Retroladytyping …

Dr Who, dementia and an orange

on 19/01/2016


Those who know me will not be surprised to see the word dementia in the title of this piece, but probably not Dr Who or an orange.  I will attempt to explain:

My  Mum had dementia and my family witnessed her decline from this awful illness at close quarters.  At first we thought it was part of old age:  memory problems affect most of us to some extent.  However, it became clear that this was more than ‘old age’.  Her memory lapses were only part of the illness.  Anyone with experience of dementia, either personally or as a relative, will know that the person as we know them i.e. their personality, what makes them their unique selves, gradually disappears.   This happens while their physical self seems unchanged, for a time at least.    Mum was still Mum on the outside, but parts of her brain were gradually becoming damaged, so she did not seem like Mum.  We didn’t realise what was happening inside her.  We just knew that she was behaving differently and, above all, was frightened and confused. We saw her fear in her eyes, but we couldn’t deal with it.  We were frightened too; the unknown is frightening and our Mum wasn’t behaving as our Mum always had anymore.

The point of this post is to highlight a video made by Christopher Eccleston (hence the Dr Who part of the title) with Aardman Animations,  using an orange to illustrate the physical nature of this awful illness.

Each segment of the brain (orange) gradually becomes damaged until there is nothing left.  The presentation of the illness depends on which part becomes damaged and so affects perception, memory and behaviour.   When the illness becomes apparent to others,   there may be the feeling that, if only the person tries harder, calms down, rests, or just damned well listened to those caring for them, they could ‘sort themselves out’ and stop being ‘difficult.’  That was our experience, but I know, from talking with others since,  that it’s common to think that people with dementia can be reasoned with.  It’s not the illness; it’s them or, even worse, us.  We certainly used to repeat things many times (trying to conceal our sighs)  to Mum in the hope that we could convince her of reality.  You develop a lot of patience when you know someone with dementia, alternating with periods of complete exasperation for Mum and us.

I wish we had realised  that dementia is an irreversible physical illness then, rather than several years too late.  We would all have had a better experience of its effects, Mum most of all, because we wouldn’t have argued with her or tried to convince her of unimportant things like the correct day of the week.  Did it really matter?  Probably not, no, but we felt it did then.  We needed our Mum to be our Mum,  as she always was.  No matter how grown-up and seemingly mature we were, we still needed to be sure of our Mum.  Anything else is frightening.  It was for us; I can’t begin to imagine how it must have been for her.  Terrifying I would think; I fervently hope not, but I fear it was.

I think that the realisation that it is a physical illness, caused by damage to the brain, might help to remove some of the fear and exasperation.  In the same way as you wouldn’t expect an orange to reverse its decay (I was trying to avoid using that word, but I can’t think of a better one to illustrate the permanency of dementia),  it is far better and less stressful to accept the way things are and focus on what is left, so everyone benefits.  Physical illness is, arguably, easier to accept  practically and emotionally,  than an illness which shows itself as a change in behaviour with no visible cause.  That’s why the image of an orange slowing losing its segments is so powerful for me.

One (wonderful) day a cure will be found for dementia.  Until then I think that understanding it as an irreversible progressive physical condition is a huge step towards dealing with its effects.

Understanding and acceptance doesn’t mean giving up though … the Alzheimer’s Society website, link below, is full of information,   resources and coping mechanisms,  as well as offering unconditional understanding and support through its Talking Point forum.










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