Sunday, August 26, 2012

Where am I right now? How is that possible?

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". 

Sunday, August 19, 2012

In Our Night Kitchen

I feel like when you're arguing with a person with dementia (and it just may be my person with dementia, I don't know) that you are arguing with all the people they ever were, only each is closer to the surface than ever:  When she's battling with me over food (again) because she can't remember the last time she ate (even though it was less than three hours ago), I can sort of see her in so many stages of her life:

She's like a newborn, who's crying because it is hungry, and doesn't know how to stop that feeling.  And like a two year old, who wants to eat something, but when you ask what, can only say "Food!" and shakes her head in derision at every option you offer.  And like a teenager who manages to notch the arrow most closely to your heart while being completely absurd at the same time: "You want me to starve because you want to get rid of me, don't you?"  And like a wife who has never lost an argument ("Well, you just have an answer for everything, don't you?");  and a mother who brooks no nonsense ("If I've told you once that I can't eat eggs because of my cholesterol, I must have told you a hundred times: why can't you remember that simple fact???"); and the completely independent human being she is used to being ("Well, I'll just make it myself then!"). 

Plus you get the added bonuses of the paranoia ("You're trying to drive me crazy by changing all the clocks and writing down food that I haven't eaten"), and the confusion that comes from not being able to hear half of the things you're saying, and creating the other half out of whole cloth (I suggest toast with jam and butter, she hears peanut butter and jelly, which she hates with a passion and goes on a rant about how I only offer her things she'd never eat), but those are just the extra fun-features.

And of course, none of that is helpful, because I can't get her to listen to reason (I have listed off every single item of food in the house; I have shown you the dishes from your last meal, which still haven't been washed; I have offered to order in anything her heart desires) or to just eat a goddamn banana or something.     But I'm sitting here, hoping that this time when she wakes up she'll be somehow more reasonable, trying to regain my patience before our next round (and seeing it as a fight isn't really going to help you regain your patience, now is it, NTE?), and trying to remember that she's acting like this because of her disease, not because she hates me (which is how she is looking at me) or because she's trying to be difficult (which is how it feels when she's got a comeback to everyDAMNthing I suggest), but because she can't help it.

Now if only she weren't the single most stubborn person in the universe before she got sick, that might be a little bit more manageable. 

Sunday, August 05, 2012

Hell Yeah

"Sometimes, the universe just aims for you and there’s nothing you can do except curl into a ball and keep breathing.  I don’t like that.  I do not like waiting for the next bus to come around the corner, I want to chase down the bus that hit me, drag the Universe out of the driver’s seat, and say, “Listen you sadistic prick, I have had it up to here with you using me for target practice, and if you come near me again, I’m going to slash your fucking tires and then come after your throat.  And my knife is swift, Sparky, so next time you get behind the wheel, avoid me like the black hole of rage and fear I have become.”
                                                                                                  Jenny Crusie, Bring It On

Wednesday, August 01, 2012

Another hellish day, but at least I have someone to talk to

 Earlier today, my uncle passed away from cancer - only the exact timing of it was a surprise, but it's still been... I don't even know, just horrible.  And my grandmother, who does not know, obviously knows something is up and is tantruming right and left, while my uncle, who's grieving the loss of his 5th brother in the past decade or so, has about zero patience left over for her, so ... it's been a challenge. The far away cousin I am closest to messaged me and said "Sending my love - hope you are all ok", and this well... this is what came out. 

Honestly, Two Shoes?  It's a goddamn mess here.

  Like, you know how I don't really curse, and all my truck driver-mouthed sisters make fun of me?  Well if they could hear the inside of my brain right now, they'd be so proud.  (And shocked, because I happen to have an extensive foreign vocabulary :) )

I don't really know anything, except that he had the last rites this morning, Katie called to see if Gmother or UJ would like to try to talk to him via the speaker phone, and gmother is in 1967 or somewhere, trying to find her "lost boys" so I just gave the phone to UJ and left him with some privacy.  He was going to try to drive down, but she called back less than 1/2 hour later and said he was gone.  She sounded... well: you and I both have intimate experience with how she sounded, and I just wanted to crawl through the phone and tell her .... I don't know what, except how much I'm so damn sorry.  And then we called the social worker, and the priest, who both said: don't tell grandmother, at least not today. 

Today was a bad day to begin with, and if we tried to tell her, well: we'd be the cruel monsters she sometimes thinks UJ is when he tells her any of the other true things about her boys.  We always go with the "they're safe, they're where they need to be" track that the hospice tells us to follow, but some days she knows that's not true, she knows so many of them are gone, but to her they are both gone and still little boys, and so she is not buying what we're selling, and maybe it's the phone constantly ringing or my face, or UJ's posture, but she ain't buying it today.  She knows something is off, and so down the wormhole we go, trying to anticipate what bomb will go off in her mind next.  Today the refrigerator was smoking, UJ had abandoned her, the lost boys purposely ran away because she isn't a part of this family anymore... just: she's not herself. 

And I promised myself that I would wait, and vent on you when your vacation was over, because ... well, VACATION. And I don't want to see her like this, and I hate having to tell other people that she's like this, because she'd be fucking pissed.  I mean: you know.  You know.

 So I figured, well, I'll just be avoid-ish and vague and hope that things get better (because I've been doing - shocker - a hell of a lot of research, and I think/hope I can figure out at least ways to make this a little less hellish for all of us) and by the time we talked next, it'd be calmer and less horrible, and Grandmother wouldn't curse at me or ask me to call 911 to find invisible children, but ... things keep going wrong, and here we are, and now she's lost a real boy, and I can't tell her, and my heart is just broken for all of us. 

It's a heart broken day, and they're not all like this: I promise.  Some days she's herself and I get to hear stories about how my father was told by some idiot down the street to stop climbing a tree in the park and came back with "It's not your tree, so mind your business."  and even though grandmother expects me to be shocked by that, and be on the adult's side, I think he was right, and secretly smile. 
Some days we spend all night emptying drawers and refilling them, looking for some small part of her life that she can't describe to me, but she knows is there somewhere... so we search.  That's one of the rare times I feel like I'm actually accomplishing something here: because UJ does not have the patience for those hours of searching, let me tell you, and I don't mind if we go through the drawer 19 times (has he never built with blocks and a 18 month old before: dump and fill, dump and fill)

And other days are like today, which is worse than normal because a)obviously, Uncle Kevin and b)during my research I found out that the meds the doc has given us for her anxiety might actually be making other symptoms worse, so we can't use it anymore.  So let's have the MOST ANXIOUS DAY EVER (for all three of us) and no calming down meds for grandmother, and neither uj or I can drink. (Send me special brownies ;) ~ we already stress ate 3 dozen cookies since yesterday morning.)  So, hence: I am sorry to ruin your vacation. 

But I can picture you reading this, and listening to me, and it does my heart good just to have it said (because I've been wanting to call, but honestly, getting on the phone in private here is harder than getting home to shower - and I haven't done that in over a week, so that shows that), to know that, even though it'll break your heart too (and I'm so damn sorry that I have to be the one to do that), I can feel you, loving us, from far away.  I'm going to take all those hugs, and send some back to you, and NOT erase the whole damn thing, because you're on vacation, even though I feel kind of like I should.  Cuz I love you, and I really appreciate the shoulder, and I need it a lot today. 

Hugs to your boys, I suppose I'll be seeing you soon, although ... i don't know how that's going to work because well... i haven't thought that far ahead yet.  But anyways... I love  you.  Thanks for listening .  Miss you much, Love, Me