We need to talk

My name is George and I’ve got dementia.

How do you react when I say I’ve got dementia?
And how do I want you to react?

Big question, that.
Part of me wants you to just treat it as a matter of fact, no big reaction.
I don’t want you to feel sorry for me, because actually my life has not changed.
I am the same person as a month ago.
Well except perhaps for a million brain cells.
I will be the same person for many months or years.
I’m not going to become ga-ga suddenly. Any more than I am now.

But part of me also wants you to acknowledge my dementia.
Ask me how I am today, because I change every day.
And it’s really helpful to be able to tell someone when I need to.

You probably don’t know what to say.
You think I have a terminal illness.
A death sentence.
You don’t want to intrude, or seem nosey.
You might imagine I don’t want to talk about my dementia because it is so awful.

Well, you would be wrong.
I can’t speak for anyone else, but I am sure I am not alone in wanting to talk sometimes about it.
I really don’t feel like the world is about to close on on me and become a cell.
I just go on from day to day, doing what I am good at, and keeping active.
I really value social contact, and I get it through my patient leader work.
I know a lot of really lovely people who I like meeting and talking with.

There are odd times when I think
One day I won’t be able to do this.
One day I will say things twice or more without knowing.
One day people will notice that I say things that are inappropriate or irrelevant.

Will they tell me?
Will I be aware enough to withdraw before I become an embarrassment?

So talk to me about dementia.
Ask me how I feel.
How I am today.
I may just say fine, or good.
I may want to tell you that I am having difficulty with names today.
Or I went to the wrong place for an appointment yesterday.
Or I am sure the start time was an hour later.

One day I might want to say I am frightened.
Just listen.
Look at me and listen.

Please don’t be frightened of how I may feel, or what I might say.
Please don’t ignore my dementia.

But please don’t do things for me either.
Don’t finish my sentences.
Don’t fill silences, pauses,
My thinking time.

I need to do things myself, even if I gradually take more time and make more mistakes.
One day you can tell me gently
Perhaps it is time to stop doing this.
Hand over the reins,
Try a different role,
Spend more time at home…

Not yet!
No, no, not for a while yet.

It used to be cancer.
It still is mental illness, depression, anxiety, bi-polar…
Ooh, not sure what to say.
Don’t like the sound of that.
They might not want me to remind them by asking.
Not sure whether I want anyone to know about this.
What if my employer finds out?

Let’s bring dementia out of the cupboard under the stairs.
Let’s talk about dementia.
What it’s like.
How it affects you
And me.

Let’s be honest with each other.

I know life will be difficult sometime in the future.
I know it will be more difficult for Jane and my children than for me.

It’s not a shock.
I don’t feel bitter.
Or angry.
It’s just another part of life.
Another step along the road that is neither fair nor unfair.
Just life.

Being able to write these pieces, and to work to improve life for people with dementia in Shropshire is what makes my life worthwhile now.

So talk to me about it.

We need to talk about…


2 thoughts on “We need to talk

  1. hi george
    What an enjoyable read many thanks for sharing .I will so look forward to hearing and reading about your journey .
    As a nurse for many years, this has always been an interesting subject to disscuss. I have just bought a book by Olive James called “Contented Dementia” I love the title so much. My father in-law was diagnosed with demetia 2 years ago. now off to read Toasted with bacon.
    kind regards sisterplum


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