does having a PEG really mean less quality of life

[Mustafa128h]

Hey guys

hope you all are coping ok

so dads swallowing is getting real bad, its come to that time where we are thinking about a PEG, so I came on here to see what peoples thoughts were. Alot of people were saying having a PEG is like quantity over quality, but i didn't get how exactly.

I suppose it depends on the overall health of the individual, as in if they are so bad that they can virtually not do anything at all and are just surviving because of nutrition through the PEG, then yeah i get that being quantity over quality, but it didnt seem like that from what some people were saying, as in their loved one wasnt in some what of a vegetative state. Could someone please then explain in what they meant by that statement then.

My dad can't do most things now, but he can still see, listen, laugh and say a few words, so if he was to get a PEG, would that not actually improve the quality of his life, as in yes he wont have the pleasures of eating, but he can barely do that now anyway, but he would be healthier right? and therefore more awake and energised, and the whole phlegm issue i suppose would reduce by at least 50% since he isnt getting stuff into his lungs anymore by the bad swallow.

So i suppose my question is, isnt it fair to say that a PEG can give you quality and quantity rather than just quantity and then 'take away' quality?

i hope you guys can get what i mean

lots of love to you all

i hate you PSP!

[easterncedar]

Hi, Mustafa. We didn't opt for the PEG and I rather regret it, although by the time it would have helped there wasn't much quality of life left for my sweetheart. I would now opt for quantity, any quantity of time. That is not a universal view of course. There are opinions and experiences on both sides. If you look back using the search function you will see some of the stories. NannaB's writing on the subject is worth reading. Two points about common misperceptions: Getting the PEG won't necessarily stop aspiration pneumonia, and some folks continue to enjoy food while getting most of their nutrition and water by tube. That said, some suffer drastic downturns after the PEG is installed and for some it prolongs suffering with no benefit. Sammy90210's experience is useful on that side, also to be found through a search either of the topic or by name.

Best wishes as you grapple with this issue. Whatever you decide will be right. Peace, ec

[abirke in reply to easterncedar]

Hey ec you cross country skiing yet?

[easterncedar in reply to abirke]

Not yet, although I expect there will be plenty of snow in Maine when I get back. It's snowing lightly, very prettily, here in Illinois right now. It makes me happy. Christmas will be white! I have been baking cookies, the Welsh shortbreads my Grandma taught us, this morning, with my mother, and she has been reminiscing, as she seldom does. Really lovely for me.

Merry Christmas, everyone, as much as can be.

Love, Sarah/Easterncedar

[abirke in reply to easterncedar]

Merry Christmas , friend

[easterncedar in reply to abirke]

Hugs to you, Andrea. What are you doing tomorrow ? Whatever, do something nice for yourself. Love, Sarah

[abirke in reply to easterncedar]

almost 2 am....minimal packaging cooking and ....sleep...oh yah minimal thoughts those which I can catch and verbalize or write are not very coherent without much editing....hahah verbal editing; you might as well just spew it out uncorrected !

Hey , why you in Illinois...coming back from the great wide north (Canada) already?

((HOHOHOH))

Andrea

[Zeberdee]

Whilst my hubby was able to communicate he made the decision not to have a peg fitted as he felt that feeding by tube was was in invasion. As he deteriorated food was puréed and appetite became very very low in the end only fluid was taken. It is a hard decision to make. Jxx

[doglington]

It is mainly the patients decision. They know what is their quality of life.

Chris said no and it felt right to me. Others have certainly felt there was enough enjoyment and feel it was the right decision.

What does your dad say ?

Jean x

[abirke]

Greetings Mustafa

My first question, What does your dad want? My husband wanted and got a PEG. He lived over a year and I think he was happy with his decision. So for your peace of mind, ask dad and do that which he wants and don't worry about quantity or quality, just his wishes.

Do Well

AVB

[NannaB]

The PEG improved my husband’s last 10 months significantly. It was his decision to have it fitted. I have written a lot about it in the past which can be accessed by using the search PSP key at the top right of this page. Right up until 3 weeks before he decided he’d had enough he was still indicating he wanted to go on outings and being fed through the PEG made it a lot easier for me. After the PEG was fitted he put on weight, his skin improved, he stopped being constipated and he could still enjoy ice cream ( with Bailey’s or Lemoncello). The PEG certainly improved his quality of life. Did he live longer with it than he would have done without it? I don’t know but I do know that his life, and also his death was free from pain, sores, chest infection, constipation and it gave him the means to end it all by indicating with thumbs up that he wanted to stop.

Best wishes,

XxxX

[Noella21]

Of course if is still happy and enjoying life go for it. If he is able ask him how he feels. My friends husband lived several years with a peg he got to his daughter married and have 2 grandchildren. He would not have wanted to miss that. Other friends husband could not hold up his head or move at all was in longterm care in near vegatstive state . Than a peg is not the way to go. But the decision is personal.

[Fjrose2]

Hi wife has come to the point were the Doctors want to put a PEG in. My wife has decided not to have a PEG. Three years ago my wife had made the decision to have one and up to a month ago she kept saying that. But in the last week she has change her mind. She has gone from 305 pounds three years ago to 150 pounds today and the last three months it has dropped very fast. This decision I feel is up to my wife and I and the kids support her all the way. I think the decision is a personal one. If the decision is to have a PEG put in. Make sure That if after it is put in that you still have the option to take it out if anyone his changed there mind.