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Wednesday, September 30, 2009


composition in gray #9

There was a time today when 5 people came to see Jr at the same time, and not in a group of 5. It just worked out that these people all came to see him independently at the same time. It took raising him from his pillow. I like for his friends and relatives to see him as he is now so they will know. I believe it's important for them to know how he is in every phase of his fade. I tell them their visit is important to him even if he doesn't know who it is or what they're saying. It is. He will ask me later tonight or tomorrow some time while he's up riding the wheelchair who all those people were. I will tell him about them individually and he will gradually catch on. I explained to them he's in a daze that sometimes sees with some clarity and sometimes does not. They're neither one predictable.

I want them to see him, because, like I explained to 2, because it's important to him to be visited, makes him feel good even though it wears him out and he doesn't know who it is. I don't tell anyone that just a few weeks ago he said to me, "I've got a short time to live and nobody is coming to see me." Days go by when no one comes to see him. Everyone tells of how important I am to Jr. They mean it. I appreciate it. The very best was a few days ago when I was at my wits end, being short with him family style. When I had everything cleaned up and him settled clean in the bed with head on pillow, I put my hand on his shoulder and said, "I really do care about you." He said, "You sure do," and drifted into sleep or wherever it is he goes. I don't need any more than that.

Monday night 1am I wake to a loud crash. The kind of thing that the first thought in my mind as I woke was, Is this it? He had been up riding the wheelchair. The carpeting in the house is like mud for his wheelchair. He rolls 3 inches forward, 2 inches back each turn of the wheel. He doesn't get anywhere very fast, especially through doorways. He likes the floor in the other part of the house because it's hardwood and smooth like a gym floor. He likes to roll the wheelchair in there, because it's so easy and he can actually make it roll. When he came back out, he found the door that I had leaned against the wall just this side of the door he went through, believing it out of the way, out of his way, safe.

After he came through the doorway on the return, he went to close the door that I had leaning against the wall. It crashed, broke a little bit of stuff, made a big bang that woke me. He sat in his wheelchair like an innocent baby, had no idea what happened except the door fell down. He was bewildered, not knowing what to make of it. I told him it was all right, not a problem, nothing got hurt. I showed him how I had the door leaning there and explained he tried to close it instead of the other door. And it's not a problem. All is well. He was glad to know that. It eased his guilt of doing something he didn't know he did.

Explaining doesn't help a very great deal, but I still know Jr is inside there even when it seems like he isn't. I know that he understands what I'm doing and what I'm saying on the level of the subconscious, possibly bypassing the conscious that has lost its foundation. I know Jr is understanding me, so I talk to him as I always have. One part of his mind may miss it, but the other part gets it, and that's the part I'm talking to anyway. I feel like I have a feel for what he's going through, not an understanding, but a feel. Though he's far away, he's also present. His mind is a fog, but we can communicate in a fog like we can drive in a fog, just not as fast as in the clear. That's ok. His mind has slowed down considerably, and I go with it as I see it.

It's become so interesting keeping with his changes as he declines in body and mind that it somehow bypasses the sorrow I feel for his condition. I pay close attention when he talks, unless it's jibberish in slurred and mixed up words, I respond to him and he understands. When somebody stands there and talks to him, I feel compelled to explain that he can't understand sentences any more. Phrases or words. But I can't do that, because Jr also likes the sound of being talked to and pretends he understands what he's hearing. When he can't act any more, he starts talking about something entirely unrelated and he talks away what energy he has left, then he lies down and puts his head on the pillow and he's gone. I've learned how to stay with his mind and be able to communicate with him along the way. It has its moments, but for the most part we communicate very well, because I let him lead the way when we talk, as I'm never sure what he can comprehend.

Say something to him that causes him to have to stop and think about it, he can't do it. His mind goes blank. Nothing. There are times that visitors talk past his comprehension, and I feel a need to advise them, but can't do it. It's such a long list of things I'd have to tell everyone, that it becomes something everyone has to discover for themselves. And again, the only thing that's important is that the presence of a visitor be there. He didn't know who was there today, but during the course of the day tomorrow, he'll ask me questions and gradually piece it together who was there. When he gets it, he's got it. Then it's gone. But that's ok, because it happened and the real Jr deep within was aware the whole time, and that moment was all it's about.

It seems like he's trapped in the present, but then I think what a ridiculous thought. Trapped in the present. The present is all there is. Is that really trapped? Like being trapped in the universe. Just trapped in existence. But in Jr's mind he's only trapped in a mind that doesn't work. The Jr within that is the observer is the same, it's just that he has very limited control over expression. So I regard him and talk to the Jr I know is inside at the same time I talk to the Jr that can only understand words and phrases. This is why I can't turn him over to a nursing home. I know he's in there fresh, alert, alive like he's always been. The body and mind don't work anymore, but that doesn't mean he's not there.

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