Doesn't want a PEG but getting one!?

[PDDJED]

My father was against getting a PEG when we discussed it with him in earlier stages of PSP. He was pretty much against everything to do with PSP and hospitals and it felt too early to be discussing it with him when we did. Now, some years later, he is struggling with swallowing without choking, despite his food being smooth and carefully administered. He seems desperately afraid of dying and hates choking and seems more accepting of a PEG, although he is now very limited in his communication. In fact we are not sure if he fully understands what is being proposed since he gets very confused these days and is generally incommunicative. Do you think we should go ahead with a PEG? We are worried he may try and pull it out! He has picked scabs and removed dressings in the past.

[Kevin_1]

You seem to be in a very difficult place.

You describe what appears to be denial in the early phases. Refusing to recognise PSP resources and his need for them and now a person frightened of dying who might very well want a PEG.

I think the first thing to do is think about who he was before the illness. What do you think he would have said then?

You say he seems less confused some days. So you must be getting some sort of communication. Would it be worth talking about a PEG with him on those better days? Having the conversation a number of times? You never know, you might just get a sense of what he wants.

Lastly, is it your decision to make? Is there an LPA in place? If you are not in the UK do you have the legal authority to make that decision? It may be that the decision is one where you opinion is sought and respected, but that you are not the decision maker.

I do hope this helps a little.

Best

Kevin

[PDDJED in reply to Kevin_1]

Thanks Kevin. Yes it will be useful to think about him before he became ill. He has been a fighter all his life so I guess he would want a PEG. When he initially got PSP and we discussed PEGs he didn't like the idea but he may have been reacting to the procedure/hospitals and thought of which does seem unappealing when you are healthier. We will definitely try and get more buy-in before doing the procedure. He does have "good days".

I wonder does anyone have problems with patients pulling out their PEGS?

[BABALINDA in reply to PDDJED]

Went Billy was diagnosed we PSP in 2013 the Neurologist when though very clearly on the stage of the disease, and he strongly refused to one day haven a PEG, but went the time comes; chocking and coughing every time he had to eat wasn’t any other choice and, finally he ask the doctor for one. The PEG was fitted and, I did have to go through 4 times. My poor Billy pulled it out during the sleep. I researched and find a cover for the PEG and a little while he starting to look up after to the point did let anyone come close to the PEG , only me was allowed to take care of him. I think because his seeing the benefits and live changes after the PEG. As he received the nutrients he needs starting to feel stronger and wanted to do things he couldn’t do because felling tired no energy and sleeper. My poor Billy lost his battle in May 2018 according to doctors not to PSP was hart falling

[PDDJED in reply to BABALINDA]

Thanks for that Babalinda. I think we have a fairly similar situation. What sort of cover did you get for the PEG. Is it something you can find fairly easily? So sorry to hear you lost Billy in May last year.

[Dadshelper]

As Kevin stated... if he is is of limited communication and you suspect a decline in mental cognitive ability, does anyone in the family have the legal authority to step in and make the decision? Dad opted early on for no form of life support so I have no idea on the means to keep a person from removing a PEG.

Ron

[NannaB]

That sounds very like my husband who decided on having a PEG after first saying know. He was also a picker and remover so I made sure the tube was covered when not in use or when I wasn’t close by. He couldn’t pull his top up to get at it. This should be your fathers decision so if he is capable of indicating yes and know, ask him. Just before the doctor took my husband to the theatre, he showed him the PEG, explained how it would be fitted and then asked him if he understood and wanted to go ahead with the fitting. Colin’s thumb went up and the doctor spoke to him, not me, saying it was his decision and he wouldn’t regret it. Neither of us regretted it and it improved the last 10 months of his life with no choking, constipation or chest infections or pressure sores.

Best Wishes

XxxX

[PDDJED in reply to NannaB]

Thanks for your reply which is very encouraging.

[lesauerbach]

I believe that unless there is some clear indication that he does not want a feeding tube, then it should be inserted. It is a life-saving mechanism that causes no pain. Without a J-Tube, my wife would have passed away two years earlier - a 2-year period that I cherish.

[PDDJED]

Yes, we are going to go ahead as it may improve his situation which is not very comfortable at the moment. Many thanks