my never-ending twenty-hour workdays.
Why do I spend twenty hours a day (on average) taking care of someone who has reached the stage of "I know you belong here, but who are you?" Yes, it breaks my heart to see my wife in this constant state of confusion punctuated by the very occasional spontaneous smile or laugh that always seems to come just at the right time but is gone as quickly as it came and may not return for days. These happy moments tell me that, at some level, she is still in there, and there is absolutely nothing I or anyone can do to bring her back. This is not only too bad for her, but also a tremendous loss for anyone who knows or knew her.
I have often been asked, "Why don't you get some help or just put her in a nursing home?" The answer is simple. When Lynne and I married, it was for the long haul—no matter what. You know the "richer, poorer, sickness, health" thing? We both took it seriously. So now that I am caring for her in what amounts to the twelfth year of her disease, I still maintain that as long as I am able to draw breath, I will care for her—whether she knows me or not. And I will never give up on her. It is possibly the ultimate demonstration of love—never giving up and never wanting to. It is not the jewelry, flowers, or expensive gifts on birthdays, anniversaries, and holidays that show how much we love. It is the sacrifices made when a terminal disease thrusts itself into a relationship.
My job is to care for Lynne, which means getting progressively less sleep. In year five, my typical night's sleep was about seven hours. As the years have gone by, I am now lucky to get four hours most nights and the occasional catnap, depending on Lynne's needs and her sleep patterns. Until October 2007, I also had my restless, often agitated early-and middle-stage AD mother two doors up the street. She thought nothing of calling at any hour of the day or night, having "heard something." This situation did not add to my sleep quantity or quality.
These numbers are just general estimates of how much sleep I manage to get, because there have been several nights that I have not slept at all because of Lynne's restlessness or her need to frequently use the bathroom. And while it is convenient to blame Lynne, my mother, and Alzheimer's for my sleep deprivation, I will admit that part of it is my fault. I am historically a light sleeper, and if I wake up during the night for any reason, I usually wake up so completely that it is difficult for me to go back to sleep. I don't recommend sleep deprivation week in and week out. So why don't I follow my own advice? I can sleep once my job of caring for Lynne is over.
I am also asked how I manage to stay awake and be functional twenty hours a day. I use no stay-awake drugs. I am caffeine-free and do not consume power bars or drinks. Since I am diabetic, I don't recharge with sugar. What is my explanation? Along with many other caregiving blessings, God has blessed me with the ability to function on little sleep, and He has given me the ability to go from zero to sixty the moment I wake.
As a solo caregiver, I am in caregiving mode twenty-four hours a day, seven days a week, 365 days a year. The role of solo caregiver is definitely not for everyone, and I highly discourage the practice if at all possible. What is my key to success? I sit as little as possible. When you sit, you relax, and sleep is just moments away. After surviving for years on so little sleep, you would be amazed how quickly those eyelids clamp shut when taking a moment for yourself. As a caregiver, there is almost always something to do that will keep you moving. If you run out of things to do, you are better at this caregiving thing than you give yourself credit for.
Something that surprised me as Lynne's disease progressed was that I have grown as a person, and I also feel that I have assumed some of my wife's personality since her decline began. I basically became both of us, because the strengths she brought into our relationship had to become my strengths also, or they would be lost. Throughout our relationship of over thirty-five years, we became essentially one person. Together, we make a great combination.
Something I noticed as the disease progressed was how I talk about Lynne and her condition. At first, I said, "My wife is ill" or "My wife is not feeling well." Then "ill" became "quite ill" or "very sick." I may have even used the word "dying" somewhere along the way.
Then one day, I said the word "terminal." As a layman, I have a strong knowledge base when it comes to Alzheimer's disease, and I can and do talk at length intelligently to anyone about the disease. I knew from the moment of diagnosis that living with Alzheimer's is a fatal, no-cure, no long-term planning, no golden years together scenario. The use of that word at that moment hit me; the woman I spent more than half my life with, adored, loved, and just always wanted to be with was going to be taken away from me little by little, brain cell by brain cell, until there would be nothing left but a hollowed-out shell of a person totally dependent on me every day for everything. This is when I finally understood the two rules of Alzheimer's disease. Rule one is that this disease is stealth, unrelenting, unforgiving, and uncaring; shows no mercy; maintains no age, sex, or race bias; and is irreversible. Rule two is that you can't change rule one, no matter how hard you try, no matter how hard you pray.
I want you to know my parents, Grady and Hazel Tutor. They were born and raised within a few miles of each other in Harnett County, North Carolina. They met and married in 1943 in Washington, DC, while he was stationed at Marine Corps Headquarters, Washington, and she was an Army civilian also working in Washington. I came along in 1952.
I introduce you to my father since he was unknowingly instrumental in how and why I care for others. He passed away in 1965 from a malignant brain tumor. My devoted mother was at his hospital bedside every day for nearly six months. With my father's passing, my mother fell into a deep depression that lasted for several years. At age twelve, since I was an only child, I was not only the man of the house, but I also pretty much had to grow up on my own. This situation gave me some perspective on how to deal with the problems that come with a family member with a terminal disease and its effects on the family.
When my father was diagnosed and hospitalized, his illness placed my mother in the position of being a single parent and a working mom. We were fortunate that back before the two-income family was commonplace, both of my parents had civilian positions with the US Army. My dad worked at Fort Myer in Arlington, Virginia, as a laundry and dry cleaning equipment mechanic, and my mother worked at the Pentagon as a computer systems analyst.
In my pre-caregiving days, I handled my mother's investments as well as ours, owned and operated two businesses, gardened, worked on our house as well as my mother's, and did the various chores inherent to homeownership and parenthood. This was frequently interrupted by one of our mothers needing help with something, needing a ride somewhere, or just needing someone to talk to because they were bored. Their close proximity made me the obvious target. Lynne's mother, Mary, lived with us, and my mother lived two houses up the street. Many times, usually in the middle of a project, I would hear the pitter-patter of little mother footsteps, which would always lead to, "I won't stop you, but I ..." This, of course, always meant, Stop everything, and pay attention to me.
I certainly did not expect at any point in my life to get a free pass from God. So I just screw a smile on my face and just keep on going. I tell people I'm just like a duck. On the surface, you see a peaceful calm. But under the surface, what you don't see is the duck paddling like hell against the current so he won't be swept away.
I talk with God on a daily basis. The questions I ask are simple: Why us? Why Lynne at her young age? What can I do to better help Lynne and the others who are facing this turmoil? After years of asking, I have no better answer than to keep going, keep trying, and do your best. I also speak with God frequently about the lottery, and I'm still waiting for an answer on that.
I have tried not to embellish, exaggerate, or tell our story so that I always come out as the hero. Though many disagree, I am not the hero of this story. I am just a guy who fell in love with a petite brunette with a melt-your-heart smile and gorgeous blue eyes. Like my mother and the millions of other Alzheimer's victims, Lynne did not ask for this insidious disease. We have fought every symptom as long and as hard as we could, knowing we could not avoid the inevitable. And if you have not figured this out yet, I will continue to be at her side, helping her until God calls her home.
Many people have told me over the years that I needed to write this book. Some words of encouragement to help other caregivers in their daily battles in this seemingly never-ending war. After you read this, you will probably think, I hope he is a better caregiver than he is a writer. Trust me; I am.
Chapter Two
Us Everlasting
Soul mates, split-aparts, twin souls, bashert, a match made in heaven, two peas in a pod, two halves of the same whole ... and I am sure there are scores of other words and phrases used to describe the perfect relationship. While definitions, interpretations, and over analysis have, in some cases, muddied the meaning, Lynne and I truly feel that Richard Bach said it best: "No matter what else goes wrong around us, with that one person we're safe in our paradise. Our soul mate is someone who shares our deepest longings, our sense of direction. When we're two balloons, and together our direction is up, chances are we've found the right person. Our soul mate is the one who makes life come to life." Thomas Moore wrote, "A soul mate is someone to whom we feel profoundly connected, as though the communication and communing that take place between us were not the product of intentional efforts, but rather a divine grace. This kind of relationship is so important to the soul that many have said there is nothing more precious in life."
Lynne and I met in May 1976 shortly after my twenty-fourth birthday and shortly before her twenty-ninth. She had recently joined the company I had been working for since 1974. I was assigned to educate her on the work we did so she could develop quality control procedures and write a procedures manual for new employees. Much to the chagrin of my boss, we spent several hours nearly every day over the next few months working together so she would understand what we did to support the US Navy's Fleet Modernization Program. In all this time together, we became friends. We were just friends—not friends with benefits, just friends. We were only friends because we were married, but not to each other.
We met when my boss walked Lynne over to my desk, announced, "You work with him," and walked away. After I found a chair for her, she sat down and confidently said, "Hi, my name is Lynne."
I responded with, "That should be easy to remember. My middle name is Len." With that, we discussed the variations of the name. Each day following, we sat and discussed the various parts of the work our group did for the Navy and chatted about our lives outside of the office. Our friendship grew quickly and continued to grow until Alzheimer's disease took over.
The company we worked for discouraged dating or marriage within the company, so once we had a relationship, it was kept totally out of the office. Though some suspected, there was never anything more than two coworkers occasionally going to lunch together. We managed to keep our relationship a secret, including our marriage, until I left the company for greener pastures in March 1983.
(Continues...)
Excerpted from Never Giving Up & Never Wanting To by Barry Tutor Copyright © 2012 by Barry Tutor. Excerpted by permission of Trafford Publishing. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Contents
Preface....................ixOur Fairy Tale....................xiii
Acknowledgments....................xv
Me—Caregiver....................1
Us Everlasting....................9
Lynne's Background....................15
Lynne's Alzheimer's....................19
Lynne's Stories....................27
Lynne—Published Author!....................31
Hazel's Background....................35
Hazel's Alzheimer's....................41
Mary/Grandma/Mom....................47
People....................49
Touring the AMA....................65
Alzheimer's Facts and Figures....................73
Planning for the Present and the Future....................91
Caregiver's shopping and Wish List....................111
Caregiving in the Real World of Alzheimer's....................119
Controlling the Caregiving environment....................143
Delusions and Hallucinations....................147
Sundowning....................151
Activities of Daily Living....................153
Alzheimer's Assisted Living Facilities....................159
Hospice Care....................169
Clinical Trials....................173
stories from the Real World....................181
Many Lessons Learned....................195
You—Caregiver....................201
My Closing, My Challenge....................207
Resources and other Information....................211
The Seven Stages of Alzheimer's....................213
Possible Signs of Alzheimer's disease....................219
The Internet Resources....................221