February 7, 2002
Dad came home from Bay Special Care, having been there since his 65th birthday, December 27, 2001. He was able to walk a short distance with the help of a hemi-walker. Dad was off most of his previous meds, even his dex and blood pressure meds. He was taking only his Depakote for seizures, a med for his stomach, and his thyroid med (his thyroid was destroyed as an effect of radiation to a larynx cancer he had in 1998, unrelated to the brain tumor).

February 8-11, 2002
We began to notice small but definite changes in Dad's day-to-day living. His left side became weaker and weaker. Around the 10th, he could not be trusted to walk by himself to the kitchen, bathroom, den, or bedroom. After a fall in the bathroom one day, we decided that one of us had to help him whenever he had to get anywhere. His appetite began to lessen. He began to become more and more confused as to time, place, and events. One day at lunch, while eating a grilled cheese sandwich (one of his favorites), he stopped, looked puzzled, and asked us what it was he was eating. We were perplexed at this question, and we looked at each other and told him. Swallowing became an issue again, especially with thin liquids. He would cough and cough after drinking some ginger ale.

February 12-14, 2002
For Valentine's Day, Dad wanted to get Mom this Teleflora Whitman's Sampler bouquet...so guess who did the ordering for him? Dad kept at me and made sure I ordered it and made sure when it was coming. He then bugged me day after day to make sure it was ordered and when was it coming. He did it secretly, but Mom knew something was going on. It was kinda cute in a way...Dad asking, "About that thing we talked about...is everything going OK?" I kept reassuring him everything was fine. You should have seen his face beaming when the flowers arrived. That was the last thing he ever got my mom...sorry, getting a bit teary here.

February 15-19, 2002
This week showed even more deficits. Dad was beginning to have problems with his bowels. It became difficult to get him to the bathroom in time before he had an accident, so we started using the bedside commode. It was embarrassing to him and to us. Also, his mobility became even worse, so we got a wheelchair rental from the local American Cancer Society office, until a prescription was filled for a permanent one. I had a meltdown one day when Mom asked me to return the wheelchair rental and get the car washed. I felt like all the work was being foisted on me, and I was getting tired. I had to take a timeout for a few hours to cool down, and I was fine again and ready for more. Dad's sleeping became longer and longer by the day. He sometimes would get up, eat breakfast (or what little he did eat, which wasn't much by this time), go into the den to listen to his radio show, fall asleep during the show, get woken up for lunch, back to the den couch for a nap (all afternoon by this time), back out to dinner...and an hour or so after dinner, to bed. He was sleeping a total of about 20 hours per day by this time. He also began to show signs of detaching from us and became less and less interested in what was happening around him. TV shows that he used to love became boring to him and he'd fall asleep. At bedtime, it was a struggle to get him undressed, into his PJ's, and into bed...a real struggle. Mom and I had to practically wrestle him into bed. I was tired, and my back ached. Mom was tired as well. We decided it was time for a hospital bed. Dad resisted this idea a lot at first...but after thinking about it for a day or so, and seeing the struggles we were going through, thought that it was best. I called hospice and had them do an evaluation, and a hospital bed was in the house the same day. Dad cried when we talked about hospice. He didn't want to go to an inpatient facility. We agreed this would not happen and we would keep him at home. He relaxed and his quality of life shot up into the clouds when he was all snug in the hospital bed. Meals were much simpler (we also got a bedside table), and a bedpan solved the bowel problems. We never used a diaper on him. His skin was sensitive, and I just didn't want him sitting in excrement for any length of time. He could pretty much tell us when he had to use the bedpan, so it was not a big deal to us. Cleanup became easy after we got a system down: hot wet washcloths worked very well, and we used Gold Bond powder. Bedsores were never a problem. We also decided that all meds except for seizure control would be discontinued. I thought it best, since my dad was in the active dying process now. The nurse concurred and was astounded at my sensitivity, professionalism, and insight. She said she wished more people were like me. Nursing...here we come! Also, we spent a lot of quality time with Dad, kissing him (and him us, which he hadn't done to me in a very long time), telling each other of our love, where he was going, who he was going to see, etc. He was ready and felt comfortable when we told him he would see his dad again (his dad died in 1988; his mother is still alive and kicking at 90). We discussed the Lord and what he could expect. He knew somehow that he would be OK, and he knew Mom would be OK since I was home.

February 20-28, 2002
Dad began to sleep more and more. He would call out people's names in his sleep, so Mom got those people to come over and see him. He'd brighten when they came, and then fall back asleep. I would watch him at night, and he would be talking softly to people in his sleep...doing intricate things with his hands...like he was working on a car engine (he was into that and many other hobbies) and various other things. It was fascinating. I believe he may have been reliving his past, and I also believe he was working out conflicts and the like during these long sleeping patterns. He never had a frown on his face...always a slight smile while doing these things. By this time also, we began giving him Roxanol (morphine) drops on a pretty regular basis at hospice's suggestion, to prevent any pain from happening. Dad began to eat less and less. One day, he ate some chicken prepared his favorite way, and the next, he didn't want anything. He had more and more problems swallowing, and water and other liquids were very difficult for him. He would sound like he was going to drown. Finally, the decision was made that he would no longer drink any liquids. It was a hard decision. I just didn't want him to drown. I know it was the right decision in the long run. His breathing became more rattly, so scopolamine patches were used. This helped some, but not a lot. A morphine pump was inserted when he could no longer swallow liquids. We also contacted the funeral home of choice this week and got his arrangements mostly done from home. We still had to see the casket in person and finalize the obituary. Dad was pretty much unaware of this, and I was glad. It would have been too difficult for him to witness this. On the night of the 28th, we got Dad on oxygen, because we could see him having more and more difficulty in getting air. The hospice nurse told us this would not hasten or slow the progression of the illness. The rattling became very loud at times, and it was unnerving. His mouth was so dry...we used the moisturizer a lot and the swabbies to clean his mouth. We believe he was waiting for his youngest brother to return from vacation in Florida. He got there the night of the 28th and spoke a couple of words to him, and then not much later, lapsed into a coma. A Foley catheter was inserted a few days before, and his urine first became very dark, then it became very light, almost clear, on the last days. Dad was off all meds now except for his Roxanol drops, and on the afternoon of the 28th, he had a seizure. We had Ativan rectal gel on hand, so I administered it, and the seizure activity was gone in a matter of a couple of minutes. The nurse then began to administer the gel on a regular schedule until the last day.

March 1, 2002
The morning brought increased rattling sounds. His bathing aide came, and his brothers came to watch over him while his sister and Mom and I went to finish the final arrangements. When we returned, the nurse told us this would be the day that Dad would go home. We were shocked and saddened and asked why she thought that. Well, there are signs...and she explained them to us---mottling of the extremities, urine output ceasing, inability to be aroused from the coma, and the most surprising sign: the earlobes flattening against the face. She told us this always happened, in all her years of nursing and hospice career. It was a real good sign that the person would not last longer than another 24-36 hours. Dad's rattling became much more pronounced this morning. In the afternoon, his breathing became more and more shallow...almost like a panting. We decided it best to start calling loved ones, relatives, and friends over. The evening brought yet another change in his breathing...a very short panting, "fish out of water" breathing. The hospice nurse was called, and she came back and spent the remainder of the time from then until he passed away with us, comforting us. Around 9 p.m., all that were in the house except for the nurse came into the room and we all held hands and prayed the 23rd Psalm, led by me...the Lord's Prayer led by my aunt. It was peaceful and still. My mom's friend, a hospice volunteer, suggested we all leave the room, in case Dad wanted to leave us without anyone in the room. Most left the house and a few of us congregated in the other room. About a half hour later, as my brother and I were talking, we heard a loud sigh. We ran into the room, and my dad was gone. Just like that. It was somehow sad and a relief at the same time. My brother cried out in a loud voice. My mom came running in as I was hugging my dad for the last time. My mom held him, and my dad somehow shuddered and then was still. The nurse said it was probably some sort of involuntary reaction, but I believe Dad was somehow telling her he was OK. The nurse pronounced him gone after listening with her stethoscope. The funeral home was called by her, and we began documenting the various meds that were left and disposed of the controlled substances. We had plenty of time to say our goodbyes, and we all remarked at how peaceful he looked, at how he had that slight smile on his face, as though he knew what was ahead.

Well, folks, this is basically how it went that last few weeks. It could be much different for you, but I am finding it is similar to others. I am hoping that this diary will help others who are and will be on the same path that my family has already taken.