Rest in power, Mel!
The following is an open letter to the caregivers, a brother and sister, plus their mother, and their friend who lives with the mother and brother, who all came into my life….the sister on July 7, 2018, and the brother on August 2, 2018, to become my two caregivers, and to be, as they told me, the loving family i never had my whole life.
Warning, this is another long blog, because, well, i have alot to say, so….okay.
My Backstory First
I am Autistic. Growing up in the 60’s and 70’s, my family never understood or accepted me. All of the millions of quirks, rituals, routines, etc. that i had, were always squelched; i was squelched, made to feel Othered, made to feel like i was bad, wrong, defective, and weird. Instead of being embraced, i was was often taunted, scolded and punished for being me. I was mislabeled as mean, selfish, lazy, spoiled, etc., when i was never those things. Whenever i would try to do the things they all wanted me to do, and i would not do it right, i would just become discouraged and i would withdraw. It became easy for me to just withdraw into my world and give the fuck up. Rather than to keep on trying to do the things, and always end up always, always, always getting it wrong.
My fears were always used against me by my family. Yes, i did have many many good times as a kid too, but i also was made to tow the mark and to mask, to hide the real me by my family, so that i could survive what was for me, sadly, a daily stinking rotten hell.
I couldn’t cope with being born into a family who were so rigid and narrow-minded. I always felt as though i was ganged up on. They all told me, daily, that i would never have boyfriends, never learn how to drive, never have friends…..that i would never work at any gainful jobs. They told me that i would never have any hope. Or any of my hopes and drams for my life, fulfilled.
And guess what? I have fallen through the cracks my entire life. I have never been able to work at gainful employment, nor have i been able to find much in the way of friendship, and real support and acceptance either….because even now in the year 2020 we Autistic are still sadly misunderstood, Othered, and oppressed by the vast majority of non-Autistic people. My life has been a lonely life of me never getting to date, go to parties, concerts, or get married or have children.
In addition, i was what they used to call a tomboy, and later on, in my mid-twenties, i came out to one of my two older sisters who i trusted, that i was bisexual. Today, i proudly call myself queer and non-binary. I have always been attracted to both men and women….and today that includes trans and queer people.
Growing up, i had so many, many meltdowns because of the way i was so often misjudged and then punished. I grew up terrified of my father, and indeed, i was never allowed to disagree with him, have my own opinions, or talk and joke with him. My brothers and sisters were always taunting and criticizing me…and exploiting and using my fears against me. It is no wonder that i grew up so afraid to stand up for myself both at school and at home. And in public. It has only been in the past 25 years that i have slowly overcome my fears of standing up to people, but even now, there are still times today when people’s meanness and insensitivity can send me running away into a crumpled hot mess. And. I. Just. Shut. Down.
I basically grew up feeling like i was my family’s punching bag and throwaway. I grew up feeling like i was unwelcome both in my own home and at school. I grew up feeling like i did not matter and like i was not supposed to matter.
Like i was not supposed to exist.
In May i will be 60 years old. I have still never been to a rock concert, and my siblings, except for two sisters and my mother (yes, i just recently made up with my second nice sister who lives with my mom) all still ignore me. I have still never had an actual job. I never got to pursue any vocational training so i could train for a career…so, i have been surviving my entire adult life on Social Security benefits, Medicare, Medicaid, and Section 8 housing assistance.
In 2012, my physical health (lymphedema in both legs, plus a lymphedema leg lump the size of a basketball on my inner left thigh) digressed to the point where i had to give up driving, give up my car and sell it, and i began needing caregivers. Sadly, that has only added to my lifelong hell, because in the first two years, from 2012 through 2014, and then one month in 2015, when Connie (a nice caregiver i had for four years, and who is back now again as my caregiver) and i took a one month break, all of those caregivers that i had in those time periods, were all abusive.
Except for Connie. Oh, i had problems with Connie as well in the beginning, but that was due to the trauma i had already gone through with the previous caregivers before her….and i still had some ongoing issues with Connie even when we grew closer at the end of her first four years with me, because i still had deep-seated trust and abandonment issues and i still kept misunderstanding her. However, out of ALL, out of every single one of my IHSS caregivers, she has always, ALWAYS had my back, she has always had compassion on me, and i know i can trust her with my LIFE, because she is honest, and she has never, and will never take my money or steal from me.
Connie was, and still is, my rock. She was my caregiver from March 2014 to March 2018, for four years, and is now back as my caregiver. She has been back as my caregiver since June 22, 2019, last year, when the brother caregiver literally, finally made good on his threats to abandon me, and drove off on me and ditched me….leaving me with NO breakfast, and NO way for me to get mt my dialysis treatment that day.
Connie left as my caregiver in March 2018 only because she got a job offer that was so good she could not turn it down. She felt i would be safe and secure with the two caregivers she had set me up with….but, sadly, i wasn’t okay. They both quit me after just three days, because of the meltdowns i was having over the supersonic loud thunder bass that was coming from a business East of me.
So, in came KJ, who i loved in the beginning. But then after just two months, she convinced me that Connie was not a real friend to me. I foolishly let her convince me to sever my ties with her. After that, KJ turned Jekkyl And Hyde on me, and she began threatening me that she would quit me if i did not start giving her money when she asked for it. Twice a week she would ask for gas money to the tune of $40 at a time. But then she began asking me to give her much larger sums of money that i could ill-afford to give her. But i would always give it to her……because she threatened to leave me with no care if i didn’t give her the money.
I handed over a total of $2109 to her when all was said and done, which never got paid back to me. And she forbade me to write out a running IOU so i would have it documented on paper. Next, she gave me a shower, and when i had two meltdowns during that shower….she took those meltdowns personally, and did not come to help me for two whole days, leaving me all alone to fend for myself again, with me thinking she was going to ditch me…..
I have had caregivers be no shows. I have had caregivers walk out and ditch me. It is the most dehumanizing, terrifying feeling when it happens. So, out of fear, i do what my caregivers tell me to do. Except Connie, she is real with me. I do not have to fear her.
Because of KJ leaving me for those two days, and me not knowing if she was going to even come back or not, i was forced to call a taxi so i could go to the bank to get my monthly SSA money, and that taxi cab was so small, that i ended up skinning my leg lump on the bottom of the door lip getting in and out, and two days later, when she did come back, my leg lump was red hot to the touch, and extremely painful.
A day later, i was still so shaken and upset from her leaving me, from her leaving me to think for two whole days that she was going to quit me altogether, and from all of the money she had already taken from me, that when she came that Saturday, she came in to find me in a state of physical whole body weakness. I was literally laying back in my lift chair almost passed out from the red hot infection on my leg lump, and from just pure mental exhaustion. She grew frightened. I told her i could not move to even go to the bathroom. I made her promise to not take anymore of my money, and to never abandon me, and she agreed she would not do either to me ever again. She was even in tears…..apologizing over and over…promising…that she was here for me for LIFE!
She called an ambulance, and i was rushed to the hospital, where they ran test after test on me. I was diagnosed as having full-blown Type 2 diabetes, sepsis in my leg lump…..yes, sepsis, folks…..plus….end stage kidney failure.
I was admitted, given heavy antibiotics, and then had a chest catheter placed in the upper right side of my chest, and two day later, i began dialysis. I was in the hospital a total of three long weeks. I was no longer diabetic, but diagnosed as just borderline again.
And then i began dialysis treatments in center on July 5, 2018. Two days later, KJ had me meet the sister caregiver, so that the sister caregiver could become my secondary caregiver and backup caregiver. After that, KJ got mean again, with even more threats to leave me, more demands for me to hand over even more of my money……so, with the sister caregiver now in my life, i finally got up the courage to fire KJ. The sister then got me hooked up with her brother as my second caregiver. He started working for me on August 2, 2018.
Note: i have never wanted to have a male caregiver, because i have never been comfortable around men due to my past with my father and brothers, plus my past with a police corporal and another friend that i had had who both also turned against me….but i was told by the sister caregiver, that the brother was gay, was a sweet angel, and that he would have lots of compassion and patience with me, so i agreed to have him work as my secondary caregiver. But as soon as he came on, i had hit it off with him so well because i loved his sweet and charming personality…..that he quickly became my main caregiver….and the sister became the secondary caregiver.
I believed him when he told me he would have my back all the way, that he would not let anyone bully, mess with me, and mistreat me.
The next two months my life was once again happy and blissful….together, the brother and sister both woo’ed me, and he and i, especially, really hit it off great…that was, until after the middle of that September when i had to go stay up at his and his mother’s house so he could rip out all of my carpets in my living room and bedroom….from then on, things all went right back downhill yet again for me. The brother and sister caregiver team also turned mean. Very mean.
You can read all about that here: https://melissaautisticfields.wordpress.com/2019/07/04/i-should-of-seen-the-signs-re-vised-and-re-edited/
And so here is my letter to them.
Dear Brother and Sister,
How dare you?
How dare you both come into my life, along with your mother, to charm and woo me and to tell me and make me believe you loved and cared for me, and then you all turned on me after two months? After i had already bonded with you all?
You woo’d me by getting that nice sleek fast Cadillac sports car with the bomb SiriusXM satellite radio….woo’ed me by taking me on outings, to the ocean, Santa Barbara, San Luis Obispo, Solvang, and to lots of restaurants, etc.
You both woo’ed and charmed your way right straight into my heart. I have never been able to have any children of my own. Yet you both won me over with your charming personalities, and right off the bat, became like the son and daughter i never had. Your mom became like another nice sister to me also. And i also bonded with the girl who stays with you and your mom.
How dare you also come in, as so many of my other past caregivers did, and start taking even more huge sums of money that i still could ill-afford to give you? Huge sums of money kept going out to you both, as well as a three pages long list of my possessions that were also taken from me. Even my personal files got taken from me….all of the important papers i had, all important documents i used to keep, important documents that i still need, got literally taken by both of you. Even my birth certificate! All of those important papers got taken right out of my desk, where they were all neatly organized, all in different-colored folders, and thrown willy-nilly into Rubbermaid tubs and thrown out, literally, into my back yard to get rained on and ruined.
All of my personal details about my disabilities were then taken and used, out of context, against me to help build me up to be a villain in the eyes of all of you, so you could use that info to your advantage.
You had NO right to read those files. And to try to use them against me. Yes, as my caregivers, you are also bound by the HIPAA laws.
You convinced me to go to your house for three weeks, so you could rip out my carpets. Yet reliable sources say you and sister were here at all hours of the day and night, spending the majority of your time partying in my middle room. There was always loud music, drugs and loud talking, laughing, and streams of people coming and going out of my middle room.
What should of taken 3 days at the most for you to do…took 3 weeks instead, because most of your time was spent getting drunk and high in my own home. My home is not that big, so it was just my bedroom and living room that needed the carpets taken out, and the hardwood floors sanded and finished. And guess what? My floors are still not all the way finished.
I chose to believe you when you told me, sister, that your husband was abusing you, so i opened up my middle room so that you could stay there to get away from him. But next, brother wanted into the room as well….so he came too, with his computers and furniture, then your friends all came along too…and you both took over that whole room and my home, and me.
There were many times when you would even place large barriers in front of the door so i couldn’t go out there.
I put up with the daily, daily, DAILY games you both played of always getting to my house late, often so late that i would sometimes not get to eat a thing until 3 in the afternoon! When you both knew that i, a borderline Type 2 diabetic, eat my breakfast at 11 AM. The daily games where both your phones would go to voice mail, and then suddenly when i was in full on meltdown mode because you were already a full hour late, you would finally answer my frantic calls, and then tell me you were “On my way, OMW, down the street,” etc. And i would wait even longer….till you would finally, finally show up.
Then i was forced to move up to your house for 3 whole weeks or else i would have to find a new care provider, because my carpets were making your asthma worse. Yes, i had to go, because you threatened to leave me as my care provider if i did not do as told.
After just one and a half weeks at your house, came the day you brought my transfer bench to the house, and you came into the living room where i slept, and as i was waking up, you stood over me and ordered me to take a shower. You. Literally. Ordered. Me. To take that shower.
It was the shower from hell. I got literally yelled at and belittled when you gave me that first shower at your house, brother. That day, when i told you how i do my showers, when i told you the workarounds i needed to be able to handle taking a shower….you suddenly got a dark mean scowly look on your face and you yelled at me and belittled me, telling me that:
*I don’t care about myself
*”Why can’t you take a shower like a normal person does?”
*”Showers aren’t meant to be nice and pleasant. I have to sit with my back against an ice cold tub, and you don’t hear me bitching about that!”
*I could not have the towel like i like on my transfer bench, so i can sit on the towel instead of the cold wet transfer bench, or the towel i like to have on the floor of the tub so that i don’t slip in the bathtub and fall. I’m a fall risk, remember?
*And i also could not have my private parts wiped before the shower like i need to have them wiped, because, and your exact words were: “I am not going to wipe your fucking ass, when you are already going to be taking a shower.”
You refused to understand my need for accomodations.
And you just stood there angrily arguing with me as to why i had to take my shower YOUR WAY….YOUR WAY OR THE HIGHWAY.
It was only after i was in tears, sitting buck naked on the bathroom toilet, sobbing, did you suddenly snap out of that fucking pissy mean mood, and you apologized, told me you were sorry, that you loved me, that you loved me SO much, and so didn’t mean to hurt me….. and then you did wipe me, and then you did place the towels on my shower chair and floor of the tub. And the actual shower was fun.
I never forgot that incident though. And that was the start of my life going right back downhill to hell….yet again. It was from then on that you and your sister both began losing patience…and your tempers….with me.
Two days later, that Saturday, you again lost your temper with me when we had gotten home from dialysis. we had brought Kentucky Fried Chicken with all the fixin’s home for our dinner, and you went ahead and and served both our plates, before getting my backpack out of the car. You got angry and bit my head off when i asked for the backpack, and then got angry again when i asked you to fix my potatoes and cole slaw in separate bowls so i could handle eating my dinner.
I could not eat until you came in to tell me you weren’t angry at me anymore. Yes, you did do that afterwards, but that, together with the shower incident two days before, stuck with me. This was how life was for me with my father. My father never had patience with me. At all.
And then, i came home from those 3 weeks at your house to find the awful canary yellow walls that i still hate, to find my computer speakers broken, to find my TV sound bar no longer working, to find all of my belongings all gone, hidden, and put where i could not find them. You had PROMISED me that when i went to your house those three weeks, that none of my belongings would get moved, misplaced or tampered with….that i would have my living room painted either the lavendar or blue i had requested….but no. None of that happened.
You did get my sound bar working again. But i lost my computer speakers and nice subwoofer. The speakers you gave me are shitty, and i still have them because i am still struggling to climb out of the financial hole that KJ, you and your sister put me in.
You got angry at me then for being upset that my house was all turned upside down. You accused me of not appreciating all of the hard work you did on my floors and walls. The yellow walls you knew i would hate.
Yes. You both have nasty mean abusive as fuck tempers.
I put up with the perfume and cologne taste that was always on my oranges, until i could not stand it any longer, but when i began telling you, you got pissed off that i would dare to tell you i did not like having to taste your perfume and cologne in my oranges.
I got falsely accused of having candida on my scalp and body…and got accused of causing the sore that was on your left hand. Sorry, but Connie worked for me for 4 years, and never did i have candida. I have what is called “cradle cap” on my scalp. And she is a licensed LVN nurse.
Even so, you convinced me i had candida…and together, you and sister both talked me into having my hair buzzed completely off. This happened in November of 2018. I wish to God i had not of had you shave my hair all off, because i am now having a horrible time getting it to grow out to what it used to look like….it is growing normally on the back, and sides, but the top of my head is still quite thin, and i cannot grow proper bangs anymore.
When you began to get literally pissed off at me for always asking you if you got my backpack out of the car and put on the back of my wheelchair…or i would ask you to get me my backpack so i could have my reading glasses so i could read the menu in a restaurant we would go to….that was really cruel of you to get pissed at me for things like that, because you were here to HELP me, to CARE for me….you were not here for me to help you to make your life more convenient for you.
And there was a damn good reason why i was always so paranoid about my backpack. That was because when you first began working for me, and you picked me up the first time from dialysis, you had left my bag sitting there on the asphalt pavement of the kidney center’s parking lot and had to make a fast u-turn to go back to get it. Luckily, we were right in front of the clinic when you remembered my bag, and you did not have far to go to retrieve it.
You and your sister also kept losing your keys to my house, and you both kept losing your wallets…and in addition to that, you seemed to always be overdrawn on your bank account, so i was always, always having to give you both money, for gas, for snacks, for all of our meals, out, i paid for every single one of the outings we went on. Also, i would often find money going missing from my own wallet.
I even paid for some of sister’s medications that she needed, and for some of her medical office visit fees that she had.
Again. You and sister were like a son and daughter to me! I loved you both with all my hart, and i loved your mom and A too!
I did not ask or need to be ordered around in my own home. I did not ask or need for you to put me through literal boot camp in my own home. I asked for and needed your respect. Your compassion. Your patience. And to learn about my disabilities of Autism, Lymphedema, Kidney disease, and borderline type 2 diabetes. I needed you to both be here for me. For ME.
We would go to my medical appointments..and instead of you having my back in those appointments, you always sat behind me, rolling your eyes. (If sister took me, she would sit there engrossed in her phone.) If i had to stand up to the nurse or doctor, or counselor, i was always the bad guy in your eyes…..neither of you ever saw the ableism and misjudgments i was experiencing….you only saw my reaction, and you villified ME for it, instead of seeing the ableism i was experiencing.
Next came the face mask. Yes, you suddenly began showing up wearing a large face mask. Connie never felt the need to wear a mask around me…..but you did. Why? I took a shower everytime you ordered me to. I had to or else i would get yelled at and berated again. Finally i was able to talk you out of wearing the face mask. The face mask triggered me because it hid your mouth, and your smile…it placed a barrier….a wall….between us. A few weeks of the face mask, and i finally talked you out of wearing it.
But then next came the awful blindingly snow white medical scrubs…medical scrubs that no one wears anymore. Medical scrubs that you seemed to know would trigger me, because snow white medical scrubs are worn in mental institutions. And you wanted me to feel Othered by those horrible scrubs.
I was told off when i told you how i wanted my toast to be cut, buttered, and the strawberry jam spread on it. And when i told you how much mayo and seasonings to put in my tuna. And when i would tell you i could taste the strong taste of yours and sister’s cologne and perfume on my oranges in the mornings. It was as if i had no say in how i should have my food fixed. That is so many levels of wrong to not respect how i like my food to taste.
I was given an unnecessary guilt trip by your sister, when one night at dialysis, she wanted to rush me out of my chair so she could hurry up and get a Christmas tree for her and her kids, when she could of done that on her many nights OFF from working for me. She even made it a point to tell me, several times how i made her children cry that evening, all because i was late getting off the dialysis machine.
Sister began taking your Cadillac to use for herself, and she did it every single time whenever you and i were going to go somewhere on an outing, and one night began playing a mean “Ya, ya, ya” game with me via Facebook Messenger when i kept hounding her to get back here with the car so we could get out of the house. She caused me to not be able to eat my dinner till well after 8 PM that night due to her selfishness.
How about Christmas at your house? I got treated to another of your dark mean teenage angsty bad moods. You already knew that i was badly hurt in many of the churches i used to go to….so, certain worship songs, certain styles of preaching, even certain Christian rock, have become PTSD trigger for me, yet that evening, after dinner, you decided to put on a series of prayer videos that you already knew upset me, and when i began rocking, crying, and covering my ears, and begging you to turn it off, you got mean, and told me you had every right to listen to that because, Christmas. I ended up having to get up and leave the room……it was only when your mom went into talk to you on my behalf, and yes, she did have my back that night, that you snapped out of your shitty teenage angst mood, then you came into the office where i was, and apologized.
Then i got told i could no longer talk about Rebecca, the sweet imaginary friend who i had made out of the my dialysis machine. You even cruelly told me that you had run over her and killed her when you wrecked the nice Cadillac the day after Christmas. You stopped going in to the treatment room with me at dialysis.
You stopped coming into the lobby to wait for me after dialysis, and the poor techs had to always come out to try to find you and your sister’s cars.
You and your sister were often late picking me up from dialysis. Sometimes even as much as 90 minutes late.
You took me to a much needed mental health appointment, and then left me there stranded, waiting for you to come, and the clinic was closing, with you and the van you had driven us to that appointment in, gone. Just..gone.
When me and my therapist tried to get ahold of you and your sister, both your phones went straight to voice mail. He had to try to get me a taxi, or the Smooth bus to take me home, but he could not get me any rides. As far as i was concerned, you had left me stranded there at that clinic to fend for myself and for me to find some way to get myself home.
When my dialysis social worker finally got ahold of you, you finally came to get me….but instead of you being understanding and apologetic for leaving me there, you angrily lit into me for being upset, even though i was completely justified in being upset. You lit into me and called me selfish and self-centered, and called me a diva.
You literally told me i had no right to be upset.
Whenever i would have a meltdown, you would instantly yell at me and scold me, and then the meltdown would escalate to where you would both threaten to leave me…and this was especially frightening when this would happen on my dialysis days. I began to fear that i would someday be forced to miss a dialysis treatment. I was always in a state of fear daily, fear, of you two being late, of you two pulling a no-show, of you two actually causing me to miss dialysis…..and guess what? It did finally happen. Last June.
All of this caused me to be in a constant and extremely high state of stress. Anxiety. Worry. Fear. That it began to affect my catheter and my dialysis treatments. Soon, i was having to have the clot-busting drug, Acti-Vase pit in my catheter…every two weeks, and then, every week. Next came weekly visits to the cath lab at the hospital, and several catheter replacements.
My blood pressure while on the dialysis machine, was always spiking dangerously high, and whenever i would have a bad time scene with you and sister, i would go into dialysis with my blood pressure literally at stroke level.
Because i had to go to your house for 3 weeks, i never got to follow up on getting my fistula fixed. I had had surgery that September 14, to place that fistula in my left upper arm, and it didn’t take…it never developed….
Then when i tried to get a new one with a new surgeon up in San Luis Obispo, you had the car wreck, so we were back to using your sister’s car, or your friend’s car again, so i could never schedule the surgery to get a second fistula.
It always seemed like i was on trial. I felt like i always had to prove my disabilities to you. Even then, you still would park us places where it was hard for me to get in and out of the car. You would park places where i had a curb, or a tall thick bush right in my way.
Do you realize that whenever you got upset at me, how deeply it hurt me? We had meeting after meeting between me, you, sister, and my kidney center social worker…in the hopes that we would finally have a breakthrough, and you’d both finally get me, you’d both finally get my autism, and my sensory issues, and what my triggers are. And you’d finally get my physical limitations.
But. It never happened. Because, both you and your sister did not truly care. In fact, it seemed as though you both would deliberately provoke me to have those meltdowns, so that in the heat f my meltdown, i would fire you, and then you could take me to court for mental abuse. I saw the evidence of this everytime we would have an upset. You would always say things like:
“Brother/Sister, we need to document this.”
“Oh, this is a pattern with you, this is what you always do, this is what you did with all your past caregivers…this isn’t autism, this is you using your autism as an excuse”
“Document this one.”
Over and over you’d say we you needed to document it evetytime i would have a meltdown.
“You’re not really autistic…my friend is autistic, and she doesn’t act like this!”
No. No. No. No. Just writing this now, hurts. It hurts that you saw me as a threat, that you saw me as a monster, as the bad guy. As a germ, even.
I wanted to die. I wanted to quit my dialysis and die.
It got to the point where i was only happy when i was at dialysis….because….at dialysis, i was and am accepted….at home….all i got was cold hard ableism. At home i got provoked into daily meltdowns…then gaslit…squelched…oppressed….yelled at. scolded, yelled at some more….then days upon days of being literally ignored…..
I began to want to run away from my home because of the hell my home had become. Not only did you and your sister take my money and material possessions. You took from me, my dignity, my joy for living, my self esteem…my very sense of BEING.
I continued to have to taste your cologne and perfume on my oranges.
I continued to feel all alone, and totally on my own whenever i went to a medical appointment.
The sister’s mean moods got even worse. To where i stared getting yelled at and berated just like she would yell at and berate her own children.
You never got the Cadillac back.
Every afternoon i would spend in here all alone while you were all out in that middle room. I was all alone and i was lonely. I would always have to get up from my lift chair or computer chair to physically walk back there to the top of the steps leading from the laundry room to the breezeway and middle room, and call out to you….i often had to even come into the middle room to come to you if i needed help.
If i was in the shower, i had to always call out to both of you several times before you would come back into help me in the shower. Because. You would both literally go out in the middle room and leave me all alone when i would shower. I was left all alone every single afternoon in here, and i always, ALWAYS had to go to you to get your attention.
In May i couldn’t take it anymore. Things got so bad that i was going to actually hop a bus or train, and run away, from my own home. When you both came late to get me to dialysis on the morning of May 7….then you both drove in yelling and screaming at me and telling me my autism wasn’t real, that i was just a bad mean person…..and then i got yelled at even more that night after dialysis for being upset…and once again, rightly upset….about my dinner being completely inedible because of the way the cheese was melted so thick all over my spaghetti…..it just all snowballed….that, coupled with the daily “Being Late Game” you both loved to play with me….all the money you both took from me…all of my nice washcloths and towels all now gone, the blankets my mom gave me, my full length mirror that i had in my bedroom also gone, my Living Bible gone, a beautiful glass pitcher broken, my butterfly wax candle scent burner broken, me, and my home being taken over by the both of you…..how i liked things to be never respected…i didn’t matter..no, i did not matter to either of you….i couldn’t take it anymore…..i threw my food on the floor out of sheer hurt, sheer frustration, and then ripped the pictures that your daughter drew for me off the wall, i didn’t do it to be mean, i did it because i was done with all of the hate you two were throwing in my face all of the damn fucking time.
That was why i had Connie come back to work Mondays and Fridays, and i was going to have you, brother, work the rest of the days and hours. So that sister could be back with her children and have her time back. And so i would not have to deal with her temper and yelling at me anymore.
That worked until you realized you would lose money by having Connie come work the two days a week.
Things finally culminated when you came to work the Saturday of June 22 reeking of cologne, and when i told you i was afraid i would taste it on my oranges, you flew into a red hot rage, gave me your two week’s notice, and then you literally LEFT me, with no breakfast, and no way for me to get me to my dialysis treatment that day.
And then you went to the labor board. All because i refused to sign the incorrect fraudulent timesheets that you kept trying to submit.
You and your sister never truly loved or cared about me, and neither of you ever had my back. If you had cared, you would of treated me and my home with respect and dignity, you would of listened to me, you would have read my blogs, you would have read all of the other things i gave you to read on Autism, neurodiversity, disability, and disability rights, and you would of believed me and you would of had my back. You would of both had my fucking back. I also include you, Lucky Mama.
You wouldn’t have stolen from me and taken all of the money you took. You would of respected my routines, rituals, sensory issues, triggers, quirks, etc. You would have respected me, seen me and heard me. You would have shown UP for me.
I have had nothing but nightmares most nights since you all left me. Nightmares. Nightmares. Nightmares. Nightmares that won’t stop.
How dare you.
How dare you even call yourselves caregivers. You are not caregivers. Caregivers have a real heart, and treat and accept their clients as they are, and work to get to know them, their likes and dislikes, and go out of their way to honor their clients and to make life as happy and pleasant as it can be for us.
You are both liars, thieves, and scammers, and you both belong in prison, and never allowed to be caregivers ever again.
And if you believe in God like you both always told me you did, you will read this and realize the full on gravity of what you did to me.
I always knew that something was different about me. I knew that I was different since I was about 5 years old. I just didn’t know how I was different.
It wasn’t until I was 6 when my mom told me that I was autistic—that explained why I often quoted from TV shows (which was caused by echolalia), didn’t understand verbal instruction, had difficulty communicating with others, and often had meltdowns.
However, the way my mom told me of my neurodivergence made it seem like being autistic was a bad thing, and at the time I was already punished a lot at school for having meltdowns.
Did I want these meltdowns to happen? No, I didn’t. I tried my hardest to calm down, but then the teachers would keep yelling at me while I was melting down, which only made things worse. As a result of these meltdowns, I would…
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Posting this mainly for my records. Because the two people, a brother and sister, whom i let into my home and trusted to care for me from July 7, 2018 through June 21, 2019, took so much from me that i am only now way too slooooooowly trying to replace.
Things The Brother Broke
*A shiny black and silver chrome butterfly candle wax scent burner i had in my kitchen that i really enjoyed because—butterflies—the nice scents that filled my house—and the way it lit up my kitchen counter where it sat.
*A large one quart sized glass pitcher with Cobalt Blue trim that i used to keep all of my rocks in.
*One large office-sized stapler
*One purple electronic rechargeable Swifferjet mop
*A green Hoover upright vacuum cleaner with attachments, i had bought in 2012, with money from the sale of my car.
*My Klipsche computer speakers and subwoofer that i had on my desktop computer, I really enjoyed the way they sounded. He replaced those speakers with speakers that are hard to adjust the volume on, and they are also quite shitty-sounding.
Things The Brother AND Sister Both Took/Stole/Misplaced
This is a quite long list, folks, so grab a cup or glass of your favorite beverage, iced, or warm, and relax and read on, please.
*A five step step ladder i had also purchased in 2012 with the money i had from the sale of my car.
*Two large green travel duffle bags i had purchased from Amazon
*A large black canvas suitcase on wheels with handle that a friend bought for me
*One small zipper travel carrying case big enough to carry all makeup, cosmetics, medications, vitamins, etc., in case i travel
*A $25 dollar complete manicure-pedicure case i also bought on Amazon—i did finally replace that this month.
*Five adult coloring books that a friend and my sister both bought for me
*Two decorative plastic bowls i bought to organize and keep my coinage change in. One was teal blue, the other white with teal blue fish on it.
*A full length mirror i had bought in 2007 at Target.
*One of my heavy duty beige-colored folding chairs is still missing.
*One twelve piece screwdriver set i also bought on Amazon—i also just replaced that this month.
*A 17″ HP computer monitor
*One 54 set of multi-colored gel pens for coloring
*All of my fine tip and wide tip Crayola markers for drawing, art.
*Most of my multi-colored Sharpies
*All of my highlighter pens
*All of my sketch pads i would do my drawing and art on
*All of my multi-colored file folders
*Two pairs of my good scissors
*Two rolls of tape, one duct tape, the other packaging tape
*One of two of my small trash cans-it is hot purplish pink
*Four tubes of Remedy Olovamine Anti-Fungal Cream
*One seven ounce tube of Silva-Sorb wound care ointment
*Ativan—my Ativan pills were always counting as less pills in the bottle than my refill amount. The last time i got a refill it was for 90 pills. 90 pills in a refill—yet when i counted them a few days later, i ended up with 86 pills. I had not taken any of my Ativan at that time, and was using my CBD oil instead to control my anxiety. As of Brother’s last day working for me, i had only three Ativan pills left, and i had not taken but maybe ten pills all told out of the 90 pill refill for my use. Just 3 pills are now left in a bottle that was supposed to at least have 80 left by now, because, that was all of the pills i personally took from that bottle.
*Candy–several pieces missing from bags of—
–three red bags of Lindor Truffle Chocolates,
–one quarter of a jumbo bag of Mars Minis (includes miniature snack sized 3 Muskateers, Milky Way, Milky Way Midnights, Twix, and Snickers),
–most of the mint and caramel chocolate squares also missing from a bag of Ghiradelli chocolates that my friend and past caregiver, Connie Carter gave to me for my birthday this year
*Other candy from my candy dish in living room
*Other candy from my candy drawers
—peanut butter M&M’s
—Reeses white chocolate peanut butter cups
—Reeses regular chocolate peanut butter cups
—Handfuls of my assorted hard candy
*Food—i would find my pepperoni pizza Hot Pockets routinely missing
*My red Solo cups
*Cleaner/Air Freshener—i would routinely find my Windex, lemon Lysol cleaner, and Febreze gone, and out in the garage room
*several of my C-cell, AA, AAA batteries,
*several flourescent curly cue light bulbs,
*one of my power failure lightbulb lights that look like a lightbulb and socket
*my canned air that i use to clean out my computer
*One soft black knit cap that my mother bought for me
*Two light velour, velvety-textured blankets my mother bought for me. One is a full blanket, and is dark forest green-colored, the other two are lap and shoulder wraps, and are a dark rusty red color.
*8 large bath towels
*two kitchen towels
*My birth certificate
*10 copies of my SSI re-evaluation paperwork from 2005 and 2007
*One long wand Swiffer duster
*One 12 pack of soft white crew socks
*One 60-ounce blue Correlle or Pyrex mixing bowl
*Two white plastic coffee mugs
*3 small steak knives
*Several carving and cutting knives
*Several pieces of silverwear, teaspoons, forks, tablespoons, butter knives
*My measuring spoons are also all gone
*Two cooking skillets
*I used to have a collection of over 55 music CD’s, 55 plus books, and all of those are also gone
*All of the old clothing i used to have is also gone now—several cute tops, and pants that i knew would fit me if i ever were to lose enough weight to fit in them again, so i would not have to purchase new ones
*Four dark blue money pouches
*Two boxes of staples that go with my stapler that he broke, all of my staples are all gone now too.
*3 packs of large manila envelopes
*2 packs of medium sized manila envelopes
*2 boxes of Mead white legal sized self adhesive privacy envelopes
*2 boxes of small Mead white envelopes
*A red ruler, and green ruler, are also gone
*10 large white poster boards
Things They Took That They Did Return
*A small crystal cross
*My desk drawers
*My artwork and art portfolio
*Three of my four heavy duty beige folding chairs
*my white Hoover carry vacuum that belonged to my grandmother, and is over 40 years old
*My green Living Bible
*Some of my colored file folders
*Some of my Sharpies
*The wing that broke off of my angel that is in my bedroom
But the above things that they broke and took from me, are all things that, either i myself worked hard to buy out of my own pocket, things that were given to me by friends, my mom and one of my sisters, and things i already had that i needed to keep on hand—-now i have to work to replace ALL of it. And i doubt i can do so without some sort of a financial miracle.
In Home Care Providers who are tasked to care, but who instead come in and take over a clients’ entire home and even herself—-then use and steal from that person who is sick, vulnerable, disabled, and on a fixed low income, need to be held strictly accountable, placed into prison, and then made to work to pay that person back for everything they broke and took from that person.
Every single thing that they took and stole from me.
I now need to go apply to get a whole new birth certificate. All of my SSI paperwork is gone now too.
I have canary yellow walls that wake me straight up out of a sound sleep too early in the morning, on bright sunny mornings, because of their brightness.
I was routinely told by that brother and sister that my autism was not real, that my physical mobility limitations were just me being “lazy” and trying to get my way, that i was just being mean and demanding and spoiled. Told that i didn’t appreciate them and all they did for me.
When i was asking them to accomodate my disabilities.
I still have nightmares almost nightly, about this brother and sister, who came into my life, telling me they were going to be the friends and family that i have never had, and always have longed for—then, once i put my trust in them, they turned around and took full on advantage of me, and took FROM me.
While i spent 3 long weeks away from my home, so that he could rip all of my carpets out and refurbish the hardwood floors underneath, and paint my living room walls the nice sift blue or lavender that i requested he paint them—-they were spending much of that time with both brother and sister partying till all hours of the night and morning in my garage room. And painting my walls a color they knew i hated–hate.
Also realizing that they basically took much of my time away from my home to completely comb through all of my personal papers, documents, etc., and take even those from me. To actually use against me!
To realize that that job of taking my carpets out, then refurbishing the hardwood floors underneath, should of only taken at least a week at the MOST for them to do—but it took the brother and sister team an entire three weeks—with me up at his house staying with his mom and his girlfriend, where i was badly uncomfortable—-that was not okay.
The yellow walls in my living room were not okay, and are still not okay.
The constant gaslighting i got from this brother and sister,
the way they were always dismissing my needs and requests,
and dismissing the way that I liked for things to be done for me, IN MY OWN HOME,
the daily promises they would make to pay me back for the stuff and money they took,
then they’d break those promises
the daily making promises that we would go this place and that, then
suddenly the plans would change, and or she would take the car we were to go in
so then we could not go that place or this place
the daily circus of them always being late without letting me know,
their phones shutting off and going straight to voice mail,
the constant worry of are they going to leave me without a way to get to dialysis, a way to eat, or are they going to leave me stranded at yet another medical or mental health appointment
the daily battles just to be heard and seen, to really be heard and seen by them,
the daily battle to make them see my autism, see and believe my autism, see and believe my physical disabilities
all of my things being moved, and gone, all of my things and plans and routines—always being moved, always taken, always gone, always messed with
my head always being messed with, my head, my emotions, my feels, always being fucking messed with
the constant changing of schedules, the constant upheaval—not to mention the large sums of money they took from me, from my duffle bag, and from me, they asked for it all the time—
—when i would come home with five hundred in my duffle bag, and end up next day with $180 of that because one of them snuck in and took from my wallet while i was sleeping
their unpredictable temperament—one day we would all be okay, the next day, even sometimes the next minute—suddenly i was being yelled at and scolded again
I was often yelled at and scolded by them
i was expected to act and do their idea of normal neurotypical
if i didn’t, i was told about it loudly and with shame inflicted upon me
this has all affected my kidney dialysis, has even affected me being able to go in to get the surgery that i STILL need to get a permanent kidney dialysis access port placed in one of my arms, so i can finally be free of this awful chest catheter.
I am still reeling greatly from the effects of having the brother and sister as my care providers. I am reeling mentally, emotionally, and financially. My credit cards? Are all still maxxed out. I feel as if i have been placed deep into a dark hole that i will now never be able to climb out of. And this hurts on all levels. And brings me to a depth of DAILY despair that i can still not put words to to fully describe the daily agony and anguish i walk with. Because of the blatant and deliberate intentional cruelty of a brother and sister who kept telling me how much they loved and treasured me.
I have only been able to replace some of the towels they took, and a few other things. But i need so much more still.
This is not okay.
I am going to keep on writing. It’s the only sure thing that i still have of being able to process through all of this garbage i had to live with day in and out for the past year.
One good piece of news is that i do have Connie back in my life now too. She was my caregiver for four years, from March of 2014 to March of 2018, and only quit because she got an excellent job offer that she could not turn down. She came back when the brother suddenly turned on me, leaving me with no way to get my breakfast, and no way to get to dialysis on June 22, 2019.
The caregiver abuse that i have suffered, sadly happens to far too many disabled and elderly disabled people. Serious reform needs to happen so this can finally be stopped.
Masking, people pleasing…..i’ve been doing it all of my life because of the message the harsh neurotypical world still gives me that my way of thinking, coping, dealing, etc., is wrong defective and broken.
Just….stop, y’all. Stop misunderstanding us.
Start listening to us and learning about us.
We Autistics were born this way, and we are NOT wrong , defective and broken.
By Evaleen Whelton 💛
This is a letter I wrote recently but never sent….
Many thanks for seeing me last Wednesday. You may recall you saw me at 12.45. My appointment time was 10.45 am. I understand things don’t always run to schedule so I always allow extra time for such appointments.
But I guess two hours was too much for me. On meeting you, I mentioned I was waiting for two hours. You explained that you had to deliver bad news to many women that morning and that they deserved your time more than me. They undoubtedly do and I’m glad I wasn’t one of them.
Patients receiving bad news should be given the utmost care, time and attention.
I thought the same when my family were kept waiting almost an hour when we were called in for our last visit with my Mum’s consultant. I thought…
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of more caregiver abuse as they began to come up
after the nice honeymoon phase i got with both of them, a nice brother and sister package they were
last July and August when they both came to work for me and be my new friends
Sister came July 7, and brother came August 2.
Right away, i met their mother, who was very sweet to me
They were all so sweet to me in the beginning
when they kept telling me they still hadn’t read my blogs or the other material i gave them on my autism, my meltdowns, my likes, dislikes, triggers, etc., so that those would help them to better understand and get me
when, right from the get-go, they were both always late getting to me, and also picking me up from dialysis and then their phones would go dead so i could not reach them to find out when they would be getting to me or even IF
I did see the signs when shortly after brother began working for me, he went to fix me tuna sandwiches for my dinner one night,
and he would not listen to me when i kept telling him how i wanted them to be fixed.
He went and put very little mayonnaise in the tuna mix,
they were dry,
and i had to ask him to come back in and redo them,
and he got irritated because he was leaving to go party with his friends..
He did redo them but showed his irritability towards me at having to do so.
But it was still the honeymoon stage, so he quickly apologized, saying he should of listened to me when i told him how i wanted the sandwiches fixed
when i had to walk out of an appointment with my primary care physician because brother ordered sister not to sit there waiting with me, and he needed her to come help him.
When i was ordered to go stay with him and his mother so they could pull all of my carpets out of my living room and bedroom. The reason? Was because my carpets were agitating his asthma. He said if i did not go to his house to stay, and let him pull my carpets out, he would quit working for me and i would have to find another care provider.
when after one and a half weeks at his house, he ordered me to take a shower, and then when i explained to him the accomodations i needed to be able to handle taking a shower, he got irate, refused to accomodate my shower workarounds, telling me showers are not meant to be pleasant and comfortable
He also told me “Why can’t you take a shower like normal people do?”
All i asked for and needed was to be wiped, then to have a towel on my transfer chair so that i would not have to sit on the cold surface, and another towel on the bottom of the tub, so i would not slip in the tub
He accused me, wrongly, of not caring about myself!!
Then threatened to quit me if i did not take that shower—even though i was upset, having a meltdown, frightened and in tears
Finally, when i had completely broken down
Sitting buck naked on the toilet in the bathroom cold and shaking,
he snapped right back to nice and compassionate and i got a pleasant shower
I never forgot that though, because that showed me that he had a temper
I am afraid of tempers because of the way my father and most of my siblings treated me growing up
Much similar to the way the brother caregiver was treating me
The way G, a friend i used to have, treated me from 2006 through 2012
Then a long string of abusive caregivers from 2012 to 2014, then 2015, when Connie and i needed a one month break
When he got angry at me that Saturday after dialysis for needing him to replate my food and get my backpack inside where it would be next to me before i could eat the KFC he had bought for all of us
He had plated all of my food on the same small plate, and all of it was bleeding into each other. That is a sensory issue for me, a big one.
Sensory issues mean i need for things to be a certain way
why didn’t he respect that?
Why couldn’t he respect that?
when it took a whole three weeks for him to get my floors done in my house
when i finally came home on Monday October 8, 2019 to find bright canary yellow paint on my living room walls, many of my things moved completely, waaaaaaay too many of my things missing, my computer speakers no longer working, and my TV sound bar no longer working, when he again got angry at me and accused me of not appreciating the hard work he had done for me, when i did appreciate their hard work alot, but all i could see was that i had lost my things, my space, my HOME!
My gas bills also went up to $55 and $68 dollars, because they both were always taking showers at my house, and using my washer and dryer almost daily, to wash their clothing. In addition, they would often let their friends take showers and use my bathroom.
90 whole minutes after my dialysis treatment.
He began yelling at me for taking out a paper towel to wipe my nose when in the car with him, saying it was germy, and that the particles from that paper towel would transmit my germs to him.
Another thing is that whenever brother and sister would take me to medical appointments, they would sit behind me in the exam room and basically not have my back if i was talked down to or talked to rudely or rushed in those appointments.
Already still rattled from that morning’s events, i got upset again. And at first, Brother was willing to fix it for me. Until Sister popped in to start in yelling at me again. She called me ungrateful and selfish, and said that i did not appreciate anything she and Brother did for me. I went into another screaming spell so bad that Brother again lost his temper, and together, they both stood in the doorway to my living room, screaming at me. Telling me again that this wasn’t autism, this was me being an abusive monster. I plugged my ears, pleading with them to just take me to the bus station, so i could leave…..I could not bear to hear their yelling anymore…..
Sister just got even meaner though. So mean, that one day, the week before Father’s day, she got in the car, to drive me and brother to his house and would not speak to me at all, and when i would try to talk, she would talk to brother loudly right over me, making it obvious i was not welcome in the car.
I had to have brother take me home early from that party.
A new update and notes to the above, written Wednesday, September 4, 2019:
Because of the stress i was under during the time the brother and sister were my caregivers, i was never able to follow up to get my second fistula, nor was i able to follow up on getting the first fistula surgically moved up closer to the surface of my arm, so that it would start working. FYI, a fistula is an arm access that is surgically built in one’s upper or lower arm using a vein and artery to make up the fistula, so that the person can get better quality dialysis. It is meant to be a more permanent access port for dialysis, and is much more reliable and poses less risk of infection, than a chest catheter does. But at this time, i still am waiting to get a new appointment with another vascular surgeon, because i need to get this taken care of. This time i am going to go for an AV graft. That is an artificial graft that is placed in the arm, and is also as reliable as the fistula. Unlike the fistula, which takes anywhere from one to three months for it to mature before it can be used, an AV graft can be used for dialysis access within 48 hours of it implantation in the arm.
In the months when the stress began to mount with the brother and sister, it began to affect every single one of my dialysis treatments. My blood pressure would routinely spike wildly up and down, and was often at stroke level, my machine would alarm constantly, and once about every two weeks they had to put the Acti-Vase in my catheter in order for my treatments to proceed. Then it progressed to me making weekly visits to the hospital cath lab to have my chest cath replaced. They finally had to put a balloon stent in the artery or vein?—I don’t remember which— and have yet another new chest cath placed in my chest in the week after the brother abandoned me.
[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.]
*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.
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.
Of Lei Wiley-Mydske’s many endeavors, this autistic adult, disability activist and proud wife and mother in a neurodivergent family spearheaded a movement to create neurodiversity libraries throughout the world. She started her own neurodiversity library, the Ed Wiley Autism Acceptance Library as a needed response to: (1) the abundance of mainstream messages about autism that focus on fear, stigma and pity; (2) the lack of inclusion in school and community; (3) the dominance of parent-centered “support” resources; (4) the strong focus on the pathology paradigm/medical model; (5) the lack of attention paid to diverse autistic voices; and (6) the widespread misunderstanding of the meaning of acceptance.
The need to counter the negative messages and the suppression of autistic voices is inherent in the mission of autism acceptance and neurodiversity libraries. Neurodiversity libraries serve to: (1) curate and provide access to a collection of information, materials and resources on autism acceptance…
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very much define me
When you do a something without realizing it can be a trigger for me
When you do things without asking me first
Change things on me without my consent
Or change my things around without asking me first
When you yell at me, scold me,
talk over me and then assume and judge me wrongly
then leave it all unresolved for me
No closure, just walk out on me
I am up all night crying
thinking the worst
and wanting to literally run away from my own home
At the same time i am begging for God to take me
I am not the monster you think i am
I do not act and react to manipulate and control other people
I have alot of sensory issues, many are inherent to my autism
But many are and have been brought on by a lifetime of trauma after trauma
I act and react because i am triggered
because my brain is wired differently than yours
Please, for the love of God, understand that
When upset and in distress, i am going to write about it
To educate you and others
And to help me to process through my time of upset and distress
It is NOT to slam anyone personally
It is not just because i want to hate
and put that someone or
someones on blast
I just have to write
Because i need to be heard
I need the world and those i care so deeply about
that still seems hell bent on misunderstanding me and making
us autistics out
to be the villains we know we are not,
then silencing and trying to fix, cure and erase us
To hear my words that come from my very heart and soul
THAT, my friends, is why i write
The things i am not
I am not just a “negative person”
I do not hate myself
I am the way i am due to a lifetime
of my autism being misunderstood and judged way too harshly
And me being rejected by others over
and over and over again because of my autism
I am not ungrateful
I am not selfish
I am not rude
I am not bad
I am not a terrible horrible awful this and that
I AM AUTISTIC AND I AM DOING THE UTMOST BEST THAT I CAN
WITH THE LIMITED TOOLS I HAVE IN MY TOOLBOX.