Diary of a Brain Tumor Patient's Wife

Apr. 11, 1999

Renette Davis

I think most of you have been called about Paul's death already, but his brother, Ray, thought it would be good to write down some details about the day, not only for all of you but for me as well.

On Saturday, Paul's temperature stayed over 101 axillary all day. He wasn't able to eat anything until about 5:00 in the afternoon, when he ate some pudding with his medicine in. He had kind of a hard time settling down for the night, so I put some chairs by his bed and laid the couch cushions on top of them. (I have been sleeping on the floor on the couch cushions since that's more comfortable for my back than sleeping on the couch.)

I made his bed the same height as my makeshift bed, and put down the railing on that side of the bed so I could easily reach over and caress him. He was able to settle down and go to sleep, and I slept awhile that way. I woke up at some point and was pretty uncomfortable, so went back to my bed on the floor. He slept well all night.

I woke up about 5:30 Sunday morning and Paul felt hot, so I took his temperature. It was 101.2, so we gave him a Tylenol. He didn't really wake up through all of that. I went back to sleep, and when I woke up about 8:00, I called Hospice and asked them to send a nurse to see us. Before the nurse got here, Paul's temperature went up to 104.1 axillary. We gave him another tylenol and washed him with a cool washcloth.

When the nurse got here, she took his blood pressure, which was 80/palp (which is basically 80/zero). His pulse was 128 and his respiration was 28. His temperature was still very high - 103.9, and she said it was probably not an infection. I could tell by the look on her face that she felt it was an end-of-life symptom.

I talked to her privately in the kitchen and told her that the social worker had said we would have crisis care again if death appears imminent. I asked her if she was saying that death was imminent, and she said yes. She made a few calls to start crisis care, but she said they probably wouldn't be able to get anyone to start until Monday morning, and he may be gone by then.

She stayed around awhile because she was worried that Paul might have seizures with the high temperature. Then about 3:00, she got called out on another emergency. Paul was resting quietly and his temperature had gone down to 101.7. We had been washing him pretty much continuously all day with the cool washcloth. Mom suggested that I go take a little nap, and I was pretty tired by then, so I went upstairs to lie down.

After about half an hour, Mom woke me up and said that Paul had his eyes open and was breathing very heavy. I went downstairs and his breathing sounded very gurgly. He has been a lot more congested the last couple of days, and I remembered that the Hospice nurse had said Paul might feel like he was drowning or suffocating from the fluid.

That really scared me, so I decided to try to use the suctioning machine. They had brought it a couple of weeks ago when he was so congested. When they showed me how to use it, I thought I would never be able to do it. I guess, however, you somehow get the strength to do what you have to do, because I was able to use the machine.

I told him what I was going to do and said that I would stop if he didn't like it. When the nurse had showed me how to do it a couple of weeks ago, Paul had really fought it, biting on the thing that goes in the mouth. However, he didn't fight at all when I was doing it. I think he knew that I was trying to help him. I got quite a bit of gunk out of him, and his breathing sounded much better after that.

Then Mom started playing hymns on the piano and I sat by him and sang. Our minister, Ken, just happened to come by then, and Mom stopped playing the piano. I told her to go on and play some more because Paul seemed to be enjoying it. Ken and I both sat by Paul, and we sang a few more hymns.

Then all of a sudden I noticed that Paul wasn't breathing. I didn't think too much about it because he has had a lot of apnea lately. I've gotten into the habit of counting seconds whenever that happens, because one of the things they always ask me is how long the apnea is. It was about 17 seconds before he took a breath.

He stopped breathing again very soon after that. I didn't count, but it was probably about 20 seconds. At that time I started realizing that this wasn't the regular apnea he had been having. He took one more breath and then didn't take any more. I was watching his face the entire time, and there was no indication of any pain or struggling whatsover. The breaths that he took were just regular breaths, not gasping or anything.

I am so thankful that his death was peaceful. Mom was playing "Be Still my Soul" on the piano when he died. She turned around when the song was done and saw that I was crying. I told her that Paul wasn't breathing. She looked at him and knew right away that he had died. She started crying too and we hugged each other, and then she called Philip and Karen. They had slept here the previous night, but had gone back to the apartment for awhile. They were here within 5 minutes. We all had a good cry, and then I told them how peaceful Paul's death had been.

Paul's brother, Ray, and his wife, Sue, got here very soon after that. Ray led us in a little service of annointing Paul's body with oil and water, and that was very meaningful for all of us. I then called the funeral home and told them we wanted the body transported to the U of C hospital. Paul wanted his brain to go to research, and Dr. Nicholas had said they would want it there. I asked the funeral home to wait to come pick up the body until all the arrangements were made for taking it to the hospital. By the time everything was arranged, it was nearly 2 hours after he had died, so we had lots of time to get used to the idea, say "Goodby", etc.

Our good friends, Bob and Al and Barbara, got here before they took the body away, so they were also able to share in that time. When everything was arranged, the guy from the funeral home suggested that we might want to wait in the kitchen while they took the body out and put it in the van. But I decided I wanted to see the whole thing through, and the kids did too. It just seemed a natural part of the process.

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Created: June 19, 1999
Last updated: July 21, 2010