I went to an event the other day, a memory walk.
To help out, fly the flag, etc
Met an old friend. Lovely lady.
She introduced me to her colleagues and friends.
This is George. He has dementia.
He doesn’t work any more.
Not sure what I make of this, I thought.
First time anyone has said that.
Feels a bit like, this is George, he’s dying.
He may not be able to have a conversation with you.
I needed a bit of a think, and took myself aside.
Labelling is not intentional, it’s just what happens.
Especially when like me you are open and public about your condition.
I don’t want to shout it in the street.
But I am happy to use my life to get people to behave in different ways
And to support people better.
And that is not just for dementia.
Perhaps you have irritable bowel, or depression.
You might easily be down, confused, tired, distracted…
So let’s help each other.
Ask if they need a little help.
Or a chair.
Or a little time to think.
So, back to labelling.
What do you see after that introduction, he’s got dementia.
What do you expect?
That I can’t talk?
And am confused.
George doesn’t work any more.
So, that’s me written off.
Assumption…I can’t work because of my dementia.
But actually I am doing loads of unpaid work.
Probably four days a week.
Important stuff, making patients’ experience of health care better.
Getting commissioners to listen to and work with patients to put them in control of their care and lives.
Perhaps I can’t keep track of everything, all the time.
Perhaps I have brain fogs now and then.
I can’t remember names.
But that is not why I stopped working for payment.
That’s a whole other story which you don’t know about.
So in short…
See me, not my dementia.
Take me as you find me.
And don’t make assumptions.
Please do offer help if you see me struggling
Or give me time to order my thoughts, find the word.
Some days I will struggle with conversation about ordinary things.
Others I will be great.
Give me something specific and I will be right on the ball.
Just take me as you find me and take a little time.
Would you introduce someone…
Here’s George, he’s got irritable bowel disease.