PSP carers you are champions

My wife of 38 years is now in hospice wasting away, no substance food or liquid, just keeping her lips wet,trouble is her heart and blood pressure are strong, wish she would pass away today peaceful.... my very last even missing pad changing and the agro,,,,,, PSP carers you are champions....... BLOODY ILLNESS wishing you all the best

17 Replies

  • My dad is the same. Although hes at home. Doctor came yesterday. She said he had weeks not months. His blood pressure and heart are all good too....heartbreaking. thoughts go out to u xx

  • Debbie is donating her brain to help try and find a cure, and I have made a pact with her that I will donate mine as they also need good ones, that's if they can find mine LOL chin up

  • Still have a sense of humor...that attitude will help your healing process...

    And thank you for donating her and your brain....

  • Your right thereBLOODY ILLNESS, my thought are with you x

  • So sad, so sorry. My thoughts and prayers are with you and your wife.


  • i agree nannab

    lol jill


  • Sending lots of love xx

  • Hugs to you, Amber54. This psp is a rough road for everyone. I know I'm just very grateful to have the love in my life that my sweetheart gives me, and I wouldn't have missed it for any thing. The only way to be sure not to suffer loss is never to love. Better this. Hang on, we are all thinking of you. Love and peace, Easterncedar

  • Better to have loved and lost than to have never loved at all....

  • Exactly.

  • i agree avb

    ol l jill


  • I'm sorry...My husbands everything is still tip top,,,heart strong; muscles are strong; healthy as a horse.....Just one thing going, thats the brain...

    wheelchair man came and measured him...asked B if he was an athlete...did he run or bike...told the man I used to call B , "Man of Iron Legs"; honest you could thump them with your finger tips and it was like thumping a metal table......and yet he can't find one foot infront of the other without falling.....I almost think the wheelchair man was questioning our need for the device....

    Again I am sorry for what you have to go through now...You have done what you could and now the inevitable is here...So are we if and when you need us


  • So sad. My thoughts are with you. Hope for a peaceful end.

    love and a hug, Jean x

  • Amber54 your experience mirrors ours, 1978 was a good year to marry. 2009 was a bad year with start of PSP symptoms for my wife. Now she is in a nursing home slowly wasting, unable to speak, walk, eat, increasingly light phobic, eyes no longer blink. Likewise I miss the 24/7 care but I can still help feed her, PEG, and take her out each day either for wheelchair push or drive into the hills.

    I believe she will decide when to give up but until then she is fighting PSP as you say heart, outer brain, breathing (when not choking) all fine. She understands all about her, likes the radio, music, news and comedy, loves visiting her mum(97) and sons and grandchildren which I think gives her the reason to fight on even as her quality of life is stolen by PSP. It is the cruelty of this condition is that it does not kill but removes function. Do not give up on her she will need you more as the end approaches love is tested. Some days I want to go away but know I would never be able to live with myself if I left her while she is still here.

    Good luck and best wishes Tim

  • spot on Tim My wife left us 2 35 Friday my thanks to your reply

  • Bless you. My love died peacefully in my arms just 10 days ago.

  • Strongest condolences to you of your wife's leaving. It was good that you were surrounded by your friends here. And like I said before we will continue to be hear for you....Goodbye to wife of Amber54 (was Amber your name? how pretty) I pray that your children and husband can comfort each other and find good solid ways to cope as they go on without you....The happy memories of you Amber, will be the healing salves for your family.


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