psp peg tube dilema...advice + experiences please?

Hi all,

I am about to ask an unanswerable question...but bare with me please...i may just need to vent a bit.

My dad has psp. he can no longer walk, talk much, see much etc. He was pretty deaf anyway. He sleeps a lot of the time. He coughs and chokes frequently. We had a big scare the other week when he choked badly..but luckily there was a nurse about.

At his last consultation they suggested a PEG tube.

My dad is in denial. When he can communicate he talks about what he will do when he's better. When he's beaten this.

If my dad thinks he is going to get better then surely the idea of a peg is a no brainer....of course you would get it!

But i'm worried. would he chose this if he knew it would just prolong his life....with possibly no quality to speak of? food is one of his last pleasures. He loves a wine or an icecream or curry.

I'm so scared.

I don;t want him to be trapped in a body that will not respond to him in any way, unable to access any of the things he once enjoyed so much..but how can i talk to him about this?

I feel llike a monster as i don;t want to keep my dad alive just so he's alive. if it was up to me i'd say don;t take it. i'd let him go when his body gave up. Maybe i'm just projecting what i would want to do if i was in his situation? I feel so guilty.

could some one share with me what happens if you have a PEG. How long (in your individual experience) do people last with a peg? do they end up trapped in an uresponsive body....alive, but not living?

If he wants a PEG, of course he will get one.

Has anyone had experience of having both a peg and a colostomy bag? I feel that it would be awful to have one food pumping food in to your belly and another draining out your waste.

I'm very scared of what the future holds for him.

I would just like some peoples experiences and views.

ozg

18 Replies

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  • Oh, I do feel for you. Please don't feel guilty a bit. You aren't at all a monster. On the contrary, you are a loving daughter trying to do your best in an impossibly unhappy situation. The denial makes it so hard.

    For what it is worth, I had a relative in his late 70s who had esophageal cancer and had to have a tube because of the danger of aspirating food. He had also loved his food and drink. Although the cancer treatment and decades of smoking and drinking had left him with almost no sense of taste, he would swish a mouthful of wine around to try to taste it before spitting it out, and then his wife would put a glass of wine through the tube directly into his stomach. He was glad to have those last several months of life, which was all the PEG gave him. He was able to see and talk and walk about, though, so had significant quality of life. His body did give out fairly quickly after the PEG was put in, but what the cause of death was we do not know. If your father likes a glass of wine, perhaps he can still have it. I have no idea what the doctors would say about that, of course. I just know it can be done. Maybe he can still have some food, too, the regular way. I think some people have written here about doing some of both, once swallowing becomes difficult. I have even read of people using thickener in wine so the patient can swallow that more safely.

    I also had a coworker who lived, if you can call it that, for nine years in a totally vegetative state from Alzheimer's. Keeping her alive was a mercy to no one, in my opinion. She lasted that long on artificial feeding. Terrible.

    Then there was a beloved aunt who had a stroke after years of struggling with progressive disability, refused artificial feeding and asked to be sent home to die. It took more than a week, but it was a good peaceful death under her own terms. I'm with her, and would prefer to be let go when life becomes a painful burden. We'll be lucky if we get the chance to choose how we go.

    Meanwhile, I hope you have others around you to help you through this terrible time. Whatever happens, it won't be forever. Don't second guess whatever action you take. It will the best decision you could make. I wish you strength. Hang in there, Easterncedar

  • Hi

    My husband has recently had a PEG fitted and seems to be coping ok, he eats and drinks as normal when he can and we just use it at the moment for his fortisips and meds when he can't manage them, this way he still gets the pleasure of eating and drinking what he likes and anything else goes in the tube there by saving his energy for the little pleasures he still enjoys including a glass of wine or whiskey when he fancies it. Hope this helps it's not an easy choice to make but at least if used like this he still gets some pleasures.

    Keep your chin up

    Caz

  • Also, do search for PEG on this site. There should be several posts that will give you more relevant information than my reply. It's a question that has come up many times. Some folks have had good and comforting experiences with them, some not. I expect many of the people who have direct experience have stopped checking the site as often as they used to, so it's good to look back. Hang in there, Easterncedar

  • My mother had a severe stroke and also had MRSA . As you know a stroke is instant , you don't get any warning or can be prepared . It was about two weeks later that the doctor asked me to go in and talk about having a per feed fitted .

    I didn't have a clue what this was or anything about it .

    At the time she could speak so I was having to decide , fortunately when we were sat at her side and the doctor asked she said nodded and they went ahead .

    She couldn't have known what they meant but she got over the MRSA and lived a further three years . in her case got her speech back a little .

    She had no problem with and other infection from it .

    I do understand how you must be feeling . you can only do what you think is right at the time . nGood luck

  • Hi shortly after diagnosis fpr PSP and understanding the progression my wife made a concious decision to choose no peg and DNR. She stated very firmly that she does not want to live without some control. She is about thee same stage as yr dad but still vey sharpe mentally. if you can get him to decide.

  • Ozg, This is a tough one to answer. Each person has to make their own decision hopefully based on the patients wishes. I think you need the assistance of someone in the medical profession he will listen to. I'd have them talk seriously to him about the chance of a recovery from PSP (just doesn't happen). They could also talk to him about a PEG and hopefully explain that it isn't a cure and his body will continue to deteriorate. He should also know that a patient can aspirate from a PEG as well as swallowing and get pneumonia and perhaps die. Apparently the doctors have not made it very clear of the prognosis of the PSP he has. He needs to know that his quality of life with a PEG may be lengthened but not improved and will continue to decline. Does he have a trusted and long time friend who can say "I've read about PSP and .......". Sometimes families try to soften what's ahead in PSP which lets a patient hold out hope and go into denial. That may not be true in your case and I only state it here for others to be aware of it. Jimbo

  • Hi ozg -

    My experience with Tony was the same as Snapper's. The neuro/community nursing staff were very open with Tony while he could still make decisions, it was discussed and he was absolutely against it. So we respected his wishes. Fortunately he had moved on from denial to acceptance of his condition.

    Also, if someone is frail, the trauma of having the PEG fitted could hasten deterioration. As you have no doubt already found, the downward progression (mostly) seems to continue, sometimes slowly, sometimes more quickly, with a plateau every now and again which can be short or last for several weeks.

    Jimbo, as usual, has put it very well.

    I hope your dad is still able to take in information and make his own decisions. If not, you have my sympathy in what is a difficult situation.

    Thinking of you,

    Mo

  • Sorry about you dilemma but take on board what Jimbo said read his reply again good advice. I am power of atorney for my sister age 80 with PSP can't walk talk or feed herself and I am not getting peg fitted for her she can't communicate so it would have to be my decision and I think if she was able to decide I think she would refuse. I think it would just prolong this agony for her and I pray every day for a peaceful end for her. Good luck in you decision will pray for you.

  • Thank you so much for your kind replies... It's just so nice to hear from people that understand....but heartbreaking there's so many of us here :(

    My dad has decided he wants the peg. So he will have one. I am very surprised in a way, but if it's what he wants then he should get it.

    He has been told whT the futures holds with psp, but he chooses not to believe it. He's all there mentally, I think it's just too much for him to process. He has always just chosen not to deal with distressing things e.g. He has never ever spoken to me about my daughter who died. Never even said her name to my knowledge. It's just how he's always been.

    I will try to get the speech therapist to chat to him, she seems the best one who visits him.

    It's good to hear a peg has been positive for some people, and if it stops him choking all the time I guess that will make things easier for him.

    Thanks again,

    Ozg xx

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