December 13, 2006

Wednesday that I thought was Thursday then Sunday

Boy was I confused today. I drove over to L and C's this morning, thinking it was Thursday, and time for my regular visit...only to find out it was Wednesday after all...But that didn't stick because I called the visiting nurse, thinking she was Karen, the Sunday nurse, not Ana who comes during the week! Dunno where I was. Later even than that, just an hour ago iin fact, I thought it was Tuesday, because there was a party going on downstairs in the community room, and it seemed to me that that had been scheduled for a Tuesday! So not once during the day did it feel like a Wednesday,which is almost over now.

I had a conversation with Joe this morning. I felt terrible about this whole business with Karen, said I felt like just handing her the entire duty of taking care of him and just going back to doing nothing for him but cooking when I felt like it. Stunning me, he agreed. So angrily I got the notebook and file and handed it to him. Then, quickly, I calmed down. Isn't that how it was supposed to be at the start? That others would care for him, take care of medical matters, and I would be free just to be his friend? Well, that seems to be what he wants, so that's FINE with me. I'd rather do that in the long run anyway, though it seems rather selfish. But if he wants it that way, so be it. I can't seem to do anything that matters anyway and the only things I've done that he even cares about is make him lemon sorbet and chocolate pudding (and those ill-fated for him veggie burgers) or cook him soups and homemade TV dinners. The only reason I got involved in his care is because everyone at the hospital told me I'd have to take care of him now. Naturally, I assumed I would. After all, who else would? But he prefers that Karen do it on her own, and that I take the role of sometime-cook and friend only. So that is fine. That is fine. I feel a little bit hurt, but also relieved that the burden is off me and my time is back to being my own. I still see him every day as I always have, but our talk doesn't have to be on the nitty gritty of ALS anymore, unless he brings it up. If he does, or asks a question, then I know enough about it to answer his questions better than most, without having to solve anything.

I frankly don't think that I'll be allowed off the hook so easily, though. Karen won't want to do everything on her own, one. and two, he doesn't have anyone else but me. So I imagine I will be impressed into service at some point, by Karen if not by Joe. And I dunno what I'm going to do then. It was Karen who told me initially that I wouldn't have to do anything but be a friend. So we'll see if that is even possible. We'll see if other friends step up to the plate or if he hires additional help.

Tonight I helped in a happy little conspiracy. Another resident, Phil, who works on the Economic Development Commission in town, where Joe had been active for two years, contributing a great deal until he got ALS, had read a proclamation to him at the annual dinner two weeks ago that Joe had been unable to attend, due to fatigue. So he wanted to present it to Joe tonight, at the Christmas party. Unfortunately, though Joe had signed up for the party, he had decided not to attend, as he was unable to eat most of the food served (too chewy or too hard for him to swallow). But Phil really wanted him to come down at least long enough to hear his speech and accept the "award." So he asked me what to do. I said, I'll bring him down. I know he'll come with me, if I say I'm going but need company to do so.

I finagled it a bit but it was easy enough to get Joe to stop by my apartment and agree to go downstairs where "Chubby and his band" were spieling and singing loud enough to, well, beat the band. I said, let's find Phil, ask him what the entertainment is going to be. Once Phil saw us, he came out and said, Hi Joe, so glad you came. Why don't you come sit down. Thanks, Pam, for bringing him.

That sort of gave it away, but I didn't say anything, and Joe, good sport, acted surprised when the moment came and Phil got up to announce a special proclamation, a certificate of recognition from the Town of W to Joe C for his service to the town. Unfortunately, instead of giving a nice speech, short and sweet and saying a few words about Joe that might have interested people, all he did was read the certificate. This was just formal Whereas this and Whereas that he had trouble reading until people were bored nad talking to one another and shifting in their seats, obviously bored. This spoiled it for me, as I wanted them to listen for Joe's sake. But Joe accepted it with grace and simply said Thank you, I am sure many of you volunteer and deserve awards like this as well. And then he sat down and clapped for Chubby, who had started singing again.

Meanwhile, my eyes were watering and tears were rolling down my cheeks, and I wonder what people thought of me! I was just so happy for Joe, probably happier than Joe was. That was before the certificate was given. Once it was, I was so disappointed in the presentation, that everything shifted into a downfall of mood. I had so wanted it to work, and to be impressive for Joe's sake. If I were presenting an award, I would have practiced a speech and written something that people would remember and enjoy. People do the nicest things so poorly sometimes, and they don't understand why it has no impact...

Well, there's nothing for it, I suppose, and Joe got the point. But I think he didn't think much of it, much of its value, because of how it was presented and I feel bad about that, as it is an official certificate, signed by the mayor and not just a rinky-dink made up document.

No voices or music all day today. Amazing. I didn't notice until Ana asked me, then I realized I hadn't even heard the usual singing! I'm impressed, really impressed.

Posted by pamwagg at December 13, 2006 07:55 PM


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