Who I am

Dementia. Dement. Demented. Demon. Demons.
TIA? Not yet.
I have dementia.
I found out two weeks ago, the day after my 63rd birthday.
The day before my son’s graduation to be a doctor. ( Well actually Doctor Doctor – he also has a PhD.)
I have mixed dementia. Vascular and Alzheimer’s.
Fairly early stage, memory difficulties, no tea in the teapot, where’s the mustard (“straight in front of you”), oops, tripped over the step…which wasn’t there…just a shadow.
I can’t remember names. People. People I know well and people I just met.
My typing hits all the wrong keys some days (How are you Terry?). Autocorrect quietly subverts my writing. Agent provocateur.
Hello my name is gheohe, gritge, gworge, gorgeous, grove, frogging
I get stuck in sentences. Gaps yawn out, awkward tense silences. I twist inside searching for that word. How long will people will wait…
I shaved twice yesterday. Of course I didn’t.
How do I know what to believe? Apparently my shaver was used twice.
I can’t stand loud noise. Days on (Dyson) air blades.
In all new hospitals. Blow your mind away. Perfect.
Restaurants. Can’t hear anyone, just a blur.
I watch lips instead. It helps.

I asked my GP three times in as many years for tests about memory and the other stuff. I knew something was wrong. He said what’s the point. There’s no treatment. You’re already on all the meds.
Third time I took Jane. And insisted.
Six months later l have mixed dementia.
Lots of tests.
The simple ones were pretty ok. Near perfect. But I knew something was wrong.
So they did a day and more of IQ and other things.
See, I have a high IQ. (I know. Where did that come from?)
So they had to work out if my brain was working well enough for that IQ.
Which, of course, it is not.
But then, could argue it never has.
School was awful. (Dear Fettes. Dear Tony.)
Home wasn’t great. Les parents miserables.

Processing speed slow.
Memory poor.
Executive functions below par.
Decision making difficult?

Scan showed shrimp kale (sorry shrinkage).

So here I am.
This is who I am.
This is who I will always be, but you will not always see.
(Good line)

Seurat (after – bloody hell) diagnosis I went into three days’ mourning.
It was only half a surprise
Knew I had vascular really
But something changed that day.
A gulf opened up, perhaps a view of an abyss which one day I would surely walk into.
I could only think about having dementia.
What else was there?
Three days of thought, wondering, wandering.

My mind goes back to younger times a lot now.
Good holidays, favourite places
Where I felt safe and happy.
Abergavenny.
The Sugar Loaf.
The gorgeous aroma of bracken brushed as you walk.
And to embarrassments which make me cry out, still.
Things I should have done, and should not. Or did not.

I am arrogant. It covers up other stuff.
I think people might want to hear what I say.
I think I can change the world (NHS at least).
I can speak nicely, or foully.
Nice or foul.
My brain phizzes one day and reclines the next.
I’ve always thought I could write.
Adolescent poetry by the folio. Outpourings.
I make music and people like it. Say I’m good.
But to me it’s indulgent.

I’m saving the NHS (just Shropshire thank you).
Have been for a few years.
Giving something back or making it better for me later.
Loads of ops and LTCs as we like to say.
My heart was bypassed at birth, but needed later diversions.
(You see, that sounds maudlin doesn’t it.)
I’m chair of the new, shiny
Shropshire Dementia Action Alliance.
How’s that for IRINY.

Got my feet in a few health camps, flying the patient flag.
Passionate about improving patient experience I say.
Want to influence change.
I think I have something to say that they will listen to.
I think I have insights they will welcome.
I am arrogant you see.

So here is my blog.
I want people to know my story so it may influence change.
If I keep quiet no one will know
What it’s like to hear those words
Look into the abyss
And out again, upwards
To welcome each day and hope it is good.
And make it good.

Cos one day before long it won’t be.
And then my Jane will be my comforter.

Till then, read and listen.
To me and others.
And take action to make living better for people with dementia.

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