Diary of a Daughter and Carer – The good, the bad and the ugly
I’ve just had a very rare conversation with Dad. When I say conversation I mean that I asked him questions and he either nods or shakes his head to answer. Occasionally he is able to give me a yes/no answer.
Me: “Love you Dad, are you ok?”
Dad: “Yes”
Me: “Do you feel angry or upset about things?”
Dad: “No”
Me: “You don’t feel angry?”
Dad: “No”
Me: “Do you still have it all in your head, thoughts, feeling but you can’t get them out?”
Dad: “Yes”
Me: “Your swallowing is getting bad isn’t it? Does it hurt?”
Dad: “No”
Me: “If you ever want to talk, or at least try to talk about things you know you can talk to me.”
Dad: Nods his head and laughs.
This is the most we have spoken in weeks. So with a tear in my eye I put his socks on for him, help him up, he squeezes my hand and a steer him to the chair he will sit in all day. We did have a massive hug the other day when I got a bit upset about the fact that I had seen a baby and Mummy that morning and wanted so desperately for it to be me. He said nothing while I sobbed on his chest, he just kind of squeezed and I could tell that he was just as gutted as I was. Frustrated perhaps that he had no words of wisdom for me.
The good – that I still have my Dad to hug. That he is still in there somewhere. That he inspires me every day.
The Bad – That his swallowing is getting bad and I’m thinking we are going to have to have the PEG feed conversation very soon.
The Ugly – Quite simple: Progressive Supranuclear Palsy – give me my Dad back you thief.
The story of PSP and Tom
Good days and bad days. Today is a bad day.
Dad
Absolutely unbelievable - not in a good way!
