Life, the universe, and lunch

Update

Yes, I haven't written much about how Tammy's been doing lately. I keep thinking that I will but as time distances me from the various events they'll only become tougher and tougher to write about. Part of that is because I've joined a gym. I'm sick of being an insomniac who struggles to wander into work at 10:00 a.m., then leaves at the end of the day without any real feeling of accomplishment despite what I may or may not have actually done during the day. I can't change many of the circumstances that surround me but I can change myself. My hope is that going to the gym will energize me during the days and let me sleep for real at nights. The first four weeks have yet to accomplish that, though I am feeling somewhat better about myself. I've gained weight (fuck!) but I'm hoping that's just muscle and that it will help me lose weight in the long run. (Dumb facts: 1 lb of fat burns 3 calories a day, 1 lb of muscle burns 50-70 calories a day.) Last night something truly weird happened. I went to bed before 11:00, woke up at 7:00 this morning and made it into work for 9:00. Yes, I know! Really!

What else... Tam's infection is gone. Oh wait, I covered that. But where I left it was that I tried to have her home overnight and it just didn't work out. The following weekend I went for daytime only. I agonized a bit over picking her up (there's always a huge sense of dread these days) and didn't manage to do so until about 11:00 a.m., but had her home and we watched something-or-other on tv and things were relatively okay. She still had the catheter but it didn't seem to be working, then by 3 or 4 in the afternoon it was clear that it flat out wasn't. She was 'bypassing' (use your imagination) and in a considerable amount of pain. I took her back to the nursing home and we informed the staff who promised to look into it right away, but when you've got 1 nurse in a wing of about 30 patients, right away is a relative term. I think it took a half hour or more for them to get to her, and instead of removing the catheter all they did was attempt to unblock it, which seemed to succeed at first but they wanted to observe her for a few hours after that to be sure. I stayed with her for that time and after the initial volume that filled the collection bag there wasn't anything else. I left her around 10 or 11 as they were beginning to change the catheter. About bloody time.

I was completely drained and didn't go back to see her until wednesday night. She still had a catheter, but the rash that had been clearing well on sunday was worse again and it seemed obvious to me that the catheter was still blocking, and that she was bypassing. My theory is that when you have a catheter, they assume that briefs don't need changing except for the occasional #2. If that catheter is blocking and you're bypassing a lot, then suddenly your skin is in near continuous contact with, well, you know. I think that the catheter was fine when she was bedridden with C. Difficile, but once she was up and around in her chair again there was way too much tugging on that stupid little tube for it to work properly. I told them this and the next time I saw her the catheter was gone, though unfortunately the rash has not healed up one bit since. It seems that having that tube in there for so long has destroyed any remnant of muscular control that she still had. Up to the point where she got the feeding tube, she'd pee about as much and as often as any of the rest of us, she just didn't know it until it was too late (hence the briefs). Now she pretty much trickles all the time. When I have her at home I can change her once an hour, and that plus the construction of the brief would probably be enough to keep her comfy, but at the nursing home she just doesn't get changed often enough. She can't push the call bell so it's up to them to check on her regularly, and now that needs to be a lot more regularly than it was. I think the solution is for them to change her on a schedule instead of 'as necessary', and I've been meaning to call the director of care about this for at least the last two weeks now, but that means calling between 9 and 5 when my brain just never thinks about such things. Typing this now just prompted me to set a reminder on my Treo to nag me about this tomorrow -- hopefully that will do the trick.

Man, so many more weekends of Tamness to catch everybody up on. The following weekend we did a saturday day, and other than having to change Tam a lot more than I'm used to, we had a great day. Probably the best day I've had with Tam in the last year. She wanted to see Eight Below that night but it wasn't open yet so we saw Brokeback Mountain instead. A good movie, a really good movie; yet somehow didn't seem to be as good as all the hype it's gotten. I just didn't see the love between those two guys until the very end of the movie. They were hugging, having sex, and engaging in angst-ridden dialog but it just didn't ring true with me. Either the actors didn't pull it off or I'm just too straight to appreciate what was there. Although I have a number of gay friends I've never seen any of them in relationship mode, maybe that was it. Regardless; at the end of the movie even I felt the love and it was hugely moving. Good flick.

Valentine's day went well. I brought flowers to the nursing home and we had to hunt a bit for a vase (a lot of stuff disappeared for disinfection while she was in isolation, and unlabelled items didn't always make it back), but by 7:30 we were heading home for a visit. While in the car Tammy complained of being hungry -- apparently my message to the day staff that I was taking Tam home for Valentine's after supper was translated to the evening staff as my taking her home for supper, and they hadn't fed her. At 8:00 we were home and I was changing her (which included a funniest home videos moment, so then I was changing the bedding), at 8:30 I started dinner, at 9:00 I started to feed her, at 9:45 I was changing her again, at 10:30 we arrived back at the nursing home, and finally at 11:00 I was heading back home. Despite all that, in the end it was a great day and I didn't much care (yet apparently still remember).

That thursday we had another significant event as Tammy was finally baptized into the Catholic church. My feelings on that are mixed, but it was a good day. A private service was held in the nursing home chapel at 2:00, followed by mass at 2:30 at which Tammy also celebrated her first communion. (Not her actual first because the lay ministers that bring communion to the nursing home have given it to her previously, not knowing that she wasn't a Catholic; but certainly her symbolic first.) I don't believe in religion but something rather amazing did happen at her first communion. These days it's extremely difficult for Tammy to communicate, she's typically very quiet and speaks in halting sentences that are increasingly impossible to comprehend. Even if you ask Tammy to repeat something, she'll repeat it exactly the same un-intelligible way the second and third times around, leaving you no better off. When it came time to say the Our Father during the communion celebration though, Tammy recited it loudly and clearly, every single word. I know that she's prayed a lot with my mom in the last several months and that's probably why, but still, I couldn't keep from tearing up.

That weekend we did sunday at home again and saw Eight Below before heading back. Another good flick, though afterwards I read the reviews on Rotten Tomatoes and most critics didn't seem to like it as much as I did. I think March of the Penguins ruined them for it; a few even complained that Disney threw it out there to capitalize on MotP fame. (I don't know about that, I suspect Eight Below was filming before anyone knew what a hit MotP would be.) I do have to agree with them about the lead actor though, he just didn't sell the emotion to me. Fortunately the nature scenes more than made up for Paul Walker's shortcomings. Anyways, yeah, that made two normal happy weekends with Tam in a row. I hate to say it because it underscores yet another loss, but I think that having her at home just for daytimes has really become key to having quality time with Tam again.

This past weekend we headed to a concert at the church on saturday night, but apparently when the St. Mark's parish bulletin says there will be a "Benefit Concert for the Sacred Heart Conference in the church hall", they mean the church hall at Sacred Heart, not the one at St. Mark's. I really think they could have worded that better because we weren't the only ones who showed up to the wrong place. Anyways... when we missed it Tam said that she wanted to go to church on sunday morning, so I tucked her back in at the nursing home and we made it to church the next day. It meant that I had to be responsible and not see three extended Deko-ze birthday sets in a row (I'd done Footwork on friday night and had hoped to do the Gallery@Guv on saturday night followed by Comfort Zone sunday morning), but that saved me a lot of money and we had a great visit at mom & dad's after church as well.

Now finally, the tiles. They haven't arrived yet so my Tiling with Bonnie plan didn't work out on saturday morning, but that's probably just as well because I didn't get back from Footwork until 7:30 a.m. and I slept most of the day before heading to the abortive concert attempt with Tam. I called Home Depot today (shit, yesterday now) and was told that they should, should, be arriving today. We'll see.

So that's it -- you're updated. And I will once again be late for work tomorrow. Today.

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posted by ...K @ 1:24 AM