December 14, 2006

More confusion

Now it seems there was a big misunderstanding. Joe thought I said I didn't want to do caretaking any longer, and I thought he said he didn't want me to do it any longer! So we both got the wrong message somehow! But we've managed to get it straightened out now, and I'm reinstated as an official caretaker, which I wanted to be to begin with. Phew! We run into these sorts of misunderstandings all the time, largely because both of us want to please the other, he more than I, in that he refuses to tell me what he wants, whereas I will at least do that much. He is always trying to ferret out what I want and then please me by wanting that. I suppose this is in order to please me, but it might be because he doesn't want controversy by disagreeing with me, a problem of his (fearing any sort of disagreement). Or it might be that he doesn't want to feel the pain of "losing" or rejection if his want is refused, so he won't make it known...therefore he can't be hurt. But it means I get frustrated, NOT knowing what he wants and having to guess, and guessing wrong and finding it out the hard way.

Now the problem is this: I do not want to go to the Clinic particularly. Why should I? I mean, I'm not going for me, for my health. It's just a hospital, and it doesn't interest me to see another hospital. BUT I would do anything for Joe, and I would go to the CLinic in a second for JOE...If he wants me to. But does he, or is he only "letting me come"? Am I there on suffrance, i.e. am I there because he is willing to put up with me, or am I there because I can be helpful to him? I DON'T KNOW. Not even when I ask him, do I get a straight answer. I repeat it, as I would to him: I would do just about anything for him (except maybe go to a big party, but Karen would love to do that! BD) even things that I personally would not otherwise want to do, like visit the Clinic. All I'm asking is that I know he wants me to come with him and Karen, so that I'm not just a third wheel, adding expense to the trip but nothing else. Maybe I should write him a letter, calmly, and put it as succinctly as that!

Anyhow, we did get it partly "fixed" today, so I'm going to take him to local doctors' appointments and support groups and so forth, and learn all his machines so that when the time comes I can help him with them as best I can. As for the Clinic, Karen has to go as she must be there to drive when he can't, but if he wants me, I will go, if not, then I'd be just as happy staying home.

I spent time with L and C today too. L is in a lot of pain, as she has been for months now, without let up, and Oxycontin has absolutely no effect. I am surprised the pain doctor keeps upping the dose, as she hasn't responded to ANY dose, small or large. But it is possible that she has not made that clear to him. I hope she does next week when she sees him next. Dunno how Oxycontin can have NO effect whatsoever, but it is possible that the gene that is supposed to metabolize it is deficient, and doesn't work, and therefore the drug doesn't get broken down...But then she should suffer side effects and adverse drug reactions...The other possibility is that she is a super metabolizer and breaks down the drug so fast that the effect doesn't have time to actually be felt...Those are the only two mechanisms I know of, though I'm sure there are many others to explain why a drug doesn't work for someone. She is definitely better than she was in March, a thousand times better. But she was nearly at death's door then, and even when out of the hospital, so weak and confused, we thought we'd lost the L we knew forever. Now she is almost back to normal, but for the pain, extremely thin and easily broken skin, and an obvious mental decline that is sad to see. It is mostly her memory, but that is what makes us us. L is still very much herself still, but she doesn't seem to be able to learn anything new, and has forgotten a good deal of what she used to know of current events and computer usage, two things we talk about a lot. She also repeats herself all the time, telling me the same things each time I visit, completely unaware of it. Yet she is aware that her memory is much worse than it used to be, and that her ability to use the computer at age 80 is a great deal diminished (which is terrible, considering that she was one of the first teachers in Connecticut to teach computers in the classroom). Now she can barely do e-mail. She can open one, and answer it, but then she blanks on how to send it, or how to compose a new one rather than reply to one sent...and that's about all she can do anymore.

C is obviously feeling his age - 87 (I think). He too is in pain a lot from arthritis, and is slowing down a great deal. He is still sharp as a chisel mentally, but so often sleepy that he seems more clouded than he is. He sleeps a great deal during the day, and often goes to take a nap even when I am visiting. But when he is awake and alert, he is still full of wisdom and stories from the Talmud and Jewish history that amaze us all. Nevertheless, he doesn't seem as happy and cheerful as he used to; he seems sad, down, depressed even. I have never seen him this way before and I don't know what to say to him about it, or even if I should. He smiles a little, but it is clearly an effort. Both of them say, it is an awful thing to grow old...which is pretty depressing to hear. I had hoped their golden years would be peaceful and happy ones, not so painful and depressed. It isn't fair, such wonderful, kind and loving people, to have the end of life be so miserable, but then life isn't fair, and that is just how it is. Still, I wish there were more I could do for them. But Joe is my priority right now, and I need time to do my writing, and I have also to watch my own health, so I thank heavens that C and L have plenty of help from other people and friends, and don't need a lot from me usually, except my helping them get out the Thursday-Friday Shabbat Message to the family and other weekly e-mails. C still does shopping and L is almost ready to get back in the drivers seat, if she is able to eventually. She has driven some with C but not alone yet. The big question in my mind, and I think in many minds is will she remember where she is going and how to get home. I can only hope so, at least to familiar places she has been many times.

As for me, no voices or music at all for three days. Nothing, nada, rien! Just the more or less silence of my apartment and the usual apartment noises of traffic outside and people shutting doors and the fridge running and so forth. No women singing or deep voiced man intoning like Paul Robeson, no little people (so far) complaining or arguing. It's pretty cool. It's almost spooky, it's so quiet in here. It will take a while to get used to it again!

Posted by pamwagg at December 14, 2006 09:03 PM


Dear Pam,

You are a dear, sweet person to your friends. It's just such a shame that they're not in good health. I'm glad you and Joe cleared up your misunderstanding and I do think it's a smart idea to write him a letter stating all your concerns. The clearer you are about your role in his life, the better, especially now while he can still communicate fairly well. Besides, he can review a letter at his leisure and take it in more fully.

Life isn't always that fair and it does seem a raw deal that we have to decline so much before we die but remember C and L have had a long, full life, much longer than many people and this is a good thing. Of course, it's still hard to watch such good friends decline and I do sympathize. All you can do is be there for them from time to time and treat them well, which you always do.

No voices, music or little people! What great news! I have times myself when the voices are pretty faint, usually when I'm busy doing something but I've never been without them entirely for eight years now. I can only imagine. Do you feel more relaxed too? It is mysterious how they come and go but I'm so glad that the medicine is helping you. May it last.

Posted by: Kate K. at December 15, 2006 07:16 PM

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