Dear Dementia

An open letter to Dementia, which finds itself dwelling within my mother.

Dear Dementia,

You arrived a few years back, uninvited, but if we’re all honest, not entirely unexpected. You have made your home within the wonderful playground that is my mother’s brain. You are called Alzheimer’s, but giving you a name doesn’t make you anymore welcome. When we learnt of your arrival, we did what all decent human beings do in this situation, in a technological world… we googled you.

It wasn’t very nice.

People talk about you in two very significant ways:

The long goodbye

Articles, reports, studies and personal blogs and posts use the phrase ‘long goodbye’, because you do what you do ever so gradually. You take day by day and step by step a little bit more of the brain and consequently the person that brain belongs to away. Those around that person, friends, family (in my case) and allies included have to watch all this, but have the apparent positive spin of having time to do more with those you dwell in. So, I guess, thank you for that.

The slow decay

Then there is the other way you are spoken of. The more cup half empty approach and more truthfully viewed lens on the situation. You are in front of our very eyes taking something away from us and there is as of yet very little that we can do about it. This amazing and precious thing we have in front of us has to slowly and surely whither and eventually die.

Right now as I write to you, you haven’t done anywhere near your worst with my Mum. She is still completely herself and that is to say she’s amazing. Right now, she can’t really keep new things for very long. Where she’s been, who she’s spoken to and what she’s spoken about are starting to slip away. She still knows all of her close family and she remembers all the little details of us growing up. She remembers the man who has stood by her all those years and she knows where she’s from and remembers the man and woman who raised her.

But… I know what you are doing. I’m aware of your end game. I know what you will do with my mother by the end of this. I know about and I fear for the day I go to see her and eyes that have looked upon mine through countless joys, trials and journeys will look at me as if looking for the first time.

At the moment when we say goodbye and we hug she says three words to me. ‘I love you’. But your plan is that some day she’ll say three other words. ‘Who are you?’. I’ll have only three words, they may be powerless by then, and they may mean nothing to her but still I will reply, ‘I’m your son’.

Your cruelty will be to take her body and mind and be it’s undoing.

But you know all of this. So what’s the point in me writing to you? Why bother?

A deal

I had this ridiculous idea. Maybe, just maybe I can reason with you. Maybe no one’s tried. Maybe you’ll listen to me. Maybe you’ll see I’m offering a compromise. So here it is. I want you to take certain memories in exchange for keeping some.

My mother has a lot of memories.

Take away the memory of her having to see her Dad and his amazing brain die. Take the memory of having to say goodbye to her Mum too, knowing as the oldest sister of three that she would have to carry the family through that pain. Take away the memory of then having to see her sister die. Take away the memories of all the times that her three children have made mistakes that can’t be fixed and for all the times that other people have made mistakes that have meant that her children can’t be fixed. Take away all the times that her husband and her children have given her less than she deserved and any time she has felt that.

You can have all of those.

I have to face what’s coming, knowing with some small victory that you will take those. You’ll take those, but you’ll also take the ones I’m really not happy with you taking. The times we made her feel, inside and out like the way we see her and the way she deserves, which is not often enough. The births of her grand-children and all the wonderful ways she’s smiled with them. The laughing, the countless time she’s laughed and snorted as she has always done, letting go as always with abandonment to laughter. The pride that she has when she looks at us, something she gives when often it is not earned.

You aren’t going anywhere. Science hasn’t figured you out enough to show you the door. We can’t do anything about that. My mum is one of the 850,000 people in the UK who you currently affect and at the point of writing this that’s 850,000 people who will slowly decay, leaving 850,000 families a ‘long goodbye’. My wife and my children may have to at some point say a ‘long goodbye’ to me.

There is no major positive spin to my letter to you, no triumphant response to your attack. No whimsy great enough to tackle the crushing final victory you will finally have.

But…

For now, we have our memories of her. We have the time she still has to make even more. We won’t easily forget how amazing she is. For all the people you affect, who have people around them, they will be doing the same.

For the very cruel times you dwell in the brain of someone who doesn’t have anyone around them, I hope and pray that the awareness of you and what you do is growing great enough to let communities and families look out for those around, who might be one of the ‘great confused’.

So in closing. You will one day win. You will be the end of my mum in the earthly sense. But the gap in between although brutal at times will be our chance to stand against you, defiant.

P.S. Some days she forgets you exist.