Can anyone give me any advice or their thoughts on P E G feeding.My husband is now finding it difficult to suck up and swallow liquids and food that is smooth. It has been suggested that we might have to consider P E G feeding but as his neck is so permanently forward and to one side it might not even be possible to get it started. He is unable to speak now and I wish we had discussed what he would have wanted before we got this stage.
Cowboy101,Try just putting PEG feeding into your search box and looking for An introduction to PEG feeding Talking Point leaflet No:3. That`ll give you all the info. you`ll probably need. Best Luck and Best Wishes Cowboy101 and Wife!!
Hello Les and Dave,
You have raised a very important point, do you or don't you want to be peg fed?
I know many people that are peg fed and quite successfully but as you say you wished you had a discussion before.
There are several issues that need to be discussed with regard to what the person wants to happen when a situation like this arises.
My husband has completed a DNR form, also on the form is whether he wants to be fed via a peg fed or through a tube through the nose, he has stated that he doesn't want either and only requires the normal drugs for PD and some to keep him pain free and comfortable, this is his choice when he is of sound mind but if he wished he could change his mind at any time.He has also donated his brain to the PD tissue bank, I don't think it will be easy for any of us, but that is his wish so we will abide by it.
Over our thirty years of being involved with PD we have meet many people who have had problems not just with the medical side but also not having any will or financial affairs sorted out only for the pwp to suffer with memory problems and then of course it is too late.
I am sorry this upsets anybody but they are very important issues and can't be stressed enough, it is so much easier if these things are sorted out early and then you can forget about them.
Good luck with the peg feed,