This morning, my Dad mumbled "I do love you, your Mum & George" I felt like I'd been hit in the stomach. I hadn't heard him say he loved us for a long time.
He then said "I'm sorry. It's just the disease".
He told me "don't let it ruin your life".
In-between all this, he was crying. I stroked his arm and then hugged him. This was the first time in 3 years (anything even close to a hug would only have happened when he had his arms around my as we were picking him up off the floor), the last time being the day I went to University.
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HannahDaykin
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Hannah, this makes me so sad. One of the things I have been feeling lately is a loss of my mum's love, which was always unconditional and vocal. Now it seems like she has slipped away from me and I get so little back from her. It is a huge hole in my life as she was always my best friend and greatest support.
It is like I wait for little tidbits from her - when she is spelling things out for us, I long for it to be 'I love you' or something I can hold close and treasure when she is gone, but mostly it is things like - take me to the toilet or change the TV channel!
This is the first time I have acknowledged this as it feels selfish, but it is a loss and should be acknowledged. I still want and need my mum to love me.
I am so glad that you had that special time with your dad
I'm so pleased you shared that moment with your Dad, it will something you remember when he's no longer here. I hug Mum a lot these days... sometimes she hugs me back and sometimes she doesn't - but that's ok.
Always remember your Dad hasn't stopped loving you - he just struggles to show you these days, just as he struggles with all sorts of things he used to do.
Just tell him, as often as you can, how you feel about him. He'll understand even if he can't respond.
Hannah, I cried when I read your comment. How sad to read that you have not hugged your dad for such a long time. I know everyone is different but we have always been quite a demonstrative family and not afraid to show our feelings. This illness has made Tony even more that way and he shows me a lot of affection every day. Each morning after we have got him showered and dressed his words are "Huggle" time. (His word for a hug). Even after 40 years together we still say "I love you" each and every day. I dread the day coming when he will no longer be able to say those words. Your dad must love you lots, Hannah. If today's words from him are an out of the ordinary gesture from him, that must just prove just how much he cares for all of you.
Thanks for sharing this with us. When my dad hugged us before PSP we used to call them the rib crushers. Dad had such a strenth we'd be saying 'dad stop you're squeezing the breath out of us' and we'd laugh. What I wouldn't have given for dad's rub crushers later on. At the very end I'd put my arms around him and he couldn't quite manage to get his arms around me but he's raise his hand when he could and touch my face, something he'd never done before, it was always so tender and sad. I miss him so much.
I am so pleased you got to hug your dad and hear him say he loved you, its another memory to treasure. Take care of yourself and I send lots of hugs to you and your dad.
That made me cry too... My mum who had PSP died in June of this year and in the last 6 months struggled to communicate both in words and in actions. I too wanted to hear her say she loved me or just for her to hug me or touch me in the way that showed she loved me. She couldn't. However I knew that if she could, she would have done. In fact the lack of demonstrative love from her made me show and tell her much more. I would hug and kiss her whenever I visited and always told her I loved her before leaving. Although writing this has made me cry (again!) one positive is that I have no regrets. I said and did all that I could and wanted before my mum died.
I'm going through exactly the same with my dad - I long for him to say the words...i just end up hugging him and kissing him over and over and I'm so reluctant to leave the room - I keep coming back in for one last I love you, Dad! Just don't get why it has to take everything away in quite so all or nothing fashion - walking or talking but not both. I want to do the same for my dad, but feel already that the memories i have of him when he was fit are slipping away...will I be able to remember dad fully?
Sorry for bothering you - I just really related to what you'd written in your reply.
I'm sorry to hear what you are going through with your dad. I agree that PSP is such a horrible condition in the way that almost everything is taken from the person you love. I found the communication loss the hardest to bear and also the way other people would treat my mum - as if she was very old and very stupid (she wasn't either of these!).
During her last couple of years as she deteriorated, I watched her go through the stages of gradual paralysis in all aspects of her life; I was with her throughout her last day and was by her side when she died. As her husband wanted 'her' (as soon as she had died, I knew my mum wasn't there any more) to remain in the house overnight I obviously had very clear images of her sick, and dead. However, my memories of my mum immediately after were ones where she was fit and active. I don't know whether it's the brain's way of protecting you emotionally or what but I still struggle to picture my mum as she was with PSP. Of course I do have memories of her in the last few years but the ones that return are the positive ones. So, try not to worry about this, I'm pretty confident that you will be able to remember your dad in the way that you, and he, would have wanted.
thanks so much for that Alison - it means a lot to hear. my dad is neither stupid nor old too - i hate seeing people talk down to him in his wheelchair, or worse still talk over his head! PSP robs people of their life when they should be enjoying it most doesnt it - Dad really was once a loving active granda...I'm reassured by your words that PSP won't rob me of these memories.
I hope in time your pain lessens. take care and thanks again. it's good to know i can talk to other people about it.
All the best,
fran
This moved me much! Mum would move heaven and earth for all of us but never hugged us . I hugged her a lot when she could no longer speak as she was so brave and I felt so helpless
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The Bluebird
How much sleep?
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