Middle of nowhere. That’s what it feels like…

We’re wild camping again, in woods beside a 12th century Abbey. The ruins. Which are impressive.

Middle of nowhere, twenty miles north of Perigeux.

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We have found fabulous places for wild stops. Beside a beautiful river…overlooking the Limousin from 800 metres on a precipitation cliff…and now this.

It’s been hot. My god it’s hot. I’ve found I cannot cope with it like I used to.

Perigeux has a lovely old town, and we found the market this morning. Very upmarket. Lovely produce. One or two old smallholders selling eggs, a chicken, or freshly picked ceps.

But I could not cope with the busy-ness of it all. This is repeating itself so often that it is a pattern.

I need quiet. I just can’t make enough decisions quickly enough to handle crowds and cars and streets.

In a place I don’t know and recognise.

I just get exasperated and start swearing and huffing and puffing…and then get annoyed with Jane…and finally just hand over decisions in a huff.

“Fine”

Hmph.

“Fine”

Is this dementia? Is it getting older? Is it the heat?

Too much going on. Too many inputs, sensations, sounds, visual signals.

Bombarded.

I need slow living.

Slow, slow living.

Time to think, reflect, take stock, remember…

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……..

Now translate that into a hospital ward.

How does it feel with dementia to be in a different unknown place, and feeling bad?

People you don’t know

Beds both sides, people staring around…

Trolleys, carts, weird metal things on wheels…

Having bands wrapped around your arm, blown up…

Painful pressure…why?

Then a ripping noise…what on earth was that? What’s been ruined?

Who can I ask?

To go to the toilet? For a cup of tea? For my mug?

Is anyone going to come and say hello?

Hmm…my troubles in busy towns are the start of what is coming.

And I’m not looking forward to it.

“Barbara’s Story” is a great exemplar of what living with dementia can be like in an unfamiliar place.

A lot of the change we need is about changing understanding of what you see.

Understand what is in their mind.

That they do not see the world as you do.

That they do not understand what they see, feel and hear like you do.

They’re not grumpy, they’re scared.

They don’t understand.

Get inside their world and look out from it…

Change the paradigm.

(There, I’ve said it again.)

And it takes time and effort.

 

Travelling with dementia in France

How to live well with dementia in France…

Ok, time to start.

We’ve driven down to Soissons, in the Aisné area, in our banter bus.

I’ve emptied and cleaned the toilet cassette twice.

I’ve got us lost numerous times when trying to read the map.
(Great way of persuading the wife to let me drive, though not intentional, I promise.)

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We’ve stayed on two so-so municipal sites and in one deserted but lovely layby outside a small village.

We’ve worked out how to use the water heater, the – what do you call it – outdoor shade, flush the toilet, use the shower…

And now we feel rather professional about it all. Not to say, smug.

We’ve sat in a mobile phone shop buying a data dongle, because 3 didn’t tell me that the sim they sold me could not be shared on hotspot in France. Just in England! Very good.

The first dongle sim would not work, so after two sessions in the shop it was changed.

The second does work, but we can’t activate our monthly allowance because the network is so slow that instead of taking the advertised two hours it seems it takes two days.

The woman speaker on the activation line talks too fast for me to understand most of it, but the very helpful guy in the shop walked me through it and indeed promised to keep trying to do the activation himself.

So we’ve lost a day hanging around in St Quentin for that. But it’s an impressive place, with a cathedral that is so massive and simple that it leaves you lost for words, gaping in amazement, as no doubt they intended all those centuries ago. Driving towards the town, it stands up high, towering above the surrounding landscape.

We’ve been to cemeteries and memorials. We’ve stood at the Menin Gate last post ceremony. We’ve thought about the hundreds of thousands of dead soldiers.

And we’ve driven through huge, flat, rolling, fields of corn, garlic, peas, flax and potatoes.

What’s this got to do with dementia?

Travelling well with dementia…

Here we are, en France, dans le Banter Bus.

In a week we’ve got to Metz, via Ypres and St Quentin, and are now on our way South to Dijon and a little wine tasting in Burgundy.

Aah, someone has to fly the flag, but it is a sacrifice.

And how is my dementia?

Well I have to really concentrate hard to read a map successfully and in time for decisions to be made. I keep wandering off looking at the landscape, or a monument, or cathedral, and then suddenly we’re at a crossroads. Seem to get to places quicker than my mind can adjust to.

I’m told I get much more ratty when tired than I used to, and liable to do stupid things, like driving the van through low branches…swiping off things on top. So I am stopping driving in the afternoons.

And I can’t remember where we’ve been and stopped without a long effort.

Decisions are slow…and I am learning to defer to my wife to save having to think them through and then justify them. It’s just easier.

Jane is having trouble adjusting to my changed behaviours. She says she’s losing me to yet another illness and just can’t cope yet.

But I don’t think I am that different. I can see some changes, but not what she sees.

This is the beginning of the … What? The transition? The fog? The end?

Relying on others to decide, to choose, while I meander in my memories?

It doesn’t feel that way to me. I just go on as before. I may lose immediate memories. I may think a lot about childhood things (mostly not good). I may find it harder to make decisions. I may find it harder to adjust to new surroundings.

But here I am, listening to the BBC news on a Tuesday evening in Eastern France. Drinking local Pinot Gris and eating local patê. The evening church bells are tolling. Perhaps for a mass?

Today I saw a huge group of black kites perched on round bales, and over ten herons standing around, as we drove across huge vistas of rolling crops. Not fields; they don’t do hedges here. As far as the eye can see.

And a hen harrier.

And black redstarts.

So I’m happy.

…………….

Dementia in the rain

Hmmm…

Not quite so happy today. It’s raining.

We drove to Dijon, thinking that as the de facto capital of Burgundy it would be an interesting place for a few hours.

No.

Dijon is an absolute hole. Certainly for visiting anyway.

We drove round to find a car park. No.

Then we cycled into the centre. They introduced trams a few years ago and seem to have decided that signposting for visitors was superfluous.

Round and round we went. Up, down, left, right.

Didn’t find anything worth visiting or looking at.

Then, not for the first time, I could not find my way back to the bus.

On the bicycle. Off the bicycle.

Fell over a few times.

My bag strap got tangled and the seat.

Fell over again.

Where to next……

In the end we resorted to google maps to get back.

Jane had the fantastic idea of photographing the road name sign before we left. Godsend.

Must do that again, cos we got lost again later in Beaune.

…………

Moved on again.

Now we are on the Loire. Lovely quest shady site overlooking the Loire.

Literally, five metres away.

We need a rest here for a couple of days. You can drive too much.

The scenery through from Beaune, South East, to here, has been astounding, with great forests and mountains and wilderness.

Almost deserted. Empty. Small herds of Charolais cattle. Looking like porcelain figurines in the sun.

Hay making, clouds of dust and flies rising behind.

Last night we stayed on a car park beside a cemetery in nowhere land. Silent. Just Charolais for company.

I think a lot about the past. My wild dreams are usually based on school or home in childhood.

I wake up and drift in and out of dreamy memories.

But often I can’t remember where we were yesterday. So I take photographs that I can look back at.

It’s been said before, but I do try to just absorb and feel the moment. Looking at cathedrals, stained glass by Chagal, the Loire…just take it in, store it if possible, but if all else fails I have my pictures.

……..

So two weeks in France. A good day is seeing something inspiring, a view, a cathedral, a quiet sleepy village. A bad day is, well, thinking why the hell aren’t we at home in the garden.

Or getting really pissed off in the late afternoon trying to find a good stopping place and winding around bumpy, endless lanes.

We saw a little deer this morning, standing in the road, bewildered. We stopped. It stared. And it was gone.

Yesterday we saw a beaver! Beside the road. And no river. Must have been some streams around.

Just extraordinary when you keep your eyes open. Golden Oriole, Serin, Kingfisher, Black kites…

………

Don’t ask me to do two things at once

Don’t ask me to do two things at once!
……..

The light is just beginning to brighten the horizon.

Dawn.

Look, yonder…
……..

So there I was.

Lots of things to do around the garden.

All clear in my head. I take one thing at a time and do it.
Sometimes quite jaunty, at the start…
Later slowly, sometimes shuffling…
Aching a bit.

But I plod on through it and get everything done.

I’ve planted lots of plantlets in the last two weeks.
The garden looks amazing.
The veg are coming on well.
And flowers for a friend’s August wedding.
Gladis, dahlias, cosmos, Ammi, snapdragons,
And a few more…

I’ve still got to get the banter bus ready for France.
And three new clematis planted,
Tomatoes in growbags,
All my prescriptions and devices,
Summer clothes that fit (?)

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I’m doing that plodding,

or gliding.

Head down, arms wide,
Sucking in breaths,
Trying to ignore the aches…

I enjoy gardening.
Seeing plants grow from seeds and cuttings,
Blooming into beautiful, colourful flowers.

“We need to put the stuff in the bus.”

Yeah, right…

I continue to plod.

“Can you help me move that boulder?”

“Can we plant the clematis?”
……..

I explode.

“Don’t ask me to do things when I am already busy.

“I can only do one thing at once.

“Look. I can’t handle lots of demands at once.

“I need to do one thing at a time.

“Don’t ask me to break off to do something else.

Etc etc etc

I just want to be left alone to do what I want to do.

Plod on.

No interruptions.

No distractions.

……..

And suddenly I wonder…

Have I deteriorated?

Can’t I keep more than one thing in my mind at once?

Have I just taken a step down (vascular dementia)?

Was I always like this?

Has my temper got worse?
(I’ve lost it badly twice in a week.)

Do I lose it more easily and quickly?

Is withdrawing to silent, solitary ways a strategy for self preservation?

Is this the next stage of my dementia?

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……..

Perhaps I shouldn’t think about it.

One of the most difficult things about dementia is

You don’t know whether it’s dementia.

Or you’ve always been like this?

Or you’re just getting old and more intolerant and impatient?

You just don’t know what’s right.

That’s quite difficult.