Background noise

I was invited to a garden party the other weekend.
Just a small affair, down the road, local.
I was invited to take along the Dementia Action Alliance banner and leaflets.
To promote the work I and others do.

Thought it would be a good opportunity.

Also thought I would meet one or two people I knew.

Well, actually, no.

I’m there with my glass of water.
Wandering around a lovely small garden which has been designed to be easy to look after.
Raised beds, false but very realistic grass, lovely flowers…
Great ideas.

People arrive who I don’t know.
They come in groups but I’m on my own.
They don’t approach me so I go to them.

When your thought processes are slow it’s hard to both decode what others say
And think of a response quickly.
Conversation requires multi tasking.

A person you don’t know talks to you.

For people with healthy brains this is a no brainer.
You don’t need to think about it.
You hear, you respond.
You may think you don’t or do like the guy, but
You get on with your conversation.
And move on.

I’m thinking…

What are they saying?
Why are they saying it?
What sort of person is this?
I don’t really like what they are saying so how shall I react?
Shall I agree for the sake of calm and quiet?
Or shall I put them right on facts?
Or say actually you’re a prat,
Which is what I am thinking.

Background noise.
In my head.

And all the time I’m thinking these things I am also aware that
I have to respond.
Find words.
And they expect a quick, normal, response.
Like conversations usually go.
They expect to chat, quickly, off the cuff…
Banter perhaps

Well I can banter and chat
But only with people I know or
People I trust.
Because I don’t have to think about the background noise.

If I am having a good day I can pass the time of day with anyone.
As long as you don’t require me to think outside my comfort zone.
I can say what a lovely day it is
Hope the train gets in on time
Yes, I’m going to London
How are you today?
Busy recently?

All that flows out easily.

Ask me what I do and, well, that background noise starts again.

And in a group it all goes completely wrong.

If talking to one person is challenging, how about four or five?
Who you don’t know.
With other real noise going on as well.

Multi tasking becomes million tasking.
And the house of cards begins to fall apart.
When one person stops another starts before you can assimilate the first
So you lose that one and try to catch up with the second.
Another person jumps in.
The subject changes.
And so on, and on
Until someone jumps on you with a question.

Then there is no where to go.
Haven’t a clue what has just been said.
Still thinking about the comment before last.
Still wondering about going for another sandwich
And bang, you are totally exposed.

Um, well, (sigh), I suppose, I’m not sure really…
Look away so you can focus on finding words
Start a sentence with no idea of where it is going
The other person is looking at you
Then the right word isn’t there
Another um, and well, and
The wrong word comes out.

They must think I am stupid or just dull and boring.
Can’t even have a conversation.

They move away, turn to someone else
And you smile vaguely, pick up a sandwich
And look for a person on their own who looks unchallenging
Who you might be able to talk to
Who won’t demand quick answers
About things you don’t usually think about.

That is what it is like
As your brain slows down and bits of it get more difficult to find.

Background noise becomes fog.
And you sometimes clog.

It’s no one’s fault.
It’s dementia.

This is George. He’s got dementia.

I went to an event the other day, a memory walk.
To help out, fly the flag, etc
Met an old friend. Lovely lady.
She introduced me to her colleagues and friends.

This is George. He has dementia.
He doesn’t work any more.

Not sure what I make of this, I thought.
First time anyone has said that.
Feels a bit like, this is George, he’s dying.
He may not be able to have a conversation with you.

I needed a bit of a think, and took myself aside.

Labelling is not intentional, it’s just what happens.
Especially when like me you are open and public about your condition.
I don’t want to shout it in the street.
But I am happy to use my life to get people to behave in different ways
And to support people better.
And that is not just for dementia.
Perhaps you have irritable bowel, or depression.
You might easily be down, confused, tired, distracted…

So let’s help each other.
Ask if they need a little help.
Or a chair.
Or a little time to think.

So, back to labelling.
What do you see after that introduction, he’s got dementia.
What do you expect?

That I can’t talk?
Or understand?
And am confused.

And then…
George doesn’t work any more.

So, that’s me written off.
Assumption…I can’t work because of my dementia.
But actually I am doing loads of unpaid work.
Probably four days a week.
Important stuff, making patients’ experience of health care better.
Getting commissioners to listen to and work with patients to put them in control of their care and lives.

Perhaps I can’t keep track of everything, all the time.
Perhaps I have brain fogs now and then.
I can’t remember names.
But that is not why I stopped working for payment.
That’s a whole other story which you don’t know about.

So in short…
See me, not my dementia.
Take me as you find me.
And don’t make assumptions.

Please do offer help if you see me struggling
Or give me time to order my thoughts, find the word.
Some days I will struggle with conversation about ordinary things.
Others I will be great.
Give me something specific and I will be right on the ball.
Just take me as you find me and take a little time.

Would you introduce someone…
Here’s George, he’s got irritable bowel disease.
He’s depressed.

Slow, slow, quick, quick, stop

Walking through Nottingham the other day I tried really hard not to get run down.
The road system, like all cities, is a bit chaotic to someone who needs a recognisable system.
Cars ought to travel on the left.
You should be able to look right or left and know where to expect cars to come from.
This is what you’ve grown up with.
This is how it happens down your roads at home.

But there you are, standing at the kerb
(Sometimes no kerb, which is really confusing)
(Sometimes a kerb you fall over because you can’t “see” it)
A road splits two or three ways, little refuge island in the middle…
Traffic lights to watch
Lanes filter at different times
Cars going the same direction, one lane moving, one not
Tram lines
Cars, buses, lorries, trams…
It really does not make sense.

If you stand and observe for long enough you may work out the sequence.
You might just get it.
I usually do.
But one day I won’t.

You have two choices.
First choice…
You stop.
Look left, look right, look left, up at the lights, back at the traffic
It shows red but there’s nothing coming
Or is there?
Have you looked the right way?
Look both ways again.
Damn, the red has gone to green.
So who is coming from where now?
Which way is the traffic coming on this single track?

If you are “sensible” you settle to wait for a pedestrian crossing light to cross
Which of course is the right thing to do.
Assuming there are traffic lights.

Second choice…
You look all round
Both ways
Several times
You try to work out the direction to expect traffic
You see none.
You hear none.
You look around for someone else to follow across
(Surely they can’t have dementia as well)
And you go for it.

Well I am still here to tell the tale.
But if you see me standing at a roadside
And you think
Why on earth hasn’t he crossed?
Come up to me and ask if I need any help
And walk across with me.

It might be one of those days when things don’t make sense.

And thank you
In advance.

Travelling backwards

I’d been to Nottingham for a meeting about the project to put patients in control through commissioning services that provide what patients value and need.
Jointly with patients
Round the same table…

It’s a fantastic project in Midlands and East
Vast area from Liverpool to Suffolk

Great meeting
(I chair it!)
And I was really on the ball.

I think.

Train back was going well.
In fact the trains both ways were fantastic (though stifling from Derby to Notts).

The last change was Crewe, on the way back home.
I sat, as always, facing the rear
Helps me to avoid travel sickness
Which has dogged me all my life…
Thrown up anywhere and everywhere you can imagine
On every form of transport.

The train set off.
Why am I going backwards?
Is it shunting?
How can we get home going backwards?
This is all wrong.
The train did not pick up speed for a while so I assumed it would stop and then we’d go forwards.
But no.
We kept going
My head was telling me
My eyes were telling me

I thought this must be wrong
I must be wrong.
Why can I not get this straight in my head?

Well after three or four minutes my head got hold again…
I was going in the right direction after all.

All the jigsaw pieces were back in place.

Dementia can do that to you.
All is going well then suddenly
It seems wrong
Not sure why, but
In your head
It just doesn’t make sense.

Every contact ought to count

I’ve just attended my annual diabetic eye screening.
Like many others, I drove 15 miles to my local hospital. Last year it was local, but apparently they could not do that this time.

10.00 Arrive at reception. Right on time.
Despite near I possibility of funding somewhere to park.
Good morning, I’ve come for my eye screening.
Oh right, just take a seat please.

10.20 “Mr Rook?”
I go through.
Please sit in that chair.
Quick explanation of why I had to come to town this year.
Then the drops. And stinging. And tears.
Then a 15 minute wait outside.

Called back in.
We do the photos.
We look at the shots briefly.
Nothing obvious there, but you will get a copy of the full report.
Thanks for coming.

So nothing wrong with that, was there.
Straightforward, clinical, transactional.
She was very polite, had a bit of a smile all the time.

What about me as a patient, as a person, a diabetic who sees a medical person about it very rarely?
What did I feel this morning?
Wonder if my control has been good enough.
Distance vision has gone a bit blurred in the last months and my blood sugar has been a bit higher.

Was there an opportunity for me to raise my own feelings or concerns?
I felt like I had to do what I was told and not disturb the routine and efficiency of this woman.
Was she the tiniest bit interested in me? In my worries about eyesight?
This was a business transaction.

Should she have been?
People with long term contradictions do not have many opportunities to talk about their concerns or successes, their failures to stick with the regime, or whether their condition has changed subtly.
We may see medics pretty frequently if we have lots of conditions, but each is usually kept separate, and staff don’t often want to talk about other related conditions.

They have their job to do, their speciality.
I am there for a specified purpose.
Today it was an eye photograph.
But it was an opportunity for a contact, a talk, a self-management reassurance.

When we are treated as a unit of work we feel small, helpless.
We leave and reflect and feel guilty for not asking questions.
We feel annoyed that we did not tell them to treat us as people.
We also think that if we did we would make them annoyed and be treated like a naughty child, or another of the moaning people who complain all the time.

I really appreciate what my medical people do for me. But gratitude, for a service I pay for, and which they are paid to provide, should not mean that I have no right to expect to be treated empathetically as a real person.

Ask me how I am?
Take two minutes to make contact.
Ask me how I feel my condition is?
If I have any changing symptoms.
Ask if I have anything I want to ask about how my eyes might develop or change.

Just talk to me and take a few minutes.
I won’t see you again for a year, and it probably won’t be you.

This self-management is great.
As long as you don’t need support with it.

Supported self-management would be better.
Help us.
Support us.
Provide us with opportunities to talk without feeling shame or guilt.

Every contact is important for a patient.
Make it count.

Ooh, better not mention that

So there I am in a pre-op assessment session at a local hospital.
I have filled in the purple pages of the thick pathway booklet.
All my personal details and conditions and medications.
I included, of course, dementia.

And I meet the very nice and lively HCA to be clerked and have a few tests and measurements.
Height, weight… I saw OBESE show up on the screen.
I’ve lost nearly a stone in two months, but still it’s there, I thought.
Slightly irritating.
Anyway, he confirmed my loss of weight since my last operation, but declined to repeat the screen message.
Perhaps I was pleased by that, but I saw it.
So job done, NHS. I am duly reminded I am fat.

(Any real suggestions for how to support me – not anyone else – me, to lose weight?
Nah. Nor from my GP, or practice nurse.)

Back to the HCA.
He read through the purple pages, noted things, asked things, wrote things…
Ah, you’ve got diabetes…
So let’s go through your medications.

Is my dementia irrelevant?
Does the hospital
let alone the clinical staff who will care for me
Know how dementia affects me?
Can they rely on my information?
Can I remember what they say?

…And so on to the nurse practitioner.
Lovely lady, on the ball, excellent in all respects.
Great patient interaction.

Reads through the purple pages.
Gets to dementia
Let’s find out which type of sticking plaster you are allergic to.

And we did, which is the first time anyone has bothered, though I tell them all.
She stuck me with three types and checked 15 minutes later.
One was inflamed.
So well done her.

Eventually she tells me some stuff about which medication I should stop before the op.
So I get out my iPad to write notes, and say
If I don’t do this I’ll forget what you said.

Dementia gets a mention.

And then on and out to the next person.

The registrar.
Who in his own way is fine and polite.
Asks me to explain what I am having done.
And I did.
Then consent…
No mention of dementia and capacity.
Ok, I have capacity, and it’s pretty obvious, but dementia, memory, understanding…?

And no information about possible problems, infection, etc, and probabilities…

So I asked him and extracted these.

And I consented.

All done.

What do you think?

Today I was doing some really great training in values based recruitment (VBR) at our acute trust.
They involve us patients on some of their band 5 nurse recruitment, and I really enjoy this work. Did a lot in my paid work.
This values based recruitment is part of the Trust’s determination to ensure the core values
agreed by staff last year
are embedded in the staff and organisation.

Today was the second day of training and we were practising interviews.
Lot of multi tasking and thinking needed during the questioning and recording stages.
I was pretty much up to this, especially as I find the principles and approach of VBR are in part what I have been doing for years.
(It is hard though.)
This evidence based model is however much much better than I have been doing.

After my interview question and answer session the trainer turned to me and asked
And how did that go for you?
I could not get my mind in gear, or rather access that bit I needed.
Couldn’t remember much of the interview. So consulted my notes.

And I noticed as the day went on, and the excellent nurses and facilities staff became more familiar and relaxed with the model,
I could not think anywhere near as fast as they can.
I probably used to be able to, but not now.
What I know I can well articulate.
What I do not expect I cannot process.
And I did wonder,
Should I be doing this at all?

Well, at the moment I think I can do good interviews, but as I have said before,
Please tell me when you see that I cannot!

Oh and thanks to all for being so forgiving about my inability to remember your names even for five seconds