Is there ever a good death with PSP or CBD?

My mother is coming towards the end of the CBD path now - very thready swallow, no interest in food, purses lips shut for meds, no speech or facial or other movement at all. Sleeps nearly all the time. She is just worn out and seems to have had enough, as have all the members of her loving family. What I want to know is, is it possible that she will simply fail to wake up one morning? Or must we do the trudge and have the worry about managing an infection? Has anyone's loved one with either PSP or CBD simply tiptoed out of the room? I do hope that at least one of you will say 'yes'! Thanks so much, and all of the best to those of you going through tough times. Mary xx

10 Replies

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  • Hi it is what we all wish for and I think it does happen (sometimes) xx

  • That would be nice .lets keep our fingers crossed.

  • Hi Mary, I think my husband had a perfect death as is possible. I knew he was dying about four days before. His fluid and food intake before that was pretty nonexistent. Christmas Eve, he was unresponsive, a nurse came in and said it was the end. We withdrew all medication and stopped trying to get him up or give him any food or drink. He did wake up, enough to know we were all there. We did Christmas around him, each taken it turns to lay in bed beside him, especially when he was awake. Nurses came in regularly, to wash him, give him injections, just to make sure he was peaceful. He still knew everyone and his granddaughter got a beautiful smile from him the day before he went. Those days were very precious, full of love, laughter and of course tears. He finally passed early on the 28th, took a few gasps of air, I told him to let go and that I loved him, he breathed out and was gone. He may have had an infection, but it was far too late to worry about that. Steve's time had come. He died at home, in his own bed, with his family around him, knowing everyone loved him. Who could wish for more?

    Now three months later, I still am in awe of how peaceful and will treasure those last few days, I became his wife again, not his Carer. I will be forever grateful for that small mercy PSP gave me.

    In answer to your question, do some just tip toe out the door, yes there have been a quite few, that have drifted away in their sleep. No doubt a few will reply to tell you their story.

    I know this is a very hard time for you all and I totally understand how you feel as if you have had enough. Remember it's the illness you wish gone, not your Mother. PSP/CBD has to be one of the worst illnesses going, but from my experience and reading others on this site, the end can be very peacefully.

    Sending you a big hug and much love

    Lots of love

    Anne

  • Thank you so much for your thoughtful and kind reply, Anne. It really helps and I will share it with my sisters xxx

  • Hi Mary, as Heady said, it can be peaceful. My darling died peacefully at home with no medication or infection. He decided he no longer wanted to be given food or water and your mother sounds as if she is doing the same. If she can indicate her wishes, thumbs up, hand squeezes or just refusing to eat, ask her if she has had enough and follow her wishes. My darling died after 11 days, gradually drifting away. The last 2 days he was totally unresponsive and I think he had really left me then although his breathing and heart lasted a while longer. It was good family and friends could say goodbye.

    However long your mum has, I pray it is as pain free and peaceful as my husband's last days were.

    XxxX

  • Thank you so much for your warm and thoughtful reply. Mary x

  • You have had good replies from very experienced people.

    I am replying merely to say, yes it is the hardest part of a hard journey and you are not alone.

    Warmly

    Kevin

  • Thank you, Kevin. Your reply was so welcome. Take care m x

  • Research Dignitaries (not sure about the spelling), about a small clinic outside Zurich where physician-assisted suicide is availabile. Their motto is something like "live with dignity, die with dignity." Very pricey for someone in my circumstances, but it appears to be a compassionate alternative to living in Hell.

    Best wishes at this difficult time,

    Steve

  • We help many people in the US with brain donation so I'm intimately familiar with circumstances around death. The vast majority of deaths are very peaceful.

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