We need to talk

Hello.
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…

Dementia

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.

Meander

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?
Hmm, again.
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?
(Dementia)
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..)
Gothic!
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.)
Offer help.

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.

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.