I wonder where I will be a year from now

In France with dementia…

So. What’s it been like?

Six weeks travelling in the banter bus. Seeing lots and lots of France.

Map reading has been difficult, as I tend not to keep up with the speed of the bus. So I’m usually late with my directions.

I’ve slowed down. My brain, I mean. If you don’t use it you lose it.

And with dementia, I’m told, you may never reactivate it. We’ll see.

We’ve spent the last week with friends at their French house. I know, it sounds terribly middle class. Well, it is. No denying. (Sorry Roy.)

Conversations in a group of six are quite difficult to keep up with. I think too much about me, and how I might respond. I often dream back into memories. I try to make witty contributions, but have to hold my hand up to get into the conversation. And then I’m behind already.

I retreat to the banter bus to mend a drawer lock which I inadvertently glued shut. Best of intentions. Nothing to do with dementia… Just careless DIY.

And I realise that it’s my little man shed. It’s a retreat.

I really find groups of people difficult. I can’t keep up. I can’t contribute fast enough. I can’t feel part of it.

Not their fault. No one’s of course. Just …

But the escape from responsibility has been wonderfully refreshing. Six weeks not having to think about bills, the bank, cars, my patient rep work…it’s really tempting, though I won’t, to adopt a nomadic life. The biggest issue every day? Where’s the next water and waste disposal stop?

I have done a lot of reminiscence in bed. I wake up and enter whichever year is at the top of my mind. I dream vividly, as ever, sometimes good sometimes horrid. I go in and out of my memories.

I begin to understand that film Barbara’s Story. She is thinking in another dimension, living in a different place, and then has suddenly to come back to the NOW. It’s difficult to make the move. It’s confusing. It takes time. It takes thought, slow reflection, and slowly coming up to speed,

That’s where I think I am sometimes.

Still pretty with it, but taking longer to adjust to different places, people, conversations, subjects.

Having to take time out from other people, so I can catch up gently, gather my thoughts.

Back to Blighty on Sunday. I have mixed feelings, but I have enjoyed this trip hugely more than I thought I might. We’re planning the Scottish Highlands and Islands next spring, and Ireland.

I love the banter bus. It’s a little home on wheels. You can go wherever you want.

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An antidote to that planned, risk averse, responsible life I have inherited and unfortunately lived.

I wish…

I wish I had been a more adventurous person. But we are what we are.

And now I am less than I was.

I wonder where I will be a year from now.

Can we live well with dementia?

Can we live well with dementia?

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Roy Lilley wrote a great piece today for NHS managers.net.

The care of people with dementia is indeed awful.

The support for and care of families and carers of people with dementia is awful.

Having dementia in the later stages is awful.

Supporting and looking after someone with later stage dementia is very very hard work, probably awful too.

So when we “glitterati and middle classes” write and talk about ‘living well with dementia’ what the hell are we talking about?

Roy is right to question this. Dementia is shit.

But, to draw on Truthful Loving Kindness and others, the shit comes from how we are treated, not so much from the dementia itself.

Dementia is a disease. But people don’t know how to react or support or behave.

If I’ve got cancer I get pretty holistic care and support, often from a Macmillan trained nurse. And so does my carer. The NHS has become good at this. The big C is now cancer. We talk about it. We live with it. More live than die.

With dementia what do I get?

In Shropshire (and many other places) we don’t have Admiral Nurses. If we did, there might be two or three across the county so there would be some support from specialists who “know” dementia.

We get a pack of leaflets and booklets.

We get an annual meeting with a specialist community nurse.

If we are admitted to hospital the staff may have had their 45 minute training, or may not have.

They don’t have time, as Roy says, to attend to the person who gets out of bed five times a night, who wanders, who doesn’t follow instructions and, oh surprise, has a fall. Or who is just lost in a foreign and strange land, and frightened by it.

So what about is “living well with dementia”?

I’ll tell you.

It’s about what we aspire to. How we want things to be.

It’s about ‘coming out’ and talking about having dementia, living with dementia.

It’s about campaigning for better care, specialist nurses/care navigators, proper training for all.

It’s about getting the best possible life in your community, not the stuck at home imprisonment that many now suffer.

It’s about getting proper support and respite for carers who have given up their own identity and lives.

It’s about developing a language that people will use to talk to us, without constantly saying things that belittle us.

It’ll still be shit to have the disease. Can’t change that.

But it’ll be possible to live well with dementia.

 

 

Do you think I’ve got dementia?

Do you think I’ve got dementia?

Probably not.

What do you see?

What do you hear?

What do you think?

When I told a family member of my diagnosis they said ‘that’s ridiculous, of course you haven’t. If you have, I most certainly have. I forget things all the time’.

……

 

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The question is…what do you expect?

Do you expect someone who struggles with every word?

Someone who wanders away from home and gets lost every day?

Someone who can’t remember what they just said?

Because that’s the stereotype.

That’s what the media tell you, whether deliberately or by implication and suggestion.

Kate Swaffer is having battles with organisations in Australia whose members now and then refer to us as mad, loony, crazy…or just suffering.

And I was quite taken aback when a consultant I greatly respect not long ago referred to patients who are ‘demented’. I guess it was a medical term, but it betrays a doctor centric view of a person, rather than a person centric view. And that’s what we need to change.

We may have dementia, but the word demented still has old fashioned connotations of madness or demonic possession. We really should not use this word.

While I rarely see or hear the extremes in England, ‘suffering’ is a frequent description.

But in the press and TV we only hear stories about ‘patients’ who get lost…John Noakes in Majorca the other day…or who shout and scratch from their hospital beds (because they’re frightened and lost)…or who sit in care homes, silent and staring…

(NOTE: my particular hobby horse is Trusts reporting falls as unavoidable because the patient ignored advice. Well, when you’re ill, with or without dementia, or perhaps have deIirium, you do ignore, or forget, advice. So do something Different to prevent falls!)

In actual fact, the great majority of us go about our lives, often very happy, doing things we enjoy, or doing what we still can contribute to.

There are of course the many who do have difficulties with everyday living. Transport so they can get out, finding shops, paying, forgetting what they wanted and where they are…but they’re still living, and in their own minds they are alive as much as you or me.

Everything I read in blogs tells me that as our faculties fail we, at least for a time, are acutely aware of it and may grieve. We can’t be happy all the time, any more than you can.

So, to come back the point…

What do you see when you find out I have dementia?

I’ll tell you.

You see someone who has a lifetime of experience, skills and knowledge.

Someone who is mostly articulate and who likes words and wordplay.

Someone who is able to be part of a social movement to improve patient experience, care and self-care.

Someone who can concentrate and work on detailed analysis, and contribute to solution planning.

What you don’t see, and don’t need to see, is the person who cannot switch thinking subjects quickly.

who finds conversations against the radio impossible.

Cannot make quick unprepared decisions.

Someone who cannot root names in memory.

Who finds lots of noise and people agonising.

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……..

As others have said…

When you’ve seen one person with dementia you’ve seen one person with dementia.

Everyone’s brains are affected differently.

And so are our behaviours and skills.

See the person, not the dementia.

I tell people openly that I have dementia in order to challenge the stereotype.

Trouble is, many of them probably think the diagnosis is wrong, because I am so normal!

Welcome to my world.

 

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