We are definitely not representative
Nope. You’re right.
We are not typical of people living with dementia.
We are not the usual people who visit GPs and clinics for diagnosis.
We should be ashamed of such hubris, standing up and talking for people living with dementia.
Of course we have absolutely no right to claim that we know what it’s like.
And indeed, it is highly probable that we have a wrong diagnosis, since we can obviously talk coherently about our lives.
When we go up on stage you should not listen to us.
When we describe our symptoms, don’t believe us.
We’re lying. Making it up.
We all have a psychiatric condition that makes us need to have an illness to feel important.
Let’s face it; we are all deluded seekers of headlines and self aggrandisement.
I do agree with you…we should be sitting at home staring out of the window.
Frothy blobs dribbling down or chins onto our shirts and skirts.
We should be unable to eat or drink without help. Unable to speak.
Unable to remember what day it is, or who you are.
So, please do just ignore us. Take no notice.
We don’t fit the mould.
We are still active in our communities five years after diagnosis. That’s wrong. The diagnosis must be wrong.
We are still travelling around the country.
We can speak fluently in front of a hundred people.
We look normal.
It must be wrong.
You told me you cannot believe I have dementia.
You told me you often lose your keys, or forget why you went upstairs.
If you’ve got it, so have I.
And of course, you are right. Spot on. Of course I haven’t got dementia.
I made it up for fun. Because I need to be the centre of attention.
And because I want benefits and support that without diagnosis I could not get.
Yep…absolutely right. I get so much support you wouldn’t believe it.
Yes I want a blue badge to save me walking so far. Because I am lazy. I just don’t want the hassle of parking with everyone else. And it saves me paying for parking.
It is not because I get lost, or because my wobbles may cause me to fall over.
It is really great fun pretending to have dementia.
So please remember…
Don’t listen to us.
Take no notice when we say we have bad days, or we cannot answer unexpected questions.
Take no notice when we tell you we cannot see things in front of us, and when we claim we burn ourselves when cooking.
When we say we cannot remember how to tie shoelaces, or fill a kettle.
When we say what you see is not what we are like at home.
You are right. We are not what you see in newspapers or on television.
And of course we have no right to come out in public and ask for support. And care. And help.
What we should be doing is hiding away where you cannot see us.
Then we won’t exist. And you will know that you are quite right.
You can then speak for us. Oh how wonderful that will be. So much easier for us both.
You can then decide what you want to give us. And you can say we are of unsound mind, and cannot make decisions. And you can lock us in, and tie us down, and cosh us with pills.
Like the good old days. The good old days.
Well, I have enjoyed our conversation, and I think I now understand.
Now, where’s the bedroom?