Won’t he pull a PEG out?

[PDDJED]

Hi, my father is having difficulty swallowing even the smoothest food and has had 2 bouts of respiratory infection. We are considering a peg. However he picks away at any scabs or minor injuries that he has acquired through his various falls and has little control over his hands. I wonder if anyone else has been in this situation and has found the PEG helpful?

[enjoysalud]

Has your father agreed to the PEG?

[PDDJED in reply to enjoysalud]

Thanks for your reply! Yes he has in principle but it’s difficult to know if/when we should do it? He seems to be a scratcher/picker! He is always picking off scabs before they have healed over!!! And he seems to thrash around with his arms at night. So concerned we may end up with an issue around the PEG

[Nanny857 in reply to PDDJED]

Sorry I can't help you on this but I will be interested in the replies you receive. Like your father, my husband also is a scratcher/ picker, I think it's one of the traits of PSP unfortunately. Pulling out the peg tube (if he gets one) is something I dread. At the moment he is on a soft diet and mildly thickened liquids and I'm praying this continues for quite some time. Sending you best wishes and love, Nanny857 x

[Jdjdjd]

Hello, my husband had a peg fitted about 2months ago, it is sited just below the bellybutton, and is kept in place with a clamp, this is opened and rotated once a week, I find the relief of not having to force food and drink down him is enormous, and we are currently giving him 2000ml of fluid, including the feed, his nutrition is about 2200 calories a day, I have found that he is happier, more chatty, than normal interested in what’s going on too. I am battling with a pressure sore at present which is keeping him bedbound, he got this during his stay in hospital, but hopefully once this is clear we can get out again, the nutrition Ian is on is with a portable system, so it can stay on when you go out, you are given the choice of day feed or night feed, but I was worried about a blocked tube at night so do it in the daytime, we are now trialling giving him small sips of water( to progress onto tea) purely for quality of life, when Ian was in hospital before he had a peg, he was put on nil by mouth because of the choking, and went without food for 10 days until I had to ask for an ng tube, so his skin was weakened and hopefully now it should improve

We are in year 11 now , so a long way down this nightmare of a journey, I sometimes feel like screaming, and sometimes I cry myself to sleep, but mostly I keep it together, thank god for this site

Hope this is of use to you

Janet 💕

[PDDJED in reply to Jdjdjd]

Thanks Janet. Your reply is very useful. We are in year 7 now but since my father is in his 80s and probably had PSP for a while before being diagnosed we are in the same sort of situation as you. I definitely feel a PEG may be the answer to my father's problems at the moment but sympathise with you as it really is a nightmare all round. What I find scarey is that just when you think things can't get worse they do!

[Jdjdjd in reply to PDDJED]

I know, and when it’s unavoidable like a pressure sore, it is very annoying, Ian has definitely gone down onto another level, but he’s tolerating it all remarkably well.

I got our Gp to explain the peg to Ian, as he wasn’t keen at first, but she explained it very well and he was happier after the chat, it is only a day procedure and they keep them in hospital for a couple of days to make sure they can tolerate the food, we are still building the rate up, started at 70ml per hour, now on 150, which is till low, the dietitian will guide you on it

[PDDJED]

thanks. Yes it will help if a gp explains the PEG to my dad. good luck with the pressure sore. So frustrating for you and shows he had poor nursing in the hospital.