Beginning of the end?

Oh Everyone. my husband is starting to deteriorate. He is eating less and sleeping more. I am desperately trying to get him more engaged in the world to no avail. He went through a period where it seemed he was stabilizing and then this. He is beginning to have trouble swallowing. The food just sits in his mouth and he falls asleep. He was adamant from the beginning that he does not want a feeding tube so I am really upset about all of this. He is eating less and less and retreating more and more and I do not know how to stop it. I hate this disease.

14 Replies

  • It is so sad Goldcap as we know there is nothing we can do to stop it all happening. Your husband made the no PEG decision so at least you know not to go down that route. It's horrible knowing this can go on for some time but my prayer is that he is kept comfortable and you know peace during this very stressful time.

    Sending you love and a big hug.


  • Thinking of you good gold as , so hard I know. Sometimes you have a short reprieve which give you hope then it all changes ... Takecard of your self .. Hugs xx

  • Oh Goldcap, I really feel for you. S was going/is going down this road now. Although the last few days have been a bit of a reverse, (long may that last). There IS nothing that we can do to stop this hateful disease, except make our loved ones as comfortable as possible and wait. Wait for what though? Do we hope that the end is sooner rather than later? That's the awful part for us. I can't bear to see S suffering like he is, having a good day, is being able to say yes or no, rather than using ESP, which I not very good with!

    You may not be able to help D, but we can help you. Stay with us, rant and rave as much as you need to, we all understand, you know that! Somehow, we will all get through this together.

    Sending very large hug and lots of love


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  • Thinking of you too jillannf6

  • goldcap , i feel for you too. It is so hard to watch a loved one at this time. We are having the same experience! If you are able to, please try snd watch the lecture by Barbara Karne, a Hospice Nurse Educator, called 'Gone from my sight' I think.

    i have been on this site frequently, not really knowing ehat I was looking for, putting down my experiences in the hope it will help others to recognise where their loved ones are on this path. I have somehow found a kind of peace after watching Barbara's lecture. I now understand that what I have been looking for is the pattern of end of life symptoms. Strangely, I have been more at peace with myself, as I see I have been right in my fears, but now I understand better where we are on that downward spiral, and that, short of a medical incident, I will now be more able to pick up the signs of end of life. It does not ease my man's suffering, but being more calm myself, maybe he will be calmer.

    I know it won't be easy for either if us, but we csn take this journey together and support each other through the bad times. My thoughts will be with you as we journey together. Love snd hugs, Jenny

  • Dear goldcap, my heart goes out to you. Reprieves from this disease are always temporary, but we always hoping for more one good day with our loved ones. No one gets out of this alive, and too few are fortunate enough to have the love and care you lavish on your husband. For all the suffering he is going through, he was lucky at least in finding you. Hang in there, dearie. Wishing you love and peace, whatever is ahead. Ec

  • Oh, Goldcap

    I dread the time when I am faced with this and that time will come.

    Shedding a tear for you both and me and my Liz too.

    Thank you for posting at this hard time.

    We are thinking of you both.

    Warmly Kevin and Liz

  • Massive hugs to you. It is so heartbreaking when notice these changes & I'm always looking out for changes in hope nothing new has progressed on. Xxx

  • Have you tried Amantadine? I saw the drug discussed here so asked the neurologist if we could try it. It really perked my dad up so that he speaks and stays awake during the day--also stopped his drooling. Why had none of his doctors ever mentioned the drug? I am so sorry for the stage you and your husband are going through. Hope he has a better day soon. By the way, my daughter just came back from California yesterday. My dad was happy to see her and even smiled when she picked up her pet lizzard! Take care. Thinking good thoughts for you from the East.

  • Hi Carlam

    Throwing in an old note from a conference... I have no experience of this.

    Quoting from a lecture I attended by a PSP specialist Neurologist / researcher.


    Possible side effects:

    Increase impulsiveness

    - thus risk.

    Can increase cognition

    Can help with stiffness and balance

    Can help sleep

    ? Possibly increases feelings of suicidality?

    His view was to try it with caution and in the later stages when the benefit might outweigh the pos. issues.


    Thinking - I might mention it to our consultant next appointment.



  • Sorry I mixed side effects up with positives...(Cut/paste)

    Thanks for reminding me if this though... I have it in a list for try later down the road... I think we might be down the road enough now.

  • My Dad is very similar. He loves his food and it is one of his only pleasures left. He has everything pureed now. We have fought the idea of a peg with a vengeance, however over the last week he has been struggling. Seeming too tired to eat. Unfortunately he was admitted to hospital yesterday as he aspirated. He looks very tired but has been able to be fed so.easy food today so we are hopeful he will with the aid of antibiotics recover to a point where he can have the Peg fitted. It is all very emotional as he can no longer walk or even weight bear and is unable to talk. I hope your loved one picks up a little and goes through a good phase (as often happens). This is indeed a cruel disease x

  • Dear Goldcap, My heart goes out to you and I will keep you and your husband in my prayers at this terrible time. Lots of love, Nanny857 xx

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