December 18, 2006

A week before Christmas

In case people don't understand, I am a caretaker of Joe, that mess was straightened out the next day. He thought I didn't WANT to do the job, and I thought he didn't want ME to do the job...That's what our conversations sometimes come to, largely because Joe will not, will never, speak his mind or state what he actually wants, but is always trying to ferret out what the other person wants, or assumes he knows and then tries to accommodate to what he presumes is agreeable to that person. Only, what he decided was not actually what I really wanted. I only accepted it because he seemed to want it that way. Of course I want to be a caregiver! Of course I want to be involved! I just don't want to do it if I am not wanted or welcome.

Last night, however, was a demonstration of the fact that I am wanted, and needed. It was after 1am and yet I had not taken my Xyren for some reason, was just about it though, when the phone rang. I picked it up immediately and heard Joe say three words: I need help. "I'll be right down," I answered, and hung up, flew into my shoes, locked the door and got down to his apartment via the stairs, not even waiting for the elevator, not knowing what I was going to find. Luckily, although there was a big problem, it was nothing dire. His bipap machine had crapped out in the middle of the night, and he had tried to call the number to talk to the people who had brought it over, but the night tech couldn't understand a word he said. So I called, and spoke with another person, a woman, who walked me through a reset about five times, and each time the machine malfunctioned. Finally I couldn't even get it to turn off and the alarm wouldn't stop ringing. At that point, she conceded that the machine was probably broken and she needed to come out and bring Joe a new one. She had a long drive to the office to pick up the machine and a longer drive to get to our building, so we would have a wait of at least 45 minutes, but that was the best she could do. I said that was fine, as long as she could come tonight, as Joe and Karen had to leave in the morning to go back to the Clinic for an AAC device (speaking machine) evaluation and would need the bipap machine for their overnight stay.

Joe by this time was exhausted. His Zyprexa does to him what Xyrem does to me: it zonks him out. So I told him to try to sleep in the recliner, which doesn't go flat and should be safe, plus I'd be there to listen for his breathing. In a couple of seconds, he was fast asleep, and snoring away. I wrote in my notebook (journal) for the next 45-50 minutes until Kerry came with the new machine. She tried to fix the old one, but realized that it really was kaput and plugged in and adjusted the new one. Finally, she tried to adjust Joe's mask so it didn't leak, then after he was asleep and the bedroom light was off, we went to the living room. I signed her papers, and she told me they had a better mask for ALS patients that she thought Joe should try and that they would send out by UPS the next day along with new hoses and a new inside tray for the humidifier that warms and moistens the air going into Joe's throat so it doesn't dry out so badly.

Finally I could go back to my apartment and take my Xyrem and sleep. It was 3:00 am and I wouldn't have time to take the second dose as the visiting nurse would be coming between 8 and 9am and I needed to sleep at least 3 hours after the first dose and 4-5 hours after the second. So I slept from 3:15 till 8:45 and took an hour and a half nap this afternoon. I don't feel too wiped out, in fact I got a lot done today, though little writing, mostly indoor gardening and cooking stuff.

Oh, some bad news on two fronts, not that bad, just disappointing! One is that my manuscript was rejected by Graywolf, which doesn't surprise me...It wasn't organized in any fashion whatsoever, since I have no idea how to, and probably didn't make it past the first reader because of that. I'm going to try for the Femto Press Kalmia Books series next, as this is for writers who write about their experience of chronic illness, both physical and "psychological." Not as prestigious as Graywolf, but so what? The other disappopintment was that I had the little people yesterday in force, in the laminating paper as usual and as ALWAYS. THe laminating paper is where they always come out, I don't know why, but I have never used it without them appearing...

Good news though, too. Joe's second sleep study was done with him wearing the bipap mask (and the machine turned on, of course), This time, so Karen tells me, though I haven't seen the records and don't know the particulars, his O2 saturation only went down to 88% which is a bare 2% below a normal of 90%, which they were not worried about. The verdict was that the bipap was doing exactly what it was supposed to do, and that he should wear it as much as possible through the night. There will come a time when he will need it during the day, but not now. Right now, his stats during the day are perfectly normal, except for his FVC, his lung capacity to move air, which is (so we found out last time at the Clinic) as high as 51%. This is because he had grown familiar with the test and learned better how to use the machine to measure pulmonary functions, which is common. This was great as the first time it was measured at barely 41% which was scary indeed.

On Christmas we are all going to my parents' house iin Madison, Joe, Karen and I, which will be packed with family and friends and relatives of friends! It may be rather overwhelming to me, frankly, but Joe assured me that he won't mind if I need to get away from it all and go upstairs to hide for a while. I haven't been out to the Madison house in years. It is right across the street from the beach and is lovely in wintertime, though this will be my very first Christmas there (first time ever that I've been welcome). I am sure that at Christmas time it is particularly beautiful, with the lights of the decorations all reflecting off the darkened bank of windows. The house used to be a summer house only, so it has many windows yet a cozy feel that is particularly nice at night. Before Christmas, we are having a Christmas eve dinner, just Joe, Karen and Gary and I, for which I am making butter cookies, Colcannon (potatoes mashed with mashed cabbage -- it's delicious!) and raspberry sherbet in an ice cream maker. Karen has the other duties, as this was HER idea, and I frankly am dreading it, I hate all this eating and eating...But I don't mind cooking, and no one forces me to eat more than I can or want to, so it'll be okay. I just have better things to do! :)

Christmas morning, Joe and Karen and I will get together to open presents. Ordinarily I wouldn't buy presents, because I like to give Advent calendars and don't like the commercialism of Christmas. But Karen is into the present giving business, and has bought lots of things for Joe, and I knew he needed a lamp, so...I also bought her an icream maker just like Joe's because she was going to get one after Christmas and I had a 20% off coupon, figured I get it for her for a gift. But those are my only presents and frankly, I'd rather they not be Christmas presents, forced from me by the season, rather than spur of the moment, goodwill gifts that I give because the spirit moves me and not because it is expected of me. I don't mean to sound like a Scrooge, but Christmas should be about more than simply giving presents and eating big meals...We should be remembering those who can't do either, and maybe sending the money to them instead.

Posted by pamwagg at December 18, 2006 05:52 PM


Kate, I would love to visit your blog, and hope that I can after Christmas when things have settled down.

One way to address the issue of giving gifts to those less materially fortunate is to give gifts of charity in the name of a recipient. Gifts of Service is one organization which allows one to easily do that.

Pam, I hope that you and Joe have a lovely Christmas at your parents' house, and one infused by love.

I have been away much, but read about your elderly friend L, and cannot stop thinking about her. One thing which may or may not help, but would almost certainly be harmless, would be for her to try the supplement combination DHA, choline, and uridine. Human trials are still ongoing, but, well, if one were a declining gerbil one would have it made in the shade. The combination (again, human testing is underway but not reported on yet) does nothing for beta-amyloid plaques and tangles but strengthens the synapses, which is apparently most useful. Do a Google search and see what you think . . . Uridine is found in human b. milk (had to abbreviate in case the questionable content patrollers are afoot) and is now added to all baby formula, choline is widely available, and of course, DHA supplements are everywhere.

Wishing you the best, as always--

Posted by: Cynthia at December 18, 2006 10:39 PM

Dear Pam,

I know you're right about Christmas being a time for thinking about others who are less fortunate and helping them. I try to help out a bit with money but I would really like to put in some time with others as well. A New Year's resolution to do volunteer work. I tried volunteering when I was much sicker, taking the elderly to their docor's appointments or shopping, but I found I couldn't keep it up. But now I am feeling much better and I think I could try again. Still, I do love giving presents but tend to only give to my family and one other friend's family. I'm afraid it's a tradition in my family to give too much. This should change, at least on my part and I should give to others outside my small circle. Thanks for being a bit of a Scrooge (though not really, you would give to Tiny Tim's family in a heartbeat).

I'm glad you could be there for Joe, glad that he reached out to you. It seems only natural that he would reach out to you. It must be scarey to live alone in his condition and you live so close by and are such a good friend. You may not be a perfectionist, but you are a very thorough person, you do your research and are responsible. Joe is blessed to have you. I hope he learns how to show his appreciation to you over time.

Thanks for posting my blog address. All are welcome.

Posted by: Kate K. at December 18, 2006 09:58 PM

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