FYI
Recently, I have seen or read several items about people thinking it would be better to die than to get a feeding tube. These have upset me very much; first because they’re inaccurate and second because they’re unnecessarily upsetting to ALS patients, especially those who are newly diagnosed, and their families.
A while back there was a letter in the Digest from a woman whose mother has ALS. Her mother was trying to decide if it would be better to starve to death or get a feeding tube. Also, a few months ago, some of you may have seen an episode of POV (Point of View) on PBS titled The Turning Point. It was about a medical resident learning to come to terms with her dying patients.
A large part of the show dealt with a hospice medical social worker talking about his wife who had died several years previously of MS. He talked mostly about how they had agonized over whether or not she should get a feeding tube and then when she got it and he had to take care of it he wondered what they had gotten themselves into. I don’t understand what all of the fuss is about! I can’t believe that anyone would seriously prefer death to getting a feeding tube.
I’ve had ALS for twenty years and a feeding tube for almost four years, ever since a gall bladder operation substantially worsened my condition. Of all the problems I’ve had to deal with because of ALS, the feeding tube is by far the least of them. Taking care of it is easy. It’s just a matter of opening a can of formula, pouring the desired amount into the feeding bag, and turning on the pump.
The worst thing about having a feeding tube is having it inserted initially via endoscopy. Even that isn’t too bad because you’re sedated, although not anaesthetized. Surprisingly, even though I enjoyed food a lot and I had very few eating problems compared to many ALS patients, I don’t miss eating at all.
Eating. Who's been doing that lately anyway? We are all being held hostage until Terri is safe. I have no appetite at all.