Wong - Even when she forgot my name: love, life and my mothers alzheimers

To Queenie

First Edition

Copyright 2009 by Wong Chai Kee

All rights reserved.

Published in Singapore by Epigram Books.

www.epigrambooks.sg

With the support of

National Library Board Singapore Cataloguing in Publication Data

Wong, Chai Kee, 1952

Even when she forgot my name: love, life and my mothers Alzheimers / Wong Chai Kee.

Singapore: Epigram, 2009.

p. cm.

ISBN-13 : 978-981-08-2690-1 (pbk.)
ISBN : 978-981-07-3216-5 (epub)

1. Alzheimers disease Patients. 2. Alzheimers disease Patients Care.

3. Alzheimers disease Patients Family relationships.

I. Title.

RC523

362.196831 -- dc22 OCN313141468

Printed in Singapore

All rights reserved

No part of this book may be reproduced without prior consent from the publisher.

Cover design by

Andy Koh

Cover photograph by

Nicholas Leong

Illustrations by

Namiko Chan Takahashi

Special thanks to Aaron Lee Soon Yong

for permission to publish his poems

Nostalgia and Notes From a Diary

In memory of Pa, 1905-1989

Tell what is yours to tell. Let others tell what is theirs.

Margaret Atwood

Storytellers ought not to be too tame ...

If they lose all their wildness,

they cannot give us the truest joys.

Ben Okri

There are mountains in my mind

that I cant climb no matter how I try.

Smooth glass-like walls with no finger holds ...

I dream of wings, something with which

to ascend unassailable heights,

but my thoughts are mired in concrete ...

Robert D. McManes

Well, write it down also good.

My only regret is that I cannot write.

Ma

I record here the voice of my mother, and find myself amazed. What was it about this woman who spent not a single day in school, yet could read the Chinese dailies without using a dictionary? How did she, an overseas Chinese born and bred in middle-class comfort, survive ten years of toil in the wintry mountains of Fujian, China? How did Alzheimers disease fail to shut her up, after having shut down most of her brain?

Ma was diagnosed with Alzheimers on 9 January 2004. The disease diminished my mother severely, but it also brought out the bigness in her. The range had gone, but she showed new depths. In September 2004, I told her my intention.

You are so busy, she teased. Are you sure you have time to write? She flashed an impish smile, clearly liking what she heard. However, a week later, she said, Siah soo sai sze kian ... Writing book is wasting time. Her earlier delight had deserted her memory.

Ma, this book will be about how you brought us up. Ngee keh nai sim, ngee keh oi, ngee keh thung khoo ... About your perseverance, your love, your pain.

Well, write it down also good, she said, suddenly appeased. My only regret is that I cannot write. Her old words found their way back into her silent mind.

This book is my chance to present a paean to my mother, to share how she embodied unconditional devotion and unflagging dedicationin her youth, her married life and even during the impossible Alzheimers moments.

This is also my eyewitness account of how Ma fought Alzheimers from January 2004 to January 2006. She never looked for mountains. She climbed because she had to. This brain is becoming useless, she said. Memory strength compared to the past is no longer the same. Getting worse and worse. Dont know whats happening, anything also can forget. Many things, big things, small things, old things, new things.

Initially, she laughed off the occasional memory lapses as signs of growing old. She began to forget what she forgot, then forgot that she had forgotten. The periodic shark bites and perpetual piranha-nibbles of Alzheimers had crippled her faculties. Through it all, she saw herself never as mind-less, only as being slower and more confused.

Smooth glass-like walls with no finger holds. Losing a memory strand here and there derailed her efforts, and she would start over again. Words disappeared in dead calm then spurted out in a whirlwind. How could she keep track of thoughts that made dizzy leaps into nowhere, and everywhere? A coherent sentence suddenly turned gibberish. Yet, unannounced, she would throw out nuggets of wisdom, in defiance of inertia. With ingenuity and verve, my mother made her way out of the labyrinth, sneaking through any gap she could find. At every opening Alzheimers allowed, she rushed out bursting forth wit, wisecrack and wisdom, as if they were long overdue and curfew was imminent.

Yit ting yew lu zhute ... Theres always a way out, insisted Ma whenever an intractable problem loomed. She doggedly slogged across the swamp that her brain had become. She made the most of sleeping with an enemy that owned her brain. Even in her most desperate hours, Mas cry was Help me! or Do something!not, Let me die.

It started out the worst of times, but ended up better than she could ever have imagined. Alzheimers knew no mercy, yet gave my mother the happiest two years of her life.

If not for Alzheimers, routine ways would have persisted. Ma and I would not have exchanged so many I love yous. No other words meant as much or could express as much how she felt. Increasingly, it came down to matters of the heart. As her mind lost its way, her heart held sway.

If not for Alzheimers, my mothers life would be what Thoreau said of most peoplea life of quiet desperation. The brain silencer let Ma open her heart to me. She felt imprisoned, yet enjoyed a freedom she never knew. Lifes inertia kept on hold the feelings that so defined us. Her fears, small pleasures, anguish, grace, anxieties and hopes would have brushed by me like a breeze, would never have stirred my soul. Desperation broke through silence, joy surprised. Ma was carried away, so was I, and we rode on each others momentum.

If not for Alzheimers, we would not have talked about ordinary things, enjoyed simple pleasures, sucked durian seeds together. In the slowness of Alzheimers time, we prayed for each other, shared our thoughts, and expressed whatever stirred our hearts. In ways that never failed to take my breath away, she devoted ordinary moments to God. Her spirituality deepened. Eventually, everything good left Maher intellect, her passion for food, her love of family, even her ability to bounce backbut her devotion to God went with her to eternity.

I hope the reader is heartened by my mothers voice and inspired by her irrepressible character. Ma lived by two dictaKeep looking for a way out of ordeals that fate metes out, and Snatch whatever pleasure you can find, in or out of lifes distressful drama. Ma took to heart Dylan Thomas defiant cry:

Do not go gentle into that good night.

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

And with that battle cry, my mothers story begins.

Ma in her pensive youth.

My mother preached that. Everyone needs stories
they can live their lives by.

Robert Coles

Increasingly, I realised that I could not merely tell his story.

Rather, I would have to tell my story about him.

Ronald Steel

Nothing happens without consequences;