How much more can he take

Richard has been deteriorating lately. So glad he had the peg in. He still eats blended food but only small amounts and sometimes he doesn’t want that. He is sleeping a lot. At first it was that he couldn’t keep his eyes open but now he is a sleep. He used to laugh at anything but I haven’t heard him laugh for quite a while. It will be 5 years this December when he was diagnosed but he has shown signs of it at least 2 years before. When will it all end?

9 Replies

  • 10 months after my husband’s PEG was fitted he decided he had had enough and indicated he didn’t want to be fed any more. If Richard still has means of communication he may make that decision. My husband started getting agitated when I fed him and fiddled with the tube. When questioned he was able to put his thumb slightly up for yes and tucked under for no. He had been diagnosed for 6 years. We never regretted having the PEG fitted as when he died he had no infections, not on any medication, skin like a baby without a blemish and he had no pain. Until 3 weeks before his death we were still taking regular trips out to the coast, parks etc with him putting his thumb up to say where he wanted to go. If he had continued to be fed I think he would have lived much longer but he was determined to go and refused to swallow food, holding it in his mouth until it tricked out.

    Like others, he had an amazingly peaceful final 11 days.

    I hope Richard’s departing, whenever it may be, is painfree and peaceful also.


  • Thank you for that it means a lot. Richards is able to put thumb up for yes and down for no even though it can take a while to do. I know if he is still being fed by the tube he will last longer but as you say it has to be his decision. Hope Richards end can be peaceful. Keep you informed. Thank you xx

  • How good to end in peace.

  • All you can wish for your loved one is a peaceful and painfree end away from the misery of this awful disease. Ben has made his wishes known that he doesn't want a PEG fitted which I respect but worry about him starving himself when he can no longer swallow effectively. Unlike lovely Bev and Colin, Ben has absolutely no interest in going out anywhere so a weekly trip to the hospice is his only day out. Fortunately I have good friends who drop by to lighten the load.

    Sending love and support to both of you

    Kate xxx

  • Kate, that is how Chris was. When he was finding eating too much he just closed his lips. I said that if he didn't eat he would die. He squeezed my hand. Then I asked if he wanted to die and he squeezed my hand again. We kept his mouth moistened. The next day he was visited by our children and they said goodbye. Then he quietly died that evening. No pain. No struggle.

    I had dreaded it but he was ready.

    I hope this reassures you.

    Big hug from Jean x

  • Thank you for your kind words. It’s nice to know how others handled the situation.

    Reassures me thanks

    Carole xx

  • Thank you for your reply. Richard wanted the peg. I will have talk to him and find out just what he wants. Richard is my brother. He has carers to see to his needs and I sort everything else out with my sister.

    Thanks for your kind words

    Carole xx

  • Jim's PEG tube has been in for almost one month now and getting along quite well. He was loosing weight so fast without it, so it made sense to have it inserted into the stomach. He is at our local care center and being watched 24 hours a day. This gives me some free time although he would like me to be with him all day long. This is our new "normal" for now. What will be next, is anybody's guess. I've learned that nothing lasts very long and this disease surely rears it's ugly head when you least expect it. Happy Thanksgiving to everyone here on this site, from our family here in Minnesota.

  • Happy Thanksgiving to you

    All. Be Blessed

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