WAGblog

Joe's amazing progress and the progress of his illness

In the Five weeks I was gone, Joe has made some amazing strides "back" from where he was, having just gotten out of the ICU. He is now using a portable ventilator, and is free to roam the unit, small as it is, in a power wheel chair, which he does almost daily. After we, or one of us, learns how to suction him, he will be able to leave the unit and go outside when the weather is good, maybe even leave hospital grounds, though we have no idea what the policy of the hospital is on that right now. At the moment, it's mostly a matter of who and how to learn suctioning, which is a matter of Joe and one of us taking an hour and a half 3-4 days a week for a tutorial. Given that it takes us 30 minutes just to drive to the hospital, and every one of us -- Gary, Karen and I -- are disabled in one fashion or another, this poses some real problems. We have already resigned ourselves to having THanksgiving in Joe's room or in the Day Room at a portable craft table we bring in, because there is no way any of us could learn suctioning before then. It is hard enough to clear out Joe's apartment by the middle of November, let alone get across town and halfway across another to learn suctioning...

Dr O and Lynnie and the visiting nurses don't even want me to learn it at all, fearing that the training and the responsibility will put too much pressure on me. They both understand something that is difficult to put into words, which is that this relationship, for all that I call myself Joe's "girlfriend", has always been very unequal. Joe fell for me twenty one years ago, and it was a matter of committed love at first sight. He has never wavered, not even when he "dated" Karen for about six months, more enamored of the idea of dating than liking Karen, whose favorite topics were and are movie stars and fashion...Joe could never figure out why either mattered in the world, and while he was polite, always came back to me, he said, because with me he could have a decent conversation! Plus, the only reason he "dated" Karen in the first place was because the abusive friend I'd had for the same twenty years had convinced me to dump Joe, stop "stringing him along, and free him to do so...This other so-called friend managed to use tactics such as this whenever threatened by my having any other friend. I relinquished so many new friends over the years, giving in to that friends bad mouthing them, or convinced that I was doing them more harm than good by the "honesty" of this abuser...

So, Joe dated Karen for a short time, but eventually dumped her, unceremoniously, when she became so flagrantly greedy and profligate that he actually blew his stack and got angry. When, later, she told me he'd yelled at her I could not believe my ears. Joe, angry? Impossible. I literally had never heard him so much as raise his voice with me. I had done so with him, yes, but he never responded to my anger with anger, only with calm reasonableness, and a willingness to try to figure out why I was so enraged. In 20 years, I had never but once made him mad, and then his response was simply to get up and leave the room. Even then, I am not sure he was really angry, so much as sick of my anger and perplexed as to how to get me to calm myself. He certainly never held it against me, and was always ready to see me again and start things anew.

But back to the unequalness of the relationship: I understood from the first time I met Joe in the hospital, that he was "in love with" me. It was kinda obvious...But I did not feel the same way towards him, not at all; in fact, given his lack of social graces (he had not yet learned how to have a conversation, nor even how to be socially appropriate in the usual adult ways; I was not perfect at it either, but was not the bumpkin he was...) I was totally turned off!

I tried to avoid him, but he followed me like a lovesick puppy dog everywhere, and since he lived in the same town, and within the same support community of the mentally ill, I kept meeting up with him no matter what I did. So we were friends, whether I liked it or him or not. He grew on me, but slowly, and I never felt the passionate love for him that he felt for me...I only love him now the way anyone loves a loyal and true friend; I may be his "girlfriend" because he asked me to be and I wanted to do something for him; but he is definitively NOT "my boyfriend" -- if you can understand the difference, and I never do put it that way.

It is not that there is someone standing in the wings, and in fact if there were, I would not have agreed to this arrangement. Of course not! But I do not expect anyone to come along at this point either. And so I can do this for Joe, and not worry, and not feel too horrible about it...Am I wrong, or two faced, or evil to NOT be in love with Joe, yet let him call me his girlfriend, without, at least mentally, feeling that he is my boyfriend? Is keeping that mental reservation wrong of me? In truth, I don't feel capable of falling in love, and I am really surprised that Joe has been (able to fall in love, even love at first sight!), given the paucity of emotion he has been able to feel in his life. I don't even know what he considers "love." But he has indeed treated me with "unconditional regard" so he acts like he loves me, and that is good enough for me...

As for the progression of his illness: he cannot push his body to an upright position, if he slips in bed and gets tilted to one side. He cannot raise his upper arms off the bed, though his forearms work enough to use the aphabet board, and his fingers can still type, though both tire easily. I don't think he can stand any longer, or if he can, it's a useless ability, since he has to use a wheelchair, though it may help him get into one for now. His tongue is completely immobile, but luckily he is allowed to spray his mouth with water which subsequently drips down his throat, because his swallowing muscles themselves still work fairly well, though he cannot have anything sweetened, lest he aspirate. This was a huge relief to him, as his mouth had completely dried out once he was on the respirator, and his saliva was thick and distasteful in his mouth. Without the ability to scrape it off his tongue, he was frequently uncomfortable to the max. It was a situation he has always found troublesome, and on Zyprexa, even before his illness, he was never without a cup of water in his hand. Now, he cannot do this frequently, but when the speech and swallowing therapist visit, they allow it with supervision.

Finally, I gave up on the Speech therapist ever getting Joe a speaking device, and wrote to Voice for Joanie, an organization in the state that lends out such devices to those who cannot afford or whose insurance will not pay for them. She said she will put a Palm Pilot type of device in the mail for me tomorrow, and it should arrive Friday or Saturday at the latest. I realize that Joe will be ambivalent about using such a machine: he is practically a luddite when it comes to technology: he knows it inside and out, theoretically, but is scared of it when it comes to actually using it! And he is so change-averse that he would rather be stuck with the alphabet board and nearly complete silence, than deal with the frustration of learning a new skill. But it may be too late for him to use the Palm. His fingers may not have the fine motor skill need to operate it. He was supposed to get one back in April, but they were upgrading the machines then and they weren't sent out until July...and he got pneumonia on the 4th...And so he never got one, and then it was too late...

Well, it is after 11pm and I have to take my first dose of Xyrem or else. One last thing: Xyrem, Dr O told me, has the additional benefits -- or Delta sleep, slow wave sleep, does -- or producing human growth hormone, and promoting the growth of lean muscle mass. This is very interesting to me, because for 7 years I have done almost literally nothing but sit in my recliner and read or write, except for a few trips outside a week to do necessary shopping, errands and appointments. I have taken NO formal exercise at all. Yet today I went for a walk with the reporter who wrote that lolng article on Lynnie and me some years back and climbed a steep hill, while talking the entire way, without the slightest hint of difficulty. And this while going at a good clip, my usual 3 miles per hour. So I'm wondering if indeed I have not lost the muscle mass I "ought" to have, all because of this drug. I actually dread taking it but if the above is true, well, perhaps I should be grateful.

Enough for now. Gotta stop and I ain't gonna even proofread this, so there!

Posted by pamwagg at October 29, 2007 10:24 PM | TrackBack