My Grandmother's birthday is this month.  This week now.  Sometimes, when someone dies, the anniversary of their birth or death just sneaks up on you, or (if you're lucky) right by you. As someone who's lost (I was going to say a 'fair' number, but 'fair' doesn't enter into the conversation when you're talking about death, so I'll stick with) more than one person I loved, I've lived through loss long enough to know that it (mostly) does fade enough so that some years a birthday or death day will come and all I'll feel is that tug of longing, that twinge of regret that I no longer have that person in my daily life.
    But firsts?  Firsts of anything are ripe old bitches - and I know that I have been not been doing particularly well with my grieving process in the first place, this time around.
    Mostly I feel like everybody else moved on, and I'm still stuck in last summer, holding the hands of a woman whose face I'm trying to carve into my memory as I watch my face fade from hers. 
   I can't explain how powerfully & profoundly that experience has changed me, and yet - nothing else has changed! She's still not here, and I still am: stuck in my bed, in this house, in this life that I don't want or recognize, but lacking the ideas, strength (physically & mentally), and just plain energy to do anything about it. 
    And now her birthday is coming up, and I'm hyper-aware of it.  As in, I usually have no idea what the actual date is, unless I have a doctor's appointment in the near future, but ever since July 1, the calendar has been mocking me.  It's been a constant, in my face, reminder that JULY IS HER BIRTHDAY and HER BIRTHDAY IS COMING, PREPARE TO CRY. The date has been getting closer and closer, and my mood has been getting darker and darker. 
    I think about how, for most people, Friday will have no meaning at all... even in our family, Grandmother's actual birth date was always one of those "Is it the 17th form 1919 or the 19th from 1917 or maybe it's the 21st?" kind of deals. (My family is bad at dates. Also time. Also lots of other things that matter to me a lot, which you can see would be kind of frustrating.) And for me, Friday is a huge, looming, taunting thing that I'm trying desperately to avoid, knowing it's going to come and suffocate me anyways. 
    Because, as I said, I'm no amateur at this whole grieving thing (even if it feels like I am, every. single. time.), I've done my best to keep occupied, knowing that distraction is one of my best coping skills.  I've tried making plans for the actual date - my best friend is in New York, all my siblings are working, Mom says she is up for anything, but lately it's all she can do to not melt into a puddle every time she ventures out into the hot - and I think I've wrangled myself into a kiddo sleepover, finally, but - like everything else this summer - it's complicated too.  No Longer Youngest Nephew (soon to be by the power of two, come to think of it) is 13 now, and .... while he's up for games and stuff, it's as if when his voice cracked, his preferences for spending time with me did also. It's not that he doesn't love me, or that we can't still have a good time together every now and then, but he'd rather be with aunts who drive cars to New Hampshire where he can hang out with his older cousins, or aunts and uncles who let him watch R rated movies and take him to hockey games.  The largely sedentary Auntie NTE is no longer first (or even, honestly, second or third- which would be sitting at home playing video games) choice and, wow does that sting.
    Still, I'll be glad to have them here on Friday, to give me something other than my own gloom to focus on. And - even though I know it is, in part, because of the overwhelming upcoming birthday - Holy Jupiter has this month (/season/past 9 months) been full of gloom for me. Let me just mention this one other thing, real quick, that kind of explains why I've been avoiding this space and writing in general for the last little (ok long) while:
     Along with the gloom, which I recognize as both a normal part of grieving and a truly hideous part of grief, I've also been experiencing something a little bit more troubling, because it dabbles its feet in the "how close are we to the edge of depression here, really" pond, and that's terrifying to me.  It's something that has been growing since before she died, when I felt like it was just me and UJ in the trenches and everybody else was sending care packages every now and then, but had no idea what it was truly like to be waging war against a disease that made you a stranger to the person you loved so much.  And it blossomed once we lost her, and then my sister & her husband were forced to move out, and my mom's depression spiralled downwards, and everybody I knew was fighting their own ridiculously hard battle, and asking for my help, sure, but you can't tell people how alone you feel when they're crying on your shoulder.  And somehow, even though I've tried reaching out, I am left, once again, feeling forgotten and outlived.
     Which is not the kind of thing you can say to your pregnant baby sister, or your other baby sister who moved to the middle of nowhere again, or your other baby sister who you're so fucking proud of you could burst, but miss more than air sometimes - but it's how I feel.  And even though I know that my family is not, in fact, "leaving me behind" (and also that it's not their responsibility to make me feel better about feeling left out, really), but it's kind of hard not to feel that way when you've experienced it so often, just by virtue of being the sick one. First with my high school friends, then when all my college friends started getting jobs and getting married, then when they all had their first round of kids, then their second (and some are now on their third), and this may sound weird, and horrible and selfish, but it recently just occurred to me that this is the first time that I have been the only one living at home, and it makes me feel (ancient and weak and useless and pathetic) a whole boatload of things that I know I am not, but still am feeling. 

And, oh my god, so fucking lonely.
   
   Which is why tumblr has been great, because: So many spoonies! and some of them are old like me! (Because holy jebus, the teenagers.  Talk about feeling ancient.) So, less lonely: here I come.  And a lot of them feel left behind too.  So I don't feel so ridiculous about both loving the sight of my sister's gorgeous baby bump (Seriously? She's one of those adorable pregnant people who glow so much they nearly sparkle.) and still being so sad that it isn't me.  One of my other sisters recently lost a ton of weight by eating healthy and doing an exercise program, and I was so glad for her, and at the same time, I kind of wanted to punch her in the face. Because I've eaten nothing but cardboard for a year, and I've eaten 3/4 fruits and vegetables for the last 2 years, and I still can't stand up without wanting to die.  I miss moving my body and feeling good about it and not resenting everything it took away from me.  I miss trusting it.  (That's one of her big things, this hippie-crunchy sister of mine, "trust your body, it knows what it needs" which is almost so naive as to be cute, except for how my body apparently knows that it needs to lay on the floor a lot and never move, and make me feel like I'm constantly being crushed by the air? my clothes? gravity? So yeah: hilarious.  And rage inducing.) 
    So, yeah: it's been a rough couple of months - not without its rays of sunshine, of course.   In the forms of a family wedding and house guests who like to chat; a baby shower in the making; a couple of kids who grow like weeds having birthdays; a trip to the movies; a birthday trip out for me that included chocolate fondue and a book signing (which - heaven, right?); and even little things like a couple of really good books (a new JK Rowling under a pseudonym? Must acquire immediately!); coming up on finishing a really large (3+years) project; starting some new crafty things; making sisters laugh when they feel like they never will again; a pining Robb Stark (I'll post a picture this week); and learning how to apply makeup correctly for the first time in my life, via Youtube videos.
   
  But this is going to be a hard week, and I'm going to need as much sunshine as possible to make it through, so if you have any, please feel free to share in the comments.  Hope your weeks/months are going a little bit cheery-er, and even if they're not, at least you know you're not alone.  {God everything I'm writing today is like a therapy session: I'm sorry internet.  (I'm not really sorry - it felt kind of good to acknowledge that shit.)}

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. 

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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