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. 

She always liked the Snoopy one

I've been trying for weeks to write coherently about where I am and what I'm doing.  And all I keep coming back to is this: I am living on my grandmother's couch, from which I can see my grandmother's hospital bed at all times.  I am making three breakfasts a day, when necessary, and sleeping in 10- 25 minute bursts (finally, a practical use for my painsomnia!) and talking about what happened 75 years ago as if it were happening right now.  And I am doing all of those things because my grandmother is dying.

Or she's not.  (It depends on the day, really.)

And it's happening both too quickly and too slowly; too tenderly and too angrily; too neatly and too messily.  And the rest of my life right now makes about as much sense as that previous sentence. 

---

About two months ago, I started to get more worried than usual about my grandmother, because during our weekly visits and phone calls, she was saying things that made very little sense, her voice would get whispery or slurred, she'd go off on tangents about subjects we'd not been discussing, and, eventually she stopped being up for visits, and was ending our phone calls rather abruptly  ~ sometimes in the middle of a sentence, she'd say "Well, give my love to everyone: talk to you next week", and hang up the phone.  Now she's never been particularly skilled at using the phone (especially the newfangled cordless 'doohickey' my uncle installed for her a few years back), so this was strange, but not completely out of character.  When I'd ask my uncle how she was, he'd say things that sort of glossed over my concerns - not addressing them so much as giving me a blanket "oh, it's been a bad day/week" and moving past it. 

But enough things were happening that I was majorly concerned, so when he started ignoring my calls 3 times out of 5, and she stopped being available for even the slightest phone call, I decided it was serendipitous that the upstairs bathroom needed re-tiling at the exact moment that I needed to get into the house, and asked my uncle for refuge from the smells, hoping it would get my foot in the door here.   I got that far in, and - aside from Tuesdays with the kids and a shower at home, and my own doctor's appointments - I haven't left since.

Because she wasn't just not feeling well: she was decidedly different.  Failing.  Stumbling over sharp edges and corners in conversations that should have gone smoothly.  Sleeping all hours of the day, and getting her days and nights confused.  Asking for dinner at 6:45 in the morning, demanding to know why we were starving her, even though she'd just eaten at midnight. 

Her confusion is a live wire of a thing: you never know which Grandmother is going to wake up.  The one who remembers who you are and how she used to lay you down to sleep on a quilt in the den while your mother went to school, or the one who thinks this place, the house she's lived in for 50 years and raised 9 children in, is a hotel or a hospital that you work in and that she'd like to check out of thank you very much.  She could take a nap at noon and wake up around three, ready to sweep the porch and sit out in her rocker.  Or she could stay awake till 4 in the morning, moaning because you've just told her that four of her sons are dead and she thinks it just happened right now. 

"Humor her as much as possible" the hospice people say: If she tells you she sees her dead sister bustling around in her socks and assigning chores, play along if you can.  If she thinks she's the charge nurse and is waiting for doctor's orders, let her wait till she gets tired and moves on.  That's all good in theory, but in practice, it's having her call you a traitor because you knew that her brothers weren't really dead and you've been letting them hide here all this time and now won't bring them out to her.  It's her giving you a dead-eyed stare for 30 minutes because she's sure that you've allowed her "little boys" to be sent away without her consent.  It's handing her her purse 4 times in an hour, and helping her count and recount the same $197 dollars in cash she's had in there since May.  It's eating steak and baked potatoes at 11:30 a m because she insists it's time for dinner.

Some of those things are doable, and others - because even in her confusion, she's no dope - are not.  If she tells you she say a dog in the kitchen last night, and you play along, she wants to know who is feeding the dog, and where it is staying right now, and who allowed a dog in her kitchen in the first place, and aren't you allergic to dogs?  And here is where my poor lying skills are put to the test, and where she sees through all my attempts to talk around the subject, and where, inevitably, one of us will wind up upset. 

At first, my uncle assumed that this was a complication of one of the medications she was given for her fall down the stairs - she is particularly sensitive to pain meds, and the oxycodone made her hallucinate enough that the doctor took her off it immediately - but now she's been off those meds for months, and she is not improving.  And we're remembering little things: like that fall down the stairs - what was she doing up, getting ready for church at 3:30 in the morning in the first place?  Like all the conversations we've had to repeat because she didn't remember what we were talking about at all.  Like how she seemed to forget that her son and nephew had both died last year, and we'd all assumed that it was just how she was grieving this time - that, having so much heaviness to bear, her brain had decided to remember it only when necessary, and to spare her most of the time.  How even last year, maybe two years ago, our visits were getting shorter, and she was going less places, and sleeping more, and participating less, and all of the little things that seemed like just "oh my goodness she's going to be 95 years old, if she wants to go slower, cut her a break!" and now seem like "how did we miss that?" 

I think he still assumes that the "confusion" will clear up, at least some - I'm the only one using the word dementia, and when I brought it up the first time, I might as well have punched myself in the face, for the look he gave me.  But we both know - this is not normal, this is not getting better, this is not going away. 

The hospice people were called in when her aftercare for the fall ran out: she still wasn't able to shower by herself or even get up the stairs very much, and her congestive heart failure was progressing to the point where she needed oxygen some of the time.  So the hospice people came in, and keep coming in to help us, but they aren't here to stop anything from happening - just to make it easier on her - and us, I suppose - as it happens. 

Her bed's been in the downstairs dining room since the fall (and by fall I mean both the tumble down the stairs and the season which it occurred), but now it's a hospital bed, and the room still has the look of a temporary, make-do space.  Her clothes - the housecoats she wears everyday - are stacked on chairs and on the buffet, she doesn't have even a drawer down here she can call her own.  I want to have things brought down, things she can recognize as part of her room, pictures or a bedside table, or something,  but she still thinks she'll make it back upstairs, and my uncle sides with her (and is the only one of the three of us who can climb the stairs), so I am outnumbered. 

I know I'm making some progress with him - he's started telling his brothers and sisters more of the truth when they call.  Grandmother is good at pretending - on the phone or when the doctor/nurse/hospice person is here - that she's holding it together pretty well.  And sometimes she is.  But those times are getting fewer, and the times when she is not are getting more severe, and to say anything else at this point is straight out lying.

I've been avoiding cousins calls for weeks now, knowing that I have to say the truth, and not wanting the words to have to come out of my mouth.  My brother knows now, my sisters: telling them was impossible - what do I say?  She is not doing well, except for when she is fine.  She needs the oxygen every day now, but sometimes it makes things so much better you wonder if it isn't fairy dust.  Other times the cannula might as well be blocked, for all the good it does as you sit and watch her chest heave, hoping she catches the next breath.  How do you explain that things are routine and desperate all at the same time?  How do you get them to see that it is urgent, but not critical today, and that that may change by the time we finish our conversation?

I put such a look of fear on my brother's face, and I know that I feel it as well - The end is coming, and I can't stop it but at the same time, it's just an ordinary Tuesday here, with Grandmother lamenting the state of her curtains ("they never got washed for Christmas, and here it's Easter all ready" "No Grandmother: it's the 4th of July"  "That's what I said: didn't I?" "Yes ma'am") and hoping that mail might be interesting.   Nothing out of the ordinary, really, except for everything. 

When I say that it's happening "too quickly and too slowly", I mean she would hate this, if she knew.  She does hate it, when she realizes.  Sometimes she has clarity, and those times are the worst, because she knows that she isn't clear the rest of the times - that her days are blanks and holes and that during those blanks and holes she may say things she doesn't mean. 

"I hope you know how much I love you," she'll say when she's clear, as if to make up for all the times she'll forget who I am tomorrow, all the misunderstandings we'll have before she's clear again.  She was never one to say that, not really: we all knew she loved us, but it wasn't her way to come out and say it.  So it means all the more that she does it now.  And I do know, I do. 

 But I don't know what to do, because most of the time I'm just sitting here.  Doing the laundry and talking about the time her uncle was killed on the ferry to Staten Island, marking time.  We make it through another day, and I write a big X on the calendar, because she's sure to ask me 17 times tomorrow what the date is, and if it's not marked off we'll have to argue about it, and above all, I'm trying to keep the peace.  When she gets upset, her breathing gets worse, and she gets more confused, and it certainly isn't worth that worry, to remember the date.

I can watch her heart beat in her neck - the vein there bulges some, and it makes the skin expand like a bullfrog's sometimes when she's breathing too hard.  Sometimes her whole chest caves in on a breath, and I hold mine while I wait for it to re inflate.  Enough beats, enough bulges, and we make it through to another X, and I wonder what I'm doing here, when she seems OK, really: tired, sure & confused, but maybe I'm making too much of it.  Maybe I'm worrying everybody and throwing off our whole summer plans and lives and she'll just keep ticking, just keep making it through the days.

 It's not a waste, me being here, because I'm spending time with her, which has always been one of my favorite things, but is now also a strain at times;  and I sit and listen to her worries - and oh boy does she have worries, she might be 89% worries at this point; and I make sure she doesn't tangle herself up in the sheets when she gets up to go to the bathroom 16 times during the night, but sometimes it feels like I've put everything on hold until the next horrible thing happens, and that's a terrible feeling.
Like I'm waiting for her to get worse, because I know she's not going to get better, and I wonder if she thinks that's why I'm here, because she can feel how worried I am sometimes, can read it on my face.

"Why are you so sad?" She'll ask me.  When she asks me with my name, I can smile, and say "not sad, just tired", and have it be the truth.  But sometimes she'll ask as if my being sad is part of some plot against her, or just another sign that she's dead and nobody told her, or yet another example of how we are all hiding things from her, and then I don't have the poker face to pull it off. And I hope I'm not making it worse, feeling sad, when she needs me to bring peace,  so I suck it back in, and hope it doesn't leak out so much.

I feel like a float in the Macy's parade, I've got so much sucked in.  Because today is Wednesday, July fourth and it's only 9:30 in the morning, and so far she's had a sandwich at 2:30, cookies and milk at 6:00, heard the doorbell ringing at 6:15. And we've talked about a non-existent trip to New York that nobody is making, the time in the 70s that she walked down to listen to the Pops with my two oldest cousins and they all danced in the street on the way home, and at least twice she's told me how to wash the windows when we take the curtains down today. 

You know, at the end of those parades, a long time ago, they used to just cut the strings and let the floats drift away.  I'm not sure I want to be around when the time comes to let all the sadness out, and floating away sounds heavenly right about now.  But I'm here.  And I'm sticking.  And it sucks, and I wish I could write about it in a way that made logical sense, but it doesn't make logical sense, so we're stuck with this, pouring a little bit of the sadness and worry and stress out onto this page, so I can face going back in there and talking about the goddamn curtains again while I try not to count her pulse or monitor her breathing. 

Happy Arbitrary Day

Welcome to the Blog Carnival #83, for June 2012.

Our own Blog Carnival Leader Extraordinaire, Penney, starts us off with a post about the little known (at least to me) Infante Philip, the heir to the throne whose disabilities led to him being passed over as King of Spain & Naples.  (Particularly striking to me was the line from his Wikipedia page that he had been "excluded from the succession to the thrones of Spain and Naples due to his imbecility.", which led me down the wormhole of imbecility -> Mental Retardation -> Euphemism Treadmill -> a discussion re: the evolution of people first language regarding disability.) 

The Girl with the Cane gives her take on Disability & Religion, a topic that Ruth Madison also addresses some in her post We Are All Disabled.  Ruth's post also makes some great points about disability being seen as 'lesser', and the inherent hierarchies even within the disability community.

Casey's post Cartesian Dualism & Chronic Pain not only gave me a fancy label for how I sometimes have to manage my pain (Cartesian - relating to Descartes, and discussing the mind-body connection/problem), but had a great first person account of how transcending one's pain can be both a positive and a negative for those of us with chronic pain.  

In the political spectrum, I found this post by the Queen of Spain to be quite to the point (and hope that the Supreme Court sees the points this week as well).

 
Robert Rudney  is the author of a new book, Lovers Lame, which portrays the romance between two main characters with disabilities, and seems really interesting. (You know I'm always on the lookout for new books: Hero & Heroine both have disabilities and the story talks about the differences between their situations and doesn't just glom them together because they happen to both have physical limitations?  Immediate add to the TBR pile.)  I also found his discussion about the book in the comments for this carnival to be quite interesting: 

How many movies or TV shows present people with disabilities in romantic or sexual situations? Not many…

One reason for writing Lovers Lame was to explode this misconception. The loving relationship between Christy and Jonathan, two individuals in wheelchairs, transcends their disabilities, societal norms, a serious accident, and pig-headed parents. With a little help from a sympathetic personal assistant, they achieve sexual fulfillment. They are the lucky ones, but they are fictional.

Stacie's post, Masquerading, particularly hit home for me this month.  She talks about how she felt she's pretending, passing as normal, when she spent time with her younger child while her older child with disabilities was in school.  Because so much of her brain was still focused on the needs of that child, it often felt like 'pretense' or 'deception'.  One of the reasons posting has been so light here this month is because I've mostly moved in with my grandmother and uncle, having realized just how desperate my grandmother's health situation is.  I've got another (very long, complicated) post about this going up this week, but what I will say now is that whenever I'm away from the house - gone home to shower or to take my Tuesday with the kids - 85% or more of my brain is thinking about the situation here and what might be occurring in my absence, what I may have to put back together when I return.  So that feeling of deception - keeping the happy face going for the kids, especially - is one I'm becoming quite familiar with. 

Sharon makes some excellent points about the challenges of writing with disabilities (lots of them echo my own experiences, for sure):   

However, the biggest toll that my disabilities take on my blogging is in volume, frequency, and organization. I tend to write really long posts, and that’s often because I can’t keep track of what I’ve already said. I often make the same point repeatedly because I’ve forgotten that I’ve already made it. I start posts, run out of spoons, plan to finish them another time, and then never do — because I’m too sick. Because I’ve forgotten the point of what I wanted to say. Because I’ve written another post on a similar theme, forgetting that I already had something written on that topic. Because the content is no longer topical. I have approximately a hundred partial posts in my drafts bin here. Of course, my readers don’t see all these failed efforts because I don’t post them!

 Allison over at Gilbert & Me, (who was so patient when stupid Blogger kept marking her comment as spam),  has submitted an older post that is poetic and honest and beautiful, called What Does Seeing Feel Like In it, she discusses all the things she thinks she'd like to see, if given the opportunity.  She discusses so many aspects of sight and blindness that I, because vision is not an issue for me, had not considered before, and although it's kind of long, I urge you to read the whole thing if you can. I think the part I liked best about it is that she expresses a natural curiosity about how things might be different and does it in a way that shows all those tropes about how people with disabilities feel sorry for themselves are just a bunch of BS.  Case in point:

In the same way that my parents get carried away discussing how they would use their lottery winnings first to pay off all the bills, and then live out the rest of their days quietly in a modest house, in a community where no one knew them to avoid being scammed or robbed, I think about how I would react if suddenly, I could see.  ... But until then, I can accept staring longingly over a figurative fence in awe and wonder at the sighted world while sighted people stare back in amazement of me as the way my life was meant to be.

In a similar vein, there's this post by Wheelie Catholic, Do I Think About Walking, which I found in my Internet wanderings.

 And to bring this edition of the Disability Blog Carnival to a close, we have this positive perspective contributed by  Meriah, who's hosting her own Summer Disability Blog Hop each Wednesday, in her post  What the Cultural Value of Disability and Star Trek Have in Common:

We don't look at the contribution of disability in and of itself, you see. We are not looking at disability and seeing it as an opportunity for growth, change, forward movement and advancement of our human race as a whole: we are looking at it like it's a problem. Something to be fixed. Broken bits of human flesh that need mending. We are trying to shove people that are especially unique into a mold that just does not fit, rather than looking at the mold and wondering how we can get rid of it, the mold.

 That's it for June's edition of the Disability Blog Carnival, this Arbitrary Day: Hope you all are as well as possible, and that you'll keep your eyes open for next month's Carnival, wherever it might be.

Hey, All, it's June

Which means that I'm going to be posting this month's edition of the Disability Blog Carnival - #83 - The post is going to go up on June the 25th, and (in honor of Arbitrary Day) can be about anything disability related your little heart desires: an old post that's a particular favorite of yours that you wish more people had seen, a brand, shiny new post that you're going to write specifically for the Carnival, a rant, a rave, a list  - whatever floats your particular boat.  

You can post the links on this page, or just leave a comment if you want me to send you my e-mail address (as that link has conveniently disappeared from my template for some strange reason).  I do ask that you do your best to make your website as accessible as possible... for me, that means making visual descriptions of things and leaving the captcha off of commenting, when I have the spoons. (And understanding that other people might not have the spoons, when I come across a site that doesn't follow that same protocol.)  Submissions will be open till the 23rd, just so I have a chance to compile them all, because last time I hosted there weren't too many, and I had to do some filling in with some favorite posts by other people, which meant remembering where the heck I'd read something, which is an iffy proposition sometimes for me.

Happy June, everybody!  

We survived & I remember

My grandfather came home from fighting in Europe during World War II, and never drove a vehicle again in his life: He'd seen the jeep full of soldiers in front of him drive off the side of a mountain as he followed behind driving a supply truck for the convoy.

My great-grandfather survived a torpedo strike on his ship, and walked away with a piece of the ship he served on: we have it here, in a box of my grandmother's stuff, and I didn't know anything about it until I looked it up.  **

My great-great-great grandfather was killed on his way home for registering to fight for the Union in the Civil War: a bridge was washed out, and he was washed along with it. 

Five of my great-uncles fought during WWII, and managed to come back alive: one of them was a medic at D-Day, and wrote back to his sister (my grandmother) that his "worst fear was coming across my brother, blown to bits, and knowing I wouldn't be able to put him back together."  He served for three years, hiding the fact that he was blind in one eye for his entire tour of duty.

My uncles served: Korea, Vietnam, (relative) peacetime.  On ships, planes and submarines.

My cousin was the most handsome man I'd ever seen in uniform, and his father said the military made him better than he knew he could be, (which only makes sense if you know that my cousin always thought he could be anything, so that's really saying something).

My dad served for the first 15 years of my life, fought in Iraq, Desert Storm, as I sat, frozen in front of the television screen watching as little green bombs lit up the night-vision sky, blasting away people and lives, worried I'd never hear from him again.  He came home, eventually, but he didn't come home whole.  He told my brother once that he was a Navy Seal: I don't know if it's true or not, but it comforts my brother to think of all the heroic things he did while he was away from us.  It doesn't comfort me much. I don't know what he saw or did while he was in the Navy, I only know that it took him away from me when I was a little girl, and took it's toll on him when he came back.  He didn't get help for what was (arguably, but most likely) some very real PTSD - he didn't think he had a problem with drinking, and he'd fight you if you tried to talk to him about it. He wasn't depressed, except for when her was really depressed, and that was all someone else's fault anyways, so what did he need help for?

And when he died, we still had his ashes scattered at sea.  The Navy sent us a DVD of the ceremony: short, sacred, solemn.  Gone. 

So, it's Memorial Day, and I remember: Nurses who served at hospitals, filling in for the ones that got sent overseas.  Youngest brothers who moved their new families home to Boston because all of the older brothers had to go fight and someone had to stay with their parents.  The creaks of metal being pressurized as you take your first dive in a submarine and pray that the stupid thing holds.  Rising to the highest civilian rank in the Air Force and being accepted as the 'boss of the base.'  And all the mothers and sisters and daughters and wives, sons and fathers and brothers, who waited at home.  The soldiers who came back, the soldiers who didn't, and the soldiers who only sort-of did.

I remember.

**The ship was the USS Mt Vernon , in case you're interested.  (There's also pictures of my Dad, Grandfather & Great- Grandfather in their uniforms.) 

"Some heavy ammunition on your side..."

Just before Christmas, when everything was going berserk with Grandmother (again) and me (as usual) and Mom (which was new) and all the usual December craziness (birthdays and shopping and Christmas and doctors, oh my), something happened that hasn't happened to me in a long time, and I've been trying to write about it since, but the words didn't come till now. 

I hope getting it out there will stop making it so important in my mind.  I write about everything here, so (even though it feels raw still) it'll be worth saying it 'out loud', as it were.

 ----
Mom & I were driving out to see Grandmother at the rehab (like we were doing every day at that point), and I'd spent the morning chopping up all the ingredients for beef stew and thrown them in the crock pot and turned it on low before we left. And I'm sitting in the car and mom makes some random comment about leaving things on and fires, and blah blah blah, and instead of just being a piece of our normal everyday conversation, it was like SPARK! and that tiny little off-hand remark managed to ignite an instant fire in my brain. 

Immediately I started to worry about the crock pot, to reanalyze ever step I'd taken in making the stew - had I really turned it on low, or had I set it to high and it would burn the meat so quickly that it would catch fire?  Was it safe to turn it on and leave the house at any setting?  Have we ever done this before, even though I read about it all the time on the internet, that people make crock pot stuff and then go to work with it cooking, have we ever personally tried it before?  Are we too far from the house to go back and turn it off? Just a constant stampede of 'could I be setting the house of fire' thoughts tumbling around in my brain, while I'm attempting to still chat with mom and seem like everything is ok.  

Meanwhile, I know that what I'm worrying about is stupid: We leave all sorts of things - computers, cable boxes, the fridge, the dryer - on at home by themselves all the time.  Nothing has ever happened, nothing is going to happen.  House fires are rare, and I was careful and made sure the crock pot wasn't near anything and was on low, and I know all of this, and yet, I can't stop worrying.  Some fifteen minutes later, it's still in my brain, still rolling around in there, maybe even picking up speed, because it's loud enough now that I've said it out loud, trying to make it seem casual, trying to act like we're still joking.  Ha ha! we laugh, as I say "but that wouldn't really happen, right?" Big laughs all around.


Still, 25 minutes into the ride, and now I've been muttering about it and obsessing about it for our entire ride, and my next deliberately casual "It's not dangerous to have left that cooking, right?" pops out of my mouth and  Mom says sharply "Oh my god: just let it go already!"  Which is the normal response, if a person is just being stupid about something, and it's driving you crazy.  But this wasn't just normal "oh, gee: random thought - let's giggle about this some more!" comment.


Nope, by this point I was full steam ahead into my first real anxiety attack in years.

I've had minor ones here and there - during other people's drunken fights, mostly, when I would swear some sort of PTSD part of my brain kicks in and I have to excuse myself from the tension of the current screaming match to go throw up before I can wade into things (either as peacekeeper or firebrand).  Sometimes just the sound of the cork popping out of the wine bottle in the kitchen is enough to have my shoulders creeping upwards with tension.  But for the most part, I've managed them, and managed to avoid them (which is even better).  I wouldn't even say that anxiety is one of my top 20 CFIDS symptoms, probably because I was never not a slightly apprehensive person: it's just part of my genetic make up, I'm afraid.

But these huge panic attacks - of which I've (thankfully) only had about 6  - these huge, really full blown, tornado brain of worry, hold your shit together or you'll lose it monstrosities.   When those mothers come, it's so frightening, because you know you don't have to be worrying about the thing, or that worrying about it won't help the situation at all, but you just can't stop yourself.  Your brain is a runaway worry train, and you're just along for the ride.

So she snaps at me, semi-facetiously, and I burst into tears.  'It doesn't help,' I tell her 'to tell me that the thing I'm worrying about is stupid.  I KNOW IT'S STUPID.  Now I just feel even more anxious because I'm ashamed that I'm freaking out over something so dumb."

But here's the thing that people who don't have anxiety don't get.  To people without panic attacks (those lucky bastards), it's just like regular worry: "Oh I feel like maybe that wasn't the best choice," but it's not a big deal, because Oh well, shrug.  People will worry.  It happens.  I'm a champion worrier, and that's not what a panic attack is - for me at least.  Worry is one thing, panic attack is a whole 'nother level of worry, combined with an astronomical confidence level - confidence in the truth of the fear, that is.

A panic attack is not just dread, but certainty.  It is an absolute conviction of doom.   I may know full well that whatever has set this off is  a ridiculous thing to be worried about, but I am still 1000% sure in my gut that it doesn't matter that the odds are astronomical that something could go wrong: something is telling me that it's not right, so it must be so.  Something is warning me to fix the situation, and I'm not heeding the warning, and that goes against every instinct you have.  In this case, all the signs are all pointing to the idea that the house will have burned down by the time we get home, and I'm supposed to blithely ignore that and continue on with our day as if nothing is wrong?  Impossible: it feels WRONG. 

That's when the logical part of my brain shrinks down to nothing, and instead I remember all those news stories about people who 'listened to their gut' and saved their families.  Or I replay all the times my feeling that something wasn't right was an accurate representation of the situation, and try to convince myself that this time it's ok to ignore all the DANGERDANGERDANGER signals my brain is trying to send me.

I dripped tears for the remainder of our ride, playing the tapes in my head that I know work to calm me: 'This is just a panic attack, it will pass.  This is SO not about the beef stew chica: you're life is feeling more than a little bit out of control right now, don't ya think?  Let's just ride this one out, and things will get better.  You are not psychic, and the house is not burning down while you ignore all the warning signs - this is not a real threat.'  But because it feels like a real threat, it takes me the whole ride to calm down.


I'm not shaking by the time we get to the rehab, but I'm still so ashamed - of the panic attack; of the tears, of not handling things like a grown up and instead breaking down into something useless; of the fact that I've broken a streak of panic! attack! free! years! over something so ridiculous - that we cut short our visit and go home relatively early.  I know that this is mom's way of apologizing for snapping at me (which, was nice but I'm not sure it was necessary), and reassuring me all at once. 


We arrive home to stew - nothing more.  Once I calmed down enough, 99% of me was sure that was all we'd find.  But the whole ride home, there's that one percent, that one embarrassed, fear-soaked percent, that's trying to get me ready to deal with the fact that I've failed to save all of our worldly possessions, just because I didn't trust myself enough to say "let's go home and I'll shut that off, and then we'll go."  And because of that one measly percent, I'm not reassured, because once that panic genie is out of the bottle, I don't know if I'll be able to stopper him up again.
 -----


That's why it took me five months to write this post: because god forbid that I tried to tap back into that feeling enough to write about it, and it exploded all over me again.  I had to be sure enough of where I was, emotionally, to write about that, and even that feels like a weakness to me: to be so scared of remembering how scared I was?  Panic attacks are ridiculous.  

And I was right, about the genie part - I've felt him trying to creep up on me a few times since, but I'm better at recognizing it than I used to be, so I've been cutting them off before the fear can blossom on me (for the most part).  And some pretty stressful shit has gone down since then, so I'm feeling like I've got a handle on managing it right now, which is good.

Because the next time I let something out of a bottle, it better be granting wishes, not paralyzing me with fear.  (Look: wish number one is all ready!)

   

Having a bedtime

I know we've talked about my CFS-related insomnia before, but it's tearing off little pieces of my life right now, so I'm going to talk about it again.  Feel free to move along: probably the only thing worse than listening to someone tell you random half-stories about their dreams is listening to someone ranting about how they're not sleeping.  Which is exactly what I'm going to do right now.

For the past few months, I'd thought my insomnia might be improving.  It was tiny steps like closing my eyes and not opening them again every 36 seconds, or fading out during a show and realizing that I'd missed more than one set of commercials that made me start to think "holy shit: I was actually asleep there for a few minutes!", and led me to hope that maybe, just maybe, this cycle of painsomnia was letting up.  I did all the things you're supposed to do to create an 'optimal sleeping environment' (as my sleep specialist likes to call it): gave myself a strict bedtime (midnight: anything earlier than that was too depressing, and made nights seem endless) at which point I shut off all electrical appliances - TV and lights off, computer shut, etc - opened the window a little bit (because your room should be slightly chilly to help you sleep), and increased the number of hot showers I was taking (because there's something about hot showers and your body gradually cooling itself that is supposed to be helpful with sleeping).  All the little tricks I knew that helped me, I put into effect - Initiate Operation SLEEP NOW PLEASE!!

And the thing is, maybe that all seems like common sense to you, but to somebody like me, it's also kind of scary.  Sleep is kind of scary.  Because there was a time (I was going to say 'not too long ago,' but then I counted back and it's close to ten years, so I guess that was a while ago) where sleeping was all I could do.  Sleep was as involuntary then as not sleeping is now and it consumed my whole life.  I had to schedule my classes  around when I could nap; I slept through people's birthday parties and graduations, my own prom and more than one family activity.  I would wake up exhausted (so, basically no difference there), even though I had slept for 8 hours, 10 hours, 14, or 17 hours.  My whole life was sleep based (again, no difference, just now it's based on the fact that sleep won't come), and there was nothing I could do without first balancing it out with hours of sleep in my mental ledger: 2 hours of class, then an hour nap.  1 day of student teaching, a 1/2 hour nap at lunch and then a four hour nap back at the dorms.  Best friend's getting married, stay up till 1:00 (even though everybody else went out afterwards and stayed up till 7), sleep for a day and a half until your mother wakes you up, worried that you've not eaten in 36 hours.

That's how all encompassing sleep was for me, before the switch flipped and insomnia took its place.  So while I long for sleep - long for it with the "I will sell you my immortal soul" type of desperation only other insomniacs can truly appreciate - I'm still pretty afraid that my body will flip the switch in the other direction, and I'll once again transform into some sort of Rip Van Winkle-tte.  So taking steps to improve my sleep is one of those double edged swords you're always hearing about - you know, the only kind that's really useful, but you take a large chance that you'll get stabbed by it in the process.

Unfortunately. those few good signs have all but dried up again, and my commitment to creating a sleep Utopia flew out the window right after them.  Even if I shut everything down at midnight, I've more than likely turned it all back on again by 1 - my patience for tossing and turning is at an all time low, and every wrinkle in the sheet seems mountainous and villainous, and I start debating whether or not I could create enough of a spark with my heating pad to set the whole damn thing on fire, or if the mattress will fit through my window, should I decide to pitch it out there.  Evil NTE comes out at night and dreams up ways to curse the entire sleeping world, or super-empathetic NTE takes over and spends all night watching documentaries about the saddest people who've ever existed in the universe.  (Side note - If I am Youtube surfing at night, no matter how seemingly innocent a search I have started off with, I will -without fail- somehow wind up on a clip that will make me bawl.  I started out watching old songs from Sesame Street (1-2-3-4-5-6-7-8-9-10-11-12 Ladybugs, at the ladybug picnic), and ended up watching Big Bird sing at Jim Henson's memorial service, at which point, my eyes were swollen shut, and I decided that was as close to sleep as I was going to get, and closed the computer.)

I saw someone use the term Painsomnia (on the Twitter, I think), and it was like "Hello word: I'm so glad someone has created you because you are exactly what I have been trying to say for ten years, but couldn't."  Painsomnia is exactly right, because if I wasn't all Princess & the Pea because of the stupid fibromyalgia, I might be able to get 15 consecutive minutes of sleep in, and I wouldn't be here, again, ranting about the fact that I didn't sleep last night.  I wouldn't be in complete zombie mode today, after 4 really tough nights, during which I saw every minute of the sunrise, and tried to translate the morning birdsong into English.  (I think the robin who lives in my neighbor's tree is very upset about the 2012 political scene.  Maybe.)  

But I'm re-initiating the bedtime tonight, because it feels like the thing to do.  Maybe it'll help, more likely I will spend 6.5 hours listening to a dead DJ being replayed on the fuzziest AM radio station my radio can reach (that's a story for another time), but at least I'll feel like I'm doing something.

Although, I can't promise I won't be back here all the earlier in the morning, complaining again.