Diary of a Brain Tumor Patient's Wife

Mar. 17, 1999

Renette Davis

Paul had a very good night last night. He went to sleep about 9:30, woke up about 11:30 for cough syrup and other medicine, and then slept all the way through til 6:00 this morning. They started him on Risperdal yesterday (1/2 of a 1 mg. tablet twice/day) and maybe that helped.

The previous night had been pretty rough. He woke up at about 2:30 and had a very hard time settling back down. He wanted to get up, and managed to scoot down to the end of the bed, which is where the gap in the side rails is. Sometimes if we just let him sit up on the edge of the bed awhile, it's enough of a change that he'll lay back down.

The Hospice crisis care nurse was here, so we helped him sit up, but then he kind of pushed us out of the way, tried to get up, and slid off the bed onto the floor. The hospital bed was right at the foot of the stairs, and he managed to crawl/scoot to the bottom of the stairs. He tried to pull himself up on the stair railing, but wasn't strong enough to do so.

I told him that we weren't going to help him go upstairs because it was just too dangerous, and he finally wore himself out trying to get up himself. I lowered him to the floor, put a pillow under his head and a blanket over him. Then I moved the cushions that I had been sleeping on over right beside him and laid down with him.

He slept on and off then til morning. I didn't sleep at all. I really thought he wasn't going to live through the night. He was saying a lot of goodby type things and refused his oxygen. His breathing slowed way down several times, and even stopped for a little while once. But then about 6:00 in the morning, he woke up and said "What's for breakfast?"

The crisis care nurse didn't think we could get him up off the floor, so we called the fire department non-emergency number and they came and got him up. When the Hospice nurse called in the morning, I told her what had happened, and she talked to the doctor and he ordered the Risperdal.

We have since re-arranged the furniture so the bed is not right in front of the stairs. We thought maybe if Paul didn't see the stairs all the time, he wouldn't be so obsessed about going up. That also put him closer to the window, so he can look out when he's laying down. It also put him closer to where I have been sleeping, so if he wakes up during the night, I can touch him and say "I'm right here."

This morning, Paul's legs completely gave out when we were transferring him to the wheelchair, and he slipped to the floor. There were 2 of us trying to hold him, one of whom was a crisis care nurse so she knew what she was doing, but we couldn't hold him up. We did manage to get him up off the floor and into his comfortable chair by first sitting him up, then raising him part way to some cushions, then to the chair.

Just now, we were able to transfer him from the chair back to the bed for a little rest. I guess I'll go take a rest too. Later - I did have a nice rest. We still have crisis care today and tonight, but I suspect that will be the end of it. It has been wonderful while it lasted. I was even able to get out a little bit this morning while a friend and the crisis care nurse were here.

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Created: June 12, 1999
Last updated: July 21, 2010