Keeping in Touch with someone who has Alzheimer's

130 Pages·2002·0.57 MB·English

by  Jane Crisp

Keeping
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If someone that you love has dementia, don’t N
believe the popularview that they are lost to G inTouch
you forever, living in a world of theirown.
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You CAN keep in touch if you want to. N

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Is it yourjob to care forpeople who have O
dementia? You probably know that if you U
spend a little time with them you will find C
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out how much they are PEOPLE with a
disease, not problems to be dealt with as w
expeditiously as possible. it with someone who has Alzheimer’s
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Jane Crisp writes, in an easy-to-read fashion,
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about the way she kept in touch with the mothershe loved and valued. She e
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gives practical ideas forhow we can involve someone we love in ourdaily n
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activities even when popularopinion would throw them on the scrap heap.
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This book is a joy to read and a resource to dip into forideas about how
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you, the family memberorthe professional carer, can celebrate and value a
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the lives of those who have dementia.
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Dr Jane Crisp retired recently as a lecturer in communication, media h
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studies and women’s studies at Griffith University in Brisbane, Australia. im
She now holds an honorary position there as Adjunct Senior Lecturer. e
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When Jane’s mother, who lived in New Zealand, was diagnosed with ’s
dementia Jane found herprofessional studies of great help in herefforts
to keep in touch. Since 1990 Jane has been studying the language of people J
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who are dementing, working out strategies formaking sense of the way n
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they speak. She has given talks on this work, and had articles published,
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both in Australia and overseas. She has spent much time in France,
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meeting and exchanging ideas with researchers and carers involved with s
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people who are dementing, and visiting specialised care units.
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Jane is married, with a son and a brand new granddaughter. U
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ISBN 0 9577988 2 2 P
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A A
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FOREWORD
Keeping in Touch
with someone who has Alzheimer’s
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KEEPING IN TOUCH
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ii
FOREWORD
Keeping in Touch
with someone who has Alzheimer’s
JANE CRISP
Ausmed Publications
Melbourne
iii
KEEPING IN TOUCH
Australasian Health Education Systems Pty Ltd
(ACN 005 611 626)
trading as
Ausmed Publications
277 Mount Alexander Road
Ascot Vale, Victoria 3032, Australia
© Ausmed Publications 2000
First published August 2000
Reprinted March 2002
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
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or otherwise), without the written permission of Ausmed Publications. Requests and
inquiries concerning reproduction and rights should be addressed to the Manager, Ausmed
Publications, PO Box 4086, Melbourne University, Parkville, Victoria 3052, Australia.
Further copies of this book and of all other Ausmed Publications are available from the
Distribution Manager, Ausmed Publications,
PO Box 4086, Melbourne University, Parkville, Victoria 3052, Australia.
Telephone [phone].
Fax [phone].
E-mail [email protected]
Home page www.ausmed.com.au
National Library of Australia Cataloguing-in-Publication data:
Crisp, Jane.
Keeping in touch with someone who has Alzheimer’s.
Includes index.
ISBN 0 9577988 2 2.
1. Alzheimer’s disease - Patients. 2. Alzheimer’s disease.
Title.
618.976831
Edited by Robyn Whiteley and John Collins, The WC Company Pty Ltd
Cover, design, typesetting and printing by Hyde Park Press, 4 Deacon Avenue, Richmond,
South Australia 5033, telephone [phone], e-mail [email protected]
Text set in 11/14 Slimbach
Cover: The author with her mother, Bettie, and Bettie’s friend Wally
iv
FOREWORD
Foreword
When Jane Crisp’s mother entered the world of dementia, Jane saw this not
as a tragedy, but as a challenge and a wonderful new opportunity for
communication with her deeply loved mother. Out of that very positive
approach has grown this book, one of the most remarkable books ever
written about dementia.
For too long, and purely as a result of misinformation, we have been quite
cruel to people with dementia. We believed that dementia meant that they
had become mindless and it was impossible to establish real understanding
with them. So we talked about them as if they could not hear what we were
saying; we talked pleasantly to them or even asked questions, but then
never listened for the answer. Worst of all, we stopped talking to them,
saying to ourselves ‘they are quite past it’. This total misunderstanding of
dementia arose out of the false concept of dementia as a disease.
It is now clear that, although dementia has its basis in some kind of damage
to the brain tissue, it is actually just a state of being in which people become
confused, but carry with them their past culture and experience, their
personal sense of who they are, an understanding of and response to their
social environment, and a great deal of their life resources.
If we can totally reject the old misunderstandings, and treat affected people
still as full people, with minds of their own, who are entitled to the total
respect of others, then people with dementia can live full and satisfying
lives. More importantly, they can still share their lives with us.
This book is Jane’s story of a joyful journey with her ageing mother — a
journey of love, continuing understanding and the excitement of discovering
new ways of being close to each other. But the story is told so that we can all
share in that journey and use the guideposts which Jane and her mother
discovered to make similar journeys with our own loved ones.
In the book Jane moves to and fro between her personal journey, on one
hand, and her sense of rigorous intellectual inquiry on the other. It is this
merging of personal experience with a research perspective that makes her
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KEEPING IN TOUCH
book so extraordinary. My own journey into the world of dementia has been
research-based and although that has given me a sense of just how wrong
our traditional concepts have been, it was crossing paths with Jane that
enriched my understanding immensely, and brought me to recognise and
fully accept the continuing social capacities of people with dementia.
I am delighted to invite you all to share in our journey from your
perspective, whether it be as a family member or as a professional carer.
Open your mind to really hear people with dementia, and I am certain you
can find it just as rewarding and exciting as we have.
Elery Hamilton-Smith
Professor
Lincoln Gerontology Centre
LaTrobe University, Melbourne, Australia
vi
FOREWORD
CONTENTS
Page
FOREWORD v
ACKNOWLEDGMENTS xiii
A NOTE ON THE USE OF TERMS xvi
INTRODUCTION: KEEPING IN TOUCH 1
HOW THIS BOOK BEGAN — KEEPING IN TOUCH WITH MY MOTHER 1
A lifelong friendship 1
Coping with Alzheimer’s disease 1
Sharing strategies with other carers 2
FOR PEOPLE WHO WANT TO KEEP IN TOUCH 3
Wanting to keep in touch 3
Even if you don’t want to, it may be worth trying 3
WHAT ‘KEEPING IN TOUCH’ MEANS IN THIS BOOK 4
Keeping in touch is possible, despite the inevitable changes 4
The physical side of keeping in touch 5
Keeping in touch with someone you know 5
Keeping in touch over the years 6
Being realistic about what you can manage to do 7
THE VALUE OF KEEPING IN TOUCH 7
Looking back 7
Helping their sense of self to survive 8
A positive role for carers 8
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KEEPING IN TOUCH
CHAPTER 1: BEING POSITIVE 9
WHAT THIS CHAPTER COVERS 9
LOOKING BEYOND THE NEGATIVE PICTURE OF ALZHEIMER’S DISEASE 9
An added burden — the negative side of the picture 9
Seeing the person instead of the disease 10
RECOGNISING WHAT SOMEONE WITH ALZHEIMER’S CAN STILL DO 12
Demonstrating the other side of the picture 12
Saying and doing something appropriate 13
Drawing on our memory for often-repeated words and actions 14
Such memories may explain otherwise bizarre behaviour 15
The crucial role of such memories when other means fail 16
Negative reactions may be appropriate too — in the circumstances 16
Dementing — but still able to think 17
Still able to feel and to express emotion 19
A sense of humour 20
SUMMING UP — THE ABILITIES NEEDED FOR KEEPING IN TOUCH 21
CHAPTER 2: RECOGNISING AND ALLOWING FOR THEIR 23
PROBLEMS
WHAT THIS CHAPTER COVERS 23
LOST? OR JUST BECOMING HARDER TO FIND? 23
PROBLEMS THAT THEY ARE LIKELY TO HAVE 24
Lapses of memory 24
Moods 25
Problems finding the right name 26
Repeating themselves 27
Mixing past and present events 27
Fact and fantasy become equally real 28
Telling fantastic stories about themselves 29
Seeing things 30
Echoing what is said to them 30
Speaking in fragments 31
Being not here but somewhere else 31
Increasing physical problems 31
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FOREWORD
FACTORS THAT MAY BE ADDING UNNECESSARILY TO THE
PROBLEM 32
Eyesight 32
Hearing 32
Effects of medication 33
Depression 33
Boredom and frustration 34
WHO IS HAVING THE PROBLEM — THEM OR US? 34
DON’T UNDERESTIMATE SOMEONE WITH DEMENTIA! 35
My mother remembers 35
The patient who was not as dumb as she seemed 36
CHAPTER 3: MAKING THE MOST OF BEING TOGETHER 37
WHAT THIS CHAPTER COVERS 37
GETTING OFF TO A GOOD START 37
First impressions count 37
Dealing with a hostile reception 39
CHOOSING AN APPROPRIATE SETTING 39
BEING AWARE OF NONVERBAL SIGNALS 41
Noticing a range of nonverbal signals 42
Be aware of the signals we send too 44
TOUCH — A SPECIAL MEANS OF COMMUNICATION 45
PETS AND TOYS AS A POSSIBLE FOCUS FOR INTERACTION 46
Their advantages 46
Avoiding treating the person like a child 48
Making a suitable choice 48
CHECKING AGAINST UNNECESSARY PROBLEMS 48
FOCUS ON THE ESSENTIALS OF KEEPING IN TOUCH 50
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