We had our first meeting with the community outreach sister last week. She supports us younger onset dementia people.
63. Young? Plenty younger.
Information packs, benefits, financial arrangements, power of attorney…
All important things, but…
The huge, overpowering weight of all that was, well, overpowering.
Jane and I had a couple of days feeling down, thinking about inevitability, about lost opportunities.
She more so than me.
I already know what is coming, around the corner, unavoidably. That’s life.
Don’t ever tell God your plans.
Jane is now seized with a project.
“French adventure with dementia”.
Next year, six weeks in a “touring” (camper) van.
“If we don’t do it while we can I will always know I missed an opportunity. We don’t know how long you will be able to travel.”
And I think, yes, let’s do it.
Now I have stepped up my donezepil to the full dose. Half seemed ok after some early, um, rumblings below.
They said take it in the morning or you may get nightmares.
So instead I virtually passed out each morning.
Faintness, terrible, nauseating, sweating faintness.
All I could do was eat, lie down, listen to the radio, close my eyes, and wait.
And after five hours it was gone.
For three days.
Jane asked…How will we know if the donezepil is working?
I suppose we won’t.
Now I have changed to taking it at night.
Now I have nightmares, but am fine in the day.
What is a nightmare?
My dreams have just become upsetting, vivid, long…
I drift in and out of the same dream.
Not the wild, …
(I’m trying to get a word, but it’s just not quite, what is it, not gargantuan, I’m sure it starts with G, Northanger Abbey is an example..)
Got it. That took three minutes.
Not the wild, gothic film nightmares. Just bits of memory stitched together differently, people I have known, but not the same. Always anxiety. Challenge. Fear.
Often distantly to do with teaching.
I wake up, think about it, then drift back in again. Several times.
So I get up at 5.30 to escape.
Yesterday I could not remember the word “dementia” when I was writing an email. How’s that for IRONY.
I am being open about my diagnosis. Not for the sake of it, but when relevant. I use my own story to influence people to change.
The Health and Wellbeing Board, when they were talking about the Shropshire Dementia Strategy, and access to early diagnosis.
(GPs please note. If we ask, we do so because we want to know.)
The Shropshire Dementia Action Alliance, so they know we have a person with dementia on the steering group.
At Robert Jones and Agnes Hunt yesterday we talked about making the hospital environment dementia friendly. But I didn’t tell them.
I wonder how many know why I keep driving the dementia agenda.
One person said, it’s just common sense and good behaviour, to treat people with dementia properly in hospital.
No it’s not I shouted quietly.
Dementia kills off bits of the brain (I am afraid I said rots) so people cannot do things the same, so you have to change the way you behave towards and with them.
Oh, they said. Yes. Of course. Yes. Hmmm.
Give people time to find words.
Give them lovely pictures of fields, and clouds, sun, rivers, churches…to remind them of lovely times
Give them their own mug or cup. (They will then drink as much as you put in front of them.)
There’s a long way to go, because a lot of people think they are dementia friendly before they understand what it is. And those guys are making decisions about how we are looked after in hospitals.
So more dementia friends sessions…for the non medical people. Already planned!
Back to me and ‘er.
We rub along with this monkey on my shoulder, dementia.
She mourns a future in retirement together, travelling here and there, doing simple things, together.
I see the reaper coming in the distance.
And both of us think
It’s time to do things.