End stage?

I think maybe my husband is coming to the end of his life.

He is very poorly ,unable to eat and drink and unresponsive.I thought I had shed all the tears and come to terms with this cruel disease and would welcome his release from suffering but I feel utterly devastated.

We had the very best of marriages so happy together, the best of friends and I suppose I should feel blessed for 46 years of marriage and 7 years of courtship but I just feel cheated, he is only 68 and diagnosed 5years ago this month.

Oh how I hate Bloody P S P

22 Replies

  • my God what you are going through is just so awful i do hope that i wont go through that for the sake of my husband ...

    my love and special good wishes to you and to your husband

  • My thoughts and love go out to you at this terrible time.

    Lots of love


  • Dear Joey, I'm so sorry for your suffering. There are no short ways through this grief, I think, but I hope your memories and your love comfort you. My thoughts are with you. Easterncedar

  • Thank you for your kindness .all for one and one for all in this disgusting disease eh

  • Dear joey. I'm so sorry about your present situation. Remember all the good times and try to banish all thoughts of PSP out of your mind for a moment. But you will probably just take a deep breath and carry on, as we all do.

    Take care.

  • Dear Joey

    Thoughts and prayers are with you. I just hope there are a few good people around you to support you through this time.

  • Hi Joey,,,what can one really say..Madeline is at the point also but being tube fed for the past2 and one half years as long as her vitals hang in Madeline will hang on.The last 24 hours have been nothing but roar,like AAAAAHHH steady.I could copy your exact words ,together since grade 9 ,my whole life is her.,you know nothing says we won,t be gone soon also and hopefully be together again,my prayers are with you ,you have climbed the highest of mountains and you are getting too tired to continue but one more push Joey, try to deal with ,deal with tomorrow tomorrow,Rollie

  • Hi Joey, my father is also in the latter stages of this terrible, horrible disease. He is 89 and had it 14 years. He is now bedridden most days, cannot speak, see, or do anything and has to have everything done for him. The pain is unbearable watching him as he has no quality of life. I go between wanting hhis suffering to end, to not knowing how we will cope without him. Every few days we have a scare and then he seems to rally round yet again. Yes we too feel such a lovely person has beeen robbed of his final stage of life, and retirement, it's not fair, on him, or us, particularly my 87 year old mother, his carer. She has been robbed of her life too. I know what you are going through, my thoughts are with you.

  • bless you and your family.....our journey is fairly new. just diagnosed a few weeks ago. but have a idea what the future holds. we are married 56 years.......

  • I am so sorry "Joey" that this is happening. You know who I am and I am sending all of my love and as much support as you would like to accept. It is a truly devastating time and nothing can prepare you for this, especially as your husband has gone from living his life to very poorly in such a short space of time. You are going through feelings of bereavement for the time you have had stolen from you. Time that you should have been on holidays, doing the garden together, discussing the complexities of carpet versus laminate etc. I know how much you miss him already and watching this dreadful disease as it progresses is unbearable for the whole family.

    Anger, frustration and sadness are all parts of that. People think bereavement is what you feel after someone has passed but that is not true - your whole family have been grieving for the husband and father that they have not had for the last few years. He is still in there and you mustn't forget that. His love for you and his children is so obvious, I see it when I have been with you all.

    My heart goes out to you all and I wish I could be there for you - you know my number, you can ring me any time - and I mean ANY TIME day or night.

    Please give D a hand squeeze from me and tell him that I think he is a wonderful man with a wicked sense of humour and that his handwriting is still better than that of my doctor!!


  • Oh I am so sorry for your pain and I do understand. The pain for us just keeps on and on and every time my husband gets worse it is a new death and I mourn and weep. My husband is 72 and has had PSP for at least 8 years. It is terrible for him and terrible for me and terrible for us. We have been married 46 years also, and life as it is now is so very sad. Know that you are not alone and I am thinking about you.


  • Hi Joey,

    Does your husband have a PEG-tube ? Maybe he is becoming too weak because he doesn't get enough energy. If he doesn't have a PEG tube, please consider to get one placed asap. A PEG-tube is not the end of the world. Last year, my father was considered as "end of life". We waited too long before acting. I know it's a terrible disease. But I think it's time to act. All the best

  • Hi Paultsio,

    Just to say that my husband had been adamant he didn't want a PEG fitted. We lost him 18 months ago and, looking back, it would have just prolonged the agony in his case.

    Joey -

    I remember well that feeling of tiredness and frustration - after more than 50 years together it was a difficult time for us both. Try to be strong for your husband, he's still in there somewhere and the touch of your hand will help.

    Thinking of you,



    I've posted this several times on this site but I'll post it again because I think it is worth knowing. PSP is not a one-size-fits-all disease. Each patient is different in how quickly or slowly the disease progresses. Each patient is different in the symptoms they have. Each patient can have the same symptom as another patient but to a lesser or greater degree. As far as "stages" are concerned they just don't matter at all. There are supposedly four "stages". However, your loved one could have a bad fall with brain damage or broken hip and die in any "stage". They could aspirate, get pneumonia and die in any "stage", even "stage 1". They could get a serious UTI that causes hospitalization and death. Like all of us there are no guarantees in this life. THINKING you know the "stage" can be very disappointing if you are thinking "stage 4" and the person lives another three years. As caregiver and loved one you'd be better spending your time on care and love. There are no predictable certainties in PSP! Things might be bad and then the loved one rallies and gets better for months. There are some "level" spots (good or bad) often in PSP for some patients. Bottom line it is an unpredictable disease with an unpredictable length of life. My dear wife and I took one day at a time literally not thinking about what is ahead, what "stage" she was in, what symptom might be next, etc. Worry about "stages" robs your peace for today and doesn't change what comes tomorrow. IMHO Jimbo

  • Hi Jim -

    It doesn't get any easier, does it? Today I sold the wheelchair-converted vehicle to someone else with PSP. Sad to see it go but that's another door to close ready to open the next one.



  • Mo, It just seems there is some reminder there you stumble on or haven't wanted to give away or trash. Are you in the UK? Jimbo

  • Yes, Jim, still here.

    Have just seen another vehicle which might do as a replacement.

    It's taken 18 months since we lost Tony for me to feel I'm moving on properly.

    It's early days for you yet, I know, but you'll get there. Lots of people on this forum appreciate your knowledge, experience and support, and I do feel we can help a little.


  • Jim I'm not talking stages my husband is dying and I am devastated ,don't need a lecture thanks

  • Joey, Sorry, there are just so many people out there that get "hung up" on stages when they don't really matter in the course of dealing with PSP. Sorry about your loved one and hope when the time comes they pass peacefully and you also find peace. Jimbo

  • Sorry if I snapped but as you know only too well it is a very tense time.

    Doug hasn't eaten or drunk anything for 9 days now,we keep thinking surely he can't go on but I think the man is made of steel.

    He seems very calm and comfortable not in distress or pain so all we can do is be with him ( the family are all here) hold his hand and let him know we love him.


    i sam so sorry that

    D si nea rate end but he will be in a "better place:" and then you can grieve properly

    try to tell hjim you love him as he is still in there the same man you married

    lol JIll

    hugs and xxxx

  • My mom and I are feeling the same way.... just when they would enjoy their retirement this horrible disease evolved. Regarding the tears I also feel the same way. At this point every week and perhaps every day is something new.

    Stay strong.


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