PSP horrible thing

Hi just reading all your messages and I feel so sad George has been at the centre today fe is asleep in his armchair I feel so sad when I look at him, he has started walking with one hand on the walking frame and the other on my wall our anything he can hold on to, he seems to be going down hill fast. There is no medication I feel so useless Yvonne

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  • Dear Yvonne please be reassured you are not useless even though we do feel like it some times. It is hard to watch our loved ones go down hill and all we can do is support them to the best of our ability. Because Brian was being treated for parkinsons and he was on way to much of the wrong medication he had got to the locked in stage but since stopping the medication he had a dramatic improvement but since then he has had several chest infection and that set him back. But we do take it one day at a time laugh when we can cry if we must but love each other all the time. Big hugs to you and remember you are not alone. Janexx

  • Dear Yvonne

    When I read your post I didn't see someone who is useless. I saw someone who is in a similar position as I am. We can only do our best and be there for the one we love. Our love is a whole lot stronger than non-existent medication. You're so wise to take one day at a time. Sometimes I feel I'm taking, one morning, afternoon, evening, disturbed night at a time. it's my way of getting by. MEGAHUG. RK

  • Thank you for the kind words, just relaxing on the sofa while George is asleep getting ready for the night xxxxxx

  • Don't feel useless - being there is what is needed and being there is not always easy but there we all are -be proud of yourself . Georgepa

  • a lot of family friends etc , keep telling me how LUCKY MY HUSBAND IS TO HAVE ME , HOW MARVELLOUS , STUNNING , REMARKABLE AND SO ON I am ..

    I let them know that there are so many others all over the world doing exactly the same thing as myself , I am not doing anything special . we have been married for 56 years and both been loving and caring for each other . only difference now is that we are both older and it is harder .

    it's such a cruel complex illness which changes from hour to hour , you have to be living with it or alongside it day and night to fully understand what it is like . I always say WE HAVE PARKINSONS .

    our Parkinsons nurse just tells me to carry on doing what I am doing .

    hugs to you all , Carry on doing what you are doing ...Nobody will do it better

  • Thank you it is so helpful knowing there are other people that understand what this illness is like we must keep strong and look after ourselves as everyone keeps saying Yvonne xxxxxx

  • Dear Yvonne,

    You are far from useless you have been put in a very difficult and trying situation like all of us.

    I don't know whether anyone else has experienced this but my husband gets quite snappy and pushes me away sometimes which I find very hard to deal with. He was always very independent and quite a private person before this illness took over him, so the only explanation I can think of is that he feels embarrassed that he needs so much help now.

    All we can do is keep on loving and caring for our loved ones, helping them get through the situation they have found themselves in, we can only do our best,

    We are always here to chat to each other which is definitely a good thing as we all understand each other,

    Sending you much love....Pat x

  • Yes my husband was a very private person, but now I have to help him shower and get dressed he is much better with it now, some days he says some horrible things but I know deep down he does not mean it, but it is still hard to cope with when you are so tired but every day at a time chin up Yvonne xxxxxx

  • my husband sounds very much like your except he doesn't push me away .

    although has always been. A very private and sometimes self conscious man .

    It has been hard for John to accept everything I have gradually have to take. Over and do for him but he has done so gracefully which makes it much easier for me ,

    particularly when using the toilet , he would cry

    And get so upset that he needed me to attend to him . I didn't find it a problem other than the sadness I felt that it was needed ,.

    when ever he started to get upset I would jolly him along and start to sing and try and get him to joi. In with me , anything to distract him from his sad thoughts .

    in fact although he now has carers in mornig and night O still do all his private parts myself because O know how much. He feels embarrassed about it .

    I am slowly letting go though doing it gradually .

  • Next time you feel useless, say to yourself, what would he do without me? Think of all the things you do for him, are they of any use? Of course they are. We can't make our loved ones better but we can make their lives more bearable and they would be lost without us. OK, they may have carers but carers don't have the love we feel, the connection we have or the memories. So next time you pass a mirror, look in it and say, "Hello me, I am useful and needed and loved". If nothing else it may make you smile at doing something which may appear crazy to you.

    I hope your day is good and you have a chance to laugh at something.

    X

  • Nanna laughter is the way forward , I pretend such a lot . I would go under otherwise and that's not an option . Love conquers all

  • That reminds me of my mom. She was in a care center. People would come by and say, "How are you today, Kathryn?". She would give them a big smile and say, "Fine...and I lie a lot."

  • Yvonne, Be patient with him. Love him as much as you can. Touch is powerful so touch and reassure him. PSP is a tough struggle and women like you who are caregivers are my heros. Hang in there!! Jimbo

  • I know exactly how you feel. When I see my husband asleep I just look at him with tears in my eyes....his life and his being are just being taken away from him....

    Sometimes at night as I lie next to him ,my arm touching his ,I close my eyes and pretend that he is as he used to be and just sleeping and I kiss him on his cheek and wipe my tears and try to block the sadness from my mind and sleep.....

  • Yvonne like everyone has said dont feel useless you're definitely not. What would he do without you? My dad who is 80 looks after my mum who is 83. They've been married for 57 yrs and mum was diagnosed with PSP a few weeks ago having suffered for the past 6 yrs with a diagnosis of vascular dementia. My mums in hospital at present and dad often says he feels useless. I have to remind him of what an amazing job he has done and is doing. PSP is such an awful disease for the sufferer, carer and family.

    Keep doing what you are doing being there and giving all your love. Know that we are all here to support each other x opope

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