Did you ever watch the film 2001: Space Odyssey? There’s a scene towards the end of the film where the lead character, Dave Bowman, shuts down the ships main computer, HAL, because he’s malfunctioned and killed the entire crew apart from him. He does it by ejecting the computer’s memory banks one by one. As he’s doing this HAL is talking to him, asking him to stop, saying that he can feel his mind fading out. And as he narrates the experience, his ability to articulate that experience also fades and becomes more facile.
Well that’s my/our experience of dad. That’s as close to explaining what it feels like from our perspective as I can get.
But it’s OK. He does still know who we are; there is still recognition and there are still memories. He’s incredibly hard work, like managing a 200lb three year old and when he gets his ‘no’ head on, it’s especially hard. But I only see him once a month or so. My mum has this constantly. She does get respites though and these are precious moments to her.
I still love to photograph him though. He's so willing and there is some recognition in these moments that just doesn't happen elsewhere. But each time I photograph him I am painfully aware that the chances of it being the last get a little higher.