“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?”
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?
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?
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.
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.
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.
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.