Alzheimer's Timeline
A Layman’s Study of Dementia in the Family
Brian Bailie MCSD
Copyright 2013 Brian Bailie,
All rights reserved.
Published in eBook format by eBookIt.com
ISBN-13: 978-1-4566-0554-4
No part of this book may be reproduced in any form or by any electronic or mechanical means including information storage and retrieval systems, without permission in writing from the author. The only exception is by a reviewer, who may quote short excerpts in a review.
dedicated to my sister-in-law, Janet
without whom this would have been a very different story
Introduction
I am just the son of a beautiful woman whose mind was stolen from her.
I’m not a doctor, I need a spell-checker to write psychiatrist. I’ve no medical education or experience. And there are millions of people just like me, who really don’t understand half the information we’re told by health professionals. So I want to just describe my experience of Alzheimer’s disease in my family, in plain language, like it was, and how it is.
Over the past fourteen years or so, Mum’s mind has dissolved relentlessly, like sugar in warm water, and it has left her in a perpetual existence of total and complete mental and physical inability and total dependency.
Yes, this is a personal, frequently embarrassing and emotional story for me to write. But I know that my mum would want her experience and suffering to be used to help and prepare others; to help you avoid the mistakes that I made; to speak to you in the honest words of a simple helpless layman.
The thing about hindsight is that it only makes you wiser if you’re going to do something over again. I don’t like to think about having to care for another loved one with dementia, but I’d like to think that my story will help others. So the sole reason for publishing this account of my mum’s decline is the hope that my experience and my hindsight will help you:
•Help you to anticipate problems.
•Help you to plan care arrangements.
•Help you to prepare practically and emotionally.
•Help you to realise the importance of legal and financial issues.
I’ve had to walk a delicate line: I have a younger sister, and an elder brother. Hilary was happy enough for me to make decisions and change things within reason, but because Paul is older than me, I really felt that he should’ve been more involved with the significant decisions, especially any decisions to do with moving money around, or spending it. But Paul had emigrated years ago, and so his involvement was limited to his opinion, and his approval or disapproval.
Trust is the key. Not that I was mistrusted, but the first decision I made about my involvement with Mum and Dad was that everything that I did would be totally transparent. Consequently, the only reason that I can catalogue Mum’s decline so accurately is because I put everything in writing: every event, every decision, every incident, every diagnosis was written down and emailed to Paul as it happened. So this little book, and the accuracy of the timeline of Mum’s decline into total dependency, is the direct result of my correspondence with my brother.
To help me identify the clinical stages of my mum’s Alzheimer’s disease I’m using the seven-stage scale developed by renowned Alzheimer’s specialist, Dr Barry Reisberg. This is known as the Global Deterioration Scale. This scale is used by mental health professionals to categorise the phases of degeneration with Alzheimer’s disease.
STAGE ONE
No Cognitive Decline
No subjective complaints of memory deficit. No memory deficit evident on clinical interview.
Global Deterioration Scale © Barry Reisberg, MD
Well that’s reassuring: we’re all at least Stage 1 of dementia, like a ticking time bomb that may, or may not have a detonator. It isn’t very helpful. Is this just some over-analytical chin-stroker trying to be clever; or should I be worried?
If I summarised Mum’s character before she began to suffer from dementia, I would describe a very fun and child-like personality. Mum was out-going, loving, trusting, a little naïve perhaps, perpetually happy, and a little too selfless. She was also dippy, scatty, disorganised, untidy, through-other, and may have been described as happy-go-lucky. Everyone loved Mum, and Mum loved everyone. I don’t think any of these characteristics can be identified as anything other than perfectly normal. However, I accept that most of these characteristics can also be identified as symptoms of something more sinister.
STAGE TWO
Very Mild Cognitive decline
Subjective complaints of memory deficit, most frequently in the following areas:
(a)forgetting where one has placed familiar objects;
(b)forgetting names one formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern with respect to symptomatology.
Global Deterioration Scale © Barry Reisberg, MD
But everyone does this (don’t they?). I frequently forget the name of my dog, (one reason why I’ve trained it to come to my whistle). And of course I know the names of my own children, but occasionally, mid-sentence, I might refer to them with another familiar name. It’s frustrating for me, and it’s annoying for my child; but is this dementia? Of course it isn’t, it’s just normal. Everyone does it.
You mean to tell me that you’ve never gone to get something, walked into a room to get it, and stood there like an eejit trying to remember why you’re there and what you’re looking for? We all do stuff like this. It’s called being relaxed; your brain is on stand-by, we’re just mentally freewheeling (aren’t we?). I think that what the Global Deterioration Scale wants to emphasise is that this kind of forgetfulness is a symptom of Stage 2, however it’s also a symptom of being a relaxed, perfectly healthy human being.
To put this into the context of my mum’s early symptoms, no one noticed anything, because as I’ve already described her, she had always been dippy, scatty, and disorganised. And with Dad beginning to suffer from ill health, Mum was bound to be worried, I never thought twice about her being a little more disorganised or more forgetful than usual.
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