Broken Hearted

My dear hubby Richard was hospitalised last Friday with aspiration pneumonia. He bravely has fought that off but it has left him so weak that the doctors have told me he is beyond coming home. Im sure I could have managed with a government care package but they are really hard to get even though we have been approved for one. He was transferred to the palliative care unit today for respite until a permanent bed becomes available in a local nursing home. We knew this day would come but its really hard looking at his chair knowing he wont be coming home. This site has been amazing and I will keep reading nightly about all the other brave people fighting this horrible disease. Short1

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  • Dear Cassie,

    Don't beat yourself up with what is happening with your husband Richard and your strength and his in the fight with PSP. I recall talking with a lady I worked with a few years ago who's area of expertise was instillng confidence in carers. After she read about PSP, she said the disease was like a melting pot of so many like MS,MND,Cerebral Palsy, Parkinson's & Dementia all thrown together. She asked me how I planned to cope with what be ahead? I said 'The best I can'. The lady replied with 'That's all anyone can do - and with PSP it sounds impossible to do!'

    Regards, Alana - Western Australia

    N.B. my husband is 59 yrs old, married 26 yrs

  • dEAR CASSIE HAVE JUST BEEN READING YOUR LETTER don't BE BEATING YOURSELF UP OVER THIS SITTUATION nO MATTER WHAT YOU DO IT DOES NOT MAKE IT ANY EASIER THIS MIGHT BE JUST ME bUT I LOOKED AFTER MY HUSBAND AT HOME UNTIL HE GAVE UP HIS BATTLE WITH CBD/PSP ON THE 12TH SEP I STILL FEEL I AM IN A DARK HOLE AND IT JUST SEEMS TO BE GETTING WORSE NO MATTER WHAT YOU DO IT DOES NOT MAKING GRIEVING FOR YOUR LOVED ONE ANY EASIER HOPE THIS HELPS YOU I LOOKED AFTER MY HUSBAND FOR 2 YEARS BUT ITS STILL NO EASIER EVEN THOUGH HE DIED AT HOPE WITH HIS FAMILY AROUND HIM BEST WISHES AND PRAYERS FOR ALL PSP SUFFERERS jUDY

  • Thanks Alana, Just really sad cause I wanted it to be our decision. I cant believe the damage the pneumonia did to him. Richard is 59 too and we have been married 25 years. Cassie.X

  • I'm so sorry to hear that this has happen to you and your love one .We are not at that point yet and I do fear this with every thing in my body .I do hope you have a good support team to help you and your husband.Please take care of your self and I find it does help to have mini meltdowns every so often.My husband just turn 61 and we have been married 30 years this year.

    Dee in BC

  • When I was looking after mum I came to the conclusion that PSP is like walking down a flight of stairs where every now and then a step is missing and you go down quicker. The 'missing steps' are infections and unfortunately now and then there is more than one step involved. Mum picked up incredibly after being at death's door and after a month was back to the step she should have been on. She went on for another 6 months, brushing aside Shingles and several urine infections before finally dropping suddenly into end stage.Even then she plucked the strength from somewhere to carry on for another 5 weeks! PwPSP are the bravest, strongest and most amazing people we could ever meet. Best wishes to you, Dianne xx

  • I'm not looking to that day. Visit him often while you can.

    Jimbo

  • Short1,

    All I can offer you is a virtual *HUG*. I wish I could do more.

    B x

  • Thanks everyone for your lovely posts. I really appreciate them. X

  • I'm so sorry to hear about your husband Richard if you have continuing care (which we unfortunately didn't get) and if you really want him at home with you then try and fight your corner it's your choice not the doctors, My Mum passed away from bronchial pneumonia and PSP 12 days ago and i'm so glad we could care for Mum at home don't get me wrong it was hard but it was what Mum had always wanted to be with her family...

    I really hope you get what you want and spend as much time as you can with Richard

    Take care Jan x

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