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|Paul M. (54), diagnosed with gbm on December 21, 2000; lost his battle on May 29, 2002; written by his wife, Mary, who says that when other people would say, "Why did this have to happen to Paul?," Paul would respond, "Why not me?"
Paul had a bad seizure and actually stopped breathing in the emergency room. They put him on Bi-Pap oxygen, which he responded to, and he was released from the hospital 5 days later. It was at this time, though, that Paul's oncologist told me he felt Paul had only 1-4 weeks left to live, so we signed up with hospice at the end of the month. We stayed with hospice from that time until Paul's passing on May 29, 2002. (See? Don't ever believe a doctor when he or she tells you there are only weeks or months remaining. They don't always know!) The hospice nurse would come to our house once a week, order all of Paul's prescriptions, and take his vital signs. So, from August 2001 to May 2002, we were with hospice, but were still getting Paul out of the house for occasional dinners out, movies, etc.
end of March 2002
We noticed Paul's right side getting weaker (all along he had been paralyzed on the left). Our two sons could no longer safely transfer him from bed to wheelchair, wheelchair to couch, etc. We began utilizing the Hoyer lift which hospice had provided to get Paul into his wheelchair.
Paul began having bad headaches every day for a period of about 3 weeks. He lost interest in reading the newspaper (something that he enjoyed doing every day). We had just celebrated our 30th wedding anniversary on April 8th, and in all honesty, that was the last good day I remember Paul having. After that day, he preferred staying in bed, watching TV, listening to audio books. For months and months, he was an avid watcher of CNN (especially after September 11th), and he could not miss seeing even one golf tournament on TV. Around this time, Paul began to have more and more accidents with the urinal (or jug, as he called it). He would either fall asleep with it between his legs, midjudge where he was putting it, or would somehow spill it on himself. He could never really tell us what had happened. So sometime around now, we began to use Texas catheters (which slip on, condom-style, to collect urine).
beginning of May
Paul lost interest in watching TV (both CNN and golf). It was like he lost interest in things that were happening in this world. Now all he wanted to do was listen to audio books, so we were constantly going to the library to get him new ones. His appetite, which was always good, was still good; however, he had been on 32 mg of Decadron per day since his hospitalization in August. Also, at this time, Paul did not want to get out of bed, even for short periods of time, so most of his meals were served in bed. His vital signs remained stable and within normal ranges.
around May 22
About a week before he passed, Paul had a couple of bowel movements in his diaper and did not even realize he had soiled himself. Up until then, he was very conscious of asking for a bedpan. Also around this time, I woke up in the middle of the night (about 3:00 a.m.) to hear him talking out loud. At first, I thought he was dreaming and talking in his sleep, but after thinking about it, I do not now think that was the case. First of all, in the 30 years we had been married, Paul had never talked in his sleep. Secondly, he was talking so clearly in his pre-tumor voice (no stuttering, no slurring of words). It was an eerie feeling, listening to him speak so normally. Since I was still groggy from being awoken, I don't recall what he was saying, but I know the gist of the "one-way conversation." It sounded like he was receiving instructions from someone and was agreeing to comply with whatever those instructions were.
Paul woke up with a very bad headache. Dilaudid was given every 4 hours to control the pain. Paul's mother came over to visit in the afternoon, and Paul, she, and I conversed for about 45 minutes before she left. Paul ate every bit of his dinner (hamburger, pasta salad, baked beans, and ice cream).
Paul woke up vomiting. Every bit of his dinner from 6:00 p.m. the night before came up (a lot of it not digested). I gave him Compazine to try to help with the nausea and vomiting. All I could get him to eat this day were 2 cups of beef bouillon, water, and ginger ale. His blood pressure readings were around 160/120, which indicated to his hospice nurse that he was in pain, so we switched from Dilaudid to Roxanol (morphine). His temperature was still normal; however, his breathing was getting very loud and labored. We had been keeping Paul on oxygen for weeks by this point and of course continued to keep him on it. Paul's brother and wife came over to visit at about 8:00 p.m., but Paul was mainly sleeping while they visited, although he was aware that they were here.
Paul awoke, said he slept well, but still did not feel like eating or drinking anything. I emptied his catheter bag, which contained only a small amount of dark (almost tea-colored) urine. I took his blood pressure and could not believe the reading (77/52), but his pulse was at 134! His hospice nurse came at around 9:00 a.m. and basically got the same blood pressure reading and pulse rate that I did. His temperature was still normal (97.7 degrees). His breathing sounded louder and more wet than the day before. We put on a scopolamine patch to help with that. The hospice nurse told me and our boys that it could go either way (either Paul was very near the end or, once again, he could pull out of the downward curve).
I took Paul's temperature again. It was now 103.4 degrees! We began to apply cool cloths to bring the temperature down.
I took Paul's blood pressure, but the machine would not give me a reading at all! However, Paul was still awake and able to communicate (yes/no) verbally. He began to vomit up a blackish/brownish substance (either bile or blood---am not sure which). I called hospice, and they wanted to put him on crisis care (24-hour nurses) at 8:00 p.m. that night. Our oldest son, Andrew, felt a need to get out of the house and asked if he could go for a walk. I told him to go ahead.
Our younger son, Tom, and I were at Paul's bedside. Paul asked, "Where is Andrew?" Tom told Paul, "Dad, Andrew went for a walk, but he should be back any minute." Right at that instant, Paul, who could not move his right arm off the bed in days, slowly raised his arm all the way over his head, and with wide eyes staring at the ceiling, began opening and closing his fingers, like he was reaching way up for someone's hand. I kept asking him, "Honey, what are you reaching for?" but he either couldn't or wouldn't tell me. The arm very slowly came down to rest on the bed again. I was still able to give Paul his 4:00 p.m. medications: 2 Neurontin and 1 Xanax (crushed up in a spoon with a little water). I had to syringe the medicine into his mouth.
Andrew came home from his walk. Andrew, Tom, and I were right next to Paul's bed, giving him words of love and comfort, touching his arm, holding his hand.
Paul's breathing became very accelerated. We timed the breaths at 34 per minute. Paul could no longer respond to us verbally (yes/no) but could still squeeze my hand. He was still awake and conscious with his eyes open.
Paul's breathing slowed down dramatically. However, it was at about this time that I heard the "fish out of water" breathing, a sound I will never forget (sounded like a fish flopping on a pier).
Paul began taking only 3-5 breaths per minute.
Paul closed his eyes and took his last breath, a long and slow one, and then stopped breathing. His mouth remained open in an elongated "O" and then he was no longer with us.
What really surprised us about Paul's passing were several things. First, when it started happening (the vital signs going crazy), how fast it all went. Second was the fact that Paul never had a seizure this time (he had had seizures in several other crisis times). Also, Paul was pretty much conscious right up to the end (never went into the brain tumor coma). I was still giving him his medicine right up to the time he died, no weaning of Decadron, etc. (Paul was still taking the 32 mg/day, all of his antiseizure meds, and the host of numerous other medications he was on.)
We had Paul's memorial Mass said last Saturday, June 15th, and it was beautiful. Andrew performed the eulogy and it was the most moving tribute to his father. I was so proud of him because I know how difficult it must have been for Andrew to retain his composure as he spoke so lovingly of his father. June 15th also happened to be Andrew's 25th birthday, no small coincidence!
I really do hope this long, long narrative of our last couple months/days with Paul is able to help some of you who are still struggling with this beast.
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