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Active member
Jan 5, 2008
St. Paul
My mom (59) was diagnosed about a year ago (she was misdiagnosed in 2005 - they thought that her paralysis was a result of radiation from her cancer). By the time she was diagnosed, she had already lost the use of both legs and half the torso.

At this point, she has no use of her left arm and minimal use in her right (enough at least to still sort of operate her power wheel chair). Eating for her is pretty slow and I need to feed her. She chokes at nearly every meal, but she's a good sport. Her neurologist has had to reschedule our last two clinic appointments, so we haven't been in since October and won't be going back until May. I know that when we go in May, he'll bring up the PEG. My mom has said she doesn't want one. Part of it is that I have to turn her over a few times each night from one hip to the other and she thinks that the PEG will make that really difficult.

I've read about a couple of people who have elected not to get the PEG, I'm wondering two things. One, what are your experiences with being immobile and having a PEG during the night. Two, what might I expect if she continues to eat less and less? She's told the hospice nurse that she doesn't like to eat because nothing sounds good to her, and that it's too much work.

She's a lovely stubborn Irish first child. I want to respect her wishes, but I'd also like her to be informed.

Thanks so much!
I am a complete quadriplegic with a feeding tube. The PEG has never been a problem.

Hi msde302

Hi msde302:

I agree totally with Quadbliss, my husband had one for the six month's we spent at the
hospital and never had any problems with it; I only regret for him refusing one while we were still at home; since he lost a lot
of weight, because as your mother he was always choking and got tired very soon, it
would take us long for me to finish feeding him.

CAL to late husband Jorge
Dx Oct. 17th. 2005 Died 30th Dec. 2007
Baja California, Mexico

If your Mom refuses the PEG, then be prepared as her condition will slowly deteriorate. I don't mean to be harsh. I have seen first hand what can happen to ones body when no food is being taken.

My MIL starved herself to death due to complications of intestinal illness. Now my BIL is in hospice with Esophageal Cancer and cannot eat and had refused the PEG.

I only hope that my husband will decide to get a PEG when it is necessary.

I am very sorry you have to see your Mom in such a situation. But everyone has their own decision to make about their quality of life and the way they want to live.
my dad has had a peg tube for 2 years now. He was having a hard time accepting the fact he needed to have one, but once he got it and got over the embarrassement of having one he was satisfied with his decision. It would take him an hour just to eat a half of a sandwich and by that time the food was cold and he was too tired to continue to eat. With a peg tube she can get the proper nutrition, not have to worry about what sounds good and may have a little bit more energy since its not being used up trying to swallow. And it doesn't interfere with positioning or repositioning. Good luck to you.
Really, all you can do is make sure that your mum is armed with all information she can get about the PEG and also that she understands what will happen with a PEG and what will happen without a PEG. Let her make her own decision and then do your best to support her decision. Ask MANY questions while you are both at the clinic.. really let her get an understanding of the impact of this decision on all of her caregivers. At the end of the day, it is her disease and it is her decision. I know this is easier said than done, especially if you are the only one who feeds her (I really do understand this) ALS will not change character traits... she will remain stubborn!

Get creative with foods if you can... thicken thin liquids and dilute thicker liquids. Puree foods when you can and try not to worry about fat-free options etc... I used full fat options when cooking for my mum (kept the weight on and tasted better) and she remained in excellent health nutritionally until the very end.
Whatever the decision, I wish you luck..
i have talked 2 my son about not getting a feeding tube when the time comes. right now i can still hold my spoon n eat almost everything. it takes me awhile but its ok. i have a hard time swallowing. my son said its my decision.
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