I can give another "against" argument but it is an individual thing. We explored the tube for Larry, but medically because of his other conditions couldn't find a qualified IR nearby who wanted to do it, and felt disinclined to run after it with travel so difficult. As it happened, and will not be true for all, 2 years after it was recommended, he was still eating, albeit soft food and slowly. He did not lose significant weight after the first months of ALS, when his arms melted away.
He never lost the ability to swallow or talk, but the end was signaled when chewing became "exhausting" and he would not have been a smoothie guy -- he actually did better with thin liquids for the most part, though like many of you, he had coughing episodes. He couldn't use a Cough Assist and the suction machine made things worse after a couple of months. So we kept him upright till they passed and tweaked the BiPAP (which he was on nearly 24/7 with a nasal mask) throughout each ep.
The end of chewing, at which time we moved on to pudding and such, was pretty much the time that he began experiencing air hunger, the last 2 weeks of life. All in all, he was worn out-- so it was then that I asked his doc to write morphine for the first time. You can figure out the rest. He drank and ate a little a couple of hours before he died. He wasn't suffering.
So the "against" is -- if you aren't particularly in "life at all costs" mode, you can roll the dice if you want, and it may not be as bad as you think. Or it could be worse. Heed Nikki's story about her mom and sister. That could be you.
Larry's eyes were open -- he saw a fellow PALS in person w/ a tube (Zoohouse's Tim, a great guy with an awesome partner in life) and he wasn't afraid of it. I do encourage anyone considering it to see one in person or close up on line. But Larry didn't want it enough to go to extraordinary lengths and likely complications (if it could have been placed at all). For you, Pete, the procedure would be less arduous but that doesn't mean, I recognize, that it is any more desirable.
Is there a way to know? Some obvious signals that your life without a tube would be worse than Larry's would include frequent choking, a very limited diet, weight loss, dehydration, nausea and/or vomiting and worsened breathing with eating. If you have any of those things now, you might look to your diet and BiPAP settings first, but after that, you might be looking at the tube if you wanted to be around for a while. And as others have pointed out, if you delay, it can be a very timely proposition and you might rescind your original choice too late to return to your starting point.
One final statement I have made before. If one of you opts out of the tube for whatever reason, and things do not go well, you would then be suffering, and might then ask for enough morphine so as to be more comfortable. Similarly, if you get a tube, sooner or later, things are likely to take a turn for other reasons, such as breathing. You need not go out in the same state that getting a tube seeks to avoid. ALS claims your life, but it needn't claim your death.
--Laurie
