Jan 24, 2012 - 2:11 pm
I just wanted to let you all know that Dad is no longer suffering. He passed away on January 12th.
(I will go ahead and say I have to type this somewhere. It has been a really hard year, and you may not want to read as I recount the last weeks and hours.)
I had posted that we had to move to hospice care after a really hectic out-of-town Thanksgiving hospital episode. I feel like at the time it was deemed Temodar was no longer effective, I had already noticed a subtle decline. He also had a poor reaction to the Zelboraf in November, I think in part due to how advanced his brain tumors had become. The tumors affecting his heart rhythm, the meds also also affecting the rhythm. The continued effects of the steroids, etc. The infection. The seizure(s). All the medications got complicated, and were still just were not effective for him.
Hospice helped a lot, but we still had a lot of stressful problems helping dad through December. Eventually we had to check him into the Palliative care unit at the hospital because he had gotten very combative and confused, and from there to the nursing home while we figured out what to do. He was such a big guy, I couldn't move him or help him up, and he couldn't remember that he didn't have the stamina or even blood pressure to support himself and would fall. I felt pretty helpless.
We finally made arrangements on a Friday to safely bring him home early the next week. We had some minor crisis at home and had to delay til that Wednesday. We would readmit him to hospice, have more helpers, etc. He had lost the ability to speak clearly, but I could tell he could hear and understand me. He was so excited his favorite team (U of Alabama) had won the championship against LSU. He cracked a tiny half smile. I told him he was coming home the next day and all his "granddogs" were waiting on his bed. He smiled a tiny subtle smile again. I could plainly see I was not going to have to worry about him "sneaking" out of his bed and falling anymore.
I packed some of his things that day, and the next morning came to get the rest. He looked pitiful and really uncomfortable for the first time since he ad that chest tube in April 2011. I was so glad we were able to get him somewhere familiar and hopefully relaxing. He was coming home in the ambulance later. I was surprised, but not upset, that he had to go on an oxygen machine. We had used one a lot during the spring after his lung collapsed (from biopsy) and in the summer after his blood clots in both lungs, so it didn't really phase me.
He knew he'd made it and we could tell he was happy, but also in pain. I played a favorite collection of Wagner, brought the dogs to see him (those are our kids), and was able to give him water. He was vaguely responsive. The admitting nurse said she had seen many patients like him "perk up" and have a few weeks. I knew transport must have been tiresome and he needed some good rest, though the timeline seemed off to me. That night it was rough, breathing wise, it got really labored and rapid and congested. The oxygen machine was turned up from 2 to 4 liters. It malfunctioned and then was ok, but the guy was out at 1 am to replace it. It didn't seem to help. I told the nurse over the phone it reminded me of my cat's breathing the night before she died, and it was unnerving. He was not responsive, except I could tell him to swallow and he would. But not much else. The on call nurse came to help me around 2am. (She lived about an hour away.) His HR climbed up into the 160s and his breathing rate was about 36/ minute, despite the ativan and morphine. We got him "relaxed" as much as possible his breathing rate had gotten less intense, chest no longer heaving. I finally got in bed at 4:30 and was up on the hour for medicine. She called to check in a few times, and shortly before 8, I went in and he was gone. It was so surreal.
I felt so relived and so sad and so exhausted. I still do.
Thanks for all the help everyone offered to me and answering questions and letting me vent. I still worry about you who are dealing with this, but I am also relieved that so many have had much better responses to their treatment, mostly because you had at least found it before it was so advanced. I hope you all remain active participants in your healthcare and enjoy the hell out of life.