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To anyone interested in our Storycorps story, check out the official blog at the link below for a brief entry about the interview I did with Joe and their impression of him. I think he will be very pleased to see it (I can't show it to him now, as he is asleep, having just come home from the Clinic after three days completely exhausted.)
At the Clinic, according to the report Karen gave me, they said, one, no ice cream or sorbet anymore, as it is too thin for him to eat safely (he still eats for taste if not for nourishment, but must stick to what is thick). Everything must be the consistency of applesauce. It seems to me that this must apply to drinking as well, but neither Joe nor Karen seem to know. They think it is fine for Joe to drink coffee and Coca Cola as well as water. But this does not make any sense! Why would Coke as a thin sugared liquid be any safer than the thin liquid that ice cream turns into? Water probably won't cause aspiration pneumonia, so far as the pulmonologist has told us, but Coca Cola surely can't be so harmless! And the cream in coffee is just as bad as any cream in ice cream. True, he uses very little, but he also uses sugar, once again a potential problem. Does he still drink OJ? I cannot for the life of me imagine that this is a "safe" food, nor why Karen, for all her Harvard education that she flaunts so proudly, thinks that drinking a liquid is any different from eating a food that turns into a liquid. Does neither of them have any sense or are they both of them simply without...Argh! Never mind. It just seems a simple deduction on my part that anyone with half a brain could make
Anyhow, I will write to the nutrition expert at the Clinic and get things straightened out formally before I lay it out to Joe, just in case I am wrong (though I can't see how I could be).
Another change the Clinic wants to make is for Joe to wear a brace on his right ankle, because they fear that the way his foot drops when he walks could cause him to fall. He refused this, of course, saying he didn't need it yet and couldn't drive with it, though it would be a simple matter to take it off when he wanted to drive, not much of an inconvenience. But it would make him feel like an invalid, and with all the medical equipment surrounding him in his apartment already, I imagine that he does not want to be reminded of his illness even when he goes out.
But being in a state of denial does not help him, really, much as I respect his right to it. If he falls and hurts himself, he could end up in a worse place than simply needing a brace. People with ALS do fall, all the time. And they break bones when they do, and some are seriously injured. The Clinic people are trying their damnedest to help Joe avoid these possibilities by preparing him in advance. They suggest that he use techniques, tactics and assistive devices earlier rather than later, perhaps even too late to prevent the accident that was waiting to happen. But Joe, in all his stubbornness is his own worst enemy, not that I completely blame him. He has not practiced using his laptop voice at all, and now cannot do so, when he is practically unintelligible. He gets terrifically frustrated by our inability to understand him, but he will not do anything about it but keep trying to make us comprehend what he cannot say verbally. If he would only type it out and press a key-- I have done it. It is not hard. And the voice is quite easy to understand, much easier than Joe is. I would think it would be a relief to be able to communicate easily again. But I fear that Joe is going to wait and wait until he cannot speak at all, then resort to writing notes in handwriting that was always illegible but may be even more so due to weakness in his right hand (the first limb to be affected). I don't know what to do to help! I found him the voice program months ago and have suggested we practice using it together, I on my computer, he on his. But no, he refuses, always with some excuse or an irritated look of, Not now, can't you see I have more important things on my mind? Grrrrr, I want to shake him and say, What could be more important to you than talking? You love to talk and you are locked into yourself right now, unable to communicate with almost anyone but me, and less so, Karen. Doesn't that tell you something about what is most important right now? Huh?
Talk about frustration. I'm wringing my hands over this stubborn refusal to do anything at all to help himself until the very last minute, when frankly it is too late to do anything but stop-gap measures to catch up, and then rush to finish up what stop gap measures couldn't take care of. It was that way with the feeding tube. He wouldn't use it merely to supplement his diet as the nutrition expert had been suggesting for months. No, he had to eat or not eat for as long as possible, until panic overtook him and he gave up eating (for nourishment) altogether. So then we had a huge race to find a way to get the tube feedings done, with no help from anyone. We were in the dark about what to do and how it was to be done. It was only by chance, or because I was making calls to various places and someone finally told me about needing a kangaroo pump, that we learned there was such a thing...It was only then that we finally we got the Clinic to call a supply company, order the pump and Jevity food supply and prescribe it so the VNA could come in and teach us how to use it all.
This sort of thing keeps us all on the edge of a crisis, and ought to be, and could be avoided. That's what the Clinic's advice is for! But Joe adamantly refuses to take or use it, and we must follow his lead like dumb sheep, but for Karen's assertiveness when she feels really strongly that he must do something he doesn't want to (like buying clothes that fit his leaner body, that don't gape and reveal his underwear to the world at large).
Posted by pamwagg at April 17, 2007 09:25 PM
Am I complaining too much? I don't mean to sound as if I am. I love Joe and understand his desire to keep awareness of his illness at bay. But as his caregiver I am frustrated by this same thwarting of my ability to really help him. After all, I know he wants to live at any cost, and denial, if it brings on pneumonia or leads to a serious fall, could kill him. Though I have told him that in no undertain terms, he simply doesn't want to listen. Nothing I say gets through. He listens to his own counsel only and to hell with anything I know better than he might. It has always been thus, and a source of irritation to me over the years. But now, when his life is in the balance, it...Well, I can't change anything, so I might as well just try to forget what I know and let him call the shots. He will anyway.