Toasted, with bacon

That’s me, not a chicken.
I mentioned nightmares last time.
Well, they are now officially gothic and grotesque.
And very disturbing some nights.
Thus, by the time I woke this morning I was about to be eviscerated, with a lump of bacon on my chest, ready for the oven.
And that was after a long long tale of chase, deceit and fright.
So the nightmares go on.
Thanks to Donepezil.

But, and it’s a big one…
I have also had a huge boost from Donepezil.
I cannot remember feeling this motivated and lively for many years, probably as long as I have had significant memory and word difficulties.
And it’s knocked my blood pressure down from 175 to 145 ish.
If its purpose is to release more acetylcholine, it is certainly working for me.
My brain is fizzing away.
I’m still having days when I just cannot recall the right word, or find I have forgotten something entirely that I was told (so I am told, and who am I to challenge?) but the quality and activity of my daily living is hugely better.

So, GPs, put that in your pipes and smoke it.
Get patients diagnosed!
Get them on donezepil.
……..

I talked to someone about the Memory Service here yesterday, and the fact that spending on mental health in Shropshire is historically half the average in England. The service is really short of capacity and needs staff to enable more diagnostic (and subsequent support).
So, CCG, put more money into the Memory Service so more people can get diagnosed and have the benefits of whatever treatment and support is available.
And please, Health and Wellbeing Board, put this money commitment into your (our?) Dementia Strategy.
……..

You can tell the year is ticking away. Where I often sit in the garden in the morning, the sun is beginning to be lower and to be shaded out by a nearby roof.
In the month since my dementia diagnosis I have taken even more notice of what I see, smell and hear around me. I know it’s not a death sentence, as is sometimes said, but knowing that at some stage I am going to be less able to go out and see the countryside, meet people, walk up a hill or along a canal, makes me regard every day as potentially the last time I will do things.

I said last time I am photographing flowers that I see on walks so I have a reminiscence library for the future. I may not be able to talk about them in ten years, but I will be able to look at them.

I was asked by Robert Jones Sheldon Ward last week to look at a library of natural scene photographs for wall paper at one end of their new patients lounge. Fabulous photographs of the valleys, rivers, woodland, clouds, cows, fields of straw or grass…to create a whole wall picture of a natural environment. It’s almost bizarre, a whole wall looking like a window onto Grasmere, but absolutely fantastic for taking people outside their here and now. Really looking forward to seeing the result.

It’s part of a project that is just starting, to make the hospital environment more dementia friendly. Sheldon ward is for older people.

I hope the hospital will soon put up big pictures of scenes around Shropshire along their newly painted long corridor soon as well, to help stimulate people’s memories and thoughts. In fact, a changing library of pictures would be great. We’d all be talki about what had gone up since our last visit.
Robert Jones, please note.
……..

Had my first real brush with forgotten passwords last week.
Itunes. I could not sign in. And I’ve done it hassle-free for years.
Then I couldn’t remember answers to my security questions.
(Who was my favourite teacher? Not sure I had one I liked and had to guess. Must have got that wrong. What was the first motorised vehicle you owned? Model or make? Or both? Goodness knows? I mean, I know the car, but I don’t know what I entered five years ago.)

Eventually got it sorted over the phone to excellent customer service people in California, at their cost. But I recognise the need for a vault of some sort which I can use for all passwords, and which I and someone else can access when need arises.
If I remember it exists, or the password…
So some research needed there.
……..

Which brings me back to the Better Plan health vault that I have started. It’s a Microsoft thing, which allows you to enter all sorts of data and decisions about your health care, so that others can see and use it if necessary.
End of life plan?
Resuscitation?
Meds you might refuse, others you might accept, as the end approaches?
Who are your key support people?
Meds?
Conditions?
What you want to do?

You choose who to share access with, and that’s the bit I have not yet sorted.
Nor how to remember how to access it…
……..

Yesterday meand’er went out to look at camper vans for our
French Adventure with Dementia.
We are going to get out there and see places before it gets difficult.
The first adventure looks like being a trip to Ireland to buy one and bring it back.
Good old internet.
And good old iPads.
Everyone with dementia should be given one so they can easily compile their memories and research their treatment.
And demand diagnosis.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s