Yesterday was a good day in some ways and a rough day in other ways. It was good because Paul was more alert than he has been for awhile. He ate quite a bit - jello, chicken salad, pudding, applesauce - and I was able to give him some of his medication in the food.
However, from about 4:30 until about 8:30, Paul had several periods of extreme agitation. One time I was able to settle him down by stroking his arm. Another time I did some exercises with his legs which helped for awhile. Another time we were able to distract him by putting on a bicycling video, and another time we were able to calm him by singing some hymns.
When he was calm, he was very affectionate, telling me he loved me, saying I was his favorite, etc., but when he was agitated, he was very angry, often incoherent. He also seemed to be hallucinating some, which was pretty scary. He finally wore himself out, and then he slept real good during the night.
This morning his speech was quite slurred and several times I have noticed him staring into space. When I move my hands in front of his eyes, he doesn't respond. However, if we say his name, he responds, although it is quite slow. He did eat some pudding and also a smushed banana this morning, so I was able to give him some of his meds.
Hospice called about 9:00 last night and said they didn't have anybody for crisis care today. Luckily, I was able to get ahold of the daughter of one of the crisis care nurses, who we used one day last week, and she was able to come today. She's studying to be a physical therapist and we really liked her when she was here before. She's strong and also very nice. She played dominoes with Paul for a couple of hours when she was here before, which he really enjoyed.
I've decided that when crisis care ends, I will probably start hiring some home health people instead of relying completely on volunteers. We haven't tried getting Paul up for several days because he's just too weak, and the care now involves things like rolling him to change position every 2 hours, changing diapers and dirty linens, pulling him up toward the head of the bed, etc.
Those are things that I still can't do by myself, or even with just Mom, because we're just not strong enough. I think Paul's good friends are glad to help with those things, but I suspect that most of the people from church aren't really very comfortable with things like changing diapers, etc. I think also that Paul normally wouldn't be comfortable having anyone but me or close friends and family (or someone like a nurse or nurse's aide) doing that.
I think we have crisis care yet tonight and tomorrow, but I suspect that will be about the end for this round. We have had several good people who Hospice hired from agencies (they do that when they don't have enough nurses available), and those people have said that if crisis care ends, we can hire them privately through the agencies.
Paul's vitals this morning were:
blood pressure 140/80
temp 99 axillary
The nurse said his lungs sounded ok.
Continue to: Mar. 28, 1999
Return to: Diary of a Brain Tumor Patient's Wife
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Created: June 14, 1999
Last updated: July 21, 2010