• May 25, 2009 at 4:49 am

    Dementia: My New World

    Dementia is an uninvited visitor into my world, an unwelcome birthday present, one where the old me seems to be rapidly moving into a new me. I am being dragged along on this journey with no way to get back home. It gets worse with each day, racing 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. So much for the photographic memory I once had, it 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.

    The mountain I am climbing is finite, and even if I get to the top there will be no grand planting of my flag now will I have remembered the climb, and when I come down, I won’t remember having been there. Words now have no meaning and whole patches of my memory are dying. 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, words 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. It used to be just occasionally, but now it is most days. Reading has almost 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 want 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. Hence writing an essay or poem is also difficult, as I forget what I’ve written, and forgotten what the words mean.

    Dementia is insidiously depriving me of a normal existence, and is very humiliating and awkward to live with, stealing my soul and threatening my very existence. It is making 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 me to make it legible and worthwhile to read, no matter how much it impinges on the pain in my body, it is important to the management of this disease. It is possibly the only form of therapy that will ease my stress and tears.

    My days begin with disciplined planning, as if for a preschooler, with maps and instructions, and now including pictures of the people I am going to see. Not so much 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, and then only with a great amount of effort and planning to imbed 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. Assistance is already required from others to begin and close my days. It is truly the most demeaning and frightening experience I have had, with a feeling of wretchedness I have not felt before, although thankfully one that I will probably forget.

    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 making 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 crazy place called dementia? Perhaps so.

    I hope my story helps some of you.
    Kate Swaffer © xox

  • May 26, 2009 at 6:28 am

    Kate—Please write more. I like your style.