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.
My dad signed onto a hospice program today, which is designed for people who have a short prognosis of 6 months or less. Technically, people go on and off hospice, so it’s not like you have to die in six months to qualify. But, there is something bizarre about having that strange assumed deadline. The good thing about hospice is that it focuses on comfort, which means less appointments, less newness, and hopefully for me, less pressure. I think one of the hardest things about the nurses who were visiting the last few weeks was that every time they offered suggestions or told us what we ought to be doing, I felt guilty. I felt like I just wasn’t doing enough. I still feel that way, on some level, and I have a sickening feeling that it will always be there no matter what I do. But at least with hospice, the ultimate goal seems to match a little more with what my dad’s capable of.
That’s of course where it gets a little complicated, though. Because I want to say that the goals match with my dad’s goals, but that may not be 100% true. My dad still wants to prolong his life (understandably), and I don’t think he’d categorize his primary goal as comfort. If someone told him he could suffer a bit more for a few weeks but then he’d live longer, he’d jump at the chance. The problem is that no one is saying that.
The doctors aren’t recommending chemotherapy or a heart surgery, and so far we’ve yet to hear any other treatment options that might be viable. Personally, I can’t see any treatment being useful until we can figure out this massive swallowing issue. (Or, if he’d agree to a feeding tube, which has yet to happen.) But, I think my dad is in a slightly more optimistic place as far as that goes. Which we could say is a good thing, mostly.
However, in realistic terms, I’m having a hard time seeing my dad actually living out the goals he claims to have. It’s like he says he wants to fight, but he still resists doing the exercises recommended for him, and it’s still a huge battle to get him to even attempt to eat or drink more. And don’t even get me started about weaning himself off of whiskey.
It’s like those people who say they want to be artists or runners or better cooks or what have you, and yet they never actually do it. They live under the premise that they have these goals, but they don’t practice their art. They don’t take a class to learn the skill. They don’t work at it, even when there are all sorts of ways to make tiny steps of progress.
Granted, getting healthy is a lot harder and a lot different than learning to cook. But I know my dad. And I know that old habits die hard. I don’t think it’s possible to do what he wants to do, and I don’t know what exactly to do about that.
But I guess for now, hospice is a step in the right direction.
So I’ve got this friend who has a chronic condition that makes his bones very easily breakable, and as a result, his mom has always been completely overprotective and paranoid. He often accredits his anxiety to her constant nagging and overwhelming fear for his safety. For the first time in my life, I relate to her.
My dad has become like a delicate child. Or, worse, he’s become like a stubborn delicate child who is actually an adult who used to tell me what to do. Except now, here I am, trying to convince him that he needs to eat, drink water, practice his breathing using the Incentive Spirometer, check his oxygen level, take his medication… Etc.
And I have realized just how terrifying it is to have someone in your care who could die with a few wrong moves. If I don’t pay attention, if I don’t check in on him, if I’m not bugging him to do those things, how long would it take for him to slip away? I’m going to be honest; it wouldn’t take very long. And that is scarier than I can even really explain.
The worst part is that he doesn’t understand (or won’t fully acknowledge) just how much these things matter–just how delicate his situation is. So, it all ends up being me nagging and trying to be suggestive instead of forceful while also ensuring that it actually happens… I can’t say I’m very good at it yet. I’m working on it. But when I’m on pins and needles at all times, being compassionate and understanding doesn’t naturally accompany necessity.
If anyone has any experience caregiving or dealing with difficult people with health issues, I’d love to hear your advice. I am hoping it’s kind of like being a new parent, where at first you’re terrified that your baby will stop breathing halfway through the night, but gradually you gain confidence and are able to live more normally.
But then again, I also know that my dad isn’t really getting better. So I guess it’s a bit harder than that.
So, instead of posting directly on Facebook or texting everyone, I think this is the most fitting place to explain about the shift my life is about to take. I still feel a little odd talking so personally and directly about my family and my life online, but taking a page from St. Gertrude’s book (see my previous post), I figure that being open and honest can’t really hurt.
I’ve alluded to this throughout my blog so far, but here goes. My dad was recently diagnosed with stage 4 lung cancer, and his prognosis is approximately 6 months to 1-2 years (I mean, who knows, but that’s what statistics say). He just retired this summer and moved from Alaska down to the Seattle area, and that’s when his body finally caught up to him. He and my mom got divorced a couple years ago, and so he is living on his own in a rental house. The rest of his family lives in Texas and northern California.
I say all this to give background for my decision to leave the Monastery of St. Gertrude’s and move back to Seattle to live with and help my dad. I will probably be back near Seattle in early December, assuming I figure out a ride around that time.
It’s obviously a difficult situation. I love it here. I am going to miss the sisters a lot, and I feel pretty stinking guilty to be leaving the program before even the half-way mark. But, all the same, don’t go fretting that I’m making a huge sacrifice or something, please. I know perfectly well the reasons I’m going back, and I know they are good ones. It doesn’t make it easy, but I think it makes it worth it.
I haven’t really spent much time with my dad in the last four years–okay, maybe eight years–because I’ve been focused on school, friends, growing up, and all the stuff that normal teenage and young adults focus on. And I don’t regret that, but it’s become a fact that time is running out. if I want to have an adult relationship with my dad, it’s now or never. Literally.
it’s going to be very hard. I go back and forth between trying not to be a debbie-downer about it while also being realistic. Even now, I know it is definitely going to be the hardest thing I have ever done, and very possibly the hardest thing I ever will do. I’ll basically be helping my dad prepare for death, including sorting through all of his stuff, trying to make sure everything’s in order… (Okay, see, I don’t even know what has to happen! But I suppose it’s time to start learning.) And also hopefully making what time he has left as useful and comfortable as possible. But I just keep thinking of how some of the sisters here still have living parents, and I think about how this is just not supposed to be something you deal with when you’re twenty something. But, then, people do it, don’t they? And they come out stronger people on the other side.
Anyway, that’s what’s going on. So, when I suddenly text you to see if you’re free to hang out in December, maybe you won’t be as surprised.
I’m not sure why it’s so hard to declare changes in your diet. It seems like everyone starts questioning why and how long you’ve been doing it, and suddenly it becomes almost a judgment. I shouldn’t be afraid to make this decision if that’s what I want to do–and I also shouldn’t be ashamed to tell people about it.
I think it’s possible that it’s just me and my general desire to keep personal decisions private, so I’m a bit more uncomfortable with the whole process of discussing my health or eating habits with others. And unfortunately being with my family makes that even harder. Not because I think they’d necessarily judge me, but because they are very much meat eaters, and I feel it’d be asking a lot of them to accommodate something that I’ve just recently decided to pursue.
So, in other words, I’m not a vegetarian yet. Is it weird that I’m procrastinating on this?