Diary of a Brain Tumor Patient's Wife

Mar. 6, 1999

Renette Davis

Paul went into the hospital yesterday, but he came home the same day. He is retaining a lot of fluids, and is having some difficulty breathing. On Thursday the Hospice nurse said the doctor wanted Paul to go to the Hospice unit at the hospital to try to reduce some of the fluids. I told Paul it was up to him whether he went in or not. The last time he went to the hospital, he didn't like it at all, and we went home the next morning. I told him I wouldn't make him go this time if he didn't want to.

We didn't make any decision on Thursday and the day just kind of passed. On Friday, the nurse said again that the doctor really wanted Paul to go into the hospital. I asked her what would be the probable results if he didn't go, and she said he might die sooner. I asked if it would likely be a painful death, and she said not painful, but it could be very difficult. He might feel like he's drowning or suffocating.

I explained to Paul what the nurse said, and told him the decision was his whether to go to the hospital. He said he wanted me to decide, and I told him that if I made the decision, we would go to the hospital because I didn't want to see him have a difficult death. He said again that he wanted me to decide, so I said we would go. He seemed fine with the idea at the time.

However, after he was at the hospital awhile, he started getting upset about being there. As the day went on, he got more and more upset. The doctor wasn't going to see him until this morning, so basically they weren't doing anything for him that we weren't doing at home. They didn't even bring him food or water or medicine. Luckily I had packed a sandwich for each of us since it was about lunch time when we left for the hospital, and had taken all of his medicine with me.

At one point late in the afternoon, Paul tried to get up by himself and fell. Several nurses came in to help him up and he was very agitated. He was yelling and belligerent and afterwards the nurse said they were going to have to restrain him. I said I didn't want him restrained, and the nurse said that this was an incident that they had to write up and which called for restraint. I said again I didn't want him restrained and that I would stay in the room with him. (I had gone downstairs to get something to eat with Karen when it happened.)

After everyone left the room, he said he wanted to go home. He said "I'm dying. I know it. I want to go home." I said ok and when the nurse came back in I said we wanted to go home. She said the doctor might not allow it and I said to tell him that I'm insisting that we go home. She tried to convince me that we should stay, and I told her that I knew the risk we were taking by going home and I was willing to accept that risk. I just felt like I should abide by Paul's wishes and he wanted to be at home. If he had said in the first place that he didn't want to go to the hospital, we would not have been there, but I had made the decision to go and now he wasn't happy with that decision, so I thought we needed to go home.

So they checked us out, and even let us take Paul home in the car. They helped me get him into the car and a neighbor helped get him from the car to the house when we got home. Our minister came and stayed with us until Paul's brother, sister, and parents got here. I can't move him by myself from the bed to the chair, etc. anymore and my Mom is not strong enough to help me. He slept well last night and is having a good day today.

We're trying to restrict his intake of liquids. When he's thirsty, we're letting him drink, but we're giving him a small glass and not leaving liquids by his side for him to drink all the time like we used to do. His speech and his strength seem to be worse today, but he has been able to work a puzzle and visit some with his family. Philip and Karen both came to see him while he was in the hospital, and Karen came and had dinner with us tonight.

His brother, sister, and parents are going home after lunch tomorrow, so our choir director has said she will arrange for some church people to come and help me with Paul tomorrow. Paul's friend from work has offered to come and sleep here tomorrow night if I don't get someone else, so I'll have help if I need it in the middle of the night. Then on Monday, I'm going to try to make arrangements for around-the-clock home health.

Continue to: Mar. 8, 1999

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