MY DAD

My dad has had psp for 3 years, looking back I think the symptoms were there much earlier than that. He has deteriorated so quickly. 3 years ago he had a full time job, was active and alert and a very proud man. Now, he is a shell of his former self. The dad I still love, respect and adore seems to be harder and harder to find. I know he is still my dad but this disease has quickly taken away the loving man who should have been celebrating his life with my mum and watching his beautiful grandchildren growing up. He sleeps most of the day now, and struggles to chew and swallow food, he is completely dependant on my mum and the carers now. It is very hard to have a conversation with him and if he does speak it is dificult to understand what he is saying. My mum is so strong she copes so well with the whole situation.But I know she is crying inside, just like me now, but we don't ever cry infront of each other as we know that if we start we wont be able to stop and we have to be strong for my dad, if he sees us crying he will know just how soul destroying his illness is and we don't want him to know. I know that once my dad has passed away we will have plenty of time to cry.

14 Replies

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  • Hi Rachel

    I was my husband's Carer for seven years. The hardest part for me during those years was how he had changed from a vital fun loving person to someone I no longer knew. They say that after many years of marriage people no longer have anything to say to one another. This was not so with us. We had been best friends from when we were both 15 years old, we always had so much to talk about and always enjoyed a good laugh. All of that changed with PSP. Like you and your Mum I used to cry at night when he was asleep. I tried always to be cheery for him but it was not easy.

    Four years after his death, I still cry for him. I hope you and your Mum can gather strength from one another so that you are both there for him.

    You are in my thoughts.

    Lina

  • Hi Rachel

    My husband's character had changed so much prior to his symptoms being apparent, that we were on the verge of splitting up. I didn't recognise him - or even like him anymore; he just wasn't the man I married all those years ago.

    When the falls began, friends remarked on his his slurred speech and other changes, so I then insisted he saw our GP. He was at first diagnosed with Parkinsons' but after two years and a second opinion, PSP.

    We cried a lot, TOGETHER in that first year. Family were not around to support us so we were in this alone, together. I vowed there and then as soon as we knew what we were up against, that I would be there with him every step of the way. We would travel this journey together to the very end - and we did. Knowing this change of personality was through no fault of his own, it brought us together. I realised it was the PSP and not him that had caused him to be so horrible, moody and bad tempered. I looked after him for 4 years at home and then helped with his care at a residential Neurological Care Centre in Nottinghamshire for the last three.

    It makes me feel really sad, when you say you feel you can't cry in front of each other - so, so sad. Crying releases such a lot of feelings and bonds you together, so don't be afraid to. Richard and I cried a lot at first. We did in fact grieve. We cried so much until we couldn't cry anymore and after that we shed a tear only occasionally when things were not good. We would hug, cry and CURSE, PSP and then laugh, kiss and get on with things. We believed in the saying 'know your enemy' so read a lot about the illness, discussing it together. Richard wanted nothing kept from him. He knew what the illness could bring so he was prepared and took everything in his stride.

    It's not easy is it? PSP really is a pig of an illness. Never forget we are all friends here and understand. So, feel free to let of steam with us.

    Love,

    Maggie x

  • Rachel,

    PSP is a shocking, horrible disease. It robs us all of the life we were expecting. Shout, complain and cry when you need to. Know that we're all here- sometimes we shout, sometimes we listen- we all know what it's like.

    Hugs

    Fiona x

  • Rachel

    You could be describing my Mum. It's so hard to hang on to the memories of the person they were, and so hard to imagine that they're still in there somewhere, probably screaming to get out. That for me is the hardest thing of all to deal with. You're not alone. Hang in there.

    Idris

  • Hi,

    As difficult as it is he is still you dad and he has only changed because of PSP. Inside he wants to be himself again but cannot control what now is happening to him. Be patient be loving and make the most of him as deep down he will know what you are doing for him. Dont be affriad to keep your emotions in and cry with your mum it will help you release your anger over why, why dad. But try not to make that happen in front of your dad! He will for sure know what you are crying about.

    I am at month 9 from my dad dying and it still hurts and I don't think it will ever go away. I cry when i look at blogs on here but this site really helps, I wish I knew about it when my dad was still here. However in a weird way it is therpautic now as we felt like we were the only ones dealing with PSP.

    Love your dad as it is still him it's the crappy PSP that is changing him, make him as active as possible while he still can, take him swimming that's great. Let him stuff his face while he can. When it get's to the point when you are advised about peg tube fitting as their are always pro's and con's to this and having gone through it you can E mail me and I will be honest about it from my experience.

    Tell him you love him and give him a massive cuddle when you see him next.

    Keep well

    x

  • Hi Rachel

    I lost my dad who was my heart and soul, not long ago to this horrible condition and I still talk to people with disbelief how the condition changed the dad I knew. We all know what you are going through and here is a great place to just let go and shout and cry and say how you feel, where people understand what you are going through and offer some words of advice and comfort.

    I know its horrible but you are there for him and he will know that and your mum however strong she is will be taking her support from you. And you sound a very loving daughter

    Keep your chin up and take care of yourself. All my love to you and yours

    Lesley x

  • Thank you for all your support it is just what I needed. I had a heart to heart with mum yesterday, and even though we discussed that dad is now getting to the later stages of psp the talk helped us both feel better. He is too tired and weak to go out now, even though he is in a wheelchair. He also gets anxious and stressed when he goes out and it takes mum hours to get him calm again. Thankfully mum was smart and took dad everywhere he wanted to go from the start of his illness up until a couple of weeks ago, when it became apparent she couldn't take him out anymore. They also had a wonderful cruise and family holidays with me and my family, which we will remember forever. I have always been dubious about writing on here before, but I feel this may help me to cope with psp. It is nice to know I am not alone and I feel great comfort in knowing that we can all help each other. But of course it goes without saying that I wouldn't wish psp on anyone and I wish that none of your loved ones had this terrible disease. Thank you x

  • hi rachel

    i have psp but have been lucky in that it is I think the slow version - diagnosed dec 2010 but symptoms apparent (balance ie falling over /co-oord / handwriting problems )from 5 years previously and ]ow speech is very garbled-

    I do nto have any family to care for me but have a great carer through th Home instead senior Care org = recommended on tte PSP website

    so i am able to ge things in place whilst i am still able

    it has been good for me to rely on others for help and care

    and this website is great for sharing

    so plz stay on it and say whateer you need ot say

    Love jill

  • Hi Rachel and everyone.

    Rachel, you could have been describing my life in a nutshell at the moment - my dad and yours seem at about the same kind of stage of this horrible disease...and you have totally echoed my grief at how my dad has changed, and what this has meant for him and my mum, and us all (my family have just moved back to the UK to be near my parents and to help out). I struggle every day to find any answers as to where this has come from, and to make any sense of it whatsoever. My mum too is a very strong person, and I feel very weak by comparison - I am a mess of emotions and have to be strong infront of my dad as you say - it's very hard! I miss the way my dad was so much every day - I long to hear his voice again, to have him play with my kids, to be able to tell us about his childhood etc - it's too late for that now. I just now have to spend as much time with him as possible, and any day that he smiles and tries to participate, is a beautiful day for me!!! love to you all - I so know what you are going through - i didn't think there would be anyone out there who was going through exactly the same!

    fran x

  • I am so sorry for your pain FranR, but you are no longer alone x I am glad your dad is able to brighten up your day, I am sure you being there makes him very happy especially as he knows you are there to support your mother. Be strong, and remember we are all here if you need support x

  • Thank you, Rachel - that means so much. Best wishes and good luck with everything, Fran

  • This week my dad has been classed as being on the Pathway. This is a term used by the medical proffession that means he is unlikely to survive the next 12 months. I already know that dad is getting nearer to the end especially as his ability to initiate swallowing is becoming harder for him. But to know that it is down in black and white makes it harder to have hope that he will be around forever. Dad doesn't want a peg feed and we stand by his descision 100%, especially as he will soon be at the point when he is paralysed lying in a bed 24 hours a day unable to communicete. I know not everyone gets to this point, but the way psp has taken a hold of my dad it is very likely he will get to this point. Mum says the nurse has said his body is getting tired so I hope he will pass away peacefully in his sleep with his family around him or when mum is giving him a cuddle.

  • Rachel, I agree with the no PEG. My wife (PSP) and I have had this discussion and she does not want one either. I'm sure this will make it difficult but her wishes will be upheld. Remember, we are here for you.

    Jimbo

  • My heart goes out to you and your mom. This PSP takes its mental toll on us all and hits those hardest who love the most. Often the tears are hard to hold back but there is a time for them away from your Dad.

    Jimbo

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