With heart-wrenching honesty, Donald’s Story chronicles the last days and years of one family’s drama through the hell which is Alzheimer’s dementia. This story will make you cry, make you laugh, and make you think. It’s a must read for anyone who will ever get old – particularly for anyone who may one day be a caregiver, an AD patient, or a supportive family member of the same.
The suffering wreaked from terminal dementia is a saga which is becoming all too familiar. As the 6th leading cause of death in the U.S., Alzheimer’s and related dementing illnesses are epidemic. How do you survive this disease which robs you of your very self? How do you survive watching someone you love slip away?
Complete with "AD Survival Tips", Donald’s Story is not just a memoir. It is also a planning tool and a survival guide for dementia families, providing a roadmap through the tangled darkness. Still, despite the subject matter, this memoir is not wholly dark. How could it be when it is first and foremost a love story? Loving deeply and forever may render us vulnerable to pain, but therein lies the meaning of life. When all is said and done, Donald’s Story is most purely a reminder of just how precious life is.
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DONALD'S STORYOne Family's Journey Through the Tangled Darkness of Alzheimer's
By Gina Moreno Wilson
AuthorHouseCopyright © 2013 Gina Moreno Wilson, J.D.
All right reserved.
Chapter OnePART 1
"I'm getting dumber every day, but I still know who I love."
These words will echo in my heart and mind for the rest of my life. They are the words of a man whose mind was slipping away and he knew it. The words of a man who clawed with every ounce of will and faith to preserve his memories of his family. The words of a man who fought with dying strength to retain his understanding of the enduring family love which had defined his life. The words of a man who couldn't remember the name of a simple wristwatch or toothbrush, but days before he died would tell his wife of sixty years, "I love you. I've always loved you ..."
Yes, these were the painful words tenderly conveyed by a father to a daughter, to me, as I held him close in the late stages of Alzheimer's disease ...
As a lawyer, a former editor, an entrepreneur, and a school director, I've written for years: for my education, for work, for pleasure and for sheer escape, but never before for preservation. Until now I've begun several projects only to set them aside far too often for one reason or another. Life simply gets in the way. With a couple of notable exceptions, writing thus far has been recreational—not required. Hence, I have never really felt driven to complete many of my works. Until now, you see, there was no deeper motivation, no real emotional investment. It's not surprising then that the focus often dwindled for lack of purpose. Like souvenirs we collect along life's path, partial manuscripts and outlines sit stacked among my treasured papers.
With the escalation of my father's illness, everything changed. I found my life turned upside down. It was not a road I had chosen; fate had chosen it for me it seems. Ultimately though, I am sure there is a reason for that. And as hard as it all has been, I know there were lessons to be learned and lives to be touched. Still, how many times over the past years and months would I ask myself, or those around me, if this were really my life. Often it felt more like a Lifetime movie. I learned firsthand the origins of the expression, "Truth is stranger than fiction."
So, here was the book I had to write. It was not a recreational project; I didn't want to relive in words the horror I was living. But I felt driven to document this dark world in which I found myself. I had to be my father's voice. I had to complete this project because it was a story which needed to be told, and no one else could tell it. And really, how farfetched was it anyway? It wasn't like I'd be starting from scratch. I had been journaling this nightmare all along. It was my therapy, my outlet, my salvation even. Why not give it all a formal finish?
To you, dear readers, I warn ahead of time that this little book is filled with big emotions. It is raw and it is honest. It grew out of my journaling and my pain. It blossomed with old memories and evolved with the creation of new ones. At times it may seem like a stream of consciousness, because it was.
Reflecting now, I am reminded of the life experience of one of my favorite authors, Louisa May Alcott. Ms. Alcott was a well-known 19th century American writer, but this was not always the case. Alcott had written many works before gaining recognition. Often these were works of sensational fiction, a popular literary style of her era. But Little Women was different. It was semi-autobiographical in nature, a tale from her heart as it were, from her own life experience. With Little Women, Alcott gained not just recognition, but respect.
While my book is not about gaining respect or promoting an agenda, it is, like Little Women, a tale from my own life experience. It is not a light "feel good" read, and it was not fun to write. But it was written from my heart. In many ways, in fact, it is a book which wrote itself. Reflecting now on the path I have walked, I only wish the wisdom gained by the end had been available to me at the start of my journey. For me, I know that Donald's Story, is a book which I wish I could have read some five years back or more.
We've all been given talents and outlets in this life which are uniquely our own. I believe that these talents are tools—tools for our own enjoyment and edification, and tools which can be used in service or gift to our fellow creatures. Developing and using our talents is personally gratifying, and if it is useful or a source of joy or comfort to others at the same time, all the better.
So here is my purpose. Here is how I must use my efforts and talents at this given moment on my life journey. Now with a clear purpose, I have a story to tell. It is a story which is at once both heartbreaking and heartwarming. It is a true story of my own family experience, but, unfortunately, millions of others will read their own lives in these pages as well. To them I say, you're not alone. I understand you. I am you.
Statistics tell us that by 2020 over 9 million of the U.S. population will suffer from Alzheimer's disease (AD). Today, it is the sixth leading cause of death in the United States with nearly 5.4 million sufferers in America alone. And this number doesn't even account for those suffering from other forms of dementia or those who have not yet been formally diagnosed.
As modern developments in health science allow man to live longer than ever before in history, we find that our parents and grandparents need no longer die from the previous killers of the aged—pneumonia, heart disease, even cancer. Indeed, the human race is living longer than ever before. But almost in cruel rebuke, Mother Nature says, "Aw, but die you must, mortals. So what will it be? Pick your poison ..."
So we save ourselves and our loved ones from cancer, only to be delivered later into the hands of degenerative dementia. Once on that path, you find yourself wishing the body were not so strong! You find yourself praying, begging, for a friendly heart attack in the night. Oh, pneumonia, the "old man's friend", where are you now? Think I'm kidding? This is a staggering and terrifying reality.
What then can be done? If this is Nature's trump card, then Nature needs to be put in check. As always, it starts with education and it ends with compassion. Education is our key to preventing and curing this perverse killer which robs you of your very self. And education is the key to coping with the devastation Alzheimer's leaves in its wake. Until AD is put in check, the reality of its nature and expanding presence in our population must force us to ask some hard questions about end life goals and treatment choices.
When I realized that I was on this journey with my family, the journey Ronald Reagan knew would lead him into the sunset of his life, I hungered for knowledge and for answers. I still do. Scientific information is ever evolving and changing in this field. No doubt. But what doesn't change is the human impact of this affliction on its victims and their families.
At the beginning of this writing, my journey was not over. But I couldn't wait to share my experiences with you. In these pages you will see just a glimpse of one family's walk through the darkness which is Alzheimer's dementia. It will not, and cannot, paint the entire picture of my experience, but it's a start. No doubt, if you have picked up these pages, chances are that you too are on your own journey. It is my genuine wish and prayer that this memoir may help you to better navigate the path. For those of you who have been blessed to not have Alzheimer's in your life, these pages will help you to spot early signs and to be prepared in the event this disease inevitably touches someone you love.
Reading this book will not cure Alzheimer's disease. It will not bring your loved one back to you, and it will not make you feel better. But, hopefully, it will raise awareness about this cruel affliction. And it will help you to "speak Alzheimer's", which is one key to compassionate caregiving.
Education begins with just one story, and I have a story to tell. It's the story of my father, my hero.
It's Donald's Story.
Chapter TwoPART 2
The Beginning of The end
Blood on the pavement. Tears and confusion. Police cars and ambulance. All conveyed by a stranger. How could this be?
Wednesday, September 30, 2009 was a typical workday.
As I made coffee at school, and checked my calendar, nothing indicated a precipice ahead. Call it "rut" or "routine", the bulk of our lives is often lived on autopilot. Of course, there are both benefits and detriments to this. On the one hand, beginning in childhood we experience that routine and structure breed a sense of security. Knowing what lies ahead promotes calm and well-being. On the other hand, when we repetitively go through our days without conscious awareness, we risk losing all the highs and lows as the years keep rolling along.
Inevitably, we are destined for one of those days that shock us back into reality and make us sit up and take notice of our lives. Wednesday, September 30, 2009 was one such day.
It was an otherwise typical morning at work when a call came in that would change everything. At the time, I thought it was just another routine inquiry when I was called to the phone. I walked to the front office and, with staff and customers present, took the call entirely anticipating having to answer questions about what makes my private elementary school unique. But on this fateful morning that was not to be.
"Is this Gina Wilson?" a stranger's voice asked somberly.
"Yes, it is," I answered somewhat hesitantly. I didn't recognize the voice on the other end.
"I'm here with your parents. There's been an incident."
My heart sank. Clearly, this was no routine call after all. But unexpected as the message was, it triggered a not entirely unexpected chain of events. When Shelli, my coworker, called me to the phone that morning I had no idea that the call I was about to take would be a dreaded turning point in my family's journey. On the other line, in fact, was a complete stranger who, fortuitously, had probably just saved my mother's life.
"I'll be right there."
The stress for me was physically poignant: I felt my heart rate increase, and the room seemed immediately warmer. My many work responsibilities, once again, were temporarily shelved, but it wasn't work stress that had me suddenly feeling like I couldn't breathe under the crushing weight of a crumbling world. Somehow, intuitively, I knew that a dreaded day had come. I was where I didn't want to be, where no one should ever have to be.
Caring for elderly parents under the best conditions can be emotionally taxing as one strives to accept the ironic role reversal which Nature has in store for us all. But caring for a demented parent is an experience like no other.
When you are little you are by nature so attached to Mommy and Daddy. At least I was. I can remember them tucking me in each evening and parasitically clinging to them as if to life itself. I remember the feeling of snuggling up to my Dad's strong back when I was about five years old and would climb in between my parents in their bed in the middle of the night. He made me feel safe and secure. Little did I know then that one day he would lean on me for those very same reasons and feelings.
My hand was shaking as I hung up the phone. "It's Dad. I've got to go."
My friend, Kelly, drove me to the grocery store parking lot where, apparently, there had been an "incident." I didn't know exactly what to expect. Dad had been experiencing an increase in agitation and delusions, and had just days before aggressively pushed Mom out of the house thinking she was stealing from him. I had been compelled to call 911 from work that day in order to protect my mother. Perhaps this was a repeat performance? Why was a total stranger calling me? Where was my mom?
Over the past two years my father's behavior had become erratic and unpredictable. One day he was still my dad, the next day lost to me in a place I could not follow. Still, I wasn't prepared for the scene awaiting me on this unforgettable morning.
When we pulled into the parking lot I was shocked to see three police cars and an ambulance arriving. What could possibly have happened to warrant all this? Could these really be my parents, Mr. and Mrs. Average Americans? People who had led rather ordinary, middle class lives, were now suddenly in the center of high drama?
I surveyed the scene which had, once again, forced me to leave work in a panic. My father was sitting in the passenger side of Mom's car, door open, two or three police officers at his side.
Head hanging, brows furrowed, he looked so frightened and confused. I remember thinking he looked so small next to the strapping, young policemen. Small and scared. Threatened, not threatening. His eyes met mine and I thought I saw a glint of recognition, but I wasn't permitted to go see him just then. That glint shot straight to my heart! I'm here, Dad. Why can't I save you? Why can't I just take you home and make all this go away?
My mother was standing with two other officers several yards away from the car. Now an officer was snapping my dad's picture. He looked terrified. This just seemed wrong. Were they going to arrest my 85 year old father? A supervisory officer immediately asked me who I was and proceeded to unfold the details for me.
Apparently my dad, who had spent the previous weekend in respite care at a memory care facility for the first time, was in a panic at the thought of returning to the facility. And why wouldn't he be? Here was a man who had always lived with his family. He'd gone from his grandparents' home to his wife's. He'd never been alone, with the exception of the years spent on an aircraft carrier in World War II. Being checked into an institution with strangers had to be horrifying to him. Even in his healthy days, he preferred over anything to just be with his family.
But the respite care had been necessary. It had been triggered by a hallucination at home in which Dad had pushed Mom out of the house and threatened her. Mom had tried so hard to keep Dad home with her. And for years she had been successful, tough as it was. It broke her heart to have us take him away. She felt like she was failing him, but we, Don's children, knew we could not sacrifice one parent for another. Still, rationalizing it didn't make it any easier.
Now as I looked around at the men in uniform, I recognized some faces. Some of these officers here in the parking lot had been present at my parents' home on that previous occasion.
Here's how this day's events had unfolded. When Mom had driven back to the care facility, Dad in tow, to retrieve some forgotten medication, Dad went into a panicked survival mode. So my mother wisely turned around and headed back towards home. On the way back to the house, however, Mom's repeated reassurances were insufficient to calm the agitation which escalated into what my mother referred to as a "full blown psychotic episode."
Whatever was going on in my dad's brain, he was clearly terrified. He didn't believe Mom, and he didn't trust her. Distrust and fear: two hallmark symptoms of dementia, as integral to AD as sneezing is to a cold.
In addition to the police officers present, an ambulance had arrived to check out my dad, and there was a young man present in street clothes that I later discovered was the man who had phoned me at work. He told me that he had come out of the nearby grocery store and had heard my mother repeatedly shouting, "Help!" After rushing over to her, he found my dad on top of her, with both old people on the ground in the store's parking lot. In a primal reflex which she later forgot, Mom was actually biting Dad's hand to make him get off of her. She didn't remember just then that he had been trying to smother her with that hand.
The young man, whose name I never caught, then showed me a small pool of blood on the blacktop. Mom's jacket sleeve was heavily stained with Dad's blood. Dad was bleeding from the foot, ankle and hand. It seems that my father had attempted to grab the wheel of the car and pull the keys from the ignition while the vehicle was still moving. Who knows who or what he thought was driving the car at the time. Mom managed, no doubt with the help of a guardian angel, to steer the car into a parking lot. Apparently she tried to run, but Dad grabbed her and they both ended up on the blacktop. Both were bruised and shaken. I have replayed these events in my mind's eye over and over. How scared they both must have been!
I had to permanently commit my father to a lock-down memory care facility that day. Mom rode with Kelly, and the police suggested that I drive my father while they followed us. Never before in my life had I ever been afraid or apprehensive around my dad, but today was different. While his mind was degenerating, he was still quite physically strong. He had just ripped the keys out of a moving vehicle. He had attacked my mother and held his hand over her mouth when she tried to scream for help. He had tried to hurt the one he loved the most. Who did he see driving that car? Who did he think he was attacking? When I drove him to the Cottages of Green Valley, who would he see when he looked at me behind the wheel?
Excerpted from DONALD'S STORY by Gina Moreno Wilson Copyright © 2013 by Gina Moreno Wilson, J.D.. Excerpted by permission of AuthorHouse. 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
ContentsPART 1: Forward....................1
PART 2: The Beginning of the End....................7
PART 3: Looking Back....................15
PART 4: How Far We've Come....................25
PART 5: A Thousand Deaths: Grief Stages the Alzheimer's Way....................31
PART 6: Now....................39
PART 7: Smog....................49
PART 8: More Now....................53
PART 9: Papa Can You Hear Me....................69
PART 10: Practically Speaking....................75
PART 11: Still More Now....................85
PART 12: Father-Daughter Memories....................89
PART 13: Letting Go....................109
PART 14: Conclusion....................113
PART 15: Epilogue....................129
PART 16: Resources....................137
PART 17: Of Interest....................141
PART 18: Endnotes....................147
PART 19: Acknowledgements....................149
Most Helpful Customer Reviews
An insightful book on the devastation Alzheimers can cause to those afflicted and the family and friends that love them. This book is recommended for those that are caring for an Alzheimers patient or are interested in learning more about the effects this disease has on all lives it touches. Lovingly written it is a good, informative read.