EDIT: I drafted this post several weeks ago. It’s incredible to see how quickly things are deteriorating for my Dad because most of this is now irrelevant. But I want to keep it here so I can know that there was a time when I felt there was still an opportunity to fight.
This is my current song. The one that is playing through my mind as I think of my Dad. I’ve always associated my Dad with Tina Turner as he and my Mum have brought us up listening to her and Chris Rea. But still. This song, right now. I feel in some ways that I’m being quite selfish. I want my Dad to ‘stay in the room’ because I want him to know me. To know my Mum. To have him know who Darcey is. To have those years of silliness with her. And it breaks me to know that we’re not getting that. I remember crying next to my Dad asking him to fight this. To remember me. To remember us. But the thing is, that’s the most selfish thing ever isn’t it? The world I want my Dad to be in, with us, is one where he’s regularly frightened, unsure and quite literally doesn’t know where to sit down. I’m really sorry that ‘there’s nothing that I wouldn’t do to make you feel my love’ Daddy.
‘I know you haven’t made your mind up yet’ – I know you’ve not entirely gone. ‘The storms are raging on the rolling’. The winds of change are blowing wild and free.And I don’t want them. I want the calm.
My Dad has always gone to the ends of the earth for us – as has my Mum – for my brother and me. To earn money, to put me through Uni and my brother with all the kit he needed for his running.
My Dad often feels the world is on ‘his case’. Last weekend I was able to be his refuge from the ‘evening shadows’. I cared for my Dad whilst he couldn’t get to sleep. Whilst his brain was wandering.
One of the things that gets me right now is that we just don’t know how long this is going to ‘go on’ for. I really don’t want it to be years. For several reasons. The first and main one, is that I know that this is not what my Dad wanted for his life. My Dad for so many years, has been so very clear – he didn’t want to go into a care home. Ever. He didn’t want to live a life where he wasn’t independent.
And selfishly, I don’t want to remember my Dad like this. I don’t want my children to remember my Dad like this. He was the Grumpy Grandad who played football, was silly at bedtime and got the boys too excited at bedtime.
I worry that you’ll judge me for what I’m going to write next. But not enough to not write this.
I want my Dad to have DNR. Do Not Resuscitate. I know him. I know what he wants. And it’s heart breaking to have him be alive right now. I worry that once he’s gone he’ll haunt me and tell me off for letting this happen. I also worry that we’re not doing a great job of caring for Dad right now. He needs to be in the hospital. I don’t know how we can help him. But how can anyone other than us, caring for him around the clock ever be good enough? He’s my Dad. He deserves nothing less.