Who am I without my name?

 

“How may I live without my name? I have given you my soul; leave me my name!”

Thus spoke John Proctor in The Crucible.

“Who am I without my name?”

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Am I my name?

Am I what people think of me?

Am I my reputation?

Am I what I own? Where I live and what I drive?

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Or am I what I think and what I do?

Cogito ergo sum. I think therefore I exist.

Am I what I say? Do my conversations define me?

In which case, who am I when I can no longer find words and put them sensibly together?

 

Who am I when I lose control over my life?

When I can’t make decisions?

Or when they are taken away from me?

Who am I then?

Do I cease to exist when I am unable to decide what I want?

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What makes humans different from other animals?

I think it is that we can think about more than just self. More than survival.

And we can engineer things, create ways of doing things, ways of improving (?) our lives.

We have language. And with words you can think things that you can’t think without words.

You can empathise. Imagine. Explore. Create magical feelings…with words.

You can think regret, or relief, or joy, or anger…

You can dream of things you might do, mountains you might climb, people you might hug, sights to see, seas to swim…

I’m no philosopher, but I wonder if without words you can still dream, imagine, explore, feel…

I think you can. And I think later stage dementia is about feelings without words.

I’ve already, recently, had an experience of total brain fog…blank…whiteout. And I assume that it is what happens in later stage dementia. When parts of your brain really don’t work.

Brain failure, as Alastair Burns puts it so well.

It seems to me that there is good evidence that happy experiences improve both the mood and the behaviours of people living with dementia, even though they may not remember the events.

That is the theory behind reminiscence, activities, singing, etc.

These things change behaviours, calming people for several hours.

They may not have words at that stage, and they may be in a fog, but they feel better, happier. So they get less agitated, angry and frustrated.

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So, to return to the beginning, who will I be and how will I feel when I can no longer find words and make decisions?

The answer, I think, is that I’ll rely on other people to take me to places I can no longer find.

But in the meantime what I ask is that you don’t take away from me my decision making until I really can no longer do it.

Let me make mistakes, and misjudgements, unless it’s dangerous to other people.

I don’t want to live in a bale of cotton wool, feeling nothing but safe and sound.

I’d rather fall off a cliff, or drown, trying to do something that makes me feel good, than live to a ripe old age, waited upon and wiped clean, lost and wordless.

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Someone said to me the other day that the early stages of brain disease must be worse for the person than the carers, but the late stages worse for the carer, because the person living with dementia won’t be aware of anything.

I wonder.

If you get agitated and angry but can’t express it in words, it must follow that you don’t need words to have feelings.

How long do you continue to have words in your mind after you become unable to say them to anyone?

After all, advanced dementia is not persistent vegetative state. If you can display feelings through behaviour you are not in a coma. But you are trapped.

I think we are mistaken if we assume that a person without words is a person who is unaware of their situation, or is a person who has lost their right to live with dignity, compassion, and warmth.

And I think that people with advanced dementia are still people who deserve and need our respect and support.

 

 

A speech to General Practitioners

There are around 5,000 people in Shropshire living with dementia, of whom about 3,500 have been diagnosed. Some 2,000 live in care or nursing homes.

And there are 240 living with young onset dementia, of whom about 50 have been diagnosed.

I’ve estimated that around 10% of the 3,000 in the community ever access support from groups like diamond drop ins, or dementia cafes. Another handful meet in peer support groups.

So what support do I and those like me have? And what do we want?

We have occasional meetings with staff from the memory service. Pretty much when they choose, not me. I can contact them if I want.

I meet my GP now and then, but he’s no specialist, and it takes three weeks to get an appointment, so any immediate but not acute needs tend to fade away by the time I get there. And there’s no time for a proper talk.

I can meet a support worker from Alzheimers Society, but there’s only one for all the northern half of Shropshire. That’s going to be about 1200+ people to each staff. And they’re not promoted by general practice or the memory service.

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There are peer groups, self organised, in Oswestry, Shrewsbury, and Market Drayton, with no funding, and supporting about 25 people. I’m developing a number of Deep groups, like the one I started in Shrewsbury, but without support and promotion by general practice it’s very difficult for people to know about these. I started one in Church Stretton, but it wasn’t promoted so only one person came. I’ll try again in September.

People living with dementia lose their confidence to go out, to continue to do what they enjoy, and what keeps them active.

We don’t want activities for just people living with dementia. We want to be part of our community. In walking groups, at the pub, singing, bowling, shopping, painting, flower arranging, gardening, travelling, chatting. Alongside everyone else.

Where do we get information? How many people can use, or even know about, the community groups index maintained by Shropshire Council?

The DAA started the Shropshire Dementia Roadmap, and Shropshire Partners in Care paid for it for the first year. But we couldn’t get any support from the CCG to help maintain it or pay the fee, so we’ve had to drop it. It would have provided a huge source of national and local information for general practice and everyone else to use to support people living with dementia.

How do we find out about assistive technologies that help us maintain independent living?

How do meet our peers, and people at the same stage as us (note, stage not age) to chat, share experiences, and help each other.

And you may ask…do I have a shared living plan? No. I have a piece of paper that my memory service sends me after my meetings, which states what the nurse said and what she thinks I ought to do, like don’t take risks , don’t do too much…

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Do I have a plan I discuss with my GP? No. Never.

So what happened to that? We need to sit down with someone and talk about what makes life worth living, how to be resilient, how to be active, and how to get medication right!

People live with dementia for many years. It is now the leading cause of death. 25% of all hospital inpatients live with dementia and spend three times as long in hospital as others. Inpatients living with dementia often never return home again after discharge, because they are disabled by hospital stays, risk assessments, and lack of support in the community to return home.

Last year Healthwatch Shropshire led a project to co-design a new model of support and care for people living with dementia, and their carers, in Shropshire and Telford. It was funded by the Public Health department at the council.

About twenty people were involved, including carers, people living with dementia, Shropshire and Telford Councils, both CCGs, and SATH, and of course Healthwatch.

Five groups met to evolve a model across five strands…preventing well, diagnosing well, living well, supporting well, and dying well.

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A feature of this model is the use of Dementia Companions to provide support, information, sign posting, assistance and advocacy for people living with dementia and their family carers, from diagnosis to…death.

This model is being introduced in Telford this year, with a pilot in Newport, and wider roll out later.

We really need Shropshire to invest the modest sums required to make this work here too, as there is very little support at the moment. So we really also need you to lobby your member organisation, the CCG, to invest in it.

On another note, I chair the Shropshire and Telford and Wrekin Dementia Action Alliance, or DAA. This is a coalition of around fifty member organisations and businesses across the area, all signed up to work to become more dementia friendly. Our members also offer numerous dementia friends awareness sessions, and we have around 12,000 dementia friends in Shropshire now.

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We have two GP practices signed up as members, and we would really like more to do so. And Care homes as well. Sign up is quite simple, and requires a few commitments to usually inexpensive changes. Like staff training, having a staff dementia champion, improving signage in your buildings, and perhaps lighting, and changing patterned flooring.

These small changes make huge differences for people whose brains are not processing visual and auditory information very well, or who may need a little more time and explanation of things.