Monday, January 30, 2006


So Tam was coming out of isolation this weekend and couldn't wait to get home. On wednesday night she already had the news that she'd be out on friday, and was begging to come home for a two night stay over the weekend. As much as I love her and was glad that she was getting out of there, she's just so much work and stress that two nights were out of the question. I told her this and she wasn't very happy with me, which I suppose was the obvious outcome but I didn't want to lie to her and give her false hopes of a two night stay either. Still, she was looking forward to coming home right away after work on friday, and then I had to dash that hope too. I'd already had plans for both friday night and saturday morning, and I also wanted to be well rested before having her home besides, so I stood my ground and saturday evening it was.

Following through on the whole 'well rested' plan, I even had an afternoon nap that day and didn't get to the home to pick her up until shortly after eight. To my surprise she was still catheterized... I had assumed that she'd be off cath once isolation was over, but that was a bad assumption. She still had a rash that they were trying to treat. I was tempted to just turn things into a visit at that point and not have her home, but I felt so bad for her weeks of being confined to that bed that I resolved to take her home anyways. When will I learn to just go with my gut and not my mind?

Getting her home was an awkward proposition what with the catheter and collection bag trailing along, but we managed to get there okay with the typical pharmacy along for the ride. (Curiously, the small orange packet is cholesteral -- isn't that stuff supposed to be bad for you?) I got her night meds into her and had her all tucked in by about 10:30, then immediately went to bed myself. (Also curious, the only time I don't have insomnia is when someone else is at home with me.)

About a half hour later I was up to get her changed. No problem, for I had anticipated this and was well rested.™ An hour later I was up again; same thing. The third time I was up it was for something a little weirder. We have a queen bed in the corner of the room, and usually I tuck her in right beside the wall so that she has plenty of room to thrash about without much danger of falling out of bed. This weekend I couldn't do that though because of the catheter. I was not going to tuck her in with a bag of pee, which I left hanging over the edge of the bed like they do at the nursing home. That left her on a short leash and I had to tuck her in in the middle of the bed, and somehow she had managed to toss and turn her way around nintey degrees! Her head was hanging off the edge of the bed smacked up against the wheelchair, and her feet were up against the wall. I got her spun around and tucked back in, then went back to bed. Fifteen minutes later she had me up again to correct the same thing! I got another few snatches of sleep, and then she had to be changed. Again.

At this point I was still managing to get some sleep in between interruptions, but around 4:30 a.m. all that changed and she started getting me up every five minutes. She was too hot, too cold, the blanket wasn't covering her feet, arm, leg; she was turned around again, etc., etc. At 6:00 a.m. she was hungry and wanted to start the feeding tube. Well that wasn't too unreasonable, after all, it does have to run for ten hours. I got the tube started and figured that then I'd be able to get more sleep; she was probably just restless because she was hungry. Wrong. Now she was obsessed with the pump... after several "I can't hear it running" interruptions, I did what I thought was smart and turned it towards the bed so that she could actually see the damned little wheels spinning round. Bad idea. They don't spin continously but start and stop every few seconds based on the feed rate, so all that did was change things into endless complaints of "It's not running."

Now because of the feeding tube and her tossing and turning, I haven't slept in the same bed with her for quite a long time and have somehow learned to sleep comfortably on the couch. This means that each interruption actually has me getting up off the couch and walking around the corner into the bedroom to see what she wants. This is not something I can keep up every five minutes for hours on end after only a few hours of broken sleep. At 9:00 a.m. she needed to be changed again, and even though that in itself is totally reasonable, I was close to snapping.

I've lost my cool with Tam on three occasions and it's not something I'm proud of. Every time the triggers were the same... endless unreasonable requests in the middle of the night when I'm trying to get some sleep. (Water drop torture, it works.) This time I recognized my limits and all of the warning signs, and at 9:00 a.m. I knew I'd had it. I got Tam dressed (as much as you can dress a person against their will), manhandled her into the wheelchair, out to the car, into the car, and back to the nursing home. She didn't speak to me the whole way there and was completely uncooperative with both me and the nurses when we got there, and probably for the rest of the day.

I hate this ending. It's a sucky, shitty, lousy and incomplete ending. But I know it was the right one.

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