Donald’S Story: One Family’S Journey Through the Tangled Darkness of Alzheimer’S

By Gina Moreno Wilson

With heart-wrenching honesty, Donalds Story chronicles the last days and years
of one familys drama through the hell which is Alzheimers dementia. This story will make you cry, make you laugh, and make you think. Its 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., Alzheimers 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", Donalds 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, Donalds Story is most purely a reminder of just how precious life is.

• Language: English
• Publisher: AuthorHouse
• Release date: Feb 15, 2013
• ISBN: 9781463446925

Gina Moreno Wilson

Gina Moreno Wilson grew up in southern California, and has academic degrees in history, communications and law. She has lived, studied, worked and taught in Los Angeles, Washington, D.C., Dallas, Rome, Italy and Las Vegas. During the care-giving years chronicled here, Gina worked in education management while simultaneously raising two small children. With excessive work and family demands, Gina found her emotional and physical outlets in writing and running. She completed her first half marathon in her father’s honor just four months after his passing, fittingly beginning that San Diego run at the Naval cemetery at Point Loma. Currently living in Las Vegas with her two daughters, Sophia and Julia, Gina continues to be an advocate for dementia sufferers and for those who love and care for them. She is currently working on a memoir detailing her journey to dual citizenship, as well as a personal development book on life survival skills and personal and professional transformations. Gina currently writes and speaks on such topics as AD caregiving and support, personal and professional development and life plans, self-actualization and entrepreneurial start-ups. To have Gina speak to your group, please contact her at www.ginamorenowilson.com.

Book preview

DONALD’S STORY

One Family’s Journey Through the Tangled Darkness of Alzheimer’s

GINA MORENO WILSON, J.D.

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AuthorHouse™ LLC

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© 2013 by Gina Moreno Wilson, J.D. 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 07/11/2013

ISBN: 978-1-4634-4694-9 (sc)

ISBN: 978-1-4634-4693-2 (hc)

ISBN: 978-1-4634-4692-5 (e)

Library of Congress Control Number: 2011913813

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

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

PART 1: Forward

PART 2: The Beginning of the End

PART 3: Looking Back

PART 4: How Far We’ve Come

PART 5: A Thousand Deaths: Grief Stages the Alzheimer’s Way

PART 6: Now

PART 7: Smog

PART 8: More Now

PART 9: Papa Can You Hear Me

PART 10: Practically Speaking

PART 11: Still More Now

PART 12: Father-Daughter Memories

PART 13: Letting Go

PART 14: Conclusion

PART 15: Epilogue

PART 16: Resources

PART 17: Of Interest

Final Thought

PART 18: Endnotes

PART 19: Acknowledgements

DEDICATION

This book is lovingly dedicated to my father, Donald Vincent Moreno, the bravest man I know.

image001.jpg

Dad and Gina at the Santa Maria Country Club in 1993.

". . . In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clear understanding of the individuals and families who are affected by it… Unfortunately, as Alzheimer’s disease progresses, the

family often bears a heavy burden… I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead…"

Ronald Reagan

President’s Letter to the Country

Revealing His Alzheimer’s Diagnosis

November 5, 1994

PART 1

FORWARD

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).¹ Today, it is the sixth leading cause of death in the United States with nearly 5.4 million sufferers in America alone.² 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