In the interest of sharing enough to be useful to anyone else who might someday be in my position, I’m going to give a little bit more of a health and lifestyle update on my dad.
Before we went into the hospital this last time (December 22), my dad was doing okay… He typically has a lot of upper neck and back pain that he categorizes as a dull consistent level 3 (on a scale from 1-10). We’d been using oxygen primarily during the day if his oxygen levels dipped below 90, and I’d been struggling to get him to eat and drink enough. But overall, he was able to move around and function on his own, and his pain was mostly managed with a regular dosage of acetaminophen (Tylenol). Oh, and the biggest thing–I’ve been successfully draining my dad’s chest catheter every night. I don’t even get woozy or anything. We usually get between 500 mL and 1 L, with the occasional day where we stop at 300 mL due to pain.
On that Friday, we got signed up with hospice, which meant our other therapy services ended. Our hospice nurse instructed us to try using oxygen essentially 24/7 and start on a small, regular dose of oxycodone for the back pain. Sunday, we started on that regimen, and my dad was very, very out of it. He ended up on the toilet, completely unable to stand or move without major assistance. We called our nurses, but they didn’t help much because no one was able to come to our area that day. My dad’s friend, Gene, came over and got my dad into his bed, but later on, my dad and I decided we should go to the ER. Being too weak to stand, my dad opted to call 911 to take him there, which was a bizarre experience all around. But once we got there, my dad was put on a bi-pap machine that helped get the excess CO2 out of his system, and they gave him lots of fluids (thank god). It’s been decided that oxydocone isn’t a good medication for my dad because it slows down breathing, and that’s pretty much exactly what we want to avoid.
I already mentioned that we left the hospital on Christmas eve and came home. The next couple days went pretty well. My dad’s feet swelling had gone down while he was in the hospital, and his energy level and appetite was better than I’d seen it in weeks. I was actually really surprised, and I started kind of wondering whether being on hospice was the best option. (Of course, don’t even get me started about the logistics of how we had to officially go off hospice to be in the hospital, then sign back up two days after we got home…)
But, following with the usual pattern, the good days didn’t last too long. Yesterday morning, I woke up and found my mom (who’s visiting this week) on the phone with the nurse and my dad in a lot of pain. Apparently, this was a new kind of pain, one located more in his lower chest on the left (and later the right) side. My mom had given him some of the morphine from the comfort kit in our fridge after being advised by the hospice nurse, and they were deciding about giving him another dose.
The whole day was tough for him, alternating between pain and super-sleepiness and constipation. We did our best, but hydration and nutrition were lost causes. By the end of the day, things seemed a bit better, but this morning the same problem reared its head again.
Essentially, it’s a day-by-day process. I go to sleep each night completely unsure what will meet me when I wake up. Sometimes I think we might have another year of this. Sometimes it seems like we may only have a few weeks. Starting to use the morphine feels like a big deal to me. It feels more real, more immediate… More like cancer.
Somehow I think I always assumed this would be a progressive decline, as if each day would be either the same or slightly worse than the last. But obviously that isn’t how it works, and the unpredictability is definitely one of the hardest parts. Unfortunately, no one can tell us what’s coming, and no one can tell us how long we have. I guess that’s all the more reason to embrace the good days when we have them.
On a related note, there’s no way I can get any other job right now, which is disappointing, but not completely unexpected. I also can’t make any commitments in stone–a very hard thing for me. I love planning, and I seriously value my word. If I say I can do something or be there, I will. So right now, I can’t make any promises. I can’t say anything for sure. It’s a test in patience, but it’s also testing a lot of what I used to value. It’s certainly the hardest test I’ve ever taken.