Last week I asked if anyone would like to share their thoughts, feelings and story on my Blog
with great thanks and respect to Duncan Ross who wanted to share his Story about his Dad
The thing about my dad, Duncan, is that he has no idea he has dementia. If you ask him he’ll tell you that he is perfectly fine and doesn’t need any help. Sure, he’s getting old, he maybe isn’t quite at his best and he has a bad memory sometimes, but he manages fine and there is no cause for concern: he will be back to his old self in a few days. My dad is 82 and he was diagnosed with dementia almost three years ago. At the time, he lived in rural Renfrewshire, but he lost his driving licence and I managed to arrange a move for him into sheltered accommodation in Barhead. When he first moved in he spent a lot of time pulling the alarm call cords, trying to switch off the lights. He seems to have stopped doing that now and doesn’t really know what they are for. And why would he need alarm cords, anyway? The sheltered housing place is great, and lots of stuff happens – social events, trips out, entertainers visiting, weekly coffee mornings and so on. He doesn’t go to any of these, because they are full of old people that he doesn’t know. He spends a lot of time at the golf club – he doesn’t play anymore, but he still likes to walk. He used to sit in the clubhouse, chat with his old pals and joke with the staff. They, in turn, made sure he ate his dinner and reminded him it was time to go home when it got dark. And they would call me to check he was OK if they hadn’t seen him for a couple of days. He doesn’t go there much now, though, because he doesn’t recognise anyone.
I am not a full time carer, but I see and speak to my dad most days. I find spending time with him really difficult – not because I don’t want to, but because he is slowly disappearing. He has very little conversation, and nothing interesting to say. I tell him about my own kids and what they are up to, but unless they are in the room, he can’t imagine them or remember anything we spoke about last time. So the threads to the past and the future are gone. The daily storytelling that binds families together isn’t there anymore. He doesn’t remember my mum, who died about twelve years ago, and he didn’t recognise my niece, his granddaughter, at her wedding. I want to tell him about what is going on in his family, and I want him to be a part of it. Mostly, I want him to be the fantastic dad that I could rely on for help and advice my entire life, and the hugely loving grandfather with an inexhaustible supply of stories, jokes and songs that my own children remember. But that person is gone, and I have a very real sense of loss and it hurts and I get angry about it. It is important, however, to direct my anger at the dementia, not at my dad. He is still here and he isn’t experiencing any of this loss – he just thinks it’s a calm day outside and everything is fine. So that helps - better he thinks everything is fine than not; better to live in a calm day than a stormy and threatening one. I need to remember I can still tell him stuff – I just get to do it more often. Spending time with him is the best thing I can do, for him and for me. And if much of the time is spent in companionable silence, then that’s fine for now. I know it will get worse, so I will try to live – like my dad – in the moment.