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[quote=Anonymous]My dad with a Parkinson’s like syndrome got a g-tube recently because he was mentally with it but had deteriorated significantly physically, including fast weight loss.

The tube has been somehow pulled out twice, when my Dad was at rehab. I have no idea how. I don’t think he did it intentionally!

He cannot use the g-tube to feed himself —someone must do it for him. My mom, while willing, has arthritis, etc. His having it has made it significantly harder to care for him at home/arrange care. We were given a cursory 20 minute tube education at rehab and sent home with instructions to do bolus feedings 5x a day. It wasn’t at all ok.

I think hospitals/rehab must assume that someone on a feeding tube will be in rehab/nursing home, not at home. Or, if not, that he could operate the tube on his own. Or that he will have nursing care at home. Whether or not a non-nurse aide can operate a tube seems to be a legal gray zone and aides/aide companies don’t seem to want to do it.

I am trying to get nurses in here. Maybe they will come up with a better situation, like night feeding with a pump, or whatever.

But based on my experience, if my dad had been able to eat by mouth I would maximize that *as long as possible.* 
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