I have to remind myself that this is where I am, and this is what I am doing. I am at Grandmother's house, and I am (probably) watching her die. It feels weird to write that, or think that, because, in all honesty, what I am doing is checking my Google Reader for the 1000th time, or blowing things up in a Facebook game, or doing the laundry again, but those things are all part of the larger thing, the filling in time thing. The escaping because it's been three days and all she's eaten is 1/2 a peach and 1/4 of a piece of banana bread. The putting out of your mind that she's been asleep/out of it completely since early Friday morning, and now it is Sunday night and you are listening to her snore from the other room. That "I am deliberately not looking at the bottom right hand corner of my screen to see how long it's been since she's had anything to drink" time needs filling, and thank god for the internet.
Right now, we're in post-crisis, what-the-hell-is-going-to-happen-now mode. On Thursday night, Grandmother ate two helpings of potato salad, and went to bed. Three hours later, she was writhing in pain, a pain in her gut that she couldn't pinpoint, but also couldn't tolerate. After a few more hours of trying in vain to fix it somehow!, I finally convinced her that we should call the hospice people, and the nurse set out from his home, over an hour away: told us which drugs to fish out of her 'comfort kit' and how much to give, and then came to check her out. The drugs did a pretty good job of ending her pain, within an hour, she was resting calmly, sleeping soundly.
That pain: it could be anything, they say. Gas, constipation, just a kink along the way. But they don't think that - you can see that in their faces. "Things could be shutting down", our regular nurse (who is, of course on vacation now, but came in the day before she left to check on Grandmother) gently informs us: "Our job is just to make sure she's as comfortable as possible."
Which feels right, keep her comfortable; but also feels wrong - does that mean keep her drugged? We stopped the pain meds yesterday morning, almost 48 hours ago, because she seemed ok without them: no more moaning or grabbing her abdomen in pain, doubling over. She seemed much improved. But her anxiety level went through the roof, for some reason: she couldn't stop scratching, or flipping from one end of the bed to the other, or yelling at hallucinations of people who were daring to smoke in her room. So we keep giving her the anti-anxiety/delusion meds, because when she gets upset, her breathing, her pulse, her oxygen levels, all of those go crazy (and trying to get her to wear the oxygen is ridiculous when she's like that).
She gets the meds, half of the prescribed dose, really, every 6-8 hours: we've tried twice not to give them, but the result is an hour of her totally freaking out before we give it to her and then an hour afterwards of more freaking out as she starts to wind down.
I can tell Uncle Jack is freaking out - because she was 'fine' (fine for her, fine for her this summer, these past few weeks) just a few days ago, and now she's not eating or drinking, or talking to us with any coherency: did the meds do this? Did we make things worse by trying to help her? The docs say no, that this is what happens sometimes - whatever caused that pain, it's moved beyond that now.
But there's no knowing, and we are both bad with that, with the anxiety that we could be screwing this up so completely. I see Uncle Jack attempting to wake her up again, see if she'll take some Ensure, some Jello, some, something. But she opens her eyes but doesn't really see us, starts talking about getting to graduation and where is her cap?
The hospice people say "you can't do anything wrong, at this point: everything you're doing is the best you can do" but the hospice people are people who know all their patients are dying.
They know about 'making the patient comfortable' and 'keeping the patient calm,' but what do they know about 'my grandmother, who ate 7 meals on Wednesday now won't even take some sips of water'?
Everything we do feels wrong - give her the meds, like the doctor ordered keep her calm, but non-responsive/don't give her the meds to wake her up, watch as her oxygen level falls below 82%, she starts yelling at invisible people and she still won't eat a single thing.
We're trying for the lesser of two evils, I suppose. We're trying.
But there's no right answers here, no cheat sheet: we just want her not to be hurting. We think we've accomplished that, because she's slept through the last three days pretty completely.
We want her to be herself, but can't seem to accomplish that.
We want her to bounce back, for this to be just another example of a time the doctors were wrong about who she is and how strong she fights.
But I want her to be at peace, too, and I know how afraid she is of the forgetting things, how much emotional turmoil she lives through when she thinks about her boys being lost, being little and alone without her.
And, in all honestly, it doesn't matter at all what we want: we just do what we/they/all of us think is best, cross our fingers, and hope it works out.
Only I don't know what to hope for here, and that's a harsh feeling to live with.
So sometimes, sitting here doing the TV Guide crossword puzzle and frowning over the fact that Uncle Jack and I both forgot to eat lunch today, I hear her snort, or see her sit up and reposition herself, and I think: How is it possible that I am sitting here, doing this?
What am I doing exactly?
I'm doing a lot of hand holding and whispering reassuring words, of coaxing her awake, or humming her quietly to sleep*. There's sitting with your hand under her head for the 35 minutes until she's totally asleep, so that your whole arm is asleep and numb as well, and you have to dig it out with your other hand. There's changing her, and the sheets, after an accident, and realizing it's so not a big deal (except for the lifting: god help me, I can't lift her, and I don't know why I keep trying - core muscles are so mad at me, and the fibro flare is ridiculous!). There's letting her sit on your lap when she attempts to get to the bathroom, but runs out of energy along the way, knowing full well that an accident could happen, and not caring in the slightest. There's a lot of sitting around and waiting, measuring meds, looking at the clock, listening for any sounds of alertness or agitation or... anything.
Right now, she's still snoring. And I'm still avoiding the clock, keeping my fingers crossed that when the 6 hour med mark is crossed, this time she'll be ok, and she won't need that next dose. She'll ask for corn on the cob, and we'll give it to her, fresh-picked yesterday morning, from the farmer's market.
Until then, I guess I just wait.
*When the kids were babies I made the each a "quiet music" CD (No-Longer-Youngest Nephew is old enough that his was a cassette tape) that we listened to when it was nap time. Lil Girl's CD has been running through my mind on repeat all weekend, so Grandmother has been treated to some weird versions of "Hushabye Mountain", "Two Sleepy People" and "When She Loved Me".