Feeding tubes

[PDDJED]

My father's doctor has recommended a feeding tube as he recently had pneumonia and is very thin and not eating as much as he should with all the problems associated with PSP. This is such a hard decision. When do you decide to go down this route? My father said he didn't want medical intervention.....We don't wish to ignore his wishes but from what I can see it can substantially improve/ extend his life if we arrange this.

[Hidden]

Is your father able to answer you if you asked him if he wanted the feeding tube? He might say yes he wants it or no he doesn’t. It is a hard decision to make if he has said no in the past.

[PDDJED in reply to Hidden]

I think we will go with the feeding tube as it is not a major operation. I think my father just hates hospitals!!! He is not in a good place to make the decision but has up to quite recently had good quality of life. He has recently gone downhill quite quickly because of feeding issues, so if this can be sorted out he may have some quality of life left. I have been reading up on it and I see you can still eat with the tube in...so he is not abandoning eating altogether (he loves eating!). I think you are right. We will re-open the conversation with him fully and go from there! Thanks for you reply.

[kenh1 in reply to PDDJED]

As you say it is a very difficult decision. It is good that he can still get the taste of food, I did read of a patient who was on a peg feed who loved to be taken to restaurants just to get the smell of the food. There has been a lot of posts on this site about peg feeds which may help you in your decisions.

[Yanno]

My wife Jackie (admittedly MSA rather than PSP) decided to have PEG fitted when she had nausea etc etc and lost 2 stone in weight. Process was simple (if uncomfortable) and she has never looked back. Feeding through PEG helped put most of her weight back on - nausea has now gone and none of her food is via PEG. Jax flushes the PEG daily and takes water and some meds through it - she never did like drinking water!!

If asked we always say “go for it”, we still have a good lifestyle which may not have been possible without the PEG.

I hope this helps, take care, Ian

[Yvonneandgeorge in reply to Yanno]

My husband really doesn’t want a peg, we have asked him many times the answer is always no. Yvonne xxxxx

[enjoysalud]

Hi, my 54 year old son had a PEG (feeding tube) installed after his 2nd bout of aspiration pneumonia. The 2nd bout required that he be hospitalized for eight days. He was told to NOT take anything though the mouth (water, meds, food, etc), all needed to be taken thro the PEG. It was a disaster for him. We live in Los Angeles, CA, USA.

A PEG does not prevent aspiration pneumonia. One can get it from one's own saliva.

With the PEG, he was being fed every two hours. When one has a PEG, after being fed, you must sit up for an hour (no laying down). He did NOT gain weight, and finally decided to stop being fed because of all his other symptoms. He had a seizure a week or so before his request. He had thrush (fungus) all over the interior of his mouth. He had severe constipation with the PEG. He had a bed sore that hurt him. His sight was near blind. He needed to be pulled up from a chair but could walk with a walker. He could only communicate with hand gestures, but he cognitively was totally present.

He seemed to accelerate in PSP after the 2nd bout of pneumonia and the PEG.

Except for the seizure all the other maladies were being individually treated.

He died 5 weeks after turning 55years of age.

I have three suggestions: 1) at the top of the page is a "Search PSP Association" bar. Write in PEG, and read all the postings that come up. After reading, and hopefully in a position to answer questions 2) Allow your father to make the decision on the PEG. 3) If your dad has a PEG installed I would buy him a PEG holder.....my son was thrilled with his because the tape irritated and the lose dangling of the tube caused him distress. Go to Amazon.com and write in.... G-Tube Holder. We purchased the NelMed G-Tube Holder. We bought two so that one could be washed (they wash well).

Good luck!

[Hidden]

My mum was not able to make the decision around a peg either, but I’m glad that I made it for her. It is a simple procedure as others have said. She was in & out of hospital in a matter of hours. The feeding procedure is simple. Assuming you are in the UK, a dietician will be allocated to help determine the right feeding procedures & calorie intake. It hasn’t stopped mum loosing weight but it’s made her overall condition (she has CBD) a lot less challenging daily. Eating for her had become almost an impossiblilty. Hygiene of the peg site is critical- it did become infected shortly after it was done. If you decide to go ahead, do it now. It can become too late too quickly!

[Katiebow]

My husband said no PEG right from the beginning and held with that until he paraded away 2months ago. It's a difficult decision and I believe should be left to him if he is still able to communicate his wishes.

Kate x