No to PEG: As expected my Dad has opted not... - PSP Association

PSP Association

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No to PEG

coleen profile image

As expected my Dad has opted not to have a PEG fitted. My Mom is battling with this decision, as she is convinced that she will watch him starve to death. I would love to send her some of your comments regarding this matter to try and reassure her that my Dad won't suffer.

10 Replies

HI

I have PSP an dhave opted NOT ot have a peg fititdn wehn the itme comes

i do nto want to be kept going when i can no longer do ro say anythign for myself

it is part fo myLPA and is one an a4 sheet

my neares tnad deare tagree with me on this too

lol JIll

:-)

Hi Coleen,

If you look back through the blog archive I am sure you will find comments that will be helpful for your Mum to read. This is an open access site so unless a post has been marked "Visible only to members of this group" I think folks would be quite happy for you to pass them on to her.

h

Dear Coleen

You have probably already explored both these avenues and so I apologise for mentioning them.

I do not know what arrangements are made for palliative care are made in South Africa, but here in the UK the doctors and nurses of such a service would be a first recourse, as they can explain what care would actually be available locally, and they can talk through the anxieties that the person and their relatives have. Failing that, it might be helpful to talk about these things with other medical professionals who may already be involved with your father's care.

With best wishes

Lily

Hi Coleen, My husband drew up an advance directive as soon as he knew his diagnosis stating that he did not want a PEG and when the time came he hoped to be allowed to discontinue all medication and die naturally. He died on 6th June when a bout of aspiration pneumonia was unresponsive to treatment. i was able to bring him home and look after him until he died and his passing was very peaceful and dignified.He had lost a lot of weight and he was obviously very weak,but i was glad i had respected his wishes. We both learnt to live in each day and get the best we could out of life in this way. I do hope these comments might be of some help to your mother in coming to terms with your fathers wishes.

With love

Teena2

Hi Coleen....Frank had an Advanced Directive which he'd drawn up a long time before PSP was diagnosed. We both did one when we did our wills. We talked at length with a PEG nurse who explained the pros & cons then Frank said he definitely didn't want any intervention. He wanted to retain his dignity & let nature take its course. We made this decision known to all the medical professionals involved in his care.His Neurologist actually agreed with him, saying that he thought PEG was only some help if it was fitted well before needed as it isn't always an easy procedure. I upheld his decision even though it was very hard to see his struggle with first solids then any food at all. He then couldn't swallow at all & so no fluids either. I feel sometimes that he just decided he'd had enough & remained in control. I may be wrong but it gives me some comfort.

He never looked as though he was in pain, he never complained of any pain & never took any of the medication which was there if needed. It was heartbreaking in the last few days but peaceful at the end. Fortunately he never had Pneumonia so slipped peacefully away. I kept him at home throughout his illness as he had also stated.

I'm sorry if I've said more than you wanted to hear but I feel that it may be a help to your mother & you to know what our experience was.

Take care & try to keep smiling. Love Hazel B xx

Hi Coleen,

Why dont you try Ryles Tube. my father is on Ryles tube for past 9 months without any issues.

Hi Coleen...I've just remembered something the PEG nurse told us. Frank was a fidget...he used to be picking at everything. So naturally I was worried that he would try to remove the PEG if he had one fitted. The nurse told us that if that happened it had to be re-inserted within about an hour otherwise it meant another hospital admission for it to be done. Apparently that's because the hole inside closes up very quickly. That's another thing to consider.

Take care & try to keep smiling. Love Hazel B xx

Hi Colleen My husband is in the late stages of C B C he is having trouble swallowing and sleeps most of the day he will not be having a peg and his doctors agree it is hard but you must respect their wishes

Hi Coleen. Many of us have been where you are and it is no easy position. The only advice that I can give is to follow your fathers wishes. Please tell your mom not be afraid. When a person has made up their mind there is a certain peace that follows - a certain acceptance or readiness that I have seen but cannot express in words. When I was in a position much like this - I turned to our priest for guidance - -whether or not you have religion -he gave me some great advice. He said that I must follow my fathers wishes - treat him if he wants to be treated , feed him if he wants to be fed and if he does not want those things - I must follow his lead and when it is time for the good Lord to bring him home it is my duty to get out of the way and help him transition into the next life. I hope these words of wisdom will bring you and your mom the same comfort it has brought me.

Danelle

Thanks to everyone for your comments and sharing your experiences with me. I believe that my Mom has more piece of mind now. Warm wishes to all.

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