AOL (and the whole machine, for that matter) was so very healthy last night, I don't understand why I got the "full connection cannot be established" message again this morning. Bleck. Something's slightly off.
The van finally got its alignment this morning, and I picked up the new glass for the CD cabinet doors (both original pieces were broken in shipment, which I didn't find out until Monday evening, when I went to install the glass), so at least some things are progressing.
Mensa dinner this evening. It's going to be the last dinner for one of our members who is moving away, so there should be a lot of people there.
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The realization.
I have finally faced the reason why I was so depressed for so long (four years) after Jay died.
I think I accidentally killed him.
I cared for him alone, and I did it so well the visiting nurses were impressed. I turned him and packed pillows around him, so he never got any bed sores, not even on his heels, which impressed the nurses. I exercised his arms and legs, and worked his hands and feet, so he never completely wasted, and his tendons didn't shorten. I kept track of the pressure in his brain (which could be sensed through the reservoir implant in his skull) and adjusted his steroids accordingly. I gave him eight different medications on eight different schedules, requiring different food timings. I gave him injections of anti-clotting meds every day. I washed his lower body several times a day and changed and laundered linens usually several times a day. A nurse came once a week to monitor him and take blood for Dilantin levels, and an aide came twice a week for an hour or two to wash his hair and beard, and to allow me to run errands. I spoon-fed him, and held his sippy cups, and monitored his solid and fluid intake, adjusting for bouts of violent nausea. I washed the walls when we had projectile vomiting.
I learned how to use the Hoyer lift to get him from the bed to the wheelchair and back. I learned the fireman's lift to get him off the floor when he tried to get out of the bed or chair and fell.
When he had a bad case of candida albicans at both ends and the medicine the doctor prescribed made him throw up (and throwing up was very serious because it screwed up his meds and could cause an avalanche effect), I researched the subject and found gentian violet, and it worked, and the nurses were amazed. I never left the bedroom for more than ten minutes, since that was the limit of his memory and he got frightened if he didn't know where I was. I read to him for hours at a time. I reassured him during delusions and frightening hallucinations.
But mostly, I just loved him.
The immunotherapy he'd had seemed to be working. The tumor seemed to have stopped growing. But because it was so experimental, they had accepted only candidates who had failed all other therapy and were in pretty bad shape to begin with. It was I who discovered the major flaw in the therapy - the sensitized white blood cells attacked nerve linings as well as the tumor, and essentially gave the patients multiple sclerosis. That's what had blinded Jay.
So, with the reevaluation of the clinical trial and his own weakness, he was no longer getting the immunotherapy, but the tumor had stopped growing. With excellent care, he probably could have lived longer. He was weak, blind, paralyzed on one side, with hallucinations and delusions, and no short term memory - but he never gave up his plan to beat the tumor and return to full function.
What happened?
I screwed up.
When you lie for months with little activity, and especially when the brain is no longer talking to one half of your body, certain physical functions no longer work as well as normal. I kept him full of psycillium to keep things soft and moving, and mostly it worked, but every so often there were rocks that wouldn't go that last inch or two. Then it was necessary to take things into one's own hands, literally. It was the only way. (Lest any nurses out there worry about the "spinal feedback" problem, remember his paralysis was due to a brain malfunction, not a spinal injury, so it was ok. He couldn't have a water enema because that would increase intracranial pressure, and oil didn't do anything, since it didn't soften things and the problem was mainly due to a lack of muscle pressure.)
I had done it many times. Once, when he was staying at a nursing facility in Staten Island while he was getting treatment at a nearby hospital, I had just arrived home from spending the day with him when he called from his room and begged me to come back (a 2+ hour drive), and "fix it". I got there at midnight and sneaked in when the nursing shift changed, and went to his room. When the nurses found out what I intended to do, they had a fit (they were hung up on the spinal feedback thing), then I found out that the records showed he hadn't had a bowel movement for ten days while under their care, so I told them they could either call the cops and have me dragged out, in which case I would tell the world about the ten days, or they could turn around and walk away. Then I simply closed the door and did it.
So anyway, this day at home, I did the thing. Usually it was possible to squish the rock, or split it in two, or if it was small just wiggle it out. But this time there was a particularly large and very hard rock. It wouldn't split, and it wouldn't squish. No amount of lubricant helped. I think I tried too hard. When it finally did appear, there were blood traces on it.
When the visiting nurse came the next day, I told her, and she said no big deal. The day after that, his kidneys quit, and then he became sluggish and feverish, and then it got really serious. We moved him to a hospice room in the local hospital. I moved in, too. Every three days someone would relieve me for an hour while I ran home to shower and feed the cat.
Seven days later he died in my arms.
It was always so ironic to me that it wasn't the tumor that killed him - not directly - it was a massive systemic infection that caused all his organs to shut down, one by one. Because he was under hospice care, no one did a culture to identify the infectious agent.
I think it was always in the back of my mind where he got that infection. I never allowed it to move to the front. It was only this week that the thought took shape consciously. But it explains why I was so very depressed for so very long.
I think I screwed up.
A small tear in the tissues probably would not have been a problem (his immune system was not depressed, even after all the chemo, probably because of the treatments during the immunotherapy), but I'll bet it wasn't a bacteria that got in.
I'll bet it was the candida albicans that got him. His alimentary canal was full of it. And I opened a door to let it in the rest of the way.
Having brought it up front, I think I can finally let it go. I did a good job. I tried. I made a tragic mistake. But maybe it was meant to happen, because there really wasn't any other possible outcome. It was an accident on my part, but maybe in the greater plan, it wasn't an accident.
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