Before the Diagnosis: Stories of Life and Love Before Dementia

By Gincy Heins

This book is a love story and a labor of love. It is an anthology of stories by 36 authors, each about a relative they have known and loved before that person was diagnosed with Alzheimer’s disease or another type of dementia.

First and foremost, these stories are about human beings. They are about moms, dads, attorneys, teachers, sailors, dreamers, doers, and lovers. They are about people like you and me; people with hopes and plans for the future who lived, or are still living, a life worth remembering.

I hope what you read in these pages touches your life.

• Language: English
• Publisher: Lulu.com
• Release date: Feb 25, 2018
• ISBN: 9781387623273

Book preview

Before the Diagnosis: Stories of Life and Love Before Dementia

Before the Diagnosis:

Stories of Life and Love Before Dementia

Edited by Gincy Heins

Thank you for reading these stories of life and love.

© 2018 Gincy Heins

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system without permission in writing from the author or publisher.

Published by Advocacy Press, Sacramento, California

ISBN 978-1-387-62327-3

First Edition

Dedication

This book is dedicated to all individuals impacted by any type of Alzheimer’s or dementia and the people who love them.

Preface

This book would not be possible without the 36 amazing individuals who opened their hearts to tell the world about someone they love. While a few of the authors are previously published authors, the majority are not. All of the authors willingly shared their story to keep their loved one’s memory alive and to help remind us all that a person with an illness is a person first.

I am forever grateful to everyone who participated in the making of this book. A huge thank you goes out to Phyllis Greenberg who helped me with the initial editing of the stories, making sure each word counted while keeping the essay in the author’s voice. An equally huge thank you to Laurie Theurer for her advice and input about the publishing process. Thank you to Pegi Foulkrod for providing a review and final edit of the stories. Thank you to Trish Hughes Kreis for taking on the challenge of publishing this book.

Thank you to Alzheimer’s Orange County for their help and support since the day of my husband’s diagnosis. Knowing you are there for me and everyone else who reaches out to you brings immense comfort.

Thank you to my husband and son for listening to me discuss this book and helping me work out my ideas.

Introduction

This book is a love story and a labor of love. It is an anthology of stories by 36 authors, each about a relative they have known and loved before that person was diagnosed with Alzheimer’s disease or another type of dementia.

First and foremost, these stories are about human beings. They are about moms, dads, attorneys, teachers, sailors, dreamers, doers, and lovers. They are about people like you and me; people with hopes and plans for the future who lived, or are still living, a life worth remembering.

Too often, once someone receives a diagnosis of any type of dementia, they are seen as just that; a person with dementia, and are no longer seen as the amazing individual they are. They may be viewed as someone who is quiet and shy when in reality they are extremely intelligent and outgoing. We hope this book opens eyes and helps the world see people with any type of dementia as people first, and who they were before the diagnosis.

Thank you for choosing this book. I hope what you read in these pages touches your life.

Part 1: Mothers and Fathers

The Prophecy

By: Chau Vuong

Vinh Vuong was officially diagnosed with frontotemporal dementia in 2012 at the age of 64.  The disease progressed rapidly and Vinh passed away December 2, 2017.

My dad knew that the disease was coming for him. 

Ever since I could remember, my parents have had an inexplicable, strange obsession with fortune telling, relying on it as a primary tool to guide their lives and drive their actions for every major decision or crisis.  Years ago, my parents befriended a couple of people who boasted the self-proclaimed gift of foresight.  One man could produce a person’s entire life plan just by calculating, using a unique numerological formula, a person’s name, birth date and his exact birth location coordinates.  Another friend could take one look at a person’s facial structure, and from there determine his fate and fortunes.  Between the divinations of these two people, my dad deduced somehow that in his sixth decade of being on earth, something grim and ominous would take over his life. 

I share this anecdote because it was precisely this prophecy that defined my dad for the rest of his life, up until his diagnosis.  In his Buddhist mindset, my dad believed that if he lived righteously and did good by others, then maybe, just maybe, he could dodge fate and undo what had been prophesied. 

And this was easy for him because my dad was inherently a genuine, good person.  He always saw the best in others and treated everyone he met with respect and kindness.  He owned a business for over two decades, a tropical plant nursery, and routinely gave away his profits to charitable organizations, without ever blinking an eye.  Later on, my dad began to research how to make his own medicine from plants he grew at his nursery.  His reputation in the community spread and, over the years, dozens of cancer-stricken customers would come to our nursery where my dad gave them his medicinal creations, without ever asking for any monetary compensation.  If people insisted on paying, my dad would direct them to a jar reserved for funds that went towards aiding orphans in Vietnam.  My dad was a simple man, with simple wants in the world, who lived by the virtues of Buddhist teachings.

Still, the thought of what was to come plagued him and he worried about the prophecy constantly.  At one point, my dad even considered leaving behind his entire life – his work, his family, all the material wealth he had – to join a monastery and preemptively repent his spiritual ignorance so that the prophecy could potentially be reversed.

My dad was officially diagnosed with frontotemporal dementia in 2012 when he was 64 years old. 

I will never explicitly admit it anywhere else but there ultimately was truth in the cursed fortune he had sought out years ago.  I often wonder how much happier he might have been not knowing the prophecy.  He spent his entire life worrying about it and, in the end, he could not escape it. 

I do not, however, wonder if he would have been a different person.  Before the diagnosis, my dad was an incredible man. 

That prophecy and this disease never took that away from him.

__________

Chau Vuong is a communications and marketing professional residing in Southern California.  Her passion is working with nonprofit organizations to help them craft and tell their unique stories. Currently, she is the Communications and Marketing Manager for Alzheimer's Orange County in Irvine, California, a cause close to her heart given her father, Vinh's, battle with frontotemporal dementia.  She is the youngest of Vinh’s two daughters. 

When I Met My Mother

By: Kathryn Harrison

Bonnie Harrison was diagnosed with young onset dementia in 2005 when she was only 62.  She died of complications related to this dementia in 2010.

When I was a child, my mother, Bonnie, seemed to possess invincible power.  She was a steady force to keep my older brother, my twin sister and I organized, clothed, and well fed.  She also had a passion for creating, and could make almost any Halloween costume, Christmas goodie, or birthday cake we could dream up!  What’s more, she seemed to always be available to give us the support we needed.  Usually, she pushed us gently to do our best.  When we were stuck on something, she never told us the answer but firmly encouraged us to solve it ourselves.  Her words follow your heart were ever present in our minds.  Sometimes it was frustrating, but her unwavering power and faith carried us forward.  Because she believed in us, we believed in ourselves.  She was our superhero!

My mom took her efforts further, passing on her power outside the family, helping others pursue their best.  She started a swim team for the kids of our town so they could strive for their goals in the pool.  Later, she got her real estate license and was suddenly, Bonnie Harrison, top realtor in our community, helping clients find their dream home.  She often talked about how good the people she encountered were, capable of great things, especially with just a little extra boost.  My mom liked to be that boost and never would settle.  She confidently believed everyone’s dream was attainable! Her steadfast mantra during those years? With persistence and positive thinking, anything can be achieved.

Like most superheroes, Bonnie was also very mysterious.  Who was the real woman behind the hero? What was driving all of this? Where did her power come from? I was lucky enough to uncover so much more about my powerhouse mom when I joined her in the pursuit of her own dream.

As a realtor, my mom often got to step inside beautiful old homes, with expansive gardens and opulent furnishings.  Living in a modern bungalow herself, she frequently commented on how much she loved these grand heritage houses.  When one of her best friends purchased a vast antique estate, and turned it into an inn, it was a eureka moment for my mother.  I want to run an inn too! she exclaimed.

Since my siblings and I were no longer at home, she and my father were free to live anywhere they wanted.  Her persistence and positive thinking were finally brought to bear on making her dream come true.

As Bonnie began to tackle her dream, something really wonderful happened; I was invited to play a part.  Being a recent business graduate, I had some useful knowledge to share and, unlike anything my mother had done before, my participation was eagerly sought.  Reflecting now, I realize it was wonderful to be involved in creating something special with my mom, but what was most amazing was truly discovering the woman who was my mother.  While accompanying her on house viewings, furniture shopping, and visiting decorators, we brainstormed about names and strategies to fulfill her dream, I started to really get to know Bonnie.  I met my mother as a woman, a business partner, and a friend. 

With efforts underway, I witnessed my mom’s tremendous vitality.  She never complained.  She never gave up.  She went way beyond what was needed, tirelessly working on their newly purchased fixer-upper house to transform both the home and the garden into a place of enchantment.  With a lot of help from my diligent, hardworking father and a little help from me and my husband, Bonnie