My dad's given up.
My dad's given up. He hasn't been in pain in some time, and he was doing PT and OT and talking about trying to get some kind of recovery going from that bout of awfulness. He's so scarred by that, though, that anything at all throws him completely into a terrible anxiety depression thing. And he gets into these irrational behaviors that are hard to deal with.
He got some kind of a sinus thing and he started getting fevers. We won't know if it was just sinuses or not, because coincidentally this was the same time that they were doing the next round of testing to see how the cancer was doing, and it's worse. So the fevers could be sinus or cancer, or both. Thing is, he was refusing to take anything for the fever, so of course he felt awful. Then, one of the weekend nurses came in and he complained about how terrible the sinus pain was. Not that it wasn't bad, but it wasn't out of the range of normal bad sinus discomfort. Thing is, he convinced her to stop trying to get him to take tylenol for the fever and give him permission to take very strong pain meds. Which do nothing for a fever and were not appropriate for his level of pain. They certainly knocked him out, though. See, hospice is great, but they frequently have this baseline of, oh, it's a dying cancer patient, so we'll just treat them that way. This is great if someone is at that place, not if they are not.
When the hospice doctor saw him, he started treatment for a possible sinus infection, and said he should see his oncologist. My dad just doesn't want to do this anymore. I think he thinks that even if he doesn't feel badly, it won't matter, because he'll just be an invalid who's too weak to do anything for himself. Which would be why my mother had to tell him to turn the lights on and off himself if that's what he wanted. Because the depression and anxiety are making him feel worse and do less, and as my mother said to him, the less you do when you can do it, the less you're going to be able to do. He also just decided to stop certain meds himself (he's on very few now, but he doesn't like taking any), and it took the doctor and both my mom and me to get him to understand why stopping arbitrarily might be contributing to making him feel worse, in spite of any side effects from the medicine.
I think my dad thought he'd get really sick and die like his brother did, within a few months, and it'd be over. Unfortunately, it's far more likely he would have died if he had had full on traditional chemo, because they knew it would have caused fatal complications for him. That's why they went with experimental chemo, which did not make him sick. That, and it was sort of a be miserable for 3-6 months and die, or be ok, mostly, for 3-6 months and die. Personally, I'd probably have gone for the be ok and die, rather than be miserable and die, too.
He hasn't died. He's dying, but he hasn't died. He's almost made it 1 year from the diagnosis, and the you have 3-6 months. But he's given up and now he's just sitting around waiting to die.
No one can do anything about the reasons for the depression, the sense of loss of control, and the mental and emotional misery he's feeling. If he lets people, often something can be done about physical comfort. He did finally agree to talk to someone, and my mom asked for the list of counselors who work with people dying from cancer. Now we just have to get them to send us the list (they're busy, so you have to keep reminding them, but this is super important right now).
Obviously, I am finding all of this very difficult.
He got some kind of a sinus thing and he started getting fevers. We won't know if it was just sinuses or not, because coincidentally this was the same time that they were doing the next round of testing to see how the cancer was doing, and it's worse. So the fevers could be sinus or cancer, or both. Thing is, he was refusing to take anything for the fever, so of course he felt awful. Then, one of the weekend nurses came in and he complained about how terrible the sinus pain was. Not that it wasn't bad, but it wasn't out of the range of normal bad sinus discomfort. Thing is, he convinced her to stop trying to get him to take tylenol for the fever and give him permission to take very strong pain meds. Which do nothing for a fever and were not appropriate for his level of pain. They certainly knocked him out, though. See, hospice is great, but they frequently have this baseline of, oh, it's a dying cancer patient, so we'll just treat them that way. This is great if someone is at that place, not if they are not.
When the hospice doctor saw him, he started treatment for a possible sinus infection, and said he should see his oncologist. My dad just doesn't want to do this anymore. I think he thinks that even if he doesn't feel badly, it won't matter, because he'll just be an invalid who's too weak to do anything for himself. Which would be why my mother had to tell him to turn the lights on and off himself if that's what he wanted. Because the depression and anxiety are making him feel worse and do less, and as my mother said to him, the less you do when you can do it, the less you're going to be able to do. He also just decided to stop certain meds himself (he's on very few now, but he doesn't like taking any), and it took the doctor and both my mom and me to get him to understand why stopping arbitrarily might be contributing to making him feel worse, in spite of any side effects from the medicine.
I think my dad thought he'd get really sick and die like his brother did, within a few months, and it'd be over. Unfortunately, it's far more likely he would have died if he had had full on traditional chemo, because they knew it would have caused fatal complications for him. That's why they went with experimental chemo, which did not make him sick. That, and it was sort of a be miserable for 3-6 months and die, or be ok, mostly, for 3-6 months and die. Personally, I'd probably have gone for the be ok and die, rather than be miserable and die, too.
He hasn't died. He's dying, but he hasn't died. He's almost made it 1 year from the diagnosis, and the you have 3-6 months. But he's given up and now he's just sitting around waiting to die.
No one can do anything about the reasons for the depression, the sense of loss of control, and the mental and emotional misery he's feeling. If he lets people, often something can be done about physical comfort. He did finally agree to talk to someone, and my mom asked for the list of counselors who work with people dying from cancer. Now we just have to get them to send us the list (they're busy, so you have to keep reminding them, but this is super important right now).
Obviously, I am finding all of this very difficult.
What can I say? Nothing works. Hugs.
ReplyDeleteF-L Silver The slow debilitative declines are the absolute worst, and I have had to deal with them way too many times. So sorry for everyone involved.
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