June 10 -- Falling over another cliff

The last 36 hours are a blur. Wednesday evening, I went back over to stay with Dick until the hospice nurse was to show up at 8 p.m. to begin the round-the-clock sitting with him. As Snoopy always like to say, "It was a dark and stormy night." Outside his window, we were having 60 mph winds, lightning, thunder, and tons of rain -- a real Texas-style thunderstorm. It was fitting.

When I got there, he was in his wheelchair in the dining room. Kevin was with him, feeding him with a spoon. I took over and let Kevin go home. I found that Dick could use his left hand to put his milk to his mouth but not his right. With his right hand, he seems to move in very slow motion and sometimes it seems that someone has pushed the "pause" button. He also misses his mouth entirely when he uses the right hand, but with the left, it's just fine. He wouldn't try any solid food, but he would eat the ambrosia (strawberries and bananas in a sweet yogurt sauce) if I fed him with a spoon. This is all new since the fall the night before. The night before, Dena had brought him a Subway sandwich for dinner that he ate by himself.

After dinner, he wet himself and the bed too and then motioned that he wanted to go to the bathroom. He was desperate to go to the bathroom, not realizing he had already done it in the bed. I got one of the aides to come in, and she was able to explain to him that we needed to put on a "brief," or diaper to keep him dry. He let them do it, but he wasn't happy about it. He finally stopped fighting after we put on a pair of his underwear over the brief. It was necessary, as it had become clear he can no longer control or even be aware of it. He is desperate, however, to go to the bathroom, obsessed with it. It was the only thing I could understand out of his mouth that evening -- "Go to the bathroom" over and over and over. Nobody else would probably even understand him, but I did. I kept telling him he couldn't go right now, because of the lightning storm, and we would see about it later.

About 7:30, I stood up to go into the hallway for a few minutes to have a break. As I did, I stepped into water about one inch deep and creeping towards his bed. Great. Somehow, the water from outside was coming in through the wall. I went to get help, and when I got back to his room, the overnight nurse sent by hospice to sit with him was walking through the water to reach him, complaining noisily the whole way.

While she was filling out paperwork in an adjoining room, the aides moved Dick to another room. I was thrilled. The new room was much cleaner, smelled much better, and didn't have a noisy roommate. I was also relieved that someone was going to stay with him all night. But as we moved him to the new room, this new nurse -- Pamela, I later learned -- was annoying me to death. First of all, she walked right in and started bossing me and everyone else around without even asking me anything or trying to get to know him. She didn't introduce herself to either of us until I put up my hand and asked her for her name. When she walked into his new room, she said loudly -- right next to him -- that she had "expected someone who was barely conscious." She seemed so disappointed that she was actually going to have to do some work during the night, changing him, and that he kept shaking the bed rails and pointing to the bathroom door! When she made the comment about expecting him to be unconscious, I pulled on her arm and took her into the hallway. I told her -- again -- that he could hear just fine and that what she had just said was rude and upsetting to him and to me. She glanced back into the room and said, "Well, if he doesn't stop that, I'll just give him some Lorazepam." I asked how she was planning to do that, when he doesn't want any medications at all and refuses them. She said she'd just give him a suppository if he wouldn't take it in his mouth. I said, "Good luck with that," because there is no way to do that without really irritating him. She continued to speak by shouting into his ear. I told her three times, before she finally stopped, that he could hear just fine and that she was disturbing him and the other patients. Finally, she lowered her tone. Meanwhile, Dick is used to going to bed at 7, and this was now 9 pm and he was so tired from spending the night before in the ER. I was tired for the same reason, on top of jetlag. With great reluctance, I left him with her for the night, knowing I couldn't stay because I was on the brink of collapse.