She's Gone

  My time being a caregiver for my grandmother is done. She's gone. She started having a pain in her right arm in February, she died May 19, 2019. I spent a lot of April and May by her bedside in different hospital rooms. Despite my best efforts, she died alone. I'm pretty sure I haven't told anyone that, at all, in this process. She wasn't aware. She hadn't been aware since Friday, she died at 2:45 on a Sunday afternoon. She had been moaning that morning, so they gave her a morphine drip. The moaning stopped, then so did she.

  I'm not handling this well, at all. A lot of my stuff has been moved, but I still live in her house for now, for complicated reasons. There are things that I should be doing, that I'm not. I'm just, not. Right now, I'm sitting in the den where she spent most of her time. Sitting where I would sit on the couch, reading or playing with my phone. Her recliner is in front of me, to the right. Where she would sit and watch TV, and do the crossword puzzle from the paper every morning. I still start everyday by making coffee, and getting the paper from the paper box at the end of the driveway. I bring it in and sit it on the arm of her chair, then I pick it up and wander around aimlessly with it. There's a TV table in front of her chair. There's a pair of shoes under it, from the last time she walked in and sat down and took them off. That would have been in April.

  I'm looking for a job. I don't know what I want to do. Well, that's not true. I know what I really want to do, fairly passionately, but it requires some learning and a trade school degree. That's not really possible right now, money wise. Groceries are barely possible money wise right now. I haven't gotten paid the entire time I took care of her, I'll figure it out. I need to be making stuff to sell, but my jewelry stuff has already made the move that I haven't, including the already made stuff. The candle stuff is here. I just, haven't. I don't know why I can't just do the things that I need to. I'm such a fucking wreck. I fake being okay pretty well in public, though, so, no, I'm probably not going to cry on you or be a big drag.

  About this blog, it's kind of a diary. I write more than is public. I do know people that follow it, because I'm not this communicative in "real life." Well, usually not. Also, while I am a wreck, not everything sucks. I do smile. I do write. I do see a couple of people kind of regularly. One of those has brought more comfort and patience and steadiness into my life in the past few weeks than I could ever have imagined, and I am imminently grateful. No words can express it, really. And no, this isn't passive communication, they know damn well how much I appreciate them, or I hope so. I say it a lot. Probably not enough. I'm interested in actually taking pictures again. I'm interested in other things that I haven't been interested in a while. My life is a little less flat than it has been in a long time.

  I've had a few people ask if I'm moving back to Atlanta, since I moved back to take care of Gramma. Right now, I couldn't even if I wanted to. Which I don't. Other than people, I can count the things I miss about Atlanta on one fucking hand. One is pretty big, though. I miss having good dance events to go to, more often than they are here. There are awesome events here, don't get me wrong, but there isn't one night of any week that I know that I can get that release. I'm pretty much a Don Henley song, all I want to do is dance. All of the weekly nights here have failed, due to disinterest, older goths, I don't know. This literally causes me pain. I guess it evens out to maybe twice a month, but still. Given my choice, I'd dance five hours a night, twice a week in a club. Yes, I know I can dance alone, at home. I do. It's different. In Atlanta, I know that at least each Saturday I could be wherever VJ Anthony is spinning. Well, it's the same place each Saturday, just the theme changes. I miss Coffin Classics night, like, whoa. So much. NC has a more Industrial crowd, for the most part. Even though I'm an introvert, and I don't like to be touched, dance floor energy feeds me, even on slower nights. I also miss really good bagels, though my very favorite place there is gone, now. I miss being able to see the whale sharks whenever I wanted. I spent so many hours just sitting there, staring. I miss Community Q BBQ, though the recipe for the best mac and cheese ever, from there, is hysterically readily available, and super easy. I don't miss traffic, hand gun fire (we get rifle and shotgun fire pretty often, here in the sticks), or the chance of running into someone with whom I have quite a bit of common interests. At least I used to, anyway. Who knows, anymore? Some people shift with their company more than others. So, probably not. I do wish I could visit more, say, every Coffin Classics Saturday, say, but I can't right now. Ha, just the two times a year I'm guaranteed to run into the aforementioned soul for twelve hours a day or so. I'm giving all of that some thought, too.

Enough for now. I will leave you with the eulogy I read for my Gramma, though some of you have seen it.

Dorothy Lee Whitley
3/14/1931-5/19/2019

My Gramma loved a lot of things.
She loved people and laughing and talking.
She loved tigers, especially white ones.
She loved gardening and all plants and flowers.
She loved country music and dancing.
She loved her family, her mama and her sisters.
I heard her say, more than once, that Big Mama was too good for this world.
She loved her kids, her grandkids, and her great grandkids.
Heaven help anyone standing between her and Avery.
She loved coloring books and crossword puzzles and chocolate.

I could stand here all day and tell you the things she loved.
I could even tell you the things that she hated,
But this probably isn’t the time for that.

The truth is, everyone you meet takes away with them a different version of you.
No matter how consistent you are, people will view you through the filter of their own views,
Personality, experiences, and even mood.

So, I’m going to tell you some of the things that I took from her,
Some of the things that make me, me.
I would not be who I am, without her.

I worked in photo labs inside of camera stores for almost twenty years.
Photography has always been a passion of mine.
By the time I was 10, Gramma had taught me f-stops and shutter speeds and framing a scene.
I could selectively focus a manual camera.
She taught me the right combinations of factors, and then taught me that the “right” way
Was not always the best way to achieve the image you wanted.

I am an intensely geeky individual, with a deep love of science fiction.
Gramma loved PBS, so I grew up watching Doctor Who and Dark Shadows on summer afternoons.
When Doctor Who restarted in 2005, I knew the stories, the incarnations of the Doctor, and the old villains.
I grew up with a Gramma who watched with me, and then chase me around the yard with a whisk in one hand and a sink plunger in the other, imitating one of the robot villains.

I love the sky, day or night.
I always know the phase of the moon.
Because of Gramma, I can look at the stars and point out Cassiopeia, seated on her throne, or the Pleiades, and tell you their stories.
She taught me to always look up.
She loved satellites crossing the sky every bit as much as she loved shooting stars.
She taught me about space and space exploration.
During the day, she always looked for shapes in the clouds, and would make up little stories about them.
I still do.
On days like today, she would say that God had pulled a blanket across the sky.
I can’t tell you how many hours I spent with her, when I was young, laying on our backs on the pier at Bath Creek, looking at the stars or clouds, and listening to the water lapping at the pilings.
It’s still one of my favorite sounds, to this day.

About that pier.
She taught me the joy of running, full speed, down the lawn and right off the end of it.
Just jump.
From this I learned that you don’t have to always see what is waiting for you clearly.
I also learned that the pain of jellyfish stings is temporary, and will be followed by ice cold watermelon from the cooler, always with a sprinkle of salt.
Just like hers.

I might not dress like anyone else, or make the same choices, but I’ve always known that Gramma loved and supported me, no matter how strange I might be.

She taught me to argue, just to get a better understanding of a situation.

It was a privilege to be able to spend the last two and a half years with her.

She was simply the best Gramma for me, and I will miss her forever,
And always carry her in my heart.

Doorways, Sadness, the state of me

Every doorway is a choice, every choice is a doorway.

This is a key piece of my personal philosophy. I am a result of my choices, as are you. I am, at heart, an existentialist, constantly searching for some sort of meaning, that I'm not even sure exists. I identify as a witch, I firmly believe that some magic is science that we don't understand yet. I also believe that visualization is a powerful tool that can appear to be magic, if our belief in self falters. Much like my relationship with my vanquished loved ones, my relationship with certain deities is quite conversational. I fully realize that they are representations of aspects of things that provide focus. I follow no defined path. The deities that call to me are from vastly differing pantheons, but quite a few of them are associated with doorways and crossroads. Anubis is usually associated with being the Egyptian god of the dead, but he is also the god of divination and doorways. Death was a doorway to somewhere else for the Egyptians, after all. Papa Legba is the Keeper of the Crossroads.
I speak to quite a few Voodou loa, but always Papa Legba first. I have a large Anubis tattoo, with a matching tattoo of Sekhmet. Most people assume that it's her sister, Bast. Bast is a motherhood goddess. Nurturing and caring. Sekhmet is a war goddess, goddess of wrath and vengeance. The only way to stop her vengeance is to mix beer with the blood she has released into the streets, so she drinks it until she passes out. Sekhmet is to remind me to slow my roll.

Doorways. Each is a choice. Doors can be opened to something new. Doors can be closed, to keep one hidden or sheltered. Doors can be opaque, translucent, or transparent, just like choices. Doorways are deeply mystical, to me. I speak in my head to Anubis and Papa Legba, to articulate needing help with choices.

I am deeply unhappy, and catastrophically unfulfilled, at this point in my life. I made the choices that got me here. I do not know how to get out in a satisfactory manner. I take care of my Grandmother. I am her only caretaker. I receive exactly zero income from this. I pay the bills from her social security, which leaves very little. I am poor. Devastatingly so. Several friends unexpectedly gave me money in December, which allowed me to get the final heaters that we needed for the winter, and restock basic pantry necessities. I am grateful beyond words. Truly. I am left, now with a series of choices, from here.

Do I find a job, to bring in money? (I am looking) If I find one, then I leave her alone for part of the day, putting her, my pets, and everything I own in danger. Her dementia is advanced. Also, I could face neglect charges if anything happens to her.

Do I focus on making my jewelry, and trying to sell it? Like anyone who makes things, I have stuff, still, collected over years, to keep creating. However, it doesn't seem to sell. I know that I'm supposed to keep trying, in the face of complete rejection of my craft. If I wear any of it, people ask where it came from, I give them cards. Nothing. I have sold a couple of pieces, but not nearly enough. I am going through the process of getting what I have out there on social media, again. Making things brings me some amount of peace. I can't start an Etsy store, because of money. I have to do everything by PayPal, which I'm okay with. I don't even have Netflix, because I can't guarantee having the $10 or whatever, in my account each month, I definitely can't do Etsy fees. I am looking for places to carry it, in boutique stores, but that requires gas money and such. Vending events needs upfront money. Unfortunately, and not melodramatically, food comes first, these days. There are many days a week that I never even get dressed, and I go nowhere at all.

I have tried to do the state and federal forms for all kinds of assistance, everything that's been suggested to me. I can't even fill out most of the forms, because a lot of the info needs to come from a woman who can't provide it. I need a lawyer, I guess? That needs money. Find my ombudsman? I've left messages and sent emails and I get no answer. Call this person...I promise that I have tried. I don't know why I can't make it work, I promise you that I feel really fucking stupid, so I don't talk about it much, anymore. The dismissive answers I receive feel really judgmental, sometimes. I'm aware that I'm failing horribly. I know I chose this, but now all of my decisions involve, fully, the welfare of another human, and now I feel just as abandoned as she doesn't. It's just like having a toddler that remembers being completely in charge for forty years, with zero concept of how much she has changed.

My personal life is fairly nonexistent. I feel like no one wants to really spend time with me. I can't really afford much, anyway, sometimes not even gas money. It's weird for me to contemplate how many people are leaving facebook. I understand the reasons, I do. But, then, those people will just be gone from my life, as it's most of my social interaction.

So, I'm looking for doors, and contemplating the consequences of going through them. My drug of choice, that brings me peace and clarity (and isn't a drug or a substance at all) is unavailable at the moment. I dance. A lot. Around the house and yard, which is great, but isn't what I need. I see exactly one person, other than my Grandmother or Mom, regularly. One of my oldest and most consistent friends. I try for once a week, to get that hug I know is coming. It costs me nothing but gas, and the smile I get upon arrival is everything, and is holding me together right now. It's not like I'm turning down invitations.

I know I'm sad. I know it's unpleasant. I'm doing the best I can from being squished between a rock and a hard place. I know my best isn't good enough.

I know.

A Typical Day in Dementialand

I wake up around 7:30 every morning. Well, to be honest, the dogs wake up around 7:30 every morning, and they are leash walked, so that is when I get up. I open Gramma's bedroom door to glance in on her, and I usually get my first "What?!?!" of the day. This happens a lot. This phenomena needs a bit of expansion, this "What?!?!?!" that haunts my days and nights and rings through my head when I sleep. It seems such a simple word, one oft repeated in daily life. Gramma says she has a hard time hearing, but she doesn't, I took her to the specialist to have her checked. Her problem is all in cognition, not aural at all. She simply doesn't understand what she hears immediately. Generally, she understands about 6 beats later than most, if she gets it. (Some things she swears are completely alien, more on that later.) This simple word, necessary for everyday life, is not merely muttered as an inquisitive, it is screeched, loudly, generally while I am mid word answering the very question at hand. It has a peculiar, nasal, impatient, angry parrot, nails on chalkboard quality. I probably hear it a hundred times a day. It is always grating and makes me clench my hands, or roll my eyes if facing away. It's always very loud, as if she can drown out her own confusion. I do one hell of an impression of it, but I probably won't do it for you, I generally only say it that way to my Mom, who will then, gently, lovingly, slap me about the back of my head. Around 9:00am, the lady of the manor rises from her bed, puts on a robe, and shuffles to my door. My bedroom door is directly across the hall from hers. She greets the dogs "Good morning poochie! Good morning poochie! Hey poochie!," then looks to me, I spend most of my days in my room. So, I'll be sitting in bed, looking at my computer, reading my Kindle, playing games on my phone, something along those lines, drinking coffee. She'll ask what i know good, what day is it, anything she should know, anything going on, in rapid fire succession. Generally, there's not much going on. If it's Wednesday, her friend Jane will pick her up for bingo and lunch at the senior center. The senior center has Meals on Wheels lunch every day for qualified recipients. Most days, she does not want to go, but she loves bingo on Wednesdays. They each bring something to offer as a prize, a trinket, a book, candy, an orange, etc., and winners get to pick from the prize table. I finish my first (or second) cup of coffee and go into the den, where she has made herself a cup of coffee and settled into her recliner with the local daily paper, which I brought in when I walked the dogs. I'll ask what she wants for breakfast. When I first came, two years ago, now, she was still driving and cooking for herself. She could spend a night or two alone, she had been living completely on her own, up until then. Honestly, nobody really saw how bad she was, because she has always done stuff for attention. She is loud, and brash, and an attention whore, she always has been. She's also always been one of the most completely selfish and self centered humans on the planet. I got it easier than most, because I was her first grandchild, I was golden. Her second grandchild is the only boy, and blind. She is not a fan of the mother of my cousins, and was pretty disdainful, or downright mean to the youngest two. I went out of town for a couple of nights, when I had been here for a few months, and she managed to drive herself into town, get lost for hours, and lose $200. No more driving. We were getting calls from bill collectors, so I took over paying bills. She had gotten herself into a lot more financial trouble than anyone realized. She can't cook, because she almost burned the house down with a fried egg. Twice. So, I make her oatmeal, and/or some toast. Mom usually boils eggs for her, and leaves them. I can't even keep raw eggs, because, as she says often, "I'll damn well do what I damn well please." Not that I know how to cook an egg, honestly. I don't eat them. She reads the paper and does the crossword. If I'm in the den, I answer her crossword clues, if she asks. It makes her feel good the next day, to see how well she did, when I help. About fifty times a day, every day, I hear "I guess I'm worse than I thought." She'll get a phrase in her head, heard on tv, or read, and she'll say it over and over. She'll ask me to explain it, and then swear she's never heard of such a thing. Like corn dogs, or summer sausage. She'll ask to to explain, and then screech "what?!?!?" at ear splitting volume when I'm about four words in. I'll start over. She'll shake her head. I'll explain it again. She'll shake her head. She'll pout, and tell me it's not her fault, she has dementia. I am far more aware than anyone on earth, Gram, I really am. She eats very small meals, and complains about how big every single one is. Every single one. Big spoonful of mac and cheese? Oh my god, it's so much! Unless it's sweet, she never runs out of room for dessert. She'll ask me to do something, then get mad that I've done it. She doesn't bathe if I don't tell her, and sometimes that's a fight. I am responsible for all of her meals, which is fine, I can make sure that she eats enough protein. Most days, I'm in the house with her all day, or she's out running to the store and such with me, If I can get her to not look like a hobo. She was never very girly, but she has always been vain, until this. True story, she got married in a grey skirt suit, which just wasn't much done in 1949. Every day is a battle in which everything I do is wrong. My Mom comes up every Saturday to help. They have never been close, at all. I am the only member of my family not born in Eastern NC, because Mom got pissed off and moved to Georgia when she was 19. My uncle is just like Gramma. Selfish. Entitled. A pathological liar. He has a son just like him. My female cousins help some, but I know they don't feel it's their responsibility. Once Gramma wasn't good for free child care, they pretty much let her to be. She's not my responsibility, really, either. I just believe that you don't get rid of people, and warehouse them when they are inconvenient. I will be here, to keep her in the house my Grandaddy built for her, as long as I can. I had a part time job, for a while, but my boss became ill. I'm trying to find another that I can work and still care for her. I am out and about at night, sometimes, because of all the things, she is not a wanderer. She goes to bed around 5, and stays in her room until about 9:30 am. To say money is tight is a hysterical understatement. I'm doing the best that I can. Which isn't good enough, but I'm still trying. This post didn't go where I expected, but there will be more Dementialand posts in the future.