Christine Bryden - Before I Forget: How I Survived a Diagnosis of Younger-Onset Dementia at 46

Thank you to Andrea McNamara of Penguin for believing I had a book in me, and sticking with that thought for a couple of years after hearing me on radio. Thank you Sarah Minns, for without you there would be no book, only notes and a chapter or two. It was great to work with you and to share my life. You know more about me than almost anyone else does! And thank you to our wonderful editors, Jo Rosenberg and Clare James you did a terrific job.

Thank you, Ianthe, my eldest daughter, for being my first carer, delaying your studies and living nearby, looking after not only me but also your sisters. You stood up for me and for yourself during my first marriage, and graciously forgave me for not protecting you, and for not leaving far earlier. Thank you Rhiannon and Micheline for forgiving me for not being able to deal with my diagnosis, retreating into depression and leaving you alone in your grief. All of you have graciously also forgiven me for the years of dysfunction that preceded that diagnosis, despite the huge impact this trauma has had on your lives.

Thanks most of all to you, Paul, my dear husband, for coming into all of our lives as our rock, stitching us back together over the years, steadfast in your love and patience. You gave us all hope in a new future. As my enabler you have released me into functioning as best I can, and in so doing lifted the burden of care from the shoulders of my daughters. With you by my side, I have been enabled to become an advocate of people with dementia here and around the world, becoming a voice for the voiceless.

To my daughters and to Paul I owe my life Im still here because of your unconditional love and support.

Please note: a selection of my talks from the past twenty years can be found in my book Nothing About Us, Without Us (Jessica Kingsley Publishers, 2015), including the talk by Morris Friedell and me described on pp.1768 and the Dementia Prison talk mentioned on p.266. The Farmhouse Incident on pp.1823 appears in Dancing with Dementia (Jessica Kingsley Publishers, 2005) and is reproduced with the permission of the publisher. The 5 Simple Steps to Maximise Your Brain Health on pp.2412 are courtesy of Alzheimers Australia (see yourbrainmatters.org.au).

For my husband, Paul,

who enables me to struggle to survive.

For my daughters, Ianthe, Rhiannon and Micheline,

who have come through the trauma to a place of peace.

For my grandchildren, who I never dreamt

I would get to meet and love.

For all those who have been or are being diagnosed

with dementia, and those who support you.

VIKING

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First published by Penguin Group (Australia), 2015

Text copyright Christine Bryden 2015

The moral right of the author has been asserted.

All rights reserved. Without limiting the rights under copyright reserved above, no part of this publication may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise), without the prior written permission of both the copyright owner and the above publisher of this book.

Cover and text design by Adam Laszczuk Penguin Group (Australia)

Cover photograph by Andrekart Photography/Shutterstock.com

penguin.com.au

ISBN: 978-1-76014-110-3

THE BEGINNING

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Preface

If you were told you were going to meet a retired woman who has had dementia for twenty years, you probably wouldnt expect to meet me. I am sixty-six, still able to hold a conversation, still able to laugh, still able to follow the news. I dress well, get my hair done regularly, walk the dog every day. I dont live in a nursing home. I travel. I like to read.

Some people are bothered that I can do all these things. Some want to know why I have managed to live a normal life for so long when other people with dementia seem to deteriorate so fast. Some even think Im faking it that there is, in fact, nothing wrong with me.

Id like to partially address these reactions to my situation before I start telling my story, even though the answer is complex and I cant completely explain it. First, I should state that the form of dementia that I have had for twenty years is atypical. It is progressing far slower than dementia does most of the time, and there isnt a good explanation for why this is. I have been assessed by respected neurologists and neuropsychologists; I have had scans to show the progression of the dementia in my brain. But nobody knows what kind of dementia I have or why it hasnt killed me yet. We just dont know enough about the brain to figure this mystery out.

As to the question of faking it well, yes. I fake it every day. I fake being a normal person. Every single day is a struggle for me and occasionally I take to my bed. Sometimes for hours, sometimes for days, just from the exhaustion of travelling, smiling, talking, thinking and responding.

When I speak, most of my sentences do not have the words or grammar I seek for them, and I speak much slower than I once did. I feel constantly disappointed with myself, and worry all the time that I will get lost in the middle of a sentence. I used to be so good at words they were my thing. Now it seems as if each day more words are disappearing, like stars flung out into the vast universe.