Well, this weekend I changed my first diaper. Except instead of a little baby, I have a 150 pound woman who is in pain as I try to move her around.
She didn't eat almost anything the last twenty four hours. She complains of stomach pain, however I'm almost certain this is because she is not going pee. I don't know why she is resistant to peeing in the diaper, as I've told her time and again that she should pee in the diaper. She wants to get up and sit on the poo poo pot.
Brian, on Friday, lifted her up about four times to set her on the pot. He, in turn, got pee'd on four times. He didn't find it funny. I on the other hand have a bad back and simply can't pick up 150 pounds of dead weight. It was one thing when she had some leg control and could assist in standing, but now it's impossible for me. That, and she doesn't always go on the poo poo pot even when she's sitting on it.
I am going to call the nurse today and get more drugs and discuss a catheter. I DO NOT want to put a catheter in her, but the alternative doesn't seem to be working out.
I did get a bed-pan, but that didn't work. I had to roll her onto it and they she just laid on it and stared at me. Waste of time.
I've been unsure of how much to medicate her for pain. I should point out, that I realize she is dying and that it shouldn't matter if she's drugged up to high-heaven. I get that. However, her mental state while drugged up is very poor. She just sleeps, doesn't really eat, and I don't think she would really want to be just drugged up and out of it. One has to understand that the entire reason my Mom chose not to go forward with chemotherapy on her brain, besides the fact that it wouldn't cure her, was that she is very much against being overly medicated. For instance, she refused the steroids (Which are just pills) even though she was very ill and tired, because she felt that strongly. Only after I convinced her that we should try it, did she agree to take them. So she is not the sort of person who wants to be wasted on drugs in her last weeks. But obviously, if she's in real pain, she gets medication.
The question is REAL PAIN and what it is. When I see her, she complains that she has pain in her stomach. So I give her pills and morphine and whatever to mellow her out. I try to only use the morphine when I have to move her, such as when the aid comes to wash her. The rest of the time I have her taking Vicodin about every three hours now.
But, here's the thing...
So every night, about 3am-4am she wakes up. I think her pain mediation from the narcotics has worn off and she is less out of it. So she goes through this nightly adventure of trying to wake up. She pulls her self sideways so her legs are hanging off the bed. And then she tries to stand, but can't. She moans and groans and sputters and fights.
Now, the last week, I would get out of bed, go over to where she is at, and ask her what she is doing. I would give her some more pain medicine, and then try to put her back into bed, but she'd swing around and try to fight again.
So I'd stand there trying to convince her that getting up isn't going to happen, and that she should go pee in the diaper and go back to bed, etc.
Eventually I'd just go back to bed.
But last night, around 2:30am, I saw her struggling in the bed with the same level of effort, and I said to myself, "Fuck it. She can struggle until she passes out."
I would check on her every few minutes and she would just lay there with her legs out of the bed, gripping the handrail and the rest of her laying there as she moaned and groaned.
I figured one of two things would happen...
A) She'd fall out of bed, and be one foot from the ground. So I'd get up, come out, pick her up and that would be that.
B) She'd fall asleep.
So, I wake up four hours later to let the dogs out and start breakfast. (Yes, I'm getting four hours of sleep. Groovy!)
She is laying in bed watching TV. Has the blanked on her, not sitting sideways, and only one foot touching the floor.
Here's my point about this story...
From 2am to 7am she had NO pain medication in her, other than some Tylenol. So you would think with all the moaning and groaning, that at 7am she would be in crazy pain, clutching her side, screaming at me to give her some morphine to kill the pain. But nope, she's laying there watching TV perfectly fine. So what's the deal?
I have a couple assumptions I'm making.
1) Her back pain is mostly gone because the nerve to her legs is now dead. This is why she can't walk, but it also has removed her pain. She doesn't complain about her back now at all.
2) The stomach pain she is constantly complaining about is due to lack of going to the bathroom. She wet her diaper, finally, and then she's not in pain watching TV.
So is all the pain medicine unnecessary? I wouldn't go that far, but I am trying to find the balance of how much to give her. Brian is rather gracious and just gives her whatever to keep her mostly sedated. I'm not going to lecture him on it, if he just wants to quiet her mouth and let her sleep, that's on him. The aid told him he can give her whatever she needs. Though I don't think she's an expert either.
Well, I'm going to talk to the nurse about the catheter and see if that can bring her to a point where we don't need the morphine and can just get by on regular doses of vicodin only. Then see how the disease progresses.
I judge her progression based on her breathing. As one gets closer to the end, a few tell-tale signs happen. Her pee should become tea colored. Her breathing should become shallow and eventually labored. And she should no longer respond to conversation. None of which is going on. And her breathing is fine, she is just snoring away while sleeping. So I don't think we're that close yet. Of course, she could just die at any point from anything when we're talking about brain cancer. But as of now, I figure we're still two weeks out. I'm guessing a month.
Oh yeah, last thing. I have taken a leave of absence from Spill until this is settled. Playing games isn't the issue, it's the time necessary to sit on the microphone undisturbed. I figure it'll only be about a month. Since E3 and Spill.con are coming up, that should be fine anyway, there is plenty of content for the other guys to discuss, and I'll be more focused when this is over.