What being a disabled millennial like

I guess it’s been exactly a year since I started blogging. I started writing with the intention of gaining some perspective in my life and it totally worked. I’m right and everyone is terrible.

At the start of the year I had my trusty neuromuscular disease which makes it impossible for me to physically care for myself, my mother’s Alzheimer’s had gotten to the point where she could no longer physically or mentally care for herself, auntie had been in my life for a few years helping me try to get her medical help and deal with the endless paperwork x2 that comes with disability. She was the only family member that even pretended to make an effort in my life, but the stress of it was obviously getting to her.

And I was losing my god damn mind so I started this blog.

The major thing I realized is something I already thought I knew; being disabled is like being in a completely different reality that normal people only have some vague sense of, like gravity but really can’t comprehend. What I specifically learned throughout this year, though, is that they willfully remain ignorant because of their narcissism.

That sounds incredibly rude but in some cases I mean it in the nicest way. Some able-bodied people simply never learned that TV isn’t real. When they hear anything about the reality of living a disabled life and how it has nothing to do with your health but everything to do with violent bigotry they try to convince you that any bad situation is an outlier. ABs refuse to acknowledge disability to avoid feeling guilty; those people legitimately don’t know how common and easy it is to step over a dying body while complaining about the smell.

There are some people who genuinely don’t know better and so they are eager to help, impatient for the praise. It’ll get them praise, but they can’t handle it for long.
For my Mormon uncle it was the very minute that I called him to let him know that his sister was sick that he became overwhelmed and he insisted we both be sent to homes. He had no idea why I was so opposed to the suggestion because it wasn’t as if anyone would want to rape me or anything.

I know I heard that clearly because he was screaming it through the telephone.

Auntie pressured me into putting mom into a home and then to make sure I can make no decisions she told them I was mentally ill and all around general liar so I wasn’t allowed to have contact with my mother. After mom got kicked out after week for unruly behavior I found out from the carefully worded discharge papers that she had been raped in the shower. Whether Auntie knew that are not I don’t know but it was the last time I ever saw her.

Up until then, though, Auntie worked incredibly hard to help us but the weight of sainthood became too much. There were multiple times where she would throw my medical cards at me from the end of my bed while yelling at me for not knowing how to love correctly. To her credit, she wasn’t completely wrong.

She said I was being condescending when I constantly apologized for being a burden and then I halted every conversation with the incessant need to thank everyone for just being there. True. It took me being forced into a role-play game before I really understood that.

I like helping people out. I like seeing people relieved and happy when I can unexpectedly provide a solution. I like feeling that I can have at least a slight impact on other people that isn’t horrible.

What I don’t like is people making it weird by being awkward, thanking and apologizing to me every few seconds. When they insist on thanking me it hurts my feelings because it seems like they’re surprised I would do something nice. When people won’t stop thanking me it’s alienating. When someone puts you on a pedestal is not only objectifying but lonely because you’re no longer equal.

What I still don’t understand is what the hell I’m supposed to do.

When I go somewhere I have to get their permission to go. When I do something I have to get their permission to do it. When I eat I have to have proven that I’m worth the waste and produce.

How can I not thank them?

How can I take the risk of not thanking them?

It used to infuriate me and people told me I had no idea what the “real world” was like when the only world they know is Pollyanna’s but now I can’t help but agree. In the real world you don’t have to pretend not to know your friends in public.  In the real world you go to the police for help instead of avoiding them. In the real world you don’t apologize to other people when they hit you. In the real world strangers don’t tell you that your God’s punishment on humanity. In the real world you check the mailbox for bills, paperwork to fill out for permission to live for another month.

In the real world a real person wouldn’t have their healthcare taken away for having an extra $100 in the bank, a real person would be allowed to have more than $2,000. Especially if everything was as expensive in the real world as it is here.

Even after a year finally coming to terms with never getting the promotion to human I’m happier than I’ve ever been in my life.

Although I have to fight for it every day I’m still living in my home, unlike my ancestors. Even if I’m not allowed to own it.

Also unlike my ancestors I’m trapped inside my bedroom but I have the technology to talk to people all over the world. Not people from the real world but people like myself who are going through the same things that I am. I never know how long I have them but thanks to the sheer number of us I’m never alone. More and more of them grow exhausted and are forced to commit suicide but it’s a less lonely than it would’ve been even just over a decade ago.

We have the ability to communicate and create things as long as it’s not in exchange for currency and because of that and realizing that there are people in the real world who do care about what’s going on in the outskirts of The Real World™; AB and NT people my age, millennial’s who have helped me survive with much more dignity than any other American generation has before them.

I’ve proofread homework in exchange for dinner. I’ve written essays on Deadpool in exchange for toilet paper. I’ve reviewed movies for hair dye.

I have no hope for society itself but I have hope for humanity now that I know that there are people unlike my family but things haven’t changed enough for me to even have a conclusion to this post. Still, I have the ability to make this post and as pathetic as it is I’m thankful for that.

Diary: IHSS should just drop the I and H

When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it. 

In our last episode I said I was done. Well, I’m even more doner now.

suicide-gif_zpsgmt7pcggAfter all this time it seems that auntie and I finally have something in common; we’re both done. But our “done”s are pretty different.

Remember Auntie said she was going to take mom to lunch? Of course you don’t. No one is reading this shit. Well guess what, when I asked her what time she went on radio silence.

Then I tried to explain the spoon thing again despite the fact I know it throws her into a rage. She literally disowned me the first and only time I gave it a subtle shot.

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Did that sound condescending?

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I really tried my hardest. This is the first text I sent her without running it by anyone to proofread for anything that could be construed as insulting. I just went with how I write formal emails. Unless she wants me to speak in AAVE I have no other options.tumblr_n66se03AA91rc7zl1o1_400_zpsuoig0sqk

And it would just be my luck that she would trick me into something racist like that.

She recently texted me asking for the infamous door alarm.

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That, apparently, was the wrong thing to say because then no one heard from her and like three days later her daughter, whose name I censored first, showed up one afternoon for it but said she couldn’t stay because her kids were in the car. It really made mom depressed because she was so excited to see her. It’s heart wrenching.

So, I guess when auntie said that she was done what she meant was done sticking the knife in but not twisting it.

tumblr_oun3tfW3y81rohg16o5_400_zpsasyoupfcI’m fucking done.

Like I said, I don’t think about my auntie unless someone brings her up but that void was quickly filled with IHSS.

And now I’m done with them.

I still have not heard from my caseworker/social worker. Let’s call her Amy Hoe. The one time she talked to me all she did was whine about how hard she used to work before she “got burned too many times.”tumblr_oqwrniL4sk1u940dvo9_500_zpsiijrkdzq

She did call once but I was here alone with mom and couldn’t get the phone. I then left multiple messages, all sugary and sweet like last time, apologizing for missing the call and I left my phone number, my address, and my email address. Each week. I left messages in every department, trying to find someone who will least call me back about how to get more hours my caretakers. No one called.

It’s been a month.

giphy11 days ago someone from payroll accidentally picked up and told me to call Amy Hoe. I know better than to talk shit so I told her that Amy Hoe said she would be “out on the field” for three months. She insisted and I hesitantly, and awkwardly, said, “um she said she was going to be busy and I haven’t gotten her to call me back so I was wondering who I can speak to instead in the time being?” No dice. “I really do think she was serious about being out of contact. She seemed pretty stressed. I know it’s hard; social work is horrible. She just said she was little burnt out by going out of her way for people.”

Dice on fire.

tumblr_inline_o5n7o8TrGT1t0ihy9_500_zpspfgwuqqyHow is that insulting? I was obviously choosing my words carefully (badly) but the chick isn’t responsible for going out of her way so long as she acknowledges that it was her choice. Bad things always happen to good people.

I’m not dumb, I know this sounded insulting but she was trying to hang up and this is the first I had spoken to anyone in a month and all that happened then was a promise to call me back.

tumblr_os57kgeMbh1rrkahjo4_540_zpsvogskbskApparently they are BFF because she immediately shouted, “she would never say something like that!”

I said, “well she did.” She tried to bite her tongue and said “that doesn’t sound like something she’d say.” And immediately transferred me to someone’s voicemail.

Idea for a movie: IHSS is actually a secret government agency that gas lights the most impoverished citizens as a way for the Illuminati to make turn America into inspirational porn to broadcast to the aliens.

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I hired that caretaker I was going to interview. Let’s call her Princess. She’s in her mid-20s and she acts like it. Savage rightfully pointed out that she was both unaware and reckless with her white privilege by saying, “she’s white.” tumblr_nxz6fnnsYq1r83d7lo10_540_zpsag45xhh5

She really is a nice girl but she actually told me she misses high school.

What do you say to that?

All I could come up with at the time was, “ew.”

So what did that payroll lady do? She connected me to some guy’s office whom, she made sure to point out, wasn’t there so I would have to leave a message. It turned out to be a supervisor who called me back pretty quickly and was very apologetic. He seemed nice but I’m smart enough not to trust anyone. Ever. About anything. Ever again. He helpfully told me things that I should ask Amy Hoe about when she does a home visit, which would be soon or he would do it himself or… Oh, Amy Hoe never came out and never spoke to me other than that one phone call in and entire year? Then he looked at my file to see who had come out and it was that guy.

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That guy, that superduper supervisor everyone at IHSS stands on their desks and recites O Captain! my Captain! to was the one that came out. The one that told me that IHSS would give me back pay and lost me thousands of dollars which, of course, is on one of my maxed out credit cards. He laughingly suggested that that guy should be the one to come out again.

I emphatically asked him not to reprimand Amy Hoe, twice. I’m not trying to start any trouble. I’ll do whatever. I’d suck a dick for some basic human rights.

Yesterday the was Friday before Labor Day weekend and I was over with the world. This is always a hard three day weekend for me and not just because of the labor irony, this is the weekend they used to play the MDA marathon but thank God this year Jerry Lewis is dead.

tumblr_ng32ibpEP71t7lixko1_500_zpsoxiogzipI meant to be facetious, the only time I ever knew it was Labor Day weekend was if someone told me directly but this year it was different. Maybe because everyone left so this was the first weekend in a long time that it was just me and my broken wheelchair.

Did I mention my wheelchair is broken? It’s been broken since before I even started this blog and I’m still fighting with insurance. I’m extra crippled so I use this electric chair and now it only holds a charge for about an hour or two of actual movement; this is a big reason I only eat once a day and even then sometimes I don’t bother. BTW, this is why you should be kicked in the kidneys if you’ve ever used the phrase “wheelchair-bound.

giphy 1_zps24wdkwdbDid I check the battery? Of course I fucking did. That’s as stupid as asking someone if they restarted their computer. I’m a professional cripple™ so I think I know what I’m doing.

Except that I rolled the dice and put out for a new battery on my credit card when the insurance wasn’t going to do anything, then it turned out to be the actual wheelchair that had finally died.

My wheelchair is over 10 years old.

tumblr_nyrq0aa42C1u9127so1_400_zpsrdaseelnYou are supposed to get a new one more often than that but the last time I needed to replace this wheelchair this mother fucker the salesman did exactly what I knew he would, exactly what all of those people do, fucked me because he was on commission. He ordered the most expensive thing and added everything he could despite my specifically saying not to put anything on the order after it was out of my sight. I couldn’t even sit in the thing because as soon as I did I would slide out. There was so much machinery around me that I couldn’t have driven it if I wanted to. I insisted he take it back with him. I had to yell at him before he took it. He told me I couldn’t get another one and he was right.

They told me I had to wait five more years and here I am.

Here I am…

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I called This Dude at 3 o’clock Friday morning, spit out all the serial numbers stamped on me, and explained why I was up at 3 o’clock in the morning. My caretakers have too little hours. My mom is getting worse. I’m getting worse. I have to stay up all night to keep mom from leaving the house even though all I can do is sit in front of the door. With no assistance I hadn’t been able to go to the bathroom in 12 hours.

Then my voice broke so if I had pulled off sounding like I wasn’t crying it was game over. I quickly asked him to call me back and got off the phone.

Capture

 

This “nice guy” never called me back, of course. No one did. It’s been a little over a week.

When I first got that call from Nice Guy everyone was so excited but I kept telling them not to get their hopes up and lookie lookie here, I was right. It wasn’t just pessimism. But pessimism had a lot to do with it.

PS. Because of some paperwork auntie took from me back in what they tell me was May I owe Social Security $800 for the error and my disability is still $3.

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This a gas chamber reeks of pessimus.

Diary: Teaching my mom to be disabled is not going to work

I was never born with any so I don’t have the ability to advocate for her unless I have someone with me advocating for me, repeating my words out of an able-bodied mouth

I was emailing a friend so my speech recognition software was on when my mom came in the room so it recorded what I said to her which was

“You can do what you want you can do what you want mom you can do what you want mom can do what you want mom”

That isn’t an error, I actually kept saying it

She’s having a hard making decisions but at the same time she’s getting used to everyone making decisions and speaking for and despite how badly she always dealt with my disability I’m trying to use my experience to make becoming disabled easier on her. But times like this I don’t know if that’s the best idea.

She was trying to decide where to sit, the couch or the rocking chair. To me it’s an insignificant decision but it gives her overwhelming anxiety and she’s becoming prone to anxiety attacks.

She has a little bit of an ability to recall things if you make them simple and repetitive so I’ve been telling her “you can do what you want” in hopes that when I’m not around she’ll be able to remember “I can do what I want.”

Even though I know she can’t. Not because of her disability but because everyone is stripping her of her autonomy and I was never born with any so I don’t have the ability to advocate for her unless I have someone with me advocating for me, repeating my words out of an able-bodied mouth.

I’ve been able to protect her relatively well but when auntie took her to a home it wasn’t a week before she was raped. It was a month before I found out when they finally gave me the paperwork explaining why she was getting kicked out for being too fussy.

Diary: First

He cut me off screaming that i was lying and assuring me that I was completely unrapeable. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over”

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I hate memoirs. If you live a life worth being studied someone will inevitably do a biography on you so stop being so presumptuous. When I started writing (publicly?) people always assumed I was writing my memoir because they say you write what you know and people assume that if you’re in a wheelchair all you know is about extended sitting. When I said no, I hadn’t written my memoir, people encouraged me to try. I have funny stories. I have scary stories. I’m vaguely personable. Obviously everyone would love to read about my life.

What would really annoy me is that I knew they wanted me to give them some Secret Garden shit. No one really wants to know about disabled people’s lives. I spend 90% of my time and energy trying to keep able-bodied people sheltered from disability. All disabled people do. Well, unless you’re one of those douche bag guys that fell down while bicycling and now tours elementary schools to tell kids that you’re still a person.

My opinion changed when I suddenly became an adult one day. I saw young teenage girl on tumblr complaining about a specific type of oppression in schools of disabled kids that I had also gone through and at first I was so excited, I so rarely see people who had childhoods anything like mine. But then I realize that she was a child, that she was going through the very thing I had gone through nearly a decade earlier and I felt responsible. I know about the horrible things that are going on and I know that children out there are suffering these things right now, and they have no idea what’s coming next, but I do.

But my life is a shit show, what can I do? I live in abject poverty. I have a terminal chronic illness. I have no resources beyond what Google offers. But I started posting little anecdotes about myself and what it was like growing up disabled and I was overwhelmed with how relieved disabled people were to see something relatable, as I had been, and the able-bodied people were aghast.

This micro concern, to me, came at a time in my life where the world had come to an end again.

My mother and I never got along, my father raised me and I was very close to him but a week before I turned 13 he was killed in an automobile accident. At that same time my mother got laid off and my father’s parents had just died so what little glue that did hold the family together was now completely gone so we were left pretty helpless. Of course, that’s when I get informed that my spinal atrophy had caused me to have scoliosis so bad that my spine was bent over and was crushing one of my lungs. I either had to go in for multiple, extensive, dangerous surgery or I could wait about a year and slowly suffocate to death.stock-photo-27171500-child-handicap-problem_zpsd3a29371

That was the beginning of my first rock-bottom.

My second rock-bottom was right out of high school when I started to get stomach pains. Excruciatingly long story short, I had a bacterial imbalance from some bad food but the wrong dosage of medication was given to me at the hospital and in a Rube Goldberg style medical care in attempts to cover up mistakes that led me to be on my deathbed. My intestines had been all but eaten away in my stomach was destroyed. Blood was coming from my nose, mouth, and anus. I had a hard time staying conscious.

The third, and most recent, time was when the water and electricity got shut off.

Mom had obviously been developing dementia for years but she refused to the doctor, she said it was simply “old age” which I tried to explain was not a legitimate diagnosis but she felt ashamed and frustrated given how bad our lives had been up until then. The only actual friend I had was May and it wasn’t like she could persuade my mom to do anything. My fraternal family is all local but we had completely split apart after that rash of deaths, I kept in sporadic contact with my auntie L but she was a single mother with three children and I myself was a child for most of my childhood so it’s not like we were really going to hang out or anything. My maternal family, which I never considered my own family because I grew up with my mom explicitly telling me that my dad’s family were losers and I belong to the family, her family was her own. They are a big extended Mormon family and as my generation had reached adulthood everyone was scattered across the country.

One day the water and electricity got shut off and I found a word of unpaid bills for three months that mom had just dumped. When I confronted her she was completely apathetic and said she just didn’t care anymore. Mom was always theatrical and constantly bemoaning her fate so that wasn’t anything new but the apathy was, my mom only had two emotions: anger and suspicion. Apathy meant some major neurological revisions.

Mom had racked up about $20,000 in credit card debt. It’s not like she bought anything extravagant, she just never worked after dad died. She had us both living off of my disability and credit cards. Mom had also bought a used van because I need one that has wheelchair accessible and the old one had broke but this one constantly broke as well. Mom tried to return it but she was under a bad contract and every year we ended up spending a couple thousand dollars to fix something on the car that never seemed to work. So, it’s not like that money went anything fun.

44cb9d16ed7e49cb02a923343f8028f0I took over everything and I covered for mom who was still refusing to see a doctor. At that point she admitted that something was wrong but argued that if she went to the doctor and they diagnosed her as having dementia my social worker would probably take me out of the house and put me in a home because my mom was my primary caretaker. I made it for a while but eventually I was only allowing myself to eat once every three days and it was always pizza because I’m too disabled to cook and they are all we had near at the time. When things got too smelly I would order us new pairs of pajama pants to wear off of Amazon because neither of us could do the laundry.

Yada yada, I made very thorough suicide plans. It wasn’t a dramatic thing. I just worked out what I thought I could do over the next two years to get mom insurance and everything else she would need and then to put all of the affairs in order since mom wouldn’t be able to do that on her own and then I was going to kill myself because I wasn’t going to permanently move into a home. Fate worse than death. I shared my plans with May and she insisted that calling my auntie L and asking for help should at least be on my list before suicide and auntie L decided to step in and help me. She has been the only one. Initially my grandfather paid off one of my mom’s credit cards saying that would count as her inheritance which was incredibly generous and I appreciated that he attempted to help with money since he couldn’t help physically but after that whenever I spoke to him he informed me that I needed to just give up and move both my mom and myself into a home.

He also called on my 30th birthday, my landmark birthday of living with a terminal illness my whole life, and told me how much he loved me and how fervently he and my grandmother pray for my death each night so I’ll be able to “run in heaven”

I would rather sit in hell.

Then?

Then…

Luckily for me, I just had to fill a friend in about all of this so here is the email I sent him:

I81860186b40f850252b5906a491ebd58 don’t know what you know and what you don’t know. I don’t know all of what anyone knows which makes every “how have things been” very tedious. Forgive me if any of this is old news or if I just start being absolutely confusing because my memory and cognitive abilities have taken a nose dive from all the stress.

 Mom has Alzheimer’s and refused to go in for treatment. I was told growing up that mom’s family is not my own so I didn’t go to them for help and my dad’s family who haven’t sent out their cease-and-desist letters yet are just my auntie, her three children that are about my age and their very young children. All of them have extremely busy lives, intense careers and children to prioritize. If I went to any of them for help I would never be able to repay them and it would take time and money away from my cousin’s children. I figured it also didn’t really matter because I was nearing 30 and the doctors had promised me I wouldn’t make it past that so I was trying to bide my time and take over mom’s finances so one of her family members could easily transition into helping her when I died.

Things were beginning to become unbearable. At some point I couldn’t get either mom nor myself to any doctors appointments because the car completely died, we would eat about once every couple days and that tended to be whatever could be delivered to the house. Also, neither of us could do laundry so everything was dirty and so I bought a cheap pairs of pants on Amazon each month. The house was always tidy but if anyone looked close it was obvious that it was dirty and we started getting a bunch of ants. Mom, of course, became more violent than usual and she had already hit the ceiling on verbal and emotional abuse so that stayed about the same. The whole thing sounds crazy but I suppose the situation was a lot like with those women who stay with her abusive husband’s. I literally had nowhere I could go, so literally I couldn’t even leave the house since I can’t get the door open on my own. My mom has been extremely abusive my whole life so I was already used to this sort of thing.

The only person in my life I could actually go to was May but years before when she was going to therapy her therapist advised her to not be a part of my life. People like me always have horrendously depressing lives and May should stop seeing me so she would be less stressed. Without knowing that’s what her therapist said her whole family came to the same conclusion. Of course I won’t tell you why she was going to therapy but it was for something extremely serious and instead of addressing that she was counseled to take me out of her life, although I was totally unrelated and since her family assumed the reason she was going to therapy was because of me, because being friends with a disabled person literally drives you crazy, they were giving her the same advice the therapist was somewhat coincidentally. May went with it, and I don’t blame her because telling her family what had happened just wasn’t an option for her. I feel guilty but there were a few times I regretted forcing her to see a therapist but it’s not like I’m a saint. May took the therapist’s advice and started to distance herself from me, trying to join the circle of friends her siblings belong to whose problems were a lot easier to deal with because they were all healthy and had a lot of money, mostly family money. Then mom kept getting more violent and one day shoved me out of my wheelchair breaking both my ankles, my knees, my wrists, and my nose.

So at that point the cat was out of the bag and everyone had some idea that things weren’t going well here, at least that mom had Alzheimer’s and I let her tell everyone that I had simply fallen. My auntie, who is a good person, forced mom to go to the doctor and tried to start the paperwork having an in-home aid while I was living in a home for a while which was a complete nightmare. I’m lucky nothing too bad happened to me because about 90% of women get raped in homes and while I was there it happened to another resident. I didn’t get out of all the statistics, though, because the staff was pretty bad. My casts were removed because they were put on badly so on top of the excruciating pain of all of those injuries and the fact that I was always given my medication late my legs were constantly being messed with. If I couldn’t keep from crying when I was doing something like changing clothes the nurses would yank on one of my broken legs to “give me something to cry about” and one time a nurse then had me down against the bed and asked me if I was calling for my mommy and telling me how pathetic I was for crying all the time.

It didn’t really brother me because I knew that she could never trade places with me, she wouldn’t last a second, but I learned my lesson and never complained about anything and cried as quietly as possible. I also got in trouble because my roommate was supposed to lose weight as part of her rehab but she would steal my meals and I didn’t say anything. Obviously I didn’t want to complain but I also didn’t care because I was so used to not eating and so incredibly sick from the stress anxiety and depression that when I tried to eat I would just throw up. I felt a little bad that I was ruining her rehabilitation but I figure she was an adult woman and can make her own choices. If she wanted more food she should be allowed to have more food.

My mom’s family was informed about the situation and my grandfather said “you both need to just move into homes” aunt ML said “she’s just getting old, it’s not Alzheimer’s and it was just an accident” and aunt K said, “that’s too bad.”

Did you know the thing about aunt K? My father and both his parents died around the same time so my mom got my inheritance pretty much on my 13th birthday. K immediately asked for $10,000 to buy a new car because hers was broken and mom actually gave it to her saying “it’s not a problem because I know if I ever need help you’ll be there for me” when actually she was doing it because she wanted to impress her mother who she believed hated her but when grandma found out she wasn’t happy and said that K was a narcissist and would never pay it back. Before my accident when I was trying to get mom’s affairs in order and pay off these two credit cards she had maxed I had no idea about I got so frustrated that I called K and explained we were in a bad spot, my mom’s credit card debt was ironically $10,000. I asked if she could begin to pay it back, even if that just meant a few dollars a month. She was immediately furious and said that that it was a gift and I was completely out of line; I’m a very petty person so I couldn’t stop myself from saying “Grandma was right about you, she begged mom not to give you the money because she knew you’d never return it” K went into hysterics and refused to speak to me but mom refused to speak to her because she was so embarrassed to be asking for money but we arranged for K to send $50 a month to pay for half of mom’s medication at the time.

This is all relevant later, I wasn’t going on a tangent.

I wasn’t well enough to leave the home but they evicted me because I was there for “rehabilitation” and as I am disabled and will never be “rehabilitated” it didn’t count and my insurance wasn’t paying for it anymore.

Torturous months go by that I won’t give you the details to but eventually I’m well enough to be back in my wheelchair and after a few months of that I was strong enough to do more than just sit or fall out of it so I tried getting back to my attempt at putting affairs in order meanwhile my auntie L was still trying to get any type of help, even Meals on Wheels but when they say you have to spend a few years waiting they actually mean it. Nearly on the very anniversary of my first fall mom knocked me out of my wheelchair again. This time it was an accident because she was having a confused episode. Once again I broke both of my ankles, my knees, my wrists, my nose, and this time I bruised my ribs, had my front teeth broken out, and had the skin scraped off of half of my face. Did I mention at this time I fell out of the car? That’s probably why it was worse. Apparently it looked pretty bad too because there were a few people who saw me even after I was all mended and cleaned up and just burst into tears. I think that’s a bit dramatic, my heart goes out to the Elephant Man.

I get sent directly home because the insurance isn’t falling for it twice and it takes me about half a year until I can get my wheelchair again, auntie L spent the whole time trying to get anything accomplished and nothing ever did. It again takes me a long time to get enough strength to even drive my chair and of course mom had just been steadily declining and she started losing the ability to cover up any type of violence. Super long story short, my aunt found someone who did caretaking under the table for a friends family member and so I hired her. Auntie L had figured out that as long as we have documentation of her pay and her hours that once the government did approve getting some in-home assistance the government would reimburse me. So, I have no money whatsoever but I do have a credit card and PayPal so for about a year I use my credit card to give her $350 a month. She is a nice woman, I understand she was never trained in anything and being thrown into the deep end like that would have been terrifying, so I let her come and go whenever she liked as long as she made sure mom ate every day and did the laundry. We were having no improvement with IHSS, auntie L finally broke down and went to their office in the capital and threw a fit, threatening to sue so they expedited my case. That was a few months ago and for me to be reimbursed my caretaker had to be verified by the government which means she had to have her fingerprints taken and go to a two hour long seminar which apparently cost her $100. It took a couple weeks to get her to finally do all that. The next few weeks we kept waiting and urging her to feel out the time cards so I could get reimbursed, meanwhile I was still paying her through PayPal because she had to send in paperwork she hadn’t yet for her to get her check from the state. She kept making excuses and the thing was she didn’t want to account for the money because she was afraid of what it might do to her Social Security and was afraid of paying taxes.

My mom’s family never came to visit and for some reason think I’m lying that mom has Alzheimers because until recently she could hold a very short phone conversation that they could justify as her just being slow and forgetful because she was getting older. Mom stopped being able to speak on the phone at all about a month ago but her older brother Cox started calling and I ignored it because, like I said, they aren’t my family and I had constantly been reaching out to them these past few years to at least come visit mom while they still can. Also, Cox has never spoken to me let alone looked me in the eye. I don’t know if he is grossed out by me or if it’s some social status thing because he got in on IBM in the beginning and is extremely wealthy and fucking pretentious. Grandma and grandpa got us all out to dinner one time years ago and it was a little bit fancier than an Olive Garden and mom commented on how good the food tasted and I swear to God, he scoffed and said, “I’ve dined at the finest restaurants all over the world, anything I get here will won’t impress me.” Mom was actually in awe, I wanted to punch him in the face.

Anyway, Cox had been calling at first it just went unanswered and at the time I decided I was going to try to put my feelings aside and advocate for my mother since she couldn’t and I knew that she would have wanted to talk to him. So, I called him and I vaguely explained where her health was at, when and what her next appointments were for, and that we were in debt but on the waiting list for caretakers but we were trying to get expedited. He asked a lot of invasive questions like “well, what are you wasting your money on?” and informed me that I would be sending him my financial records and he would tell me what I needed to cut. I sent him the information because I am very very petty and I wanted him to see proof of all the money I receive each month and that only expense that wasn’t “necessary” was cable but I was keeping it because it was packaged with the house phone and our Internet and was actually the cheaper option. Before he argued that I didn’t need the Internet, I let him know that I physically can’t pick up the phone anymore so I use Skype to make all my phone calls and therefore need the Internet. While I was sending him all that he called the house and because of my luck my mom picked up and he told her that I was telling the whole family that she had Alzheimer’s so I could steal her money (the only money she’s ever had was my inheritance which she gave to K and any thing left over was she spent on redecorating the kitchen right after dad died) she was obviously confused and terrified because I had been trying to get her to believe that everything was relatively normal and he literally screamed over the phone that she need to sell the house and put me in a home immediately. I had to call my auntie over to calm her down and I called him back again and was condescendingly nice and pretended I thought maybe there had been a misunderstanding and he hadn’t heard me correctly but then he literally started screaming at me. That I was a liar and that he knew about K so I was obviously trying to “extort” money out of the family, the only reason I called him was to try to get money at him. To spite him I stayed calm and spoke in a normal tone so he had to stop screaming I told him that the arrangement with K was with mom and each month the $50 went into helping pay for medication. I said that going into a home again wasn’t an option, that they were very dangerous places. He cut me off screaming again saying that i was lying and assuring me that I was completely unrapeable which is kind of a weird complement in a way. I said, “if you’re going to continue to yell this conversation is over” and he screamed, “I’m not going to stop yelling” so I said “this conversation is over” and hung up and haven’t heard from any of the family since. The next day the $50 check came from K so I mailed it back with a note thanking her for the help and apologizing if there is any misunderstanding or she felt coerced into sending money because I told her what grandma said about her which I acknowledge was not the proper thing to do given that she had just died. I also apologized if she felt I was “extorting” money out of her. I was hoping the quotes around extorting made it clear that I was referring to what I assumed were conversations between her and Cox.

At this point, mom is really bad and can’t take me to the bathroom or get me up and I sleep with this really old cell phone in case of emergencies but I’ve gotten so weak that I can’t push the buttons so I was stranded in bed the whole day but luckily May stopped by that night because she was coming over to do something.

So now I’m completely back to where I was before she started working here and although I can now hire someone from the state to come to my house it’s going to take a couple weeks and there’s a very good likelihood that I will never get reimbursed for anything because she refuses to send in the timecards. Things aren’t so bad as before because coincidentally last week I finally got approved for Meals on Wheels but those are TV dinners which neither my mom nor I can even warm-up. And I finally got approved for using handicap transit. Public buses aren’t accessible but if you can verify that you are disabled which I could (but it took weeks of suspicion so I can’t imagine what it’s like for people who aren’t so extremely gimpy) which means I can finally go to a doctor. Maybe a dentist so I can get some front teeth. Certainly my GP who I have to somehow get to this week or he’s not going to fill my medication anymore and if I go even a day off my medication I can have a heart attack and die. I had planned on the caretaker being here because someone needs to stay with mom and I need someone to go with me but I wasn’t completely concerned because I was sure I could find even one person who could free up the morning but now I need two people and May is working, her mom is taking care of the grandchildren, and my auntie will be taking some of her grandchildren to school out of town.

We are trying so hard to find a place for mom but no one is taking new residents. We have a little help now because since my dad was in Vietnam the Veterans Association might pay for her to go to a private home. I really need someone to live here but I definitely wouldn’t put anyone through that until she is gone. Even so, that doesn’t seem likely. I’m only asking that they pay for their own food and utilities and their chores. No one likes the offer.

May explained that it was because no matter what a person would still be signing on to a life that included disability and for obvious reasons no one wants anything to do with that.

I know I’m just going to have to find someone on Craigslist or something which is perfectly normal and I shouldn’t be scared but I’m absolutely terrified. I’m an only child and all my life I either only lived with my father or my mother so this is going to be really foreign to me. I’m also just scared, I only know relationships where you bide your time until you get so hurt you have to break ties and I’m not sure what sort of hurt I should expect with a complete stranger I’m living with; it could very well be a type of hurt that I haven’t experienced before and have no coping mechanisms for.

I think I kind of just snapped this weekend. I don’t want to sugarcoat things for anyone anymore and even though every time I’ve asked someone for help who has insisted that they would be there if I ever needed anything they immediately peace out. I’m just gonna take every offer given, I give up all pride or shame. I lost contact with a lot of friends like you because I don’t want to be a burden, I wanted to fix things and hit everyone back up when things back to normal but I know that’s not possible.

That first caretaker finally turned in all the paperwork she needed to and then was going to be paid by IHSS after receiving her timecard. I knew the check would probably be late and that this woman didn’t have a lot of money either so I paid her with my credit card for that week and then the next she texted me asking me to send her money.

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What I didn’t tell my friend was that when the caretaker didn’t arrive it was at the worst possible time. May was out of town, auntie L was out of state, mom couldn’t even use the phone anymore, and I’m not strong enough to work the buttons on my cell phone so I spent the day in bed unable to move or go to the bathroom but luckily May came home early and checked in on me.

The thing about the money gets even more complicated. The reimbursement won’t be sent out for what I paid the caretaker until the time sheets are signed by either me or my auntie but regardless of what happens the reimbursement will be sent to the caretaker. The one who abandoned me and has been dodging us. Do you think she will come over and give me those thousands of dollars I gave her? It doesn’t seem likely so I haven’t done anything but now it looks like the reimbursement might go through without my signature so she might be getting the money anyway.

Thank God a couple weeks after that IHSS finally came through with a new caretaker. She is loud as a motherfucker, manic as hell, and tries to multitask too much. Mom hates her. Every day they scream at each other. Mom sincerely and the caretaker in a kind of condescending joking manner.

I’m happy.

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She may be condescending, but she doesn’t belittle mom and she actually has experience with dementia. She is an amazing cook, this is the first time I’ve ever had a home-cooked meal that wasn’t like hot dogs at May’s parent’s place. She has torn the house apart deep cleaning everything because even though the place is tidy it’s dirty and it was beginning to smell. She cares about the well-being of mom even when mom is at her worst and has used her personal time to contact different government agencies to try to get more of our paperwork in order.

We still have no one to work nights which is why I’m here now. I usually don’t go to bed till around three but the last couple days it was like 7 o’clock in the morning when I went to bed. All the screaming kept me from sleeping in too late, though.

Oh, and look what the first caretaker sent me recently

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I literally have said nothing to her since my text back to her that I wasn’t paying her. I’m still not going to answer, let IHSS work it out.

She is upset because IHSS knows what she did and now they obviously won’t hire her. And the rest of this is kind of sad… The holiday food? Apparently her daughter had told her she was a narcissist and stood her up for Christmas so I invited her over even though I really didn’t plan on celebrating it (not in a bitter way, but a “not having Christmas is my Christmas gift” way) and she did bring something she had already cooked but everything else was provided by my mom’s church or me.

She told me that I needed new bed sheets so the next day she came in with sheets she said she got at Goodwill for $1. In return, she borrowed three of my shirts and obviously hasn’t returned them. It seems there are a few other things missing but that could just be mom throwing things out when no one’s looking.

She came in one night to help me into bed, I guess that’s what she’s referring to with the emergency help thing. She also came in at least an hour late every day and left at least a half-hour late every day.

She did bring in a few cartons of milk over that I’m surprised she didn’t mention but I guess she wasn’t going to try that seeing as how every day she ate two meals and snacks throughout the day all week long on my dime.

I’m really not even mad, I’m just exasperated.

This woman is self-destructing and the countdown seems to be going faster the more I ignore her messages. I just pity her, she keeps digging herself holes when she totally didn’t have to. If she had responded to me that night and said that she needed the money then I would have sent it to her, I would have borrowed it from May and sent it to her right then. Even after she left I left it up to IHSS and she was so suspicious of what I might do (maybe someone informed her how serious charges could be filed against her) that she would call and say things that would of course not get verified by me or any documentation and now she’s under all the scrutiny.

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