“Dementia: My New World” by Kate Swaffer

This weeks blog is by me, Kate Swaffer, a co-founder and Board member of Dementia Alliance International , about how I felt when first diagnosed with younger onset dementia a few years ago.

I do not feel that desperate now, and have gone on to find ways to live well with dementia, through self advocacy and empowerment, and connecting with other people living well with dementia. The story below was written and published in LINK Disability magazine in 2008, and highlights the anguish I felt; I have not included it all, but it can be read in full at the bottom of the page here.

The video clip is how I felt about the prospect of going into residential aged care, and is not meant to be ageist at all, but simply how I felt at the age of 49 and 50 about the possibility of living in a dementia unit designed entirely for people over 65. It gives a glimpse of what it was like inside my head and heart.

“Dementia: My New World”

“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, and 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…

It 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 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.

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 is truly the most demeaning and frightening experience I have had, 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.”