We've had some highs and some lows the past couple of days. On Monday, Paul wouldn't eat breakfast or take his medicine in the morning. He did eat lunch, but still wouldn't take his medicine. When he had a Pepsi in the afternoon, I put a Decadron in it. Paul's sister and Dr. Nicholas had both said they thought that was ok.
He ate a good supper, and drank his milkshake at bedtime. I'm routinely putting his phenobarbitol in the milkshakes now. He had a pretty good evening. We worked a puzzle, and he even put in a few pieces.
When he went to bed he had a hard time settling down. At some point in the night, he got up. I don't know when because I didn't hear him. However, at 4:30 a.m. I heard the door alarm go off. (I had bought some alarms that you hang on the doorknob, which make a shrill sound if someone tries to open the door.) I jumped out of bed and there was Paul in the kitchen. I don't know if he was actually going outside or if he just bumped the alarm. At any rate, I was glad I woke up. I spent the rest of the night on the couch. He didn't sleep at all after that, and I "slept" with one ear and one eye open.
The hospital bed came on Monday. I have it where the dining room table was, and the table is in the middle of the room like we sometimes do when we have a big crowd. I didn't know if everything would fit, but it's not too bad. You can get around the bed ok since it's not as wide as a regular hospital bed. Paul hasn't slept in it yet, but we did use it for a Reike treatment on Monday.
On Tuesday, Paul let Rosemary, the nurse's aide, give him a shower. We bought a hand-held shower head for the shower downstairs, and use the portable commode for a shower seat. He cried when she played the piano for him. That was the first time he had done that, although he has been crying more these days. He ate a good breakfast and lunch and took his decadron both times.
In the afternoon, the woman who had done the narration when he sang his last two solos with "ah", came and played the piano for him. She called me earlier and said that she had heard I was asking people to come and play or sing for Paul, and she would like to come and play the piano. She played a bunch of old songs, and Paul really enjoyed it.
Paul was restless all day, and didn't take any naps at all, which is very unusual for him. We looked at quite a few family pictures - we're up to about 1985 now. He ate a good supper and again took his decadron. In the evening I was going to go to a movie with Karen while a friend stayed with Paul. I had told Paul about it several times, and he didn't seem to mind. However, when Karen walked in the door, he got very angry, so we decided not to go.
Karen was really upset at seeing Paul like that, but I talked with her and told her that it wasn't really Paul saying or doing those things. I assured her that I wouldn't let Paul actually start hurting me. She also talked to Philip on the phone for awhile, and eventually she calmed down. Paul had calmed down right away.
After a little while, Paul decided he wanted to go somewhere, so he started putting on his shoes & socks (in that order). Karen took off her socks and shoes, and showed him how you have to put your socks on first and then your shoes. She really is very good with him.
We couldn't figure out where he wanted to go, so we just got in the car and I had him point which way we should turn whenever we came to an intersection. We rode around for awhile and then ended up at the grocery store, where we bought a couple of puzzles and some candy. We then came back home and had a snack. Karen thought Paul might like watching the video of his bicycle trip across the United States, so she put it on, and he really did enjoy that.
I didn't have any trouble getting Paul to go to bed and he went right to sleep. At some point in the night he got up and went down to the living room and fell asleep on his comfortable chair. I've quit taking my amitriptyline (for fibromyalgia) because it makes me sleep so soundly. Even so, I don't always wake up when he gets up at night.
If we continue to have problems at night like we did last Thursday and this past Monday, I'm going to hire someone to stay here during the night so I don't have to worry about him. I've taken everything that I can think of that he might hurt himself with and put them in the middle room, which I lock at night. Even so, I worry about him being up at night when I'm still asleep. I also know that I have to get my sleep at night or I won't be able to function during the day.
Today he ate a good breakfast and took his decadron. He seems a little more unsteady than usual when he walks from his chair to the table, etc. He's napping now.
Continue to: Jan. 30, 1999
Return to: Diary of a Brain Tumor Patient's Wife
Created and maintained by Renette Davis. Send comments to Renette by clicking here.
Created: June 7, 1999
Last updated: July 20, 2010