I see you. For now.

I mainly see my dad in photos because I live on the opposite side of the world to him. I also mainly see him in photos because he lives in a care home. I see my dad doing things that we did as a family but he’s now doing them with other people (just today I saw him at the seaside with his care home gang – quite confronting in a way – it takes me back to the days he would take us kids and makes me question why I am not there with him right now, paying back his time and love). I see my dad and wonder what he is thinking and feeling. I see him and I zoom in. I try and get an insight into his brain. I see my dad carrying on, making the most of situations, as he always has. I see my dad teaching others, as he always has. I see my dad having a laugh. I see my dad.

With frontotemporal dementia (FTD), my dad is not so much losing his memory as much as he’s losing himself. His behaviour has changed, his risk assessment, his decision making skills, also personality such as his sensitivity, his awareness of social norms, plus his balance and dexterity. Pretty shit. His memory is mostly there at the moment, despite him sometimes being very muddled/confused and the odd episode where he is really not with it. But when people ask me ‘does he know who you are?’, it’s a resounding ‘yes’. His memory will fade as time goes on, but for now, he still knows where he is, how to make a sandcastle, how to joke with the care home staff and bury them in sand (just like he buried me on a pebble beach in Norfolk some 35yrs ago), and he knows what to write in a birthday card. And he can write still, albeit a bit scrawly, he still tries to do it. He has not given up. He amazes me.

Flowers in stripes inside my birthday card

‘Putting’ him in a home happened so fast. We all thought it was just a temporary break, a respite, but it soon became clear once he received professional aged care that he needed more than we could give him at home (well my mum and my sisters to be honest, I wasn’t there day to day, month to month, well hour by hour actually…he needed constant watching). The emotions were mixed. Relief, guilt, uncertainty, disbelief, confusion, regret, happiness, gratefulness. And it continues to cycle through a raft of different ones, new ones sometimes, or ones I’ve worked through and have to reassess and work through again. But seriously, I can do that if my dad has to live in a home. It’s the least I can do. It’s making me stronger. I’m learning. And over these last few days I’ve received a few signs that I must not give up. I cannot sweep this under the carpet, despite not always knowing how to deal with it.

This weekend I read a magazine about being a better parent, to help me to be more in the moment and the parent I wanted to be. La la la, sounds so self indulgent when I write it down…but mostly it’s about coping. Anyway…one thing that I particularly recall reading was that when you become a parent you are almost giving birth to yourself, to your life, because you learn so much about yourself. True true. And I think it’s a bit the same with death, our own or that of someone close. We learn about ourselves, about how to be. Life is a lesson after all.

And funnily enough, tonight whilst eating dinner, I was watching Australian Ninja Warrior and a fabulous contestant Fred Dorrington (well they all are fabulous really, but this one is special to me) talked about his dad being ill, having frontotemporal dementia. Boom, there it is. FTD. Again. Another family. The dad is still alive but not really himself, not aware. So sad. Fred said how his dad always kept on going, determined. Now I’m not going to be able to channel that and be a ninja warrior (although saying ‘ecki thump’ to Freddy Flintoff, a fellow Yorkshire born-and-bred person might be a giggle) however, it’s what I was just saying, we learn from others about how to be. Life is a lesson. Fred is learning from his dad. I will learn from mine. Best wishes Fred.

And the last thing that happened to cement me writing this was the birthday card I received from my dad today. His handwriting was different and apparently he moaned about using a biro (he most certainly prefers a fountain pen), but there he was, pen on paper. Trying. Keeping on keeping on.

So I see my dad. I’m lucky for that. He might be different from when I was a kid, but right now he is still slightly more him than not him (I know this will switch one day), and for now I see him. So I will continue building sandcastles and snowmen (which I think I did on the same day as he did the sandcastle – on opposite sides of the world) and I will write with nice pens and cherish my love for maps and try and be on time (if not early) – thanks for these traits dad. His determination to continue as he always was is incredible. I will stop worrying about what he might think and feel, and just make the most of him being.

Hopefully I will see him again soon, as he wished in my birthday card. But for now I see him in photos and I see him in me. (Gosh my teenage self would never have been happy for me to say that, oh isn’t ageing a funny thing?)

Love Stripes & Trees xxx