Yes, This Needs To Be Said: A Story Of More Abuse

[TW/CW: Caregiver abuse, two brief mentions of sex offenders to illustrate the comparison to that as a means of having a similar registry to identify caregivers who abuse, deliberate cruel ableism, caregivers Othering a multiply disabled person, caregivers playing on my vulnerabilities and fears, willful and deliberate caregiver neglect, mental, emotional, psychological, and financial and physical abuse, the withholding of vital medical care, and the gaslighting of ME.]

And no, i will not delete this post, because these individuals in the following story have subjected me to holy hell for the past 9 plus months, and reported documented truth is not slander. Because caregivers who abuse need to be called out, publicly shamed, and held to the strictest account possible. Not only that, caregivers who abuse the vulnerable people they are charged to care for, actually need to be treated just as sex offenders do, and be placed on a national registry, then banned from ever being able to ever be care providers ever again.
Yes, this post needs to go VIRAL. So share this WIDELY, PLEASE.
And yes this is a long post.
Having intestinal upset this fine early morning, which i know is due to the state of pure anguish that my now ex caregiver S#$%@ has left me in.
I slept for several hours, but now am sick.
Btw, when i do sleep, i have been having nothing but horrible frightening NIGHTMARES about S#$%@ and his sister, who were my caregivers from July of last year until Friday.
This morning, i am utterly sick to think that a human being who professes to love and care so DEEPLY about my health and well being, actually got in his car and BAILED on me on Saturday, June 22, 2019, leaving me with NO BREAKFAST, AND NO WAY TO GET TO MY SATURDAY DIALYSIS APPOINTMENT.
I had to actually miss a dialysis treatment due to his cold-blooded cruelty. For the first time EVER. Before Saturday, i had never missed a single one of my dialysis treatments! Not a single one!
To think that he deliberately drove off, while i, crying and sobbing hysterically, plead with him to feed me, and get me to my dialysis, while telling me cold heartedly, “Don’t worry, you won’t starve to death, you will manage”, as he got into his car and drove off, he needs to be called out and publicly outed and shamed by any of my online friends who have the spoons to do so, because this was serious criminal endangerment that he elected to put me in on Saturday. It presented a serious risk to my health.
In trying to get my next door neighbors to help me, and they were going to help me, but then got afraid to answer their door to me, because S#$%@ drove back in, sending them away, making them think that he was going to help me after all, instead, after my neighbor went back to his house, S#$%@ left, and drove OFF on me, abandoning me, a sick 59 Autistic adult with end stage renal (kidney) failure, when he knows that i NEED to keep all dialysis treatments—or i will DIE.
How did this all start on Saturday? Because another friend had finally been able to talk to him and bluntly called him and his sister out on their past nine plus months of abuse. So, he was already angry and in a bad cocky mood. Because, on Saturday, he got to my house wearing so much cologne that i knew i would taste it on my orange that he was peeling. (A something he already knew would upset me, as i had asked him several times before not to peel and section my orange with cologne on his hands. I have asked the same of his sister as well, when she worked for me.) I only asked that he wash his hands so that i would not have to taste his cologne scent on my food. His reaction was to get highly pissed, and a verbal argument ensued, where he kept threatening to leave, telling me he couldn’t take this anymore, and then he did leave. I was going to get my next door neighbor to help me, but when S#$%@ came back, making me think he was going to help me, and then left again, and i went back to that neighbor, they were now afraid to answer their door to me. In addition, as S#$%@ got in his car to drive away, i was sobbing, pleading with him to please feed me, please don’t let me go without my dialysis, and he laughed at me telling me not to worry, that i would not starve to death. That i could manage.
I almost fell while walking on my way back to my house. Please let that also sink in. That i almost fell due to S#$%@’s deliberate and willful negligence. Yes, i am a fall risk due to my limited mobility.
Some of you friend requested S#$%@ on Facebook and messaged him in the hopes he would accept so that he could learn about me, and why his continued ableistic cruelty was damaging me and why it could not go on.
I have since learned that he told one of my friends who tried to reach out to him to explain about my C-PTSD and why my meltdowns happen and how to handle it when i have a meltdown, that what they wrote was bullshit, that he had an autistic friend, who was nothing like me. Sounds so much like the autism martyr parents, hmmmm?
He sadly ignored all of your (you, my friends’) attempts to reach out to him to educate him, except for my one friend above. Shortly before he bailed on me on Saturday, i found out he had posted mean comments on another friends’ comment thread.
Over the course of these past nine months, i had over a dozen meetings with him and my kidney center social worker, some meeting where his sister also my caregiver, came, where my social worker and i both made repeated attempts to try to get them to understand my autism and meltdowns and sensory issues/triggers—-but those meetings did no good. Those meetings were hard on me, because neither he nor his sister got what my social worker and i kept trying to explain to them. Both S#$%@ and his sister seemed hell bent on misunderstanding me and treating me like a naughty child all the time……and this put me through literal mental hell and trauma, which has not helped my physical health one bit.
Yes, i have spent these past 9 months being mentally, emotionally, and financially ABUSED, MUZZLED, OPPRESSED, AND SILENCED by him and his sister. They both literally charmed me, then took over my empty middle room, moved into my middle room, took over me, and my entire home. I lost all control, and the will to even live anymore. I began to feel safe only when i was at dialysis, where everyone there loves and accepts me! And sheer dread when i knew they were picking me up from dialysis to take me back to what i began to feel as a hellhole, instead of my home. I dreaded it because i began to feel unsafe—in my own home.
Where i used to be able to pay my bills, now each and every single month i can barely make ends meet, and have had to resort to posting several Facebook fundraisers in order to get through the financial raping that has occured at the hands of this caregiver and his sister.
They basically would routinely ask to borrow money, but never repay me. They would tell me they had no money to gas up their cars, so i would have to shell out for their gas, or face them not coming, and not getting me to dialysis and all of my shopping and errands. In addition, i had to pay every month for their phone service, or not be able to get them on the phone or via Messenger and text message.
I had fun times with them—alot of fun times. We went places, and i would often hang out with them and their friends in the middle room. But those fun times always came at a cost and punishment:
*them always being late to get to me, and when i would try to reach them, their phones would die, going straight to voice mail, resulting in me having full blown panic attacks and meltdowns,
*several times me being late to medical appointments, as well as dialysis,
*them being late, sometimes VERY late to pick me up from dialysis.
*Me actually getting left at a mental health counseling appointment (more on that later).
*And finally, me being denied breakfast, and finally having to miss my first dialysis treatment ever, on Saturday.
Below describes much of the hell i was subjected to.
In September of last year, was when i first saw signs of both their moods. (Their lateness was always a problem though from the start.) Firstly, i was made to go stay at his mom’s so he could rip all of the carpets out of my living room and bedroom, because the carpets were affecting his asthma. If i did not agree to this, he was going to walk on me (quit). After a week at his house, he approached me one morning with a dark look on his face and ordered me to take a shower, where, as we were getting ready, he first laid into me for asking him to wipe me before i got into the shower, implying i could do that myself, which i CANNOT, because it hurts my shoulders and arms to reach to do that, then because i needed to have a towel on my transfer bench, and the floor of the tub, so i would not be cold, and slip in the tub, he told me “Why can’t you take showers like a normal person?”, and if i did not shower, he would quit, and i would have to find another care provider. I was having a meltdown, and he kept escalating it, accusing me of not caring about myself. I have always been hesitant to take showers because they are physically hard for me and because of past caregivers, and bad family experiences when i would bathe/shower…specifically, me always being rushed through my baths and showers, and never allowed to enjoy my baths and showers…and he seemed hell-bent on making that shower an as unpleasant as possible experience for me. After he had me in full on tears, pleading my case to him, he finally grew his heart back, and we ended up having an actually pleasant shower.
Even so, i can never forget that first shower experience with S#$%@.
And then, a few days later, he got mad at me again for asking him to please re-do my food better so i could eat it, another huge sensory issue, calling me annoying, and what happened was me spending an entire night and set of spoons, going through my Facebook memes to educate him on my autism.
We got along better after that. After three weeks at his house, i finally came home—to canary yellow paint slapped all over my living room walls, and my entire house all rearranged. My computer speakers no longer worked, so he had to give me a pair of his computer speakers. In addition, my TV sound bar would not work, and we both played hell trying to get it to work again, which, thank God, it did, but i told him to not play with that ever again.
In addition, i no longer had my Living Bible, a huge plastic box of gel pens, several adult coloring books, and a whole bunch of other things, were now all gone.
My Thanksgiving at his house was awesomely beautiful though. Delicious food, and everyone there were so sweet to me. Including S#$%@.
But then in December and at Christmas, he, and his sister, got in yet more bad moods with me. During a trip to Solvang, he got impatient and angry with me when i asked him to not forget to put my backpack on my wheelchair, and then when i needed my glasses to read the restaurant menu.
One night, Sister literally tried to rush me at dialysis so that she could get her kids a Christmas tree, when she could of done that any other time, except for her work hours with me. She accused me of making all four of her kids cry. I tried to get S#$%@ to pick me up. Their mother came a full hour later to pick me up from dialysis.
On another day, she began telling me “Ya” over and over in Messenger, after telling me she was on her way, and never coming, when she had taken S#$%@’s car, and left he and i with no way to go anywhere, obviously making fun of the state of distress i was in. S#$%@ and i had planned a recreational outing for us that day, and her taking his car ruined that, and her response was to “Ya” me to death over it, making blatant FUN of me!
At Christmas, S#$%@ got in another dark mood when we got to his house for another family dinner—which completely ruined my Christmas this year. He took control of the Fire stick TV remote and began watching a bunch of really dark negative stuff that i hated watching. He wouldn’t let me watch anything i wanted to watch. I sat there clearly uncomfortable, getting agitated. He also was not that attentive to my needs when we first got there. He never got up from the couch to get me any refreshments at all. He did serve my dinner plate though. Then after dinner, he began playing a Bible thumper on YouTube who prays for people in a very harsh judegmental manner, his voice a sinister gravely monotone that i find to be more demonic than anything, and this really triggered me. He played it even though he knew this man upset me when i had to hear him before, out in the middle room of my house. When i tearfully asked that he please turn it off, he refused, getting downright nasty with me. I had a meltdown, and had to leave the room. His mom came to my defense, and he finally got nice again, apologizing to me….letting me have the remote. I put on videos of New York City.

And then in January, he actually left me at a mental health counseling appointment, leaving me to believe i would be stranded there. He basically came in with me, then excused himself to go take a phone call, promising me he would be right back in, then never came back. After my session was over, my counselor and i tried to reach both him and his sister, but both their phones went straight to voice mail. I had the counselor then call his mom, and then my kidney center social worker, who has been in my corner from the get-go, and she finally reached the sister, who got S#$%@ to finally come get me. When he finally did come to pick me up, the center was getting ready to close, and instead of him apologizing to me for leaving me stranded, he yelled at me and scolded me, telling me “It’s always about you, Melissa, always about you, you are so selfish!” and i had another meltdown. He finally apologized, realizing what he had done.
Things have only gotten worse since then….unbearably worse…..with both of them….more numerous daily episodes of their now classic showing up late behavior, the now classic phones going straight to voice mail when i try to reach them to find out when they’re coming…then suddenly they come back to life and message me to say they’re down street, at the stoplight, on our way, etc.,…me often getting my breakfast a whole hour to two hours late…..daily episodes of them switching days on me, and switching plans and changing things abruptly,…daily, upon daily, repeated episodes upon daily repeated episodes of me being in here, in my living room, all alone after they give me breakfast, all alone for whole entire afternoons, with them out in the room with their friends coming and going into the room to visit them all afternoon long, and me—just alone. If i needed them, i would have to get up and literally walk to the back of my house to yell for them. On legs, hips, and knees that always hurt. (And i still have the leg lump). Otherwise they would not hear me call for them, as they always had music or videos playing. I would have to call for them at the top of the steps leading from my laundry room through a breezeway, to that room that they had turned into an office/hangout/party room for themselves. Often they would even block the door leading into their room so that i could not go in there to hang out with them, which i often had to do in order to get any attention from them, again on knees, legs, and hips and a heavy leg lump that always hurt…..
Sometimes they would take their time to come to me. One time, they would not come, and i kept going back there, over and over again. pleading with them to please pay attention to me, and they would not come to me until after i was screaming and in tears.
There were the afternoons the sister would bring me treats like ice cream pops, and cool candy, even hits of her cbd pens. But most afternoons i was here in my living room all alone with no one to talk to.
And then in April, she began to also get in even more and more ugly bad moods and pay even less attention to me. She began yelling at me more and more. More and more scolding me. More and more judging me. She stopped thanking me for all of the nice things i did for her. She just stopped being nice. Then in May, a week before my birthday, one morning, she and her brother both came really late, together, with him laying on their car horn as they flew into my driveway,—– on a dialysis day,—– with me in here at my computer, in full on screaming meltdown mode on the phone with my kidney center social worker, and they both lay straight into me, them both yelling right at me, charging into my living room, calling me ridiculous, with even him going so far as to actually pick my desk phone up and hang up on the call i was on with my kidney center social worker—-who was on the phone with me, trying to calm me down. I kept screaming, and they only reacted by threatening to leave me, with no breakfast, and no way for me to get to dialysis.
He calmed down, and fixed my breakfast, but, yeah, got me—late—to dialysis, where, because i was still highly riled up, my dialysis machine kept alarming, and they had to put Acti-vase in my catheter to get it to work. In addition that day, my blood pressure was at literal stroke level.
That evening, after i had another meltdown because of the way my spaghetti was plated up with way overkill on melted cheese on the top of it, at first, S#$%@ was going to fix it, but then his sister came in, and they both yelled at me yet again with their usual harsh ableistic judgments: “Oh, here you are, Melissa being ungrateful, using your autism as an excuse, you are selfish this, bad that, a burden, a behavior, a tantrum, you don’t appreciate us and what all we do for you, and we even think you are lying about your disabilities….” Then they both left. In total and complete frustration, i threw the entire dinner on the floor, because as usual i was being unheard, as usual i had no say in my care, no rights, it was their way or the highway, as usual….and i just could not do this anymore…..i tried to run away…..and came back later, having to heat canned raviolis up in the microwave…..
It got better with S#$%@ after that, in fact, unusually better with him, because i had Connie come talk to him….and it calmed him down and he even told both my friend Connie and i he now gets me and that these upsets are not going to happen anymore. After that, he even had talks with my kidney center social worker that gave her hope too—but even when the sister and i made up a week later after that awful day and night, things were never the same between her and i…..
Because of that night, i had Connie come in as a third caregiver, thinking that would help….it did until S#$%@ realized he would lose money by me having Connie as a secondary caregiver, plus Connie came right out and called him out on the way i’ve been treated by him and sister these past 9 month…..and then more hell happened on Father’s Day with the sister and the sister’s mean friend, when S#$%@ took me to his house for a Father’s Day BBQ. When the mean friend of the sister’s told me to stop the stimming i was doing, sister came in yelling at me for standing up for myself to her mean witch friend…..and now? He has finally turned on me…..
I have both of these ex caregivers now blocked, as well as their just as cruel wicked witch of the West den mother, as well as HIS evil girlfriend and partner in crime.
The reason i am writing so passionately this morning, is because i am rage pissed, deeply hurting mentally, and i do not feel well physically either this morning, i am still having lower abdominal cramping, still feel physically sick.
I am CRUSHED that this young man has done this to me, left me when i, a borderline Type 2 diabetic, needed my breakfast, and to get to a vital medical treatment that is keeping me alive.
S#$%@ and his sister, when they were my caregivers, would routinely play games with me when i would get upset at them, cruel mental games, were always late getting to me, they always yelled and screamed at me, and several times before he finally did leave me on Saturday, threatened to leave me without food and a way to get to dialysis. Yes, there were several other times where i was threatened with no breakfast and no way to get to dialysis.
They both knew that i am all alone, with no family support. They preyed on all of my fears and vulnerabilities. All the while telling me over and over and over again how much they loved me.
On Saturday, S#$%@ finally made good on their threat to leave me hungry and without my dialysis.
ALL of this is well-documented by my social worker at my kidney center, by my local hospital where i had to go to try to get dialysis there on Saturday after S#$%@ left me, and by the local police, after the kind hospital social worker who saw me while i was at the ER, told me i needed to make a police report on what S#$%@ did to me.
I have not gotten a dialysis treatment since Thursday. They were going to admit me Saturday so that i could get dialyzed, but they did labs and decided against it because those labs came back normal. I am going to go back in this morning to get more labs done, to make sure i can wait till tomorrow my normal time to get dialyzed. If not, i will have to get dialyzed today.
Again, this post needs to go viral, to illustrate that caregiver abuse of vulnerable disabled folx, is a real and pervasive and serious evil occurance that needs to be stopped.
Abusive caregivers need to be placed on a national registry, just as sex offenders are, and need to be banned from ever caring for and abusing anymore of us.
As for me, this is why i have the deep trust issues i have. Exactly why. Exactly why i now have the C-PTSD i now have. Because sadly, i have had a long string of these kind of abusive caregivers, from 2012 on when i first needed caregivers.
I know this was long. It needed to be. Because these stories need to be told. Shouted from the rooftops.
Caregiver abuse is a REAL and SERIOUS problem. And it needs to be stopped full stop. No more. We disableds are human beings. And we matter.
Thank you.
[Above blog is a more detailed account of what i have had to endure for over nine months, in my own home. If you read my Timeline post, please read this, and share it widely.]
Update on Thursday June 27, 2019: I did go in for dialysis for a three hour run Monday, which was successful. On Tuesday, i tried to do my regular four hour treatment, but my catheter would not pull. I was only able to get one hour and forty five minutes of my Tuesday treatment, and no dialysis today. Instead, i am going into the cath lab to have yet another new catheter put in my chest, so i can hopefully get back on schedule with my dialysis again.
Connie is once again my caregiver.
In addition, S#$%@ has moved all of his computers and personal things out of the middle room. He told me he would have everything out by this past Sunday at noon, but as of Wednesday, he still had desks, two sofas (he took the cushions from them though), two vinyl chairs (of which he also took the seats from), a red Coca Cola refrigerator, and my desk, with many of its drawers also missing and gone. In addition, i had three folding chairs that are mine that he also stole from me.
I also asked for him to return an art portfolio full of felt tip marker drawing i spent hours upon hour drawing in the 80’s and 90’s, that he still has, at his house, and has yet to give back to me.
Between him and his sister, much of my possessions are i am afraid, forever gone. My emotions are forever ripped apart by those two.
I trusted them to care, to love me and to really care, and i instead got my entire being forever broken.
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1 thought on “Yes, This Needs To Be Said: A Story Of More Abuse

  1. melissaautisticfields Post author

    Dear Ms. Cota,
    Telling one’s story, especially when the names are changed, is not a crime in the State Of California. If you noticed, I edited out the names you had in your comment. You’re welcome.

    What happened happened.

    My caregivers were here to work for me. That did not happen. I felt I always tried my utmost best to get them to understand my disabilities. I felt I worked hard to conduct myself fairly throughout the time these caregivers worked for me. I more than met them halfway.

    The meltdowns happened because I was not listened to and heard. Because my house got changed, my things got moved, and even taken from me. Because I was starting to only feel like I was safe when at dialysis.

    On Saturday, June 22, my caregiver got angry when I asked them to wash their hands, and an argument ensued. He then walked out on me, a borderline Type 2 diabetic, and a kidney dialysis patient, without giving me breakfast, and taking me to my dialysis treatment.

    That was willful criminal neglect, and this person cannot claim any work hours when they failed to provide me a service.

    In addition, I am not withholding pay from this person. I am rejecting their timesheets solely on the basis that they keep submitting them for more hours than they are allowed to claim per IHSS rules. Because of the amount of hours I receive, my total weekly hours cannot exceed 47 max per week. if ovetime is worked, a separate form must be obtained and filled out by the care provider for that.

    I write to educate people so that this kind of thing does not happen them. To wake people up to the issues that affect us disabled folks.

    I did not write these blogs to hurt or defame anyone. I wrote this from a place of pure brokenness, pure hurt, pure sadness.

    Because I did love and care about **** and ****.

    I understand you are angry.

    But what happened, happened. And it is all well-documented. I had to make the reports to protect myself because I did not feel safe.

    I really wanted to work all of this out.

    That was why I had all of the meetings we did with my kidney center social worker. This was why I spent hours upon hours to try to educate all of you. I really did try. I really did want to make this work out.

    And yes, I am going to leave this comment up. As well as your others. Because this shows my readers some of the fine, and very sad examples of how I was talked to, and made to feel for the past 9 plus months.

    That is what’s so sad.

    Reply

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