Diary of a Daughter and Carer – The good, the bad and the ugly

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.

7 Replies

  • I think the new PSP Association t-shirt says it all 'I hate PSP'

  • Thank you for having the courage to share that with us xx

    Love and hugs to you and your Dad!! xox

  • AmyT - you are so brave to put into words what happens with this terrible illness. Don't forget, we do understand "exactly" what you mean and if it helps to get it off your chest on here, just go ahead. Your comments will be met with both empathy and much understanding. Love to you both. Take care....xx

  • Hi Amy

    I had a similar conversation with my husband or who was my husband once but because of cbd he became my child as dementia started to take hold at age 54 eventually he refused to talk anymore when he couldn't face what was happening to him I wouldn't wish this disease on my worst enemy it is horrid and degrading

    Take care and cherish each day together

  • Thank you for sharing and keep those coversations going with your Dad. Your loving relationship is refreshing.

  • Thank you for your blog. Just reading what you're going through and knowing that someone is going through the same thing is very helpful.

  • Lovely, as ever, Amy.

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