April 30, 2007

Update 4/30

Forgive me if there are a thousand typos in what follows but I am too tired to proofread and correct this. PW

Had an interesting talk with Karen today while we were both making jewelry, which I taught her to do. We were discussing Joe and I said that actually I didn't want to go out to his mother's apartment with him and Karen to have lunch at a big restaurant on Mother's Day just to keep him company and rescue him from his mother's chattering. I thought frankly that he saw his mother all the time and didn't need me to rescue him and I deserved the day to myself, and to spend it with my own mother if I wanted to. At this quite candid admission, Karen smiled and said, Yeah, I know what you mean. I don't feel like going all the way out there to babysit his mother, and it's not even a very good restaurant! I would be happy to drive you to see your mother though. Would you like to do that?

We started talking then more honestly about Joe and came to the conclusion that he wasn't giving either of us quality time, that the only people he treated to his famous smile were the nurses and social workers and respiratory therapists who came to see him. When they arrived he would turn on his charm, but as soon as they left, we got the sighing and down faces and the grumpiness...Now, it is understandable that he gets down and grumpy, but he should be talking about it with those who are supposed to help him with it, not playing the happy saint with them, then treating us to his rotten moods. Karen doesn't get any more smiles from him than I do, except that one time she forced him to take her out to dinner, with his computer in tow, at which time he actually lightened up and seemed to have fun for once.

Part of it is his complete unwillingness to do anything for himself, and part of it is our willingness to do it all for him. He complains about fatigue and we say, don't worry, we'll do it for you, instead of prodding him to do XYZ anyway. He is losing all sense of personal responsibility and as Karen has had to tell him, we are not his personal slaves, and as I have told him, we are not his maids, we do not clean up his messes, not without being paid. (When I told him that, lo and behold, suddenly he became able to pick up after himself...anything that threatens to become expensive motivates him! BD)

Tomorrow, Karen is taking a day off, and I am doing it all. But first we are getting Joe, whether he likes it or not, to take us out to lunch and bring his computer with him so he can talk with us while we eat. Then we are going to tell him about our decision regarding Mother's Day ie that I will go with him only if his mother comes to our building and we have lunch some place very local. That is, I will help him out with his mother, but only if it costs me only an hour and a half of my time. Otherwise, I will make plans with Karen to go visit my own mother at the shore. After lunch, I'll drop Karen off at home to do her thing and tell Joe he has to come with me to do HIS errands, pick up his scripts, his electric can opener etc. That I am tired too, and have little stamina but am going out anyway and so can he. I dunno what else to do. The fact is that he plans this Thursday to go to the ALS support group for an hour and a half, with Karen and me in tow, then see his therapist immediately after that, then drive home, and then that evening attend a Democratic Party fundraiser! If he has no energy or stamina, how the hell does he think he can do all that? And if he can do all that, he can certainly go to a restaurant, then do two errands. He won't even have to drive. I will!

I am not growing away from Joe, nor Joe changing in his feelings towards me. Just a couple of weeks ago, before the Storycorps interview he told me he believed in love at first sight and that I was the love of his life. I know that Karen is no competition. He only spends time with her because he has to keep her happy so she will drive him to the Clinic. He finds her demanding otherwise. But you know, she may be pushy and demanding overall, but in terms of wanting something from Joe, she deserves it, we both do. We deserve some sense that he knows what we are giving him and giving up to do so, some appreciation rather than his assumption that of course anyone would do it. Most people would not. NONE of his many other friends have so much as offered to spell us in fact. No one has offered, out of all his many relatives, to help out in any way and when they ask him what they can do, he simply tells them, Nothing. As if we can do it all and don't need any help!

Disney is a done deal, which I will look at as an adventure and try to enjoy as best I can. Karen keeps trying to get me to commit to an evening here or there and I simply say, Make any reservation you want to, but I cannot say what I will or will not be able to do at night. I'll just have to wing it, see how I feel.

Luckily, Lynnie built that into her discussion with them, the fact that she and Sal often let me skip dinner or eat in my room, via room service or take out, while they decamped to a restaurant, knowing I simply needed the time off and privacy. So I was able to tell them that I might not join them for dinners, even though they were at fancy restaurants with exotic atmospheres worth experiencing. I think by then I'll be spent and want to stay in for the evening, unless we really do split up for the afternoon and I get enough private time then. Otherwise, I know that dinner won't be simply dinner but some entertainment and a stop along the way and soon it will be three hours before I get back to the room and I'll be exhausted once again. Plus, I hate fireworks! No, I don't hate them at all, I just don't want to be out that late...So I will try to post from my hotel room, which will give me something to do and be something to write about, plus it will provide an anchor for me, should I get into trouble. I may not be able to write email, but I can at least get comments and write commentary or posts here.

Posted by pamwagg at April 30, 2007 10:31 PM


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