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Discussion in 'ARCHIVE FORUM: Support discussions' started by chip, Mar 18, 2008.
Just to say that I'm thinking of you.
I had to make the awful decision. Peg feed or not to. I said no weighing up would he survive the op, should i put him though a op, would it benefit him as his body can't take nutriants,would it prolong the suffering or not. it also doesn't prevent asperation pneumonia or infections. I've also heard that anesthesia can also make dementia patents a lot worse quicker ( Does anyone know about this). He also made me promise that i didn't let him live if he "went like that " It still doesn't help when we have to make decisions like that. Has anyone else had to make that decison ? What would you have done? Have i made the right decision?
Dear, dear Chip
No I've not had to make that decision, but yes, that is the decision I would have made. I read a paper about this very thing (dementia sufferers and PEG feeding) and it made it quite clear that all it really does is extend the dying process rather than extend life. Not only that, you know how he would feel about it. I don't think you could have made a different decision under the circumstances.
I have never been in the terrible position to have to make the decision about peg feeding, but if I had, I would have done exactly as you have done.
What is the point of prolonging the agony. Peg feeding is not without it`s own complications, especially on a sick body, someone who is so run down he is unlikely to heal.
My friend`s husband had cancer of the throat. He was advised to have a peg fitted as the food couldn`t go down. The peg became infected and he suffered even more pain. It didn`t help at all, it didn`t prolong his life or give him any better quality of life. He died a couple of months later.
However painful, I really do believe you have made the right decision.
I`m so sorry you are going through so much.
I had to make that decision for my mum, and I said no too. It's an awful decision to have to make, and I felt guilty for a long time afterwards. But my mum wouldn't have wanted to live in that condition, and I'm sure Robert is the same. I'll make the same decision for John.
I was given one explanation, which helped me.
'We all want to prolong life, where there is a chance of reasonable life. But inserting a PEG when all quality of life has gone is only to prolong death'.
I'm so sorry you have reached this stage with Robert, and I wish you strength to see you through this final phase.
Love and hugs,
yes you have made the right decision
when I put my mum in a NH, my dear friend who knows all about this said...do not peg feed, its cruel...
AD sufferers come to the point when the body cannot process food and they lose weight no matter what you do
peg feeding is force feeding...please dont force his body to stay alive....
chip, you obviously know you have made the right decision
I am so sorry for you both
Dear Chip, I am so sorry you are going through so much pain, my thoughts and prayers are with you and may God give you the strength to cope. My husband is also going downhill at such a rapid rate and only 62 years old, it breaks my heart. Unfortunately ours is not to question why.
Godbless you and your family
I`m so sorry you too are going through the same ordeal, that of watching a dearly loved husband experiencing such a rapid decline.
You are quite right, ours is not to question why. There is no reason, no answer.
I just hope you have the strength to see it through.
Do not feel guilty. You have made the kindest decision that you could do in these terrible circumstances. I am only too sorry it is a decision that we are asked to make.
I too have made the same decision on Mum's end of life plan. Prolonging her death is not something I would wish to do. Her swallowing reflex is currently coming and going and it will only be a matter of time.
My thoughts are with you at this time.
My heart goes out to you over this. What a terrible situation to go through.
I think you have made the right decision. I know that I will very likely have to face this dilemma one day and decide for my husband, Peter. I will make the same choice that you have done.
Thinking of you,
Dear Chip it is the right decision,I tried feeding Anna with a syringe was succesful for a little while but eventually became impossible,Anna was choking and couching because she couldnt swallow,and I got no guidance from the nursing staff
Dont do it
I was so sorry to read your news. You have made the decision out of compassion and love.
Dear chip, you are ever in my prayers.
I know I would do the same in your shoes, but also know not a decision taken lightly. Try to stay strong.
My thoughts are with you. We made this decision about dad months ago, not an easy one, but who are we to play god i thought, but we all have our own views on this. So far dad as got so far as not eating for nearly 3 weeks on and off, then suddenly started to gradually eat again, its like being on a roller coaster of emotion turmoil. I think inside us all is the strength we need at the time we need it, if you understand what i mean. Sending you [[hugs]]. Jan.
I have read only your posts in this thread, so as not to influence my thinking beyond your experience, and beyond my own experience.
For the simple reason that I know that you asked about those of us who may have had to make a similar decision : yes, I have had to do similar. Which is the reason why I speak from my own experience.
When I was given about ONE HOUR to arrive at my own decision, I thought "Sugar Me, what the heck do I do now?" followed by "Sugar me, HELP". But there was no help, nobody to consult, so I knew it was down to me. So went away and thunked!!!! And then thunked more! One hour is the equivalent of a lifetime when given such a time-scale.
Then I worked out that no matter which decision I was required to make, I had only myself to consult about making that decision.
I never thought then - nor did I have the time to do so - about asking what anyone else 'might' do in similar circumstances, because even they might not have had any real idea of what the DECISION CRUNCH POINT means, unless and until required to face it.
So I guess that my only thought to you, as one who has had to make a similar decision, is that the decision you make is the right decision for you, and for your close family.
Simple as that. No more to say, whatever decision you MAKE ABOUT A DECISION THAT YOU ARE REQUIRED TO MAKE is the right decision.
Oh, Chip, I'm so sorry. I'm thinking of you.
I don't think you have anything to reproach yourself about.
Lots of love, Philippa x
Sending you both loving and caring wishes. You have made the right decisions for your dear Robert at every stage, and again you have done the right thing in not going ahead with the PEG feeding.
As Jennifer says, it prolongs death but not life.
May you have peace in the time remaining and may you find comfort in knowing you are doing what your husband would have wanted for himself.
Update := He had a seizure i got called in as he is so weak. He pulled through though. But he now cant walk and has trouble holding his head up, his weight is rapidly going down. They are going to try high energy and vitamin drinks but its just touch and go if he swallows or not. Today he swallowed but tomorrow he might not every day is different. He is on pallitive care now.
Sending you lots of Love & Hugs,
Thinking of you,
Dear chip, you are in my thoughts. I am adding you to my prayers.