It's kinda like that

I’m up way too late, haven’t posted in forever, and notice a message on Facebook from an admin of a group called “Memory People.” Over 14,000 members, looks like a really cool group of people to get support and advice and overall just a place for another to listen to you sometimes.

This is written in the description of the group:

“We welcome anyone, even if you're not directly touched by dementia or a memory impairment. You will find knowledge and awareness here.”

Despite this, the admin greets me, and then inquires about my interest in joining the group, and whether or not I’m taking care of someone with dementia. I then received a message about an hour later asking me to send my request again.

Apparently my request was denied the first time around. I can’t help but feel my obvious young age was a major factor in why I was asked about my personal reasons for joining the group. It’s already a crushing blow to me that everyone I’ve met and spoken with who are going through dementia with a loved one are at least 30 years older than me. I feel closed off, alone, and angry that not only is this happening, but that I have to go through a lot more of life without a mom. Everyone else at least got a few decades of happiness. 

Maybe I’m wrong and too tired and the admin message is just a “formality” that they go through for everyone. But did they do that over 14,000 times is the question... 

A Revision:

Better late than never, right?

I don’t have to think about it long to realize why I’m still so angry and frustrated. It isn’t hard for me to understand because I know that part of myself, if nothing else. My reaction to injustices to my friends and family has always been the same: I seek out the problem person and I proceed to find any way possible to display my new-found hatred of their guts. When my sister found herself briefly kicked out of her band in high school I did nothing but stare daggers at the lead guitarist and singer. I have a distinct memory of a daydream wherein I lobbed my heavy textbook straight at his face. He had hurt my sister, and since she wasn’t going to respond in a manner I saw fit, I’d make do with my way. It isn’t a revolutionary means of protecting myself or those I love, but it’s me.

The same applies to my mom. She had a rotten start at life from the get-go. Her mother died of cancer before the age of 30. Her father fell into dangerous addiction habits, finally culminating in the loss of custody of his kids after he brought out his shotgun and pointed it around the living room one unforgettable Christmas morning. From there my mom and her sisters moved in with their aunt and uncle, who already had their own kids.The house was stuffed to capacity, and her aunt was not an easy woman. My mom left home right at 18 with no support, no one to fall back on. Until recently, I kept forgetting that she never made it through to a college degree because she ran out of money. She never lacked in knowledge. 

It never occurred to me that life would be so unfair as to rip away her golden years after so much hardship, of which I’ve only grazed the surface. But it did, and I hate the universe for it. I want to throw books and crayons and chairs at the cosmos and scream at it. It isn’t fair, and when it’s late at night and I’m trying to pull an answer out of the darkness, the only response I get is, “I know.”

My mother used to have such a way about her. She had this elegance and grace in the way she talked and walked. She was extremely competent as a legal secretary and took great pride in the work she did there. When my sister and I were younger our parents didn’t see each other much. Dad would work during the day as a limo driver and my mom would work the night shift at the law firm. She was there in the morning to wake us and make breakfast and drive us to school. She was very involved in our academics. If there was a chance for her to help out in the classroom or chaperone, she was there. From a young age I was taught to make eye contact no mater what and to smile at others. It’s because of her that my sister and I can say we’re bilingual; she found out about a successful bilingual education school and insisted to my dad it was where we needed to be. To this day she believes we got into the program solely because of how adorable we were, and that the administrators saw in us a great pair of kids. In the car she would recite the pledge of allegiance in Spanish after we taught her, and we would laugh at how she sounded.

She was a gifted painter, and some of her work still stands in our house. My dad has tried unsuccessfully to get her to paint again. I think she always means to, but time gets away from her. There was a painting she was working on for me a long time ago. Every morning when she got home she would take it out and add a little more to it. It was a painting of a party for two young twins. One day I woke up and got angry because something didn’t look right to me. No matter what she did to try and fix it, I never liked it again. In later years (and in writing this), I’ve felt horrible about it. I regret turning away her efforts, this exhausted mother coming home from work to paint for her daughter. I don’t know what became of that painting. It’s strange to me that this holds so much sway over me compared to other events.

My sister wanted to be a boy when she was younger. Whether it was the blue Power Ranger or Luke Skywalker, my mom made sure she got to be exactly that for Halloween. She bought her clothes typically associated with boys and took it all in stride. She worried of course, as the world back then and the world now still struggle to be accepting, but she wanted her daughter to express her identity in whatever way gave her the most comfort. When anxiety crippled me and I couldn’t stand, I know it must have terrified her. What if I kill someone? What if I take drugs? What if I’m a bad person? What if I kill someone? These questions took root in my mind and I could only grab at my head and cry. She didn’t know what to do, but she held me. 

When I was too afraid to look in the mirror, and sobbed if I forgot my make-up before school she found a dermatologist to try and make all of the puberty go away. He charged obscene amounts of money, but I never knew that. I got to wear black and sleeveless dresses to church on Easter Sunday because they made me feel beautiful and she never once said no. When I thought I was going to die of cancer at the age of 11, she didn’t laugh - she just assured me it was called my period. There were days where she would pull my sister and I out of school to have lunch with her. Years of her life were spent trying to have children. Complications, a miscarriage, and 40 years old and she finally had us. We didn’t go to preschool. She used to say that we were too precious and she took too long trying to have us in her life to give us up to school so soon. Instead, she read us billboards as we drove along, and she taught us the alphabet.

“A is for apple, a-a-a...

B is for baby, b-b-b...”

Our traditional dinner for Mothers Day was a letdown. I spent the entire 45 mins of our dinner trying to get everyone talking and include my mom to no avail. Naturally I didn’t have a wide variety of options when it came to asking my mom questions that she could answer, so my strategy was to ask questions my dad could respond to that my mom could listen in on and speak up with. My dad spent the entire time watching the television in the restaurant and giving cursory responses to any questions or conversation starters I threw out. She got confused with her jacket and needed help fixing it. Our car ride there started with her telling my dad to shut up over something inane and the car ride back consisted of her talking about how dangerous the apartments on the street were. At least the food was good.

In other news, my sister is preparing to make a trip out here so we can begin the process of one of us becoming a medical proxy and guardian for decisions concerning my mom. Needless to say, my dad won’t be on board with this. His track record of denial and continued resistance in doing what we need to for mom, however, do not give my twin and I the faith we need that my dad is the right one for the job. Considering we don’t even have a definitive diagnosis of what kind of dementia after around 4 years of this, the sooner the better on this front.

I have no idea what the hell we’re getting ourselves into. I need an adult. Mothers Day post dedicated to my mom still coming, but it’ll be a day late.

My neighbor and my mom’s best friend, we’ll call her Sassafras, has been nosy and obnoxious since forever. Her obsession with reminding everyone of her granddaughter’s achievements has yet to dull. She’s never been my favorite person, but I’ve been humbled by the patience and care she’s shown my mom. I’ve known for years that my mom vomits everything to her, including her anger and disbelief at how she could have popped out such an ungrateful and terrible child as me. Sassafras has been aware enough to realize my mom has no actual idea what she’s spouting most of the time, but it seems a little has rubbed off on her after all.

"Don't forget it's Mother's Day this Sunday."

“I don’t think I’m allowed to forget,” was my pointed response. After that I promptly changed the subject to inform my mom that the air smelt of rain, and remind her that there was an umbrella in the backseat if she needed it. May is my mom’s month. Mothers Day, her birthday, and my parent’s anniversary are all squashed into May. I have come to dread the month, as family disagreements tend to gleefully strut about during special occasions and my mom is generally extra sensitive about arguments and the like. The last few years, however, have been more about trying to act like things are normal and okay, for her sake. When I think about it, even a little bit, I really did deserve that comment.

Up until the last few months, I have had very little patience with my mom. It was common for us to come home steaming mad at each other. There were days we came into the house yelling. My dad, a pacifist with his family, but ardently aggressive with most everyone else in his life, would often sit in his armchair, set his jaw, and ignore us. Sometimes, he’d walk into his office and shut the door. If the commotion was bad enough to distract or impede his night in any way, he’d usually pull me aside, either later that night or the next day, and chastise me for having been so juvenile with my mom, for not having managed well enough. I've always had a temper, and that still doesn't jive well being with my mom. She is essentially a walking minefield, where the most insignificant comment or action can upset her.

The worst was when he'd send me a curt text message some time while I slept or while I was at school, outlining my stupidity in having fought with my mom, yet again. While I’m not sure I’d go so far as to say my twin is the favorite, she definitely provides my dad with a lot more laughs and conversation than I ever have. I’ve mostly outgrown the need to receive validation, but it’s still something I feel aware of when speaking with him. It would make me happy to see I got a text from my dad, only to then find out it was him bitching at me about something. As teenagers, my sister soared in popularity with her skills as a musician, and this provided my dad with ample ways to bond with her. I in turn found out I wasn’t as smart as mommy and daddy always told me I was - study habits, unfortunately, were not heavily enforced by either of my parents. I more or less gave up on school and found myself grounded for months at a time. My way around it was to simply stay up until my parents hit the hay, and I’d do whatever I wanted. Now that we all have had some distance, it’s apparent my mom was starting to have small problems even back then, along with a whole slew of (now) more readily apparent family problems. These, of course, are issues my dad does not acknowledge. Our one shot at family therapy several years ago ended so badly that my sister felt compelled to write a somber poem in memory of it.

I’ve found it’s been hard to write anything down lately. I realized that I wasn’t able to write - it was simply chaotic and confusing. My thoughts make connections to things that simply can’t make sense to anyone else, and I hate making ugly writing. I know it’s not always going to seem beautiful to others, but I need it to be beautiful for me, and I need it to make sense of the mess inside of me. It needs to be poignant and blunt and powerful to express living with my mom. It isn’t lately. I write one sentence and in that time I’ve discovered some new thing that has me upset or confused or questioning.

If I had to guess, a lot of it really started with this picture. I was waiting at the doctor’s for a random appointment and my mom sent me a text message asking if I wanted her to buy this for me.

“It is large and is clean and nice.”

I’m 24 years old - I loved stuffed animals when I was little, I loved Build-A-Bear, and the hundreds of Beanie Babies my grandmother sent to us over the years are too close to my heart to sell. Still though, I’m 24 years old, and my bed is little more than some disheveled nest where I sleep every night. Stuffed animals have had no place on it for years. I’ve moved on to actual animals that sleep with me every night, and truth be told, they’re a far better comfort. It made me sad when she sent me this text message, but I don’t want to tell her no. 

She’s trying to be sweet and wonderful and giving as a mother, even if her idea of a present for her adult daughter is a stuffed animal from a thrift store. She just asked me if I wanted to go to the pet store with her and was so excited to hear me say yes. 

Today I’m drinking a smoothie for dinner, yet again, because there is little to eat in the house except smoothies, cereal, and peanut butter jelly sandwiches. My mom buys things none of us eat and my dad only ever goes to the store to buy more milk and eggs. My entire goal in life is to get a job I can, at least, semi-love so that I can finally eat more solid food and stop eating like a third-grader. We’re not in dire straits financially (that I’ve been made aware of), but it seems cutting back includes stretching out condiments to their expiration date so we can slather them on pieces of bread for lunch. It’s depressing to accept that I have come to rely on my mom’s random spending at Trader Joe’s, because at least some of the time she buys food I enjoy. Then there are the days where I open our freezer and she’s stuck a yogurt in there for a couple of weeks and we’ll never know why she thought that was a good idea. My dad forbids me from buying food I enjoy and tells me I need to be more responsible. Cool, I can do that, but why does the crazy lady get the chance to buy 6 frozen pizzas (margherita ones, which I don’t like) and a bunch of edamame that only she will eat? Can I please buy some goddamn veggie wraps? Who cares if I didn’t make it myself? Maybe I’m just a self-centered prick, but for fucks sake man, why enable the crazy lady to eat popcorn and instant coffee every night? 

Today I’m listening to my mom strum a guitar and sing off-key. I appreciate my dad’s efforts to teach her and bond with her, but all it does is absolutely destroy my resolve as a daughter. I can’t encourage activities that make her feel like everything is okay, like she’s improving. Sure, that’s more about me, and I know that. It’s not like she really knows the depth of what’s going on, and she never will. Having to sit there and grin and encourage and smile and reciprocate serves only her well-being. I feel one of the more heart-breaking things about her condition is that she’s never going to know just how damaging it’s been to our family and to my outlook on life.

Last night I went downstairs to pee and grab a glass of water. My mom had been randomly cooking something about an hour before that, so now it was around three in the morning. I wasn’t alarmed by the burnt smell in the kitchen, as her burning things is pretty common these days. When I passed by the stove I felt heat, though. Turns out she had left two burners on. I checked to see that nothing was in the skillet, turned them off, and then by pure chance turned towards our old oven and realized that was on, too. Weirded out, I turned it off.

My mom let out a few loud snores during this rather bizarre moment. She was curled up on the couch in the living room next to the kitchen with the dogs. The kitchen smelled really burnt now, and not one, not even two, but three fire hazards had been chilling at the on setting for an hour. Had I not chosen to be irresponsible and had instead gone to bed a couple hours earlier like I usually do, they would have stayed on for another four hours until my dad woke for work. If ever there was a time to be thankful for a weak bladder, it was last night.

Paranoia has been a dominant part of her personality since before I was born. If someone pulls in behind us she goes around in a random maze in the neighborhood so the potential criminal won’t know where our house is. She locks the door even if she is going to step out ten seconds later. I wasn’t allowed to submit an employee application to a Subway because it was “so deserted” next to a Starbucks and right in front of a busy street. This sentiment, of course, had everything to do with a video she had seen on the news of an employee at another Subway being murdered during a robbery. She has completely fixated on the terror and danger of coyotes and raccoons moving into our neighborhood; sometimes I can’t tell if the dog shits in the house because she forgot to let them out or because she refuses to let them out for two minutes in the backyard without her there. Before that, it was her thinking the neighbors were dangerous drug dealers, and then freaking out about a string of robberies not even that close to us. She once viciously told me I would be raped on the metro because I wore a skirt, black tights, and a white tunic top with a black bandeaux underneath. She was conned into buying a house alarm system we have used as much as zero times ever since it was bought. Then there’s the late-night A&E murder shows - this got to a rather frightening point when I found my mom drunk and crying one night while watching a show about how a woman had plotted and succeeded in killing her husband.

I woke my visiting sister up and she implored my mom to turn it off, to which my mom eerily replied, “This woman killed her husband. I like watching them get caught. I like watching them get caught.” She said it with such conviction and simmering rage so as to scare the crap out of me. At that point, my sister and I were afraid if we went to bed we would wake up to see she had killed herself or something. Her drunkenness and crying were the results of her somehow accurately deducing that my sister, my dad and I had gone out to a bar earlier in the evening with the intention of discussing her failing mental health and how to move forward. Unfortunately, our dad let us down. Turns out he just wanted to rant really, really badly about how much harder he has it dealing with my mom. Yeah jackass, it’s a fucking competition.

With all of that paranoia locked inside her mind, my mom manages to be surprisingly reckless. She texts and rummages through her bulky, stuffed purses while driving. If I ask her to stop she snaps back that she can do what she wants. K mom, break the law and enter us into the growing pool of statistical deaths due to tragically distracted drivers. She goes out and then comes home and can’t tell me where she’s been. It’s unacceptable for me to open our back door to let in a breeze or allow my cat to romp a bit while she sleeps yet she lets complete fucking strangers into our house while I sleep.

“He’s a writer. He gave me his card.”

“She’s an old, frail lady who needed help.”

Oh fuck, really? Here’s my card. I’m a writer because I write on Tumblr shhhh but I’m a writer. Old lady? Ever heard of casing a potential target? In fact, that was similar to how the robberies around our neighborhood were being performed. Kid rings door-bell. Kid checks out whether or not house is occupied. Kid calls friends. Kid + friends rob house. She projects paranoid fear and rituals onto us, but it evaporates when it comes to far more dangerous situations and actions that she herself performs. Her perception of reality and how she’s acting in it is completely skewed, not to mention her diminished IQ and functioning skills. My problem is that I have no power with my mom. I have no physical or professional influence I can exert over her if something is going awry. She does what she wants and my dad doesn’t want to hear about it because he’s so busy and I just need to “manage better.” 

I tend to get the kind of reactions you’d expect: some quick throwaway sympathy, a change in voice tone, usually a bit of discomfort. Maybe some awkward drops of silence. I’m not sure people actually understand what I mean when I say that, though. I used to just say I had a family member who had “memory issues at home” and that I needed to keep my phone available at all times while in class. It was all about the memory loss because that’s all my mom or dad have ever said it is for the longest time. “My little memory problem” as my mom will say if she actually gets stuck in a situation that requires her to admit it. I was watching NCIS the other day and realized I started laughing at the portrayal of an old woman with dementia. 

“Your underwear, missy! One can always tell a woman's intention from her panties.“ I laughed at that. And hey, it’s funny. It’s an old batty woman talking about how she wants to see a character’s knickers because she doesn’t trust her. I suppose one could make the case that it’s good I can laugh at that. It’s sometimes good to laugh at something that is upsetting or bothering you, after all. But it was funny because that isn’t dementia. Sure, people suffering from it say things that are anachronistic, they often don’t know everything going on, and things that make sense in their head sound completely zany and out-of-touch to us. It’s never funny, though, and it got me wondering as to how well people actually understand just what dementia is, and what it does to the sufferer and those they love. 

Dementia is coming home to see that both of the toilets were stopped up over the course of the day because she forgets to flush the toilet at reasonable intervals. It’s waking up to see her bed littered with the contents of three different purses; she lost something again. It’s having her face light up when I open a door for her because she thinks it’s the first time; for her, it is. Opening the fridge to find three different kinds of milk. Opening the fridge and having it too full of food that will rot because she went to the store again when no one was home. Telling your dad that maybe we need an in-home nurse, but what about the money? Fruit and vegetables rotting on our table because we have too many. New shampoos and toothpaste and lotions and tanning creams when you still need facewash. Forgotten passwords and her meek words crawling up the stairs asking you to fix her email because she can’t figure out how to work it. It’s begging her to stop watching shows about cops and murderers and gangs because it only feeds her paranoia. Waking up to see the dog shit on the floor again because she forgot to let the dogs out; hating yourself for not being woman enough to start doing it yourself. Hiding bottles of wine because she forgets when she has a glass. Having her forget where the grocery store is, even though it’s only one minute away from your house. Hating yourself for not knowing how to drive. Hating yourself because you know that when you take that step you’ll have to take over all of it, and you know you don’t want to yet, and wondering if it’s genetic, a blame game of who didn’t notice soon enough, who wasn’t there when she needed it, utter crap straight out of life’s rancid crapper.