Don't know whats happening: We have been... - PSP Association

PSP Association

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Don't know whats happening


We have been told that my father needs a feeding tube or he will die. He initially refused the feeding tube but is now considering it. I think this will just prolong his suffering. It's his choice. He is totally bed ridden and is totally dependent on caregivers.

I am wondering if PSP patients can survive for a long time with a feeding tube when they are very advanced in the progression of the disease.

14 Replies

Hi, if you put PEG in the search PSP Association box at the very top of this page, you will find all previous posts on this. I replied to horserace 34, 4 months ago “How much more can he take” which may help you.

The most important thing is what does your father want. If he has any way of indicating, let him decide.

I’m sure you will get lots of other replies.

Best wishes

Nanna B


Unfortunately with PSP there are no time constraints as every sufferer is different. My hubby refused a peg and I respected his wishes although seeing his deterioration was very difficult to cope with but cope you do. Sorry this is not very helpful to you but your dad’s wishes should be respected. So sorry for you both. Jxx


Psp person in my opinion can be influenced by others so easily,even if it not what they had in mind to start with.please try to respect his wishes without outsiders influences. Trust your gut feelings on this.

Stay strong


My son, 55 years of age, died 5 weeks after having a PEG installed. He was in the hospital for his 2nd bout of aspiration pneumonia (iv antibiotics), the first bout he was given antibiotics at home. While at the hospital (7/8 days) he had failed the swallowing test several times. He was being cared for at home (did not wish to enter a Nursing Home), and had been receiving HOSPICE for several months. We live in Los Angeles, CA, USA.

When Kaiser put him in the hospital, following an MD visit, my son was walking with a walker, but limited in speech, and having occasional challenges swallowing. There was still (in my perception) a quality of life. His sight was very poor but he would listen to books on tape and to music.

After the PEG installment we were told to NOT give him anything through his mouth, but only thro the tube. Doing that required that I had to stop giving him supplements. I had been giving him capsule supplements...pouring the powder onto a liquid, shaking it, and he drinking it. We noticed that granules were getting caught in the tube and therefore stopped.

After five weeks of being fed by tube my son asked for us to stop feeding him. He shared with me that he thought he would "feel better" being fed with a PEG ..... His request was honored, within a couple of days of no longer being fed, HOSPICE asked me to stop giving him water.

I did not try to talk him out of his decision, although the third day without food I asked if he wanted me to start again. He put his thumb down.

My son's first symptoms were DOUBLE VISION and SLURRED SPEECH, March, 2014. He died May 4, 2017.

None of us know the resulting future of our decisions. Would he still be alive today or lived more than five weeks??? I don't know, but I do think it's human to question the road not taken..futile that it may be.

I do believe the decision to go the route of the PEG shortened his life and it's quality. He complained of pain. I do know the future, without a cure, would only have become more dismal for my son.

Tomorrow is his birthday, GOOD FRIDAY, I miss him terribly. The pain goes away faster than when he first died, but I do not deceive myself that it will ever completely go away.

I wish you well and hold you in my prayers.


Margarita, I always think how much your son lives in your posts. Think of all the people all over the world who know him a little bit through this site. Hope he's smiling somewhere, at this :-)

XXX Anne G.

Thank you for your comment. It makes me feel good.

I find, for me, that each time I share on a topic it helps to clarify/understand a bit more the steps that led to certain decisions. My intent is to lend my experience to help another who is struggling with what road to take.....not to point to an answer, but what road I took and how I feel today.

Well, today is/was his birthday, a joyous occasion, March 30,1962, with some physical pain mixed in. I will celebrate that he was in my life, healthy and full of a love of life, by getting me a full body massage. He use to love his massages when the aches and pains of the illness came on (having been DX as Parkinson's), and be grateful for having him as MY SON.

Affectionately, Margarita

Happy Memory Birthday to him and ((Hugs)) to you 💕

Dear Kenfa,

If your dad is not ready for the end, he may want to try something that earlier, when it seemed far off, he would not have liked the idea of. If he tries the PEG it doesn't mean he HAS to keep using it. He can still change his mind after it's been inserted. (Like Margarita's son did, above.)

Good luck, whatever he decides. Love these days with him - you may not have a long time.

Anne G.

I have written several times about my husband's experience of PEG feeding but think that the given the negative experiences that have been described so far in this correspondance someone needs to give a more positive picture.. My husband chose to have a PEG fitted when he was well enough to make the decision himself and for the procedure to be straightforward. He lived for about six months with the PEG. I have no medical training but did not find it difficult to manage, I had good support from an excellent NHS nutritionist who saw him regularly at home,reassessed his needs , and provided prescriptions which were tailored to his needs.

I believe very firmly thst the last few months of his life were as good as they could be because he was properly nourished. Until a few days before his death he still had some mobility and speech, which meant that he could be out of bed , make decisions about what he wanted and be engaged in conversation. I could not have watched someone I loved and had cared for die of starvation.

Leon (Hubby) was given the same option, P.E.G. or die. He naturally chose the P.E.G had the op on July 4th 2017, he suffered serious diarohea, went into hospital, got pneumonia, was un-responsive 3 times, but finally went into care for 2 weeks, then came home, now has been in care for 6 weeks, can do absolutely nothing except think, as his brain is amazing, he said 3 nights ago that he was sick of feeling crook, I said do you want me to talk to the Dr, his response, "I am not ready to give in yet," so he has had another 8 months of life, he is down to 58 klgs, (2 weeks ago) and slowly declining, but he keeps hanging in there. It is a horrid illness and no two seem the same, just hang in and do what your Dad thinks is the best. It is harder for the carers I feel though. Hugs to all the carers out there, it is a job I wouldn't wish on anyone

Kenfa, my husband had his pegtube in on October 25, 2017 and lived until March 9, 2018 ....a little more than 4 months with it. We have no regrets in supporting HIS decision to have it. Good luck with your journey. Joyce from cold Minnesota


What a terrible decision your father will have to make.

If he refuses the tube he will die , have you spoken to him about not having the tube put in and just letting go and ending this ?

It will only prolong the illness and so many other things will happen to him, does he want to go on this way?

Very hard to speak of these things but it must be done, he needs to know, and to choose what he wants to do.

My husband chose to go before he got to that stage .

Thank you for the responses. There are so many of us dealing with this disease but at the same time, so few of us. My father has decided to get the feeding tube. He is capable of making his decisions. I don't like the idea of him prolonging his suffering, at the same time we don't want him to die either. A truly miserable disease.

My dearest Bill’s was diagnosed PSP 6 years ago, we was told in February last year that he needed a feeding tube as he was at high risk of aspiration and chocking and we this what we all I think knows happens next; (infection, Pneumonia and dead)i his wife’s refused as she considered it is not quality of life, I worked very hard until I convince him to change his mind; even his wife is #1 proxy’s he step up and 2 weeks ago the PEG was finally fitted the procedure took just only 20min under local anaesthetic and discharges the same day . I can tell you that it’s a big improvement, gain weight, no more cough.As he getting stronger his walking are improving as well. We need to understand PSP is a PROGRESSIVE disease and nothing can stopped and sooner or latter the end will come. You need to think it’s really this work.???????😏

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