Yes, totally amazing: now give me my meds and shut the hell up.

What did I say I was going to talk about tonight? 

How about strep throat?  Was that it?  No: I didn't think so, and yet, there it is. 

I spent the whole week hoping that my throat was just raw because the music was So. Loud. at the wedding on Sunday (I am the old person you all hate - Why does the music have to be that LOUD???) so to talk to anybody, you were basically yelling.  All night long.  I just figured I'd strained my voice a little.

And that probably was some of it, but then when I went in for my shots on Wednesday and some man in the doctor's office coughed directly on me.  Like, right on my face.  And didn't even give me the courtesy of an "oops," let alone an "I'm sorry, I just gave you the plague, would you like a Kleenex?"

So when my throat was about a million times worse this morning, I gave in and called my primary care, who was, you guessed it! Out of the office for the day, but her on-call covering doc could see me at three, would that be okay?  Sure.  Whatever.  Fine.

They called three times between 10:00 this morning and noon to rearrange the appointment times, and I was ready to be like "Never mind: miraculously healed! Just stop calling and making me TALK - did I mention my throat hurts?!", but then they did stop calling, so I decided to suck it up and go.

Now, the only new symptom has been my throat - nothing else, no coughing or wheezing or sneezing or anything, so I just assumed the covering doc would look at the red rawness, stick one of those sticks down my throat, and write me a prescription for the strep throat antibiotic I obviously need.

Isn't it hilarious how I'm still optimistic (and stupid) after all these years of dealing with doctors?

No it was: Let's talk about why you're in the wheelchair (because it might somehow be relevant?), and What do you mean it hurts when I press on your neck and lymph nodes (they hurt all by themselves, lady: don't touch!) and Are you sure you had bronchitis a few weeks ago? (Well, maybe I had a brontosaurus a few weeks ago, but I'm pretty sure it was bronchitis.)  Literally, let's just retake your whole history, for a strep test.  And then?  Still not give you any antibiotics.

No, after hearing that I'd had bronchitis a couple of weeks ago, and three or four sinus infections this year, the on-call doc decided that I might just have another sinus infection, and gave me Flonase.  Which... doesn't treat sinus infections.  (Or, at the very least, doesn't treat MY sinus infections.)  Told me to gargle with salt water (which I've been doing, and I hate, and blech).  Or it could be allergies, although allergy season is mostly over....and I'm on no less than three allergy meds. Whatever.  Definitely helpful, thanks!

 And then she preceded to talk for fifteen minutes about how interesting POTS is and how she's never seen anybody with that, and isn't it amazing how many ways the body has to adapt to things?

Um... no? 

My body is MALadaptive, lady.  It is adapting poorly, not "amazingly."  And I don't care if you see patients like me every single day, or once every 3000 years, could you just stop chattering on and on and actually treat what I'm here for, so I can go home and be sick in my own damn bed?

It was frustrating, to say the least, and the thing that makes it worse is that if I had called yesterday, instead of waiting to see if it'd go away (like a dope), I could've called Zack's office, and the nurse there would've just sent my antibiotic rx right through... I kind of having a standing order.  But they're out of the office today, so I figured the primary care was my next best shot.

Turns out my next best shot would've been attending medical school myself, so I could write out the damn prescription and stick my own little swab down my throat.  Next time. 

  

Halfway through November

and I hit 25,000+ words.  I'm going to talk about it tomorrow, I hope but I'm still trying to recuperate from various things here, and focus on not whining a lot, like I kind of want to.  (Shots.  Which were fine, but now are acting like I was bitten by some exotic animal all of the sudden. Anyways.)  So, instead of listening to me whine, may I suggest, you take yourself of to a television set and settle in for some Parks & Recs awesomeness tonight?  Special Guest star, Leslie Knope's #1 crush, Joe Biden.  :)  It should be spectacular. 

Colbert, On Point, As Usual

Gif via Oh Whiskers.tumblr.com

Words, words everywhere

but none to spare for here.

Seriously beat tonight, guys.  Managed to get 5000 (! I'm up to 20,812!) words written for NaNo, but between recuperating from the wedding (which I have stories! and pictures!) and having our family over, and still being sick, not to mention the stupid additional side effects from my new drug, I'm just plum worn out.  So I'll try to remember to write here first tomorrow, so it'll be interesting and stuff. Night!

Fail

My latest drug trial was a big huge fail after one day on it, I had a killer migraine.  The second day, the migraine was better, but I still had a headache and now I had that pins and needles feeling in my arms and legs as if I'd fallen asleep on all four of my limbs at the same time.  But I didn't call Zach until the third day, as pre-arranged, because, if you've started enough drugs, you know sometimes, there's a hump you have to get over.  With the Lyrica, it was like living in Wonderland for the first few weeks.  Some of the other drugs have made me nauseous, others made me super tired (on top of my already exhausted state), one made my sense of taste disappear for a week, a couple of others have done really strange things: I'm almost never surprised.

Except, when I called Zack, he was surprised that I'd kept taking it.  "Why didn't you call me sooner - you don't have to put up with that?"  Um... obviously I do, what world is he living in?  "But it's good that you did, because that tells us something relevant"  To Zack, everything is relevant, even if he can't figure out how yet.  "Mmhmm."

So he called me back after consulting with a neurologist and this is what they come up with: the migraine and pins and needles (some sort of thesia) as a result of that specific drug show that my migraines in and of themselves could be playing a larger role in my whole pain syndrome issue than we've been assuming.  So, new treatment plan: botox for the migraines.  So he says to me, over the phone at like 5:30 on Friday afternoon.

Um, what?  You want me to get Botox for my migraines, which suck, granted, but ... we've figured have been pretty much under control, right?  Wrong.  "Maybe the tension in your neck and your jaw and your nausea are more migraine centered than we've been thinking, and this would help with that." Hmm... that's actually kind of sensible.

"At the very least, it will help with the migraines, give you fewer of those, and that'll be helpful."

Now, I'm starting to get behind this plan.

I have to do a little bit more research first - since a)needles in my b)face sounds c)horrible to me - but I could get behind this, even though I'm pretty sure it'd do nothing for most of my pain.  The fact is my headaches have been pretty deadly lately, so I'll take all the help I can get with them.  But this is just another example of how what you think you're dealing with when it comes to chronic illness is NO WHERE NEAR where you wind up.   

Heading to a big family shindig

tonight.  Doing my best to coast along on my meds as best I can.  Not working all that well, as having company is a bit of an additional (but awesome) strain.  I am so enjoying having heartfelt people in the house.  Not overly happy, not upset, just genuine people.  People I love and who love me, and who don't totally get it (seriously, Aunt Pam: stop with the patting!), but who try really hard and are on vacation and will stay up all night playing games and talking about whatever we feel like - heavy things and nothing things, and everything in between - and just breathing.  Of course, my dad is still here, and he's like this heaviness over everything, but I'm doing my best to ignore that as well.  I can tell it's a tad bit uncomfortable for them, but I'm not going to be able to just push everything aside and pretend all is fine and dandy, and I told them that.  So, we're grown ups, we're not all getting along, we can be civil, and we're working from there.  In the meantime, aside from that, and the fact that I feel like I'm being given electro-shock therapy (stupid new meds) AND being trampled by horses (just my regular fibro feelings), I'm having a perfectly lovely, agreeable visit.  They've gone off on a Fenway tour, which gives me a chance to get some breathing time in, and I'm giving myself a two day pass on the NaNo, which means a lot of catch-up come Tuesday, but less pressure today tomorrow (since I know my brain is going to be worth nothing after all the drugs I'm going to need to make it through this wedding tonight).  So, talk to you tomorrow, ladies and gents, hope your weekend is going smoothly too.  :) 

Trying hard

to keep this from becoming a daily NaNo record, but, you guys, I hit 15,000 words today, and that?  Rocks.  Because I did that in spite of the god damn bronchitis, and antibiotics x3, and my mom being sick as well, and two sleepovers, trying to get organized for company and trying to get ready for a big family wedding tomorrow.  Sure, some things fell by the wayside, but they'll be there when I get around to them (eventually). 

In the meantime, I'm going to give myself a big high five and take a deep breath, then put on my gorram bra because that company I mentioned before should be here in the next few minutes.  Bras are stupid. 

We won't talk about what happens to my plans

My words are running at a loss today, sorry.  Major league brain fog.  Every one of the 924 words I wrote for NaNo were hard fought, and I can't guarantee they were worth much this morning, but they're written.  I'm at about 12,300, which is a tad behind, but I'm going to power through, come next week.  (Right?)  At least that's the plan. 

Got a lot accomplished today

but I'm exhausted now. (Shocker!)  Today was the kind of day when I spent so long making lunch that I was too tired to eat it by the time it was ready.  So, I ate it for dinner.  Eventually.  And it wasn't any special, elaborate lunch either - just roasted vegetables - but between the chopping and peeling (not to mention getting everything else off the only area I can use can reach for chopping and peeling), I nearly had to lay down on the floor in the kitchen once I got them in the oven.   Plus?  Squash skin are like impossible to slice into - I felt like I needed a hatchet.  Or a hammer.

 It was obviously a low energy day, and a high energy activity.  (Probably not for other people, but definitely for me.) 

Aside from that, I did some cleaning in my room, got the floor in the library picked up since we'll be having company this weekend as a cousin is getting married on Sunday, and wrote more than 2000 words for NaNo today. 

So, if I could nap, it would definitely be time for that.  Instead, I'm going to watch Jeopardy! and hope that there are some good categories.  Night all!

Gobama!

(and deep breath out) 

Definitely not anxious

... but have the election results been posted yet? 

Seriously avoiding most media at this point (have checked the Twitter a few times), because I just can't handle it.  Either we're going Forward or we're going back to the (18)40's.  And, at this point, I can't do anything about it at all.  So, back to NaNo and boosting my word count (up near 8000 words, which is a little shy of where I should be, but still: rocks and kicks ass, so I don't care).  See you on the flip side, readers.   

As if I wasn't doing enough

I started a new med last night.  For pain (of course).  So far, all I'm feeling is that my pain is turned up a notch, but I'm hoping that that's a result of an overextended weekend, as opposed to a medicine that's supposed to help me.  Of course, this would not be the first (second, third, or hundredth) time that instead of making things better a new med decided to make things worse, so I'm also keeping an open mind.  Fingers crossed, mind open, and Zack on speed-dial.  That's the way I'm making it through this Monday, folks. 

One of these days they'll make it past midnight

Well, after all that build up, Lil Girl conked out on me just past 11:00, which, to be fair is two hours past her normal bed time.  She was totally revved until about 10:45, when we put in our third Disney movie (one thing about kids movies, is that they're generally shorter than regular movies).  She was nearly buzzing "Look how good I'm doing: I'm going to stay up till 1:00, for sure!"  She picked the movie, laid back down on the couch while I skipped over all the previews and just as Belle launched into "As long as there's Christmas"... I look over and she's snoring. 

Oh well.  I tucked her in and headed back to my bed, where I read through the night and cursed the fact that I've got Christmas songs stuck in my head already, and it's only the fourth of November. 

(And if you watch till about the three minute mark, so will you: sorry!) 

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Getting Ready

for Lil Girl to come over for a sleepover.  Very excited: I have no doubt that she'll make it past her brother's midnight mark from last weekend's Fright Fest - we didn't even make it through one scary movie: the kid wanted to watch The Hunger Games, then he zonked out on me five minutes into The Woman in Black, which - just: no.  I was too sad to watch a movie where kids kept dying.  Lil Girl is another story: I told her we could stay up "all night long", so I'm anticipating a looong night.  It'll be a nice change to have company during the wee hours, though.  (Company and Disney movies... all I need now is to make some brownies.)

Wrote my three pages for today (am a little off target, but so please with what I've written that I don't care about the numbers yet: ask me again on the 28th), getting the blog posted, trying to go into the sleepover with (what I have that passes for) energy & enthusiasim.  I miss her so much, and I'm wicked excited... but I also know somewhere around 9 o'clock, she's going to be wearing on my nerves and we're both going to need a nap.  :)  That's the fun of six year olds: all the energy of a three-year-old, with none of the naps.

See you in the morning ~ hope your Saturday night is as exciting as mine.  (I'm going to think of a name to call you all, but I'm coming up blank:  'the five of you', how's that sound?)

NaNoWriMo

so far, my novel is skewing towards the Young Adult side of the spectrum, which is leaving me with one major problem: Not only am I no longer a Young Adult (at least, not as far as publishing standards go), when I was, I didn't do anything that would be considered 'typical'.  I have no idea what "teenagers" did: I know I spent most of my time sleeping and visiting doctors offices.  Trudging my way through home tutoring and pretending that missing out on social events wasn't a huge deal. (Jr Prom vs. Star Wars marathon with your mom?  As much as I appreciated the effort, I probably still would have preferred the prom.) Busting my butt so I could graduate on time, even though nobody else thought I should even care about that.  Trying to get my family to realize that I was neither a)on drugs, b)pregnant, c)faking it or d) being overly dramatic. 

And so, somehow, I find myself writing (and researching) about a chronically ill teenager - one with more of a social life than I ever had (otherwise the book would be both boring "Today she slept for 18 hours" and too short to meet the 50,000 words), but with some of my experiences and emotions peppered in.  And I'm loving it. 

Even though I had 1330 words yesterday and today I only have 950.  But they're a good 950, and that's more important, right? 

Here we are in November again,

that time of year when your Google Reader explodes as all the lax bloggers (like me!) attempt to come up with blog fodder for their daily NaBloPoMo attempts.  I haven't decided yet whether or not I'm going to try for that, I just know that I don't want to miss out on my 6th year because I was so stuck in a funk I couldn't even try.  So, I figure I'll try.  Who knows?

The funk, though, man.  It's like Pigpen level, people.  Between the bronchitis and my complete inability to stand people, I have been a joy to be around, I assure you.  I got a ton of things accomplished this morning, however: rebooked a bunch of appointments I missed out on because of the germs that were trying to take over my body, labelled two hundred pictures, bought a couple more Christmas presents (leaving me with like, four people left, which is awesome, and necessary because we all know I will get sick 17 times between now and then, and that severely cuts into your shopping time). 

Started writing a novel. 

I'm sorry? What was that? 

Yeah: I signed up for NaNoWriMo, because I am, apparently, an idiot. No, in truth it's because there are apparently no limits to my ability to procrastinate doing things I really don't want to do, because instead of looking for housing again this morning (because it is so gorram frustrating and near to impossible), I signed myself up to write 50,000 words in the next thirty days.  I'm kind of a dope.  Not that I can't write 50,000 words in thirty days, it's the "having them all go together logically" part that gets me.  I've written a couple of (really bad, no, honestly terrible) novels already, but this will be my first time pressured one, so it'll be interesting to see how it comes out.  So far I have about 1000 words of description on three of the main characters.  I'm surprised I didn't start writing about their shoe sizes, to be honest... Now I've just got to get them to do something interesting.  

So I hope to write here, I hope to write there; I hope to be there more for the people who need me, and figure out how to better ask for the things I need; I hope to find some miraculous new way of affording (not just financially, but physically) my own place; I hope to figure out how to stop being so angry and sad all the time; I hope to dig my way out of this funk and through to the other side, however I can.  November, you've got a lot riding on you, so let's kick ass.

Good luck to all of my fabulous readers ~ may whatever you hope to do in November work out for all of you.  Fingers crossed.      

A little health catch-up

Got knocked out of commission by a wicked cold sometime around the middle of last week, and I've been struggling to reconnect with my brain since then.  (Fevers are not my friend.)  It seems like all bad news around here, which makes me not want to write anything because it's so depressing and all of you all have been so great and wonderful and supportive, but who wants to listen to a person complain forever?  Nobody.  Especially if it's not entertaining complaining.  Trust me: there was nothing entertaining about my cold, the sinus infection that followed it, or the fact that every drug I took seemed to make things worse - What the hell, steroids?  Why do you make my fibro flare?


Only thing I can say is that when College Roommate/Best Friend asked me if I would be Baby Olivia's godmother, I said I'd be there in the church 'unless I was in the hospital.'  Which is stupid, because OBVIOUSLY my body takes that as a challenge and is like "Oh really?  Let's see what we can do about that!"  I've got till Sunday to shake everything from the rapid heartbeat to the contagious germs (and, honestly, as long as I've lost the contagious germs, I'm going), so fingers crossed.  Could use a dose of teeny baby magic :)

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On what all the doctors I've seen in the past month (and as I've been cramming them in to make up for all the appointments I cancelled over the summer, that's been quite a few) consider to be the plus side, I've lost about thirty pounds since February.  I guess I should feel more positive about this, except I know that at least half of that is probably attributable to stress, as opposed to the better eating habits (almost no take-out, heart healthy-food, for the most part) I acquired at Grandmother's.  I can't help but feel that worrying yourself to the point of exhaustion, skipping meals (and therefore my meds), or eating three bowls of cereal a day actually aren't the  principles of a balanced diet, but the doctors are so happy I've lost weight that they don't want to hear about those sort of pesky details. 

Still, it has had some positive side-effects: My liver numbers went from somewhere in the 100s to less than fifty; my sugar numbers and Hemoglobin A1C are both at non-diabetes (even non-pre-diabetes) levels again; and I had to buy new bras because the old ones didn't fit.  (I have to buy other stuff too, but I'm poor and the bras are expensive and have to come first.)

  I'm finding the 'no take out' rule harder to handle here at home, where take out is the almost daily norm, plus I'm sick as a dog and can barely manage to eat what somebody puts in front of me most days, but I'm also cutting myself some slack on that because I am freaking exhausted right now and can only deal with so much.  I had a nutritionist appointment last week, and all she kept saying was "keep it up, keep it off."  And I wanted to say, maybe you should be more concerned with my actual health rather than just my weight? but it didn't seem like the right audience for that. Nutrition barely came up at all.  

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I also had an appointment with Zach a week ago, and he kind of shocked me by asking if I thought I needed an anti-depressant.  An anti-depressant is for depression, I thought: I'm not depressed, I'm sad.  I'm mired in (what I consider to be) the reasonable quagmire of grief that comes after losing someone you loved so immensely; I'm overwhelmed with confusion about what comes next after putting my own life (such as it was) on hold to care for someone else for almost 6 months and then watching her die; not to mention being almost swallowed up by toxic family drama and sludge.  "It's only been a month," I said: "It's too soon for me to start thinking about whether or not this could turn into depression."  He looked at me for a minute and then said "It's never too soon, because you have a history ~ I didn't think you needed one either, but I wanted to make sure you were being vigilant about monitoring your feelings - I needed to make sure that you were on alert."

As if I'm never not on alert.

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Promise to be back soon with something not-depressing, even if I have to make it up.  

Blueberry Pie & Twizzlers aren't much of a housewarming present, but it's all I"ve got

My sister and brother-in-law are moving out today, and I am not ok with that.  We've lived apart before and would have to again eventually, at some point anyways, so it's not that so much as how and when it's happening that is so heartbreaking.  It is, in all actuality, going to turn out to be a positive thing for her, for them: it's a thousand percent in their favor that they would move out of some place that is unhealthy & stressful for them, especially at time where they need things to be as stress free as possible.  I'm three thousand percent behind them, and will continue to try to find ways to make things as stress-free as I can, even if it means hounding my B-I-L for updates bc I know my sister doesn't like to be pestered (He doesn't mind). 

The problem is that I just can't seem to get past the fact that it's so stressful and unhealthy for them (and me) for No. Damn. Reason. Except that people feel like being assholes.  Well, one person in particular, really.  Who is so busy playing the victim in his own mind that he can't seem to grasp the fact that hurting other people is the reason no one wants to talk to him.  Because he's "being nice now."  Like any of us trust that.

----------- 

I have avoided talking to the two sisters who grew up with our parents but don't live here, mostly because, since they don't live here, I usually have to hear about a thousand excuses from them about how his behavior isn't really that bad and I should have some compassion for him.  And it's not even that I don't have compassion for him: it's that he's trampled it all, as well as pretty much every other feeling I have for him, consistently over a long period of time. 

The sisters who don't live here seem to forget a) how much they both hated living here when they did - so much so that one left for 'vacation' full well knowing she wasn't coming back but kept it a secret till she was there so she wouldn't have to tell him in person, and the other moved out as soon as she could manage it.  Three times;  and b) exactly how he behaves when you are in his life on a regular basis.  I suppose if you only have to see him at birthdays, barbecues and/or holidays, or listen to him complain that you never call him anymore once every 5 months or so, then he'd be a lot easier to take.  I don't doubt that that is true; I hope it proves true - for his sake as much as mine and SisterJ's.

 It's my opinion that he just can't give up feeling like he's supposed to be the boss, even though we're grown adults (not to mention that he wasn't really the boss in our family, he just thought he was because he was stricter).  And since he can't be the boss in the way that he thinks he should be - i.e. being able to dictate your 'attitude' or demand the respect he thinks he is 'owed' - he tries to bully people instead. 

And, for a long time, we've let him. 

That isn't to say one or the other of us - or a group of us - haven't stood up for ourselves at different points, or demanded changes in our relationships... it's just that when you stop being vigilant about your boundaries, certain people (maybe all people? I don't really know) will notice that you're no longer guarding things that 'do not cross' lines as closely as you once were and will begin to inch their way back over again. 

And I can't keep letting that happen.

So we've got to figure out a different way to interact with each other, and two things will need to happen (from my perspective) before I could even attempt that.  First, he'd have to take real responsibility for his actions - meaning he has to stop thinking it's ok, just because he's stressed out at work, or with other people, to take that out on somebody and start to make changes in his own behavior.  And second, I'd have to figure out how to let go of some of my own anger and figure out how change my behavior so that he can't cross those boundaries anymore: to just accept the fact that he doesn't have to be happy about it, I'm going to do what I need to do regardless. (This is more difficult than you'd imagine when you live in his house.  And are financially dependent upon him.)  

And since I can't make him do the things I think he needs to do, I'm focusing on that second part there.  I'm definitely not on-board with forgiving, just yet.  Don't know when I could possibly get on-board with that.  But trying to figure out how I can live away from here, how I can turn myself into one of the sisters who just sees him every couple of months and deals with that in a more healthy manner?  That's what I'm trying to work on right now.

And I know, eventually, it'll be what SisterJ works herself around to, too.  She's too big-hearted (even though she'd like to say she's heartless) to not want to figure it out: that's why she's so hurt right now, because she didn't do anything to screw it up in the first place, but it still blew up in her face.  So, yeah, I know her leaving is a good thing. 

A necessary thing. 

And, like I said, in the long run, I have no doubt they'll be much happier there... it's just I don't want to be so far away from her when I know she needs me, and it's not as easy for me as it is for other people to just 'pop' in on her at her new place.  (Obstacles, oh how I hate your ever living guts.  Chronic Illness-related Obstacles: goes double for you.) 

But it sucks donkey balls, and I can't help being pissed off at him for it.  He's just going to have to get over that.

Hi Again

I know it's been a couple of weeks ~ I'll claim the first two do to just complete exhaustion, and the last two because things are pretty fucked up here, and I'd hoped to come back and be able to say "Thank you so much for your kind thoughts" and then move on to happier things.  But I don't seem to have any happier things, right now.  Which is not just to say that I'm f'ed up (although I am): there's a whole bunch of family shit that's gone down that's beyond messed up, and somewhere between my grief and the situation and everybody else's grief and confusion and all of our individual issues, it feels like my family is basically coming apart at the seams.  Not that those stitches were all that tight two months ago, but they just sort of burst the week of my grandmother's funeral, and I'm at a complete loss as to how to pull them back together again. 

I don't even know where I am or what I'm doing,  at this point, besides making it through the next fucking minute without falling apart.  And I'm not always doing a bang up job on that, to be honest.  I'm back at our house, but it's not home - it really never was, only maybe I was better at pretending before I watched my grandmother die and realized that I need to do more than mark my time here.  I can't seem to talk to anybody without causing a secondhand fight, can't seem to get anybody to listen to me at all, can't seem to connect with the people who've offered to help, even when I want to (and I don't always want to: it seems like too much explaining, mostly).  I feel like exploding just about every minute of every day, or, I feel completely absent and numb - it's one or the other, seems like.  

My dad threw my sister and brother-in-law out of the house, the night before my grandmother's funeral.  Nobody told me what the hell was going on, because, I don't know they thought I would be too upset to notice that people weren't talking to each other?  I don't know.  So I got the lowlights third and fourth hand, then when I tried to talk to people, it was a disaster and didn't make anything any clearer for them or for me. 

My mom left my dad, then came back, but only because she didn't have anywhere else to go, and then, later, because she wouldn't leave my sister and brother-in-law in the house with just him.  This was all in the days immediately after we had just buried my grandmother, so I will admit that I did not have all cylinders going.  I mostly wanted (still want) to curl up in a ball and ignore everything, because it takes so much energy, and I am plum out. 

My dad says the stress of being targeted at work (and, yes, he is being targeted at work) made him snap and... a whole load of bullshit that basically means it's not his fault, but maybe yes, he might admit that he was wrong and 'an asshole' (What he won't cop to, is that this happens All The Damn Time, and nobody feels safe around him/trusts him anymore because he's a bully).  My sister & brother-in-law immediately started looking for a new place, because, hell: who wants to live like that?  They've been thrown out twice in the matter of a year for Doing. Nothing. Wrong.  And let's be clear - they didn't do shit, he just took it out on them.  I told my mother while I was still at Grandmother's house, that I didn't want to be here either... that I would be looking for a new place as soon as I could. {Of course, that was because I forgot that I couldn't place emotional well-being above money, health and other issues without there being major sacrifices of money and health and other things, but I'm still determined to do it}  My mother told him she was leaving too, although it would be better for everybody if HE just left.  He refused/refuses to leave.

So today my sister and brother-in-law are signing a lease for their new place, at the worst possible time for them bc my sister is trying to wean off her meds so that they can get pregnant, and she could really use some backup (which is just when you should be forced to move away from people who can back you up).  She's hurt and mad at my mom for her response to this whole ball of bullshit, which I can't seem to talk to either of them about, because their both freezing me out when it comes to that.  She might even be mad at me, and since she's the one who reads this blog I'm only going to say that I hope she's not, because I feel like I'm on her side, but if she is, I hope she'll tell me so I can try to fix it.

My dad and I had a whole discussion about how mad I am at him the other day, and how it's his fault that SisterJ & B-I-L are moving and that I'm looking for a place, and that Mom is probably looking for a place too, and when my mom asked him what he got out of it he told her that he "has a big heart but doesn't use it."  Which was said once, in the midst of a three hour discussion about how badly he is screwing things up and all the things he is ruining by his behavior, and how hard it's going to be once he realizes how badly he's damaged people he's supposed to care about and how I'm too old for this shit and I'm just not sticking around anymore to watch him bully people (or to be bullied) and how he's being completely selfish, but that's what we all expect him to be at this point, so that we don't even talk to him about our shit anymore and a huge rant about how he's a total hypocrite and totally ignores the people in our family and expects us to be there for him and how he never fucking listens ... anyways.  What he took out of all of that was me saying he had a big heart, which just proves my point about him never listening, and that I really need to get the hell out of here.

Mom and I have talked - or sort of talked - about what she's going to do: she says she's going and she's done, and all of that.  But I don't know: she still seems undecided to me, and I don't know how much of that is the fact that she's changing her meds, and she's still grieving for my grandmother, too, and she seems to be leaning waaay closer to the numb side of things than I am.  Of course, complicating all of that is the fact that she's my PCA, and she does a lot more for me than the hours the state provides for her, which is pretty simple when you're living in the same house, but a hell of a lot more complicated once I find somewhere else to live.

Which doesn't even mention that moving changes everything for me, financially - I have to notify the SSI people, and Mass Health (my insurance) and the PCA program, and everybody does a whole new evaluation and yippee: more energy I don't have.  Plus, I can't afford any place to actually live on what my SSI is currently, so I have to apply for housing stipends, which means that the already complicated task of finding accessible housing (and granted, I can use non-100%accessible bathrooms, which puts me a step above other househunters with disabilities) all that much more complicated, because now I have to look for accessible housing that takes waivers/stipends from the government.  It's so much fun so far!

But here's the thing, as every fucking thing seems to crumble around me (which you could tell only by the fact that I've cursed like five times in this post, when I usually don't ever), I learned a lot about myself this summer, being with Grandmother during those five months.  I learned that I can handle a lot more shit than I thought I could, even if I have to breakdown in tears when nobody is looking.  And even if I shouldn't have to handle any of this, because it's all ridiculous and I don't want to have to deal with it, because it's hard: even though it's ridiculous and hard and stressful and I Don't Want To, I'm going to be able to do it.   I'm going to drag myself and my family through it, and eventually we'll all come out the other side, having met the challenge.

Being a grown-up sure does suck, you guys.  

A tree that looks at God all day, And lifts her leafy arms to pray*

I started this post a week and half ago.  Here's what I wrote last Sunday, immediately after a moment of Grace ~

In the middle of transitioning her from her wheelchair to her bed after this morning's bathroom break, she suddenly stopped what we were doing, looked at me and said "Goodbye dear."  I wanted to hurry her along, get her safely in bed, so I started to joke, would normally joke "where are we going?" because lately she'll say just about anything at anytime, but something about her tone was different, so I looked up from what I was doing.  I looked right at her, and she was there.  She was in there, somehow, in the midst of enough drugs to be hot air balloon-high, she was lucid enough to offer me this.  "Have a good life", she told me, reaching for a kiss.  "And no matter what, no slander from you, no slander from me.  We'll just be happy for the life that we had these three months."  I swallowed back my tears and said "Yes ma'am. Never: I love you."  "And sometimes say a prayer for me."  "Always," I said.  It was all I could say, even if I could have managed more (and there was so much more I wanted to say: I have nothing but good things to say about you, forever.  I'm not going to let these last few months smear your memory, and I know in your heart you know how much I love you.  I'll miss you.  Don't go.) she had closed her eyes again, and you could see the cloud was back. 

Now this is not miraculous, you might say, but you would be wrong: for days, in the rare moments that she hasn't been completely knocked out, we've been talking about eating butterflies and dinner parties that happened in 1969; she's been (her version of) cursing out my Uncle and I for holding her prisoner here, when she just has to "go or I'll scream"; she's been in near coma-levels of sleep for the most part, waking only when her anxiety or pain levels break through what the meds can control.  She hasn't really been lucid in over a week, hasn't been aware like she was for those three minutes, in weeks to months, really.  So those three minutes?  More miraculous than any other I've been lucky enough to live through.   

Tiny miracles: I'll take them. 

Especially now ~

 My grandmother, a great lady, wonderful mother, open-hearted, strong-willed, surprisingly versatile woman, passed away on Saturday afternoon.  She had been having some trouble breathing earlier that afternoon, so I adjusted her oxygen, gave her her medicine, offered her a weak smile: "Don't give me that fake smile", she whispered in her all of the sudden raspy voice, "You look exhausted."  "So do you," I said "Get some rest."  And then she went to sleep and I laid down on the couch maybe 5 yards away. 

A half an hour later, my uncle went in the room and called out to me: "She's not breathing; I think she's gone."  Her hands were cold, but the rest of her was still warm, that's how recently she had passed.  Within a half an hour from the time I had been holding her hand, getting scolded, giving her a kiss.  She went quietly - I never heard even the tiniest gasp - a peaceful end after all these months of drama and unrest. 
 
 Thank you all for all your support these past months: I can't express just how much it means to me.   For listening to all the ranting about dementia and how much I hate it; about the pressure and the heartache and the loneliness.  I know it's been a dark blog as of late, because I had very little else to talk about, and I appreciate all of you who said even the smallest words of encouragement - I needed them more than I could say.

I don't really know what happens now: I'm feeling such a mixture of relief and sadness and numbness that I can barely get the simplest of tasks accomplished... I know that'll wear off as the days go on.  Her memorial is Thursday & the funeral on Friday, and I'm trying to get everything organized for all of that: it's good to have things to focus on... a project to complete.  I'm going to do that for now, and think about how lucky I have been to have her in my life, for as long as I did, even through these last hellish months.  To have held her hand right before she left this world, well, that's not something I'll ever forget. 

*Trees Joyce Kilmer: a line from Grandmother's favorite poem. 

I would be a horrible circus performer (although I am quite flexible)

I didn't realize that my being here would change so many things: I mean, when I first wormed my way into an invitation to stay on the couch, I obviously didn't realize that nearly five months later I'd still be here, unshowered and mid-flare, keeping constant watch on a woman so close to death.  I signed up for that, for the most part, because I had to: nobody seems to get that, really, that I feel compelled to be here, not just because I am capable of it (and, honestly, physically? I'm not capable, I'm just faking it the best I can), but because it's where I need to be.  I suppose I could have made a different choice, but every other option just felt worse than this one, so here I remain, camped out on a couch with a (probably permanent) me-shaped dent in it, edging the furniture over until it gives me just the right view of her on her sickbed. 

While I could not have predicted the ways that being here has altered my relationship with Grandmother - both negatively (particularly through her attacks during her dementia rants or just witnessing little character flaws that she'd previously kept hidden from me) and positively (there have been moments of extreme joy for both of us) - I'm more surprised by how being here has effected my relationships with the rest of my family, the rest of the world.

Example: I've got an aunt who lives less than an hour away, and who I generally have a good opinion of.  But her lack of visits (once every three weeks, maybe) and phone calls (I know Uncle Jack is a bear on the phone, but suck it up), especially since her mother's latest downturn in health bother me. What could be more important than this?  What enables you to go sit at a racetrack all day on your day off, as opposed to sitting by your mother's side?  Granted, Grandmother would probably have no clue who you are, and granted you have a right to your life outside of the fact that your mother is dying, but ... it still bothers me, and I know it's put space between us.

I try not to let it hurt me that people haven't come to see her, but sometimes I resent it a whole damn lot.  Cousins who send me messages about how much they care, but don't show up on the doorstep with a screwdriver and a willing hand when it's needed.  I'm conflicted about it because it seems wrong and hurtful and false, but also because.... I totally get it.

I keep hearing "I don't want to see her like that" or "I don't think I could handle it if she looked at me and didn't remember me", and I understand that desire so much.  I guess I'm jealous that they feel like they have the option to not come, whereas I feel like there's no choices to be made - she needs me, so I am here, even though it is one of the hardest things I will ever do.  To have her look at me, with that blank stare, or worse her evil stare, when she's pissed off about something, is an experience I would love to have opted out of; it's something I wish I could forget, and something which, no matter how many times I remind myself that it's not her but the dementia that's driving it, I know has put smudges on our relationship.  Deep, dark smudges I would give anything to erase. 

So I understand the sentiment, and I understand not being able to face what's going on here - but I'm still disappointed that so few people have turned up, that so many of us are able to just send their warm wishes, but not put any actual effort into it.  I'm jealous that they can do that, I'm confused at how they do that, and I am surprisingly more than a little hurt by how many of them can do it.  I think that's part of it: that I used to be so firmly a part of the "us" of cousins, and now I feel like there's this line, a "me" and a "them", because I've done this and been here, and none of them can truly understand.  They write their e-mails about how strong she is, and how much she's been through, but they don't know the half of it.  They say how they hope the end comes quickly and how she doesn't suffer, and I stuff the words back into my mouth: 'She's already suffering, she's been suffering for months, maybe years, and none of you have noticed!'

 It's not fair of me to think those things: I know that they are all doing what they can, and that they all do really love her: it's just that right now - living through the worry of each and every breath, each consistently lower pulse reading and oxygen level,  each english muffin I put in front of her that she doesn't eat, each 4 hour battle to get her to use the Depends because she's not strong enough to get out of bed - right now, everything they say seems like a platitude, a cliche, as disconnected from her and me and our actual situation as if they were talking about how many sheep there were at this year's state fair.

It's just another barrier between me and the people I love, and it somehow grew while I wasn't looking.

Which is another thing: I've been nearly myopically focused on our situation here.  I think that's understandable: death trumps pretty much everything.  But there's a lot of other things going on - a lot of other things - and I'm barely on the periphery of stuff that I normally would wade right into.  People are worried about losing their jobs, having their first panic attack, looking for new places to live, buying cars, getting fired, losing weight, gaining weight, dealing with depression, having birthdays, trying to embrace happiness after hardship, going back to school, moving across the country, ending longterm relationships, starting new relationships.  Two of my sisters have changed life directions and are actively trying to conceive - or are moving down the path towards having children. 

Two of my younger sisters.  Are trying to have babies right now.  Which is so exciting and awesome and terrifying, and also like an arrow straight into my chest.  Because there's that baby thing again, which I have been actively avoiding (with little luck) and just do not have the mental energy to deal with right now, but there it is, everywhere I look.  College Roommate/Best Friend had her third baby yesterday, after a difficult pregnancy.  One of the (young stupid intern) doctors who saw her in the Emergency Room wrote the words 'advanced maternal age' on her chart.  We are the same age, and while I know that 33 is not technically considered advanced maternal age, I know it's also not considered to be a time when you've got plenty of fertile years ahead of you.  So there are all my own issues with TTC, and then there's all of their issues with TTC (which are varied and complicated, as they seemingly always are) and how best to support them (because I do want to support them) through their own insecurities and doubts and troubles.  And how to do that effectively with the 5% of my brain that isn't focused on Grandmother and her medication schedules, stuck here in my little corner of the living room couch, while at the same time not letting the fact that I am not actively TTC be a gaping wound that grows between us.

Life is going on all around me - everywhere but in this house, in this time, in this space that I can't leave - and I don't know how to participate in any of it.  Everything else seems unreal to me, everything beyond this door, everything outside the range of the Darth Vadar sounds coming out of her oxygen machine seems as if it's happening to somebody else, like I'm watching it on television, maybe.  And it's interesting, and it's something I want to be involved with, but my brain just can't seem to make the leap from Here (and all that implies) to There (and all that implies).

There's a big gulf between me and the rest of the world - the part of the world that isn't changing their grandmother's diaper (and sheets - why don't those goddamn Depends do what they're supposed to do more than 1/4 of the time?) at three in the morning, or watching an old woman's chest to make sure it's still rising and falling - and I don't know how to bridge it.  Phone calls and text messages seem like communiques from far off lands - someone shows me a picture of a fancy new car, someone else just says hello, there's a Facebook message from a far-away cousin, a phone call from someone I didn't even know had my number - I want to grab onto those things as if they were life preservers, use them to help keep me afloat when I feel like there's so much here that it will drag me under.  And I can't decide if this is the Real World, or that is (even though I know they both are): I just know that they don't seem to exist within the same atmosphere, in the same time zones, on the same planet.

This disconnection is even harder when I do get a break, when I'm sitting face to face with someone, and there's all these awkward pauses, all these spaces and cracks in our conversation that there never used to be.  I feel like I am rusty at speaking to people, even those I talk to everyday: It's as if my conversational skills have deserted me in favor of the ability to withstand the tears of a ninety-five year old woman when you tell her she can no longer walk - and there's no ease to any of my relationships right now, no settled in feeling of comfort and compatablitly, even with those that I am the closest. 

Example: Mum will come over to help - most days she comes over to help - and make a misstep in her delivery - do something that pisses off Uncle Jack (which isn't hard) or say something to Grandmother that confuses her and sets off the panic train (which also isn't hard) and instead of relieved, I wind up feeling exhausted to be dealing with that, that now I not only have to deal with the repercussions of her visit, but also have to somehow not hurt her feelings while I'm repairing the damage she did by trying to help.  It's often awkward and uncomfortable (mostly because Uncle Jack is a stubborn ass sometimes and he's so set in his ways that even people doing nice things - like bringing over a boatload of food for us to eat - can make him angry) and I find myself having to hold back how upset I am by it in order to smooth it over on both sides, wishing the whole time that I didn't have to play referree to supposed grown-ups, that it would be nice if, once in a while, I could get some actual HELP, that was just help - no strings, no messes to clean up afterwards, no complications - just simple help. 

Most of the times I can't get up the energy to feel anything besides terrified that I am going to do something wrong here, that the last memory Grandmother will have is of a frustrated woman struggling not to yell at her to 'just pee already, goddamn it!' instead of a peaceful, loving face.  And I want that for her - for her to go knowing that We All love her so much, knowing that she has so many people praying* for her and thinking of her - and I'm horrified that I might not be able to provide it. 

*That's a whole 'nother area where my conflicted feelings are doing battle: she's very religious so we've had a bunch of priests come by, and she's had the last rites more than once, but I also think if the hospice people tell me that "all we can do now is pray" one more time I might punch them in the throat. 

When I do get beyond that feeling, I feel guilty for wishing this were over, guilty for seeing each peak and valley as just another obstacle for us to overcome -It's especially hard to know that when she does have a 'good day' or make a small improvement, instead of rejoicing for her that she's able to eat a half a turkey sandwich, there's a part of me that wishes it wasn't happening, because it's only prolonging something that is already so difficult for all of us.

I feel guilty for that, for wishing that there would just be an end to things, knowing what that means in reality.

I feel guilty for being here, when I'm needed elsewhere.  For missing out on the summer adventures the kids and I had planned,  for all the hand holding I haven't been around to provide, the two a.m. phone calls I couldn't answer.  I know the world doesn't revolve around me - that me not being at the house for sleepovers, for example, wasn't the end of the world or a crisis for the kids - but that's a two sided-coin: I'm glad that my absence didn't wreck everything for everybody, but at the same time I'm hurt by how (seemingly) easily I was removed.  Because it feels like I'm the only one who's upset by my missing out on other things - everybody else just goes about their days and sometimes remembers that, in the ordinary scheme of things, I'd probably be involved in this particular activity too, but it doesn't do more than blip on their radar before they're off for other things.

And how selfish of me is it to admit that that hurts?  That not being needed or missed in those other situations is hurting me as much as the fact that I'm missing them in the first place?  I obviously want it all at the same time - people who love and miss me, but make do when I'm not there; being needed and valued for what I feel I contribute, but being able to not contribute those things for a while and still be loved and valued. 

Basically, my brain is a big toxic mess right now, and I've got it all as far down as I can get it - so that it's simmering somewhere in the background for now, because I have only enough energy (and barely that) to make it through each day here, and the rest of that shit is going to have to wait its turn.  And there's a very large part of me that is anxious about what will happen when I'm done focusing on the immediate crisis - how I'm going to pick up all those simmering, boiling pieces of myself and glue them back together into something that resembles a human being - but for now, all I can focus on is converting Mgs to Mls (which is stupid: doctors should write the Rx in the dosage of those little droppers and not expect me to do math every time I've got to give her meds in the middle of the night) or if the sheets are too tight around her feet and could be causing bedsores.  I know that the end of that type of worry is fast approaching, and I see the train full of other worries barrelling down the track towards me (and know that it will be loaded with all of the things I'm talking about here PLUS a huge drowning dollop of grief once she passes), but I can't even pretend to deal with it yet.


 I'm just going to sit here and breathe, and hope that I'm doing what I can, and that any of the balls I'm not actively juggling will not be too damaged when I get around to picking them up.

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". 

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. 

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

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

I have a pill stuck in my throat, in that awkward way that happens every once in a while.  I sip from my water and realize I'm holding back tears... it isn't just a pill that's stuck there, but all of my feelings. 

I've just come from yet another late night heart to heart with the woman my grandmother sometimes has become.  This woman is sad: not just sad, but heartbroken, morose, devastated.  She has lost her children, and doesn't know why.  She's alone in a house she doesn't recognize with people who used to be her family and now feel "worse than strangers, because they're SUPPOSED to love me."  Her long-deceased siblings visit her often, but instead of comfort, they taunt her with their silences at the atrocities she's faced: she is sure someone has stolen her two little boys.  Not just stolen them, but given them away, without her having a say so, without so much as an explanation... and it's those supposed loved ones who allowed it - perhaps enabled it - to happen, and she can't forgive them for that. 

As one hour slips into two, we're still at a stalemate: I tell her that those of us who love her are out here in the dark searching for her with flashlights, unable to reach her, but continuously shining the light of our love in her direction, hoping against hope that she feels it, however briefly, and knows that she is safe.  "They aren't searching for me anymore," she responds, "They've all found other people to love, and I guess it's only natural that there would have to be a loser, but I'm not glad it's me."

I would do anything for you, I tell her.  All of us would.  "There is an empty doorbell that says you are lying," she tells me.  "An old TV I can't see that sits in the living room mocking me, stairs that I can't climb yet have no lift like I've asked for repeatedly, and my boys are gone.  All of that shows me more than the words you say." 

I can't argue with the last - the boys are missing, and no matter how I try to word it, to make her understand, it is always our fault that they are gone, if not by active trickery, then at the very least through passively allowing it to occur.  I can't even defend the defensible position - that the television isn't broken, it's her eyes - because she already knows the facts of that, but it doesn't matter.  As to the others, I can't help but agree: there is no reason that my uncle's aversion to the 'mess'' of the stair lift should outweigh her sense of dignity and ability to shower regularly, but it does.  (I know that part of his reluctance is due to his thinking that this is not a permanent state of health for my grandmother, or that the life would be just as dangerous to her as the stairs, but I'm not sure I agree.)  And the silent doorbell (/telephone) is a two sided coin - there are some who are close enough, yet do (in my mind) too little, and some who are too far away to do much.  Then there are others who want to help, but know that too many people - and at times 1 extra person is too many people - amps up her anxiety and backfires instead of helping.  So, it's complicated, but she can't understand that right now.

Right now, all she knows is that it's three o'clock in the morning, and she can't sleep.  Because she's never been "more alone in her life", even though I am sitting right there.  Even though I am always sitting right there. 

If I leave for the afternoon to take a shower, I leave 70-80% of my brain here, spinning about what might happen while I am gone, and who I will find when I come back.  If she's in a good way when I'm leaving, I hate to go because she might not be alert and focused when I return; if she's having a bad day, I hate to leave because sometimes I'm the only one who can get through to her.  When I come home I might find the lady I've always known, who asks me about the people I've seen while I was gone and seems glad to know that the shower helped my neck so much, or I could find the silent starer, who slides little digs in about how "I thought you'd forgotten I'd existed" because I've been AWOL for less than 10 hours. 

Back in college, I was going home every weekend out of sheer exhaustion - it was one of the concessions I might to my chronic illnesses, because the dorm would be too noisy, that I'd go home to sleep and shower every weekend, and come back on Sunday nights.   During my miserable freshman year, the year I was so depressed I nearly dropped out, when my roommate and I could not have been more poorly matched and my classes were overwhelming, and I couldn't figure out how you're supposed to make friends as an adult (still don't get this, btw), somewhere around Sunday afternoon, I would start to get a feeling in the pit of my stomach that would make me slightly nauseous.  It would build during the hours I spent getting ready to go back, and all of the stress I'd washed away in the shower would come crushing back down on me.  That anxiety, that sense of dread, was one of the worst feelings I've ever experienced - it was more than just 'back to work blues', it was utter despair some days - but I would face it and get on with my week, and my work, no matter that all I wanted to do was to give up, tell my mother to turn the car around and go home. 

I feel some of that same anxious dread so often now, and find myself wishing that I could just walk (RUN) away and let things happen as they will, without me.  Why do I have to be here, listening to her heartbreak, while she breaks my heart?  Why do I have to be the one she can spill out all her worries too, when I don't have any of the solutions she's looking for?  Why does no one else see that her feet need to be up, that her hearing aids aren't in, that she's mixed up and you're just confusing her more by giving her all those options?  How can I sit here and be both her "most trusted helper/the best nurse on this ward" and "obviously plotting against me, or at the very least not telling the whole truth"?  Why are all the people I need to support me actively making this harder? 

I just want to disappear, but ... I can't.  At the same time I want to be the person she can depend on, I feel completely undependable, as if I'm trying to be a pillar, but I'm standing on pillows.  I don't feel up to the task, definitely.  All the areas I am most confident in - I can organize these appointments and medications and nurses visits and bath times like crazy, y'all! - feel inadequate, because there's so much that I can't do.  On a good day, I can listen and empathize and search for non-existent prayer cards for three hours, and on a bad day, I find myself thinking that it's a good thing I'm not a parent yet, because this getting up at 3 in the morning to make the first of three breakfasts or balance the checkbook for the 24th time this week is bullshit.  On a good day, we sit on the porch, and even though she's not herself, the pure unedited joy I can read in her face as the cool breeze finally reaches us is more reward than I could ever ask for; on a bad day, I mutter sarcastic answers under my breath to every little dig and jibe she aims at me, even though I know that whispering and sarcasm just antagonize her.  (I do try to keep it under my breath, but really, sometimes you just want to be like: Yes, yes Grandmother, I do want to "end our relationship", which you can obviously see by the way I'm making you yet another cup of tea, because you completely ignored the first two I brewed for you and let them get cold.  That's why I've given up showering more than twice a week during the hottest days of the decade, because I "hate" you so much. Grumble grumble grumble.)

There are no answers to be found here, really: she's not going to magically wake up tomorrow and remember that we've always and only done our best for her because we love her, and I'm not magically going to be able to ignore her little poison darts when they're aimed at my heart.  It's not ok, but it is what is.  It is our reality right now, and I'm going to live through it.  (Now I just have to keep repeating that to myself until I believe it.)






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On a more positive note, I can not thank you all enough for your kind words on my previous post (or any of the posts concerning our current situation, for that matter): I think it's obvious that I am having a hard time here, and I hate to be continuously on and on about it, but it's pretty much all I have time to think about right now. I am humbled by and so grateful for all of your supportive comments ~ knowing that so many of you have been through this/similar issues is both tragic and heartening: I am sorry for you and your loved ones, but so glad that I'm not on my own here. Whenever I think about closing down this blog, because, let's face it, I don't utilize it as much as I could/should, and sometimes it's a pain in the ass to even think about posting, I always come back to this: so many of you are here when I need you, when (almost) no one else is. Whenever I think that I am most alone, when I am sure that no one at all will understand a word I am saying, you somehow manage to make me feel as if the things I say matter to you, as if I am part of the 'real world' again. As if all the crazy I am feeling might somehow be a little bit normal. So, thanks for that. (And all of your suggestions: you can be sure I am taking them all to heart.)  A thousand thanks, NTE
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Damn, this is hard.

Things are so much better - and so much worse - than I expected.  I don't know what I expected, really: all of the literature the hospice people give you sort of makes it seem like there's a straight line of decline to follow right through their showing up until she passes away.  But that's not the way it's going at all, which is excellent, of course, because she's still here, and not excellent, of course, because sometimes she suffers so much.

The hospice people say (over and over again) that their goal is to ease her suffering and to support us.  I know they are trying, but I'm not always sure they're meeting those goals.  Of major import to me is her suffering - if it were from physical pain (and they warn us that that is likely still to come), it'd be easy to address*, as they've given us all sorts of happy drugs and the lessons on how to administer them should she want them.**  But it's a mental sort of suffering that's affecting her, and all of us, the most.

She forgets who I am now.  Just a few weeks ago that would have been unthinkable.  Now I am my mother, my 2nd cousin, her sister, my sister, her daughter, the nurse, the hotel concierge, a random office worker, the social worker, the hair dresser, the lady who comes to give her a bath.  Some of these are quite reasonable - I have a similar look/manner as my mom, I have given her a bath in the past, etc - but if you're telling the woman in front of you (who is sitting in a wheelchair) about your granddaughter who is in a wheelchair, and who visits you sometimes, then all is not well. 

Worse than the forgetting though, is the paranoia.  The feeling that we're teaming up against her, and the repercussions of that.  This morning she woke with the idea that we were going to her mother's funeral.  Her mother has been buried for 90 years, and while they say to agree as much as possible, I couldn't very well take her to New Jersey for a funeral that occurred 6 decades before I was born.  I can see now, with hindsight, that I should have just kept going with it, for as long as possible, but sometimes that comes back to bite me in the ass too, so I don't know where to put my feet, most of the time. (Also, in my defense, it was 4:30 in the morning.  And I had gotten less than 1 hour total of sleep since 4:30 the previous morning.)

Usually, I will just play along until it is either time for her to nap (which is every hour or two, most often) - in which case she may forget what her previous plan for the day was - or distract her enough that we can move on to other things.  But this morning, distraction accomplished nothing - she wanted to clean the house for the post-funeral visitors (at 4:30 am), not eat breakfast or have coffee.  After having to tell her no for numerous activities that she claimed to want to do next - stuff she or I can not physically accomplish, like climbing the stairs or hanging tablecloths out on the line - I could tell I was getting into trouble.  Worse, she showed no signs of slowing down or needing a nap, and now there were only two hours for her to get to her actual plan for the day - a necessary doctor's appointment.  (And it takes that long, with breaks built in, for her to get ready for things.)

So now I have to tell her that she's got to get dressed, and that she has to go to the doctor's. 

"Do you think I'd choose a doctor over my own mother??" 

"No Ma'am, but that mass isn't this morning - we don't have any mass this morning to go to."

Cue horrified look, as if I have just personally, stripped her dead mother bare for the world to see.  "She's in the coffin two rooms away, and I'm supposed to just leave her there?" 

"But she's not in the coffin, Grandmother, at least not in the house, right now. She died a long time ago, and was buried then.  She's not here right now, so we're not disrespecting her."

"Do you take pleasure in reminding me that I've been motherless for most of my life.  Do you think I don't know that? "

"No, ma'am.  I'm just saying that it's ok to get ready for your appointment, because... that's what we're doing today."

"Well, it's not what I'm doing."

This back and forth only got worse, as every sentence was another foot in my mouth.  Eventually she was sitting and (quite pathetically) trying to straighten out her bed with her one injured arm and her other hand full with her cane, on a footstool next to the bed.

"Here, Grandmother, let me help you up from there: it's too low to work from."

"That's not the only thing that's low today."



That's the thing: my Grandmother has a viper's tongue, when provoked.  And I've only done it twice in my life, really, and both of those times have been in the past week, and have occurred when I was trying to be helpful.

The other night's episode had me fleeing to the front porch so I could burst in to tears, call my mother, and burst into tears again.  She was upset with my uncle (who is her main caretaker, and thus, her main target when paranoia or delusions strike), and was convinced that he had sold her two youngest children away.

 This is a common theme when she's delusional - the hospice people told us that usually, people see their departed loved ones and it's all "hooray and glorious and sweetly sentimental".  Not for my grandmother.  For her, it's people who've been dead for 70 years showing up and standing in the corner, refusing to speak to her.  It's little boys (she had seven) disappearing and nobody helping her find them.  It's wondering over and over and over again why you can't find this one or that one, or why they would walk through the house without saying anything to you.

So heartfelt reunions, she's had a few, but mostly, her hallucinations are upsetting to her, and leave her stressed and confused.  As happened the other night, when her delusions and viperous tongue reached out and spit at me for the first time.

She was against my uncle, which means he can't even go in the room to give her her meds without raising her blood pressure (which, since she has congestive heart failure, is not optimal). So I went in to get her dinner dishes, and she starts telling me that I need to tell her the truth. (Here's the thing: telling her the truth is actually the WORST thing to do, all the professionals warn me.) And when I say that I don't know what she's talking about, I am all of the sudden 'picking sides' and 'making living here unbearable.'

'Grandmother: I don't know what you need, tell me how to help you.'

'I just hope your conscience is clear, NTE, because if you think about it, there are some horrible things happening here, and I hope you're not a party to them.'

'No, ma'am.  I'm not a party to anything I'm ashamed of.  I'm only here to help you, if I can.'

'I hope that's true.'

20 minutes later, as I'm giving her a kiss goodnight... 'You know Judas kissed Jesus before he betrayed him, right?'

 

So her memory may not be up to snuff, but her pointed tongue is still as finely sharpened as ever. (And all my aunts and uncles, and the sister who lived here as a teenager, are feeling just the teensiest bit justified by my experiences: not that they want her to hurt my feelings, but "I told you she wasn't always so sweet" has been spoken more than once.)

Hospice doesn't prepare you for decapitation or slow bleeding, however.  They just say things like "try to play along, if you can", and "she shouldn't be upset, if possible" without realizing that those are two contradictory pieces of advice.  And while I know she doesn't really, in the scheme of things and our relationship and lifespan together, believe that I am a Judas who won't let her go to her own mother's funeral... she believes it right then, and it's hard for me not to take that personally.  The only thing that kept me from running home the other day after the Judas comment was that I knew she wouldn't remember it when she woke up, which was less than an hour later, which I was completely right about, but I must have suffered as much as Judas waiting for the cock to crow, knowing I was hurting someone I loved, even if I didn't mean to. 

Damn this is hard. 

*and what an irony that is to me, the chronic pain patient: if you're dying, we can ease your physical pain; if you're not, you're pretty much out of luck.  Good system, everybody!

**Irony part 2: she hates taking medicine, and will not take it at the first sign of pain. Or the second.  Or until a part of her anatomy is in danger of falling off.