Swaffer, K 2008, Dementia: My New World, LINK Disability Magazine, vol. 17, no 4, pp. 12-13
“Dementia is an uninvited visitor to my world, an unwelcome early 50th birthday present, one where the old me seems to be rapidly moving away to a new me. I am being dragged along on this journey with no way to get back home as it races along like an express train without brakes. I read then I forget. I read, I take notes and then I forget. I read, I highlight and take notes and I still forget. That photographic memory I once had is gone, dead and fully buried. My high functioning mind has slipped away, sometimes showing itself like a ghost, teasing me into believing it will be okay, but just outside of my reach. Words now have no meaning and whole patches of my memory are disappearing.
The mountain I am climbing is finite, but even if I get to the top there will be no grand planting of my flag nor will I have remembered the climb. When I come down, I won’t remember having been there. Some of my friends inform me I am not aphasic, that I am not remembering any less well than they do, that their world is the same as mine. They say I am getting old and this is what it is like, so get used to it. I ask myself, ‘What would they know?’ They are wrong. It is different.
I regularly do not understand or remember what I read or what people say to me. I now forget the meaning of words, even simple ones that I have been using for years. I forget how to spell even simple words like ‘that’. Perhaps not forgotten, but for reasons unknown my brain now mixes things up as if I have dyslexia. So for example, ‘that’ gets spelt like ‘atht’, and ‘89’ written as ‘98’. This used to be just occasionally, but now it is most days. Reading has become a pointless exercise due to the fact that as I read one paragraph, I have already forgotten the last. So taking notes of every single thing I read that I will need to recall has not become an option. Even writing a simple email or card to a friend has become a major task, because if I don’t go very slowly, or take the time to edit it over and over, the words come out wrong. Writing is also difficult as I forget what I’ve written and forgotten what the words mean.
It is insidiously depriving me of a normal existence and it is very humiliating and awkward to live with – it is stealing my soul and threatening my very existence. It makes me nervous to go out. Every day now feels like a brand new one, except that my body feels very old and tired. I realise that writing about my dementia is not an option and that no matter how long it takes to make it legible and worthwhile to read, it is important to the management of this disease. It is possibly the only form of therapy that will ease my stress and tears.
Assistance is already required from others to begin and close my days. They begin with disciplined planning, as if for a preschooler, with maps and instructions including pictures of the people I am going to see. Not so much for those I have known for a long time, but definitely the newer faces. I meet the same people at the beginning of a semester over and over again before I have any recollection of having met them before. Then only with a great amount of effort and planning, embed them into my memory. Most days are now an effort not to just sit in a corner and cry, not to just give up or to give in to it. It requires a great amount of emotional effort to live a ‘normal’ existence and it is truly the most demeaning and frightening experience I have had accompanied with a feeling of wretchedness I have not felt before. This new place is full of hidden and impending madness, full of people already whispering behind closed doors away from my ears, trying to plan for my demise and how I and they will cope. They provide words of comfort and gentle pats on my back meaning well, but never realising it usually makes me feel as like a leper, as if I am to be pitied. They are the ones who will eventually have the challenges of coping as I will be lost in a world of inhibition and supposed joyfulness, locked out of the reality of the world and its occupants. And so, I keep asking myself am I to be the lucky one in this strange place called dementia. Perhaps so.”
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