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This is the same entry as my last, but an unlocked version, with very… - John [entries|archive|friends|userinfo]

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[Aug. 10th, 2004|01:25 pm]
This is the same entry as my last, but an unlocked version, with very minor modifications.

Okay... talk about a long weekend, and not just because it was four days long.

Monday, I was up at 3:00 to get ready for a 5:50 flight. We ended up leaving a little bit later than expected, and that's when the first problems started.

We're in a first floor apartment, and we had a window-mounted air conditioner. Also, our apartment had been burgled twice. Although we took the air conditioner out and worked the bolt on the window, I had a sudden suspicion, and tried the window from the outside. It slid up with barely any effort whatsoever. Back into the house, then... there seemed to be no way to latch the window securely from inside. Well, when we got the air conditioner, we used a dowel rod to block the window from being opened further from the outside. we still had most of the original dowel left, so we cut it to size, and soon we had a secured window. Run for the car, right?

I did.... and then noticed that my keys were missing.

It was a bad scene, because I hadn't remembered putting my keys down, and I couldn't expect them to be in any of the normal places I'd leave them. It took another ten minutes to find them, right next to the troublesome window.

We had to stop for gas; I didn't think that was going to be a problem the night before, but next time I'll know better. Getting gas takes a lot longer than you think about, when you're in a hurry to get somewhere, and having a full tank would have meant at least an extra 5-10 minutes. We got to the off-site parking, and where relatively quickly shuttled to the airport, and got in line... and waited... and waited. I finally called out "Are these terminals working?" (As in: "Why the *HELL* aren't people using them if they *are*?) Why yes, they were working, so I called out "Folks, we're on the 5:50; can we cut ahead?" and they were agreeable...

Warning: they *will not* board you if you start the process less than 30 minutes before the plane leaves. I think we started with 29:50 left, as a guess. If we hadn't gotten gas, or if the window hadn't been loose, or even if I'd remembered "always put your keys back in your pocket during a crisis situation", we'd have made it.

However, they could, and did, put us on a flight leaving an hour and a half later, with a connection that put us in Philly about two hours later.

You know, if timing was a zero sum game, i'd suppose we'd have paid up for the minor miracles of timing that otherwise occurred.

Chuck had just gotten out of the hospital last Thursday, the day before we arrived... that meant that we'd missed a lot of stuff that would have detracted from the visit. Mind, I'd have been glad to help him get settled at home, but if you think of me as a "visiting brotherly love consultant", well, you don't want your consultants to have to set up their network connections or load software. You want them to do the things that only they can do. Whether I should be viewed as a visiting consultant or not, it was good that we had our time together maximized.

Saturday, I sat in and made helpful noises during the first visit of a hospice nurse, and then he got up and we just hung out for a while. We caught up on a few things, and he asked about kightp... after talking to her a small number of times, he loves her about as much as a gay man can love a woman, but that just shows he has excellent taste. I've often thought the world would be a much better place if everyone had at least a single friend like Pat Kight in their life.

He mentioned that The Dead were in town (nb: "The Grateful Dead" no longer exists; the band is now "The Dead", which has always been their most common name anyway) and mentioned he'd like to see them the next day. Well, I was feeling kind of funny.

See, when I came in to his room, my first thoughts were that some ancient hispanic man was being paraded in front of me trying to fool me into thinking this stranger was my brother. The "hispanic" bit is from his coloring; he's in severe liver failure (and this is why he's in hospice care). The old man, well... he looks old, and tired. Okay, and, he's had all his teeth pulled and didn't have his dentures in, which really added to the 'drawn face' look. And, his gut is swollen to the point that he looks seriously pregnant, due to the fluid retention caused by the liver failure. And, he's ... well.

He's sick. He's dying. It's something that is trivially easy to believe if you just look at him. I didn't think he'd be able to make it to the concert.

But I figured I'd see what could be done. The Dead were playing in New Jersey, and maybe he wouldn't feel up to it, and who knows. I told him we'd go if we could, and I meant it.

We went to dinner and he needed to go out to the car and rest a few times and couldn't eat much. This meant something, I think... it played into events later. Chris wasn't feeling good. (in fact, in the end, Chris played nearly no part in this weekend. This wasn't a bad thing as far as my working on Chuck was concerned... in fact, I hadn't wanted her around most of the time I was visiting. Chuck needed someone who knew him and loved him, and Chris might love him, and know him kinda-sorta, but she doesn't know him the way you know a brother.)

Okay, Chris wasn't feeling good... so I took her back to the hotel we'd ended up staying in (there wasn't house space for us to crash in after all... and that was a good thing, in the end, as well), and then Chuck wanted to go to the mall, so I took him. We walked around a bit (ten minutes or so), I bought some Cinnabons, and then he was tired (and looked it) so we went home. We sat up a bit with my mom, and cuddled the dogs (she has six Lhasa Apso dogs), and went to our respective beds.

The next morning, we all went to breakfast, and talked, and I learned that my mom is afraid my brother might be having kidney problems as well. Despite multiple diuretics, he's not peeing the way he should be. In fact, he didn't urinate the entire day, despite four bottles of lemonade (he discovered a sudden love for lemonade), and other fluids.

But then, we hung together for a bit, and I discovered that The Dead concert was 40 minutes away by car, and tickets were still on sale, and I decided that, damn it, we were going to go.

Well, my sister freaked, and left me a long, ugly message that I never ended up listening to. (Part of her worries were based on his inability to handle sitting through dinner - hence, the mention that it might have played into later events.)

I told my mom that, if there was a reason I ended up out there that very weekend, getting him to that concert was that reason. I think... well, I think she *got* it. I don't mean I think she understood that it was a really good idea, I think she knew that, if there is such a thing as destiny, as a weird, that this was mine.

Sunday night, we were going to be two brothers who loved each other, and sometimes drove each other batshit, going to a concert together. He was going to be a regular guy, who didn't have to think about how he'd get there, or could he get through a crowd, or what if soemthing went wrong. And I...

Well, pity the motherfucker who'd get in the way of me giving that night to my brother. Pity the barrier that would be erected before me, and pity the difficulty that had the misfortune to beset me.

I think my mom *GOT IT*, and realized that this really was what had to be, because she calmed my sister down. And a good thing, too, because my sister is extremely strong, and extremely loving, and if two such people (her and I) had to fight over conflicting visions of the right thing, the thing that *must* be done, well, such battles are ugly, and bloody. I'd have won, make no mistake, but it might have been a truly pyrrhic victory.

We were late; a traffic jam, some sub-otpimal directions, and hellacious parking, but we got there. We ran into one problem... the folding chair that we'd brought couldn't go inside, but we could, and did, check it. It was a good thing we did, in the end.

Our tickets were for Lawn 14, but we found a good space in lawn 9, and he lay down and got as comfortable as he could. I warned people around him who were dancing to watch out for him, that he was sick. Deadheads tend to have class; no one danced too near him, so I didn't have to worry about collisions/missteps/etc..

I had to hit the restroom, and that's when I started to realize a huge problem, one that I'd recognized before. He's having tremendous fear of abandonment. I assured him, and projected certainty... I'd find him, quickly and easily, as soon as I was done. And I did... if anyone there was psychically sensitive, I have a feeling they'd still be hearing reverberations of "DO NOT get in my way; I have a mission to complete." Psychic or not, I projected that feeling, and people tended to give me a path; those that didn't move aside when I approached, moved quickly when I touched a shoulder and asked. This worked just as well when Chuck was with me; I broke the path for him, and no one got in my wake until he was past.

The rest of the night, I stayed with him, and he tried to use the bathroom twice more, unsuccessfully.

The second time, he realized he was beat, and it was time to go home. I reassured him that, yes, I was having a good time, and was glad we came, even though the concert wasn't done. But I also knew he couldn't make it the five or so blocks back to the car. Asking around got some police officers who understood what I was asking, and said, sure, they'd make sure I didn't get stopped driving up to the concert hall, but the concert would let out soon...

"Soon?" I've been jogging, so my legs, heart, and lungs were up to it... and I had a mission.

I ran, with a prayer to Kokopelli - who better? - to keep the band playing, I ran, and I know I didn't break any speed records, but I know I set a personal best in speed and pacing. My heart was letting me know it was *not* happy with me, and I knew my right knee was going to bitch at me later (and it did), but I made it back to the car, and then got the car to the concert hall about as quickly as it was humanly possible to do so. He got up off the folding chair we'd retrieved from the checked items, and that's when I had to make my decision.

He wanted to go to the ER because of all the fluid he's retaining, and his inability to pass any urine... but he's in hospice care. He can't be hospitalized. That's part of hospice care, an agreement not to go to the hospital. I finally convinced him that I had to take him home, if only because I didn't know the ramifications of taking him to the ER. (Mom said he can go to the ER for something unrelated; if he was cut and needed stitches, broke a bone, or whatever, but this was directly related to his hospice care.)

Well, we ended up taking a long, leisurely drive home, talking about this and that, all in good humor, though I was just a tiny bit frustrated about one thing... he kept talking about how good Pat has been for me, how much I've changed, how much better things have gotten (presumably, all from her influence). I have to admit, if it had been anyone besides Pat, i'd have felt like "Geez, doesn't anyone in my family have faith in *ME* building me into something special?"

But like I said, that was minor. We had a good talk about, well, everything you can imagine. We got home, and Mom gave him some more morphine, and that settled some leg cramps he'd been having, and again, we went to bed.

i couldn't sleep for a while. Talk about deciding I was throwing away my Atkins ways for a few days... a medium bag of Herr's Sour Cream and Onion potato chips, and about four TastyKake snacks, washed down with Mountain Dew Code Red. I decided that any night you came face to face with your brother's mortality, any night that you spent an entire concert working whatever healing magic you could work to try to help him, and any night you were exhausted from spending a long time in high alert mode, was one where you could give your diet the finger.

Then I managed to get about six hours of sleep before checkout, and went back to my mom's.

The nurse and social worker were there, and they were good, and professional, and competent. My brother is in good hands. Keeping someone near him 24x7 (due to his confusion, his frequent medication dosing, etc., he needs someone there all the time) is going to be difficult, but at least the people who are in charge of his hospice care are up to the challenge if anyone is.

I think my mom is doing well. She's keeping herself busy, but getting most of the necessary stuff done. Sue is worried about them both; my mom's health isn't too good. A few times, troubles with Chuck, and their attendant stress, have triggered some Transient Ischemic Attacks, or for those of you who aren't up on medicalese, mini-strokes. So, Sue is being fiercely protective of Chuck and Mom both. I don't know how well she's handling it, but she's looking better right now than she has in other situations. I wish there was more I could do for her, but helping Chuck and mom will help her some, I suppose.

so, I suppose that leaves only one person out of the picture... me.

How am I feeling? I don't know.

Whether it's due to magic work, staying on high alert and constantly being aware of Chuck whenever he's around, lack of sleep, or stress, I've been feeling tired, and small... small, weak, impotent, whatever word fits best. I guess part of it is, if I did the most wonderful things any human being could do, what would happen? Chuck would die, when his body finally gives up the fight. But I'm not doing this to prevent his death; I'm working to help his life, and the lives of those around him. It's hard to know when you've succeeded at something like that.

Still... he mentioned how good warmth was feeling to him, recently, and we had many a warm moment on a sunny weekend with a lot of time spent in a car. And it brought me back to the thoughts of an old kitty, tired and dying, who I carried out into her yard, and guarded her as she sniffed around, nibbled at interesting nibbling things, and helped lift her to the places where she should have been able to jump. I decided that maybe, just maybe, a slow, careful walk through a concert might have substituted. And whether it matters or not, I did what I could, in the face of things that no one can prevent, that no one can change, and that's all that anyone can do, ever.

So, I guess that, on the whole, I am glad that I went.

[User Picture]From: rickvs
2004-08-10 10:14 pm (UTC)
> So, I guess that, on the whole, I am glad that I went.

So am I. It sounds like a journey that was, perhaps, more useful than pleasant ...but necessary nonetheless. You're being thought of.
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[User Picture]From: johnpalmer
2004-08-28 01:11 am (UTC)
Thank you... and, you know, the usefulness of it makes it all the more pleasant, now, in retrospect.
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[User Picture]From: tsjafo
2004-08-10 10:36 pm (UTC)
"And whether it matters or not, I did what I could,..."

It matters. No one can ask for more. Prayers and good thoughts on the way.
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[User Picture]From: johnpalmer
2004-08-28 01:12 am (UTC)
Thank you, and I think the prayers may well have helped.

It still stuns me how fast everything happened, but then I think about how it could have played out otherwise, and I think it really did play out for the best, or as close as it could.
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[User Picture]From: juliansinger
2004-08-11 07:16 am (UTC)
That sounds like a terribly difficult time period, but a worthwhile one. Glad you're mostly ok.

(My general logic on Good Partners is not that they're doing the work for you. Far from it. But someone who accepts and loves you for who you are -- all of who you are -- makes it so much easier to then go out into the world and grow, change, access the strength within you and the strength the world's willing to give to you.

Blah blah blah lovingkindnesscakes.)
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[User Picture]From: lblanchard
2004-08-11 11:46 am (UTC)
My son once made a comment to me that may cover this situation.

"Do you want to go to church with us on Sunday?" I asked him on one visit a few years ago.

"No," he replied. "But I want to have the memory of having gone to church with you, so I'll go."

I think you did exactly the right thing. So many people lose sight of the fact that life is far too precious to the dying to spend all their remaining time on the business of healthcare.
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