Just had a few odd moments.
I could not place some names in my emails.
They meant nothing at all.
Who are they?
Why have I got email from them?
When did I meet them? How do I know them?
Have I missed something?
And yet, and yet…
I just presented at a workshop for a new dementia strategy for our local community health trust.
Dementia is everyone’s job.
That is what I say anyway.
And I spoke fluently and brightly about dementia…brain disease.
And people said they would never think I could have dementia.
I don’t blame them at all. I sometimes wonder myself.
Just for a while.
Then I look through my email and the names mean nothing at all.
I just cannot find them in my memory.
I have to concentrate so hard and keep my brain engaged on what I do to keep my act going. And it really does feel like being an actor in a loosely scripted drama. Lot os improvisation, but the less the better.
Some of it is easier…Talking in public about dementia, for example. Done it so often now that it is pretty much locked in.
But that pushes the rest out of reach.
And I need some down time and quiet to re-activate or redraw my wiring diagram.
There are times when I get tired of doing this, talking about what services should look like, what matters to us, what is missing…and why.
As someone said to me today. It’s all very well going to these meetings and talking, and writing down ideas and observations.
What about the HOW?
How will “we” make these things into a model and make it happen?
Or, rather, who will make them happen?
Who will push for commissioners to commission different services, and services differently?
Will the Trust leaders be passive and simply continue to provide what is asked of them? Or will they speak up and lobby on our behalf?
We’ve told them what matters to us, so we can live as we choose, with the support that enables us to do what makes life worthwhile.
What is their responsibility?
Is it to their commissioners or to their community?
To their paymasters or to their community