To have a parent or older relative suffer from dementia - including its most common form, Alzheimer's disease - means losing a loved one over the cruellest of terms, a slow fade-to-black, a life gradually fading, like Marty McFly running out of time, only permanently.
It is, of course, no more cruel than cancer, heart disease or any of the other scythes that take our closest - and, let's face it, ourselves, eventually - from us. But to witness your own flesh and blood being deleted pixel-by-pixel is hard to take on board.
Perhaps I'm lucky: my father's Alzheimer's is in the early stages, and the progress is relatively slow, which is not to say that it won't speed up down the line, and the degradation of life becomes more apparent. But it will happen, and the soul-searching that will have begun as inevitable murmurs in the mind, will crank themselves up.
Which is what has moved me to reproduce, in full and unedited, this note, Monsters, written by my dear friend Saskia den Hollander and posted on her Facebook page the other day just as she and her family were contemplating the progress of the disease in her own father.
She wrote it for her own benefit, to try and come to terms with the profound sense of loss that comes from seeing a man gradually disappear into themselves. But having read so many things about Alzheimer's - news reports, medical studies, other blog posts - nothing nailed it quite like this did. Nothing has moved me more, either. Thanks Sas. x
You're gone. But you're still here.
You're here. But you have gone to a place where you are fighting. But it's a fight you cannot win. It's a fight we cannot help you win. It's a fight we are losing as well. Where we are losing you.
We are losing you to a vicious monster.
The monster which makes you forget. The monster which is changing you.
Which is changing your personality, your intellect and every other thing you stood for.
A monster which is degenerating your brain to the brain of a child.
A 79 year old child.
I'm trying to console myself with the idea that the one thing we, as grown ups always regret we lost, our child within, you are about to get back.
But who am I kidding.
There's nothing soothing about this monster. No good part nor does it have a better side.
The only resemblance of a child I recognise in you is the part where you behave as a child, because the monster has taken away your ability to express yourself in a different way.
You simply cannot understand anymore why things are happening to you, what is happening around you. What is happening?
So you cry.
Like a child. Like a 7 year old child.
And this monster makes us respond to you as if you are a child. We use our friendly voice. We try to comfort you. We distract you. We dry your tears. We try to make you understand that there's no need to cry.
You're crying but what are you really trying to express?
I understand that you are crying because you feel helpless. Because you do not know what to do.
And so do we. Cry. Feel helpless.
Don't know what to do.
You still know who I am.
But I know that the monster will take this away as well.
I'm trying to stare this monster in the face with all my fears and shouting at it
what are you waiting for?
why don't you take all of him?
You already took away a proud man.
You took away a husband. A father. A granddad.
His ability to remember.
His ability to remember what he wants to say. What he was saying. And why he was saying it.
By now he doesn't remember why he started a conversation, let alone how to finish it.
His ability to do things. Even the simplest things. Play cards. Play games. Play guitar. Do groceries. Cook. Count. Write. How to dress himself, although he fought a very long and a very good fight there.
You took away his memories.
The very short ones flew out of the window like this.
The longer term ones, now, like that too.
You're taking away his definition.
You're taking away his dignity.
You're giving him in return
You are making him feel lost.
It just doesn't matter how hard we try to find him. Try to bring him back. Even if he has to borrow our memory. But we are lost together with him.
If you are not taking him away in one go, please take him to a place where he doesn't have to feel like that anymore. Take him to that void of emptiness where there are no memories of what has been.
Just don't let him hang around like this.
Don't let him be stuck between nothing and something.
An undefinable anything.
Let him please find that place where the sky is blue, clouds are slowly drifting by and where blue birds sing.
Let us know that there is some sort of redemption while losing so much. Show us. Reassure us of his acceptance of his loss. Our loss.
But maybe you just did.
Is that what you tried to show me this evening?
Just before I left to go home and kissed him goodnight?
I acted silly, trying to make him laugh, in the same way as he did when I was a child.
You made him give me, an almost empty look. And you made him ask me, why are you doing this?
I said; "because this is what you thought me dad, you always did this when I was a child."
And you replied: "what has been has been."
And right there I could feel it. I could feel you. More present then ever before. You stared straight into my eyes. My mind. My heart.