PEG questions : Hopefully after my last few... - PSP Association

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PEG questions

Sarah1972
Sarah1972

Hopefully after my last few posts many of you will be aware of my mums situation. The consultant is due to visit between 9-11

Clearly I want to know about the risks involved when having a PEG fitted,

There awareness of PSP

What the complication and consequences are.

Please if you can think of any questions I should be asking then please say.

Xxx

11 Replies
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Just say what you have just said, ask him what the risks are. The hospice day centre my husband went to one day a week suggested he had the PEG fitted before it was too late. He was still enjoying puréed food and rarely choked so neither of us thought it necessary. In the end we agreed to having a swallowing X-ray and seeing the consultant. I told him we didn’t want one at that point and he said he wouldn’t do it anyway as his swallowing was OK and “There is always a risk, even if a small one”. He told me on rare occasions complications occur and as my husband was still taking in nourishment and wasn’t losing much weight, it wasn’t worth the risk. It was a full two years later when he had lost a lot of weight, had a bad pressure sore that wouldn’t heal, and always needed laxatives that he decided to go for the PEG, suggested by the district nurse who was treating the pressure sore. The procedure was very quick, he was only away from me for 30 minutes, he didn’t have a general anaesthetic and no negative side affects. His sore started healing within days and he put on weight. I know someone who has had a PEG fitted since she was a young baby, she is now 44! Obviously hers has to be replaced over time but her mum reassured me when C was about to have is and said in all those years, her daughter had never had any major complications.

Whilst waiting in the cubicle, before the proceedure, a doctor showed us the PEG and how it was fitted. When we got home afterwards, specialist nurses (HENS) came and showed me and two of C’s carers how to feed him so I could go out and leave them. We were also given a back pack so he could be fed on the move when we went out. It was very daunting for about a day but once I had fed him for the first time, using a syringe, it all became very easy.

I’ve put all this as it may help when thinking about questions to ask.

Just seen the time. I hope I’m not too late.

XxxX

Do you know or can you figure out what your Mom's wishes are on the matter? In my opinion she is the 1st person to ask and all other decisions are based off her answer.

Ron

The peg brought a massive improvement to my wife. No more uti and nutrition brought her weight back after a three stone loss. Dehydration is so easily beaten.

Our experience is like Javan a massive improvement and the feed can easily be changed to solve problems.

I would recommend that you search this forum - there are good and bad experiences - if you can't find the relevant info, please let me know and I'll reshare

Sarah1972
Sarah1972 in reply to sammy90210

If you could re share that would be useful. Thank you Sammy c

These are all PEG related Q&A: healthunlocked.com/search/p...

I would suggest reading through all of them

This is from another forum (reddit) - a speech therapist's feedback:

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(I'm not a doctor but I am a speech therapist who currently works with swallowing disorders in people with neurological conditions)

The best guidance I know of on this is the Royal College of Physicians (UK) report on Oral feeding Difficulties and Dilemmas: rcplondon.ac.uk/projects/ou...

I don't think it's a humane or not humane thing to do. I think that for some people it's the best thing ever and for some people the benefits are outweighed by the burdens.

In the UK we are moving away from the assumption that everyone will have a PEG tube. In fact, in the light of this report, I would say that the majority of people with dementia won't have a PEG tube.

However, there are people where their swallowing is impaired out of proportion to their overall condition. They might have a reasonable quality of life except for their very poor swallow, and they might be able to walk, do a lot of things independently but just not be able to manage to eat enough to maintain weight. Or maybe mealtimes have turned into an exhausting, stressful situation for everyone concerned, but the person still shows signs of enjoying other parts of their life. In those cases, a PEG is probably humane.

However, if the swallow is impaired in the context of advanced dementia and especially if the person is showing signs of significant distress, then I don't think it's humane. We are increasingly seeing this as a way of prolonging dying rather than prolonging life. And in fact the evidence suggests it isn't very good at prolonging life or preventing aspiration anyway.

If you want an American perspective, our NHS Trust have also adopted these guidelines from the American Geriatrics Society: ncbi.nlm.nih.gov/pmc/articl...

Good luck. It's a very difficult decision.

There is some Q&A on a facebook forum too, this forum is very active

web.facebook.com/groups/PSP...

Sammy your a legend. So helpful. I will give them a read now whilst mum is sleeping. I don’t believe she have it but the more info I have the better. I don’t want to regret it later. Mum just doesn’t understand the severity of it all. I have spoken to palliative care and they are coming to speak to her tomorrow hopefully xx

Thank you that is really useful will have a good read now while Mother is sleeping thanks again very helpful x

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