I Did See The Signs: When Fear Makes One A Prisoner In Their Own Home, Re-vised And Re-Edited Again

A new revised edition of this blog, for more clarity, plus updates.
I did see the signs
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.
Oh, at first, we were gonna all be a team, a family, the happy accepting family i never had
Right away, i met their mother, who was very sweet to me
They were all so sweet to me in the beginning
I did see the signs
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
I did see the signs
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
I did see the signs
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.
I did see the signs
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.
I did see the signs
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
I did see the signs
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?
I did see the signs
when it took a whole three weeks for him to get my floors done in my house
I did see the signs
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!
There were lots of fun and happy times, especially in the first 5 months of them working for me. I really did have some really awesome times with them in the beginning. At the end of last August, he bought a nice car, and immediately took me through scenic back roads, up to his house, then on a drive up to an area of Pismo Beach called Shell Beach, to sit and watch and hear the ocean. We talked so much that day, and that day, i felt a real bond between me and him begin to develop. We then ate at Five Guys Burgers in Arroyo Grande, which was delicious. The next week, we went back up to Pismo. The next day we ate at the Rock & Roll Diner in Oceano. We also went on other spontaneous outings, to San Luis Obispo, to eat at two Italian delis there, then Santa Barbara, to eat at another Italian deli. We went on alot of outings in that car, which had SiriusXM Radio in it, so we could enjoy my indie rock and alternative rock tunes. I was so happy until the mental and emotional abuse began to happen.
But the signs were always there, always coming, always popping up.
They took over my middle room, moved their computers in, their clothes, their refrigerator, their couches and beds, their food, and my electric bill went up past $100 for the first time ever….with it being $166 in February. My electric bills before they moved in? Were always well under $60 a month. The highest i had ever paid was $68 when we had a prolonged hot spell that lasted two weeks.

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.
They often asked me for money, because they both always seemed to be dead broke—and always out of gas for their cars. I had to pay for their meals out with me, pay for their cell phones to be turned back on, as well as pay for their gas and food, snacks, and his cigarettes. If i didn’t, i would not get care. No, they never threatened me, i just knew it would happen. And when he was without his ciggs, he was a bear.
I even paid for some of her medical visits. I have an IOU paper that she and i both signed for $280 of the much more in $$$ that they both took from me these past 10 months. In addition, trying to get him to pay me for the monthly difference on my electric bill each month was like pulling teeth.
Both of them would often actually block me from coming into the middle room. In addition, they both played games with me: when i needed them to come, they would tell me they were coming, then take their time, then i would have to, on painful hurting back, hips, knees, legs, with the leg lump, struggle to walk back and forth and back and forth, repeatedly to my laundry room to call for them to please come help me, please come sit and talk to me, please just come BE WITH ME.
Thanksgiving was a beautiful time with his family. Delicious food, and all of them were so sweet to me, including my two brother sister caregivers.
Then in December, things got worse. One night at the end of a dialysis treatment, dialysis, sister decided to rush me out of my chair, and to get my dinner. When i am done at dialysis, i like to wind down and say my goodbyes to my machine, who i have made an imaginary friend out of to cope with my dialysis. I have always made imaginary friends out of roads, highways, and electronics, to cope with being neurodivergent me in a harsh neurotypical world that still views us autistics in a very negative and wrong manner. My machine’s name is Rebecca, and she is the truly genuine sweet angel who gets me through what would otherwise be unbearably scary dialysis treatments.
Sister chose that night to aggressively pursue me rushing so that she could get her kids their Christmas tree, when she could of done that any other night, but the night she was working for me. Just the prospect of her rushing me to get my dinner, was unbearable enough. She even went so far as to tell me i was causing her kids to all cry.
She did go there, but never came in, just sat out in her car, arguing with me via Facebook Messenger, which threw me into even more of a bad meltdown right in my dialysis chair! And then she left, without picking me up to take me home! I finally got hers and brother’s mom to come pick me up….
90 whole minutes after my dialysis treatment.
Then a week before Christmas, we took an outing to Solvang, and again, HE got pissed at me for asking him to make sure my backpack was on my wheelchair before we headed to get Danish sausages and Abelskivvers. He said loudly: “Why do you always have to be so obsessed over that damn bag? It is really quite annoying!” Then when i asked him to get my glasses so i could read the menu, he again got pissed, saying the same thing, then he put my glasses back in my bag in the wrong way that could of broken them.
Why was i always so scared about having my backpack and glasses with me? Because he once forgot my backpack. It was left sitting in the parking lot of my kidney center one evening when he came to pick me up, and he had to go back to retrieve it for me….so yeah, damn skippy, i was going to be hypervigilant about that backpack from then on!
We were going to also take a drive to Los Alamos one afternoon, but she decided to take his car, and took it for the entire afternoon, leaving brother and i stranded here at my house with no way to go anywhere. I spent the entire afternoon messaging her over and over to beg her to please bring the car back. She would say she was coming, but then fifteen minutes, then twenty minutes would elapse, then a half hour, then two hours, and she still wasn’t here with the car. Over and over, she played this game with me. Finally, we needed the car to go get my dinner, and she still wouldn’t bring it back to us. She began telling me “Ya!” over and over via Messenger, taunting me, and i told her i did not like being taunted….
We finally got the car back in time for me to get my dinner, but my dinner was also later than i had wanted to eat.
When he and i went anywhere, he would always turn the stereo in the car up full blast, without my permission, making me feel like he was trying to drown me out. I had to shut up and put up. Because by that time of the tuna incident and when he ordered me to go stay at his mom’s so he could pull the carpets out, i had seen the signs of his temper.
A week before Christmas, we had to go up to San Luis Obispo to consult with a cardio-vascular surgeon about the placement of a second fistula, because the one i had had surgically placed in my left arm back in September had failed. He decided suddenly that i smelled, that i had a foul body odor, and that he needed to have his window all the way down all the way up there. This new thing upset me, because here, now i was being ordered to take showers, and i was taking those showers every fucking time i was ordered to do so by him. So why the fuck now should i stink?
When he saw me finally in tears in the passenger seat, he relented, and put his window back up. But said i needed to take a shower ever day now. You know why i hate having windows down when riding or driving at freeway speeds? Because the sound makes a roaring sound in my ears, makes my ears pop, and makes it impossible to hear the music on the car stereo. Then he said again, that i had candida on my body and in my hair. A month earlier, he and his sister both convinced me to even shave my head. I did as told, because, according to him, my scalp had candida. Note: Connie worked as my caregiver for 4 years, and never once did she notice candida on my scalp or body.
Another note: i do not dislike taking showers, however, i had bad experiences with taking showers and baths growing up, was always made to hurry up, could never enjoy myself in the shower or bathtub. That alone has stuck with me all my life, and now that i have the lymphedema and lymphedema lump, and joint pain, it is physically hard, and tiring to take showers. I do take them though, so that i will not smell and gross others out. But it is hard for me on all levels to shower and bathe.
Then, at Christmas, he got in yet another one of his dark moods as we got to his house. He set me up in the living room, then proceeded to take over the remote on the Amazon Firestick, and watch dark unpleasant videos i didn’t enjoy at all. He would not once let me watch anything i wanted to watch. He also would not serve me any refreshments/appetizers. Then after our dinner, he turned on this awful Holy Roller Hellfire and Damnation Bible thumper that he knew i hated, and when i began melting down, he refused to turn him off. His mom came to my defense and yelled at him to shut that crap off, but he still refused, saying he had the right to watch “Christian” stuff on Christmas. I had to go into the back part of the house to get away from that awful preacher.
Finally he snapped out of his dark mood, came and apologized, then let me have the remote. But the damage was already done. My Christmas? Ruined.
A day after Christmas, he totaled his car. His next cruel act was to tell me that he had run over Rebecca in that accident, and had killed her, and i was to never talk to him about her or even mention her name ever again…..that really hurt me to my very core, because i still count on Rebecca to get me through each and every single one of my dialysis treatments! He also stopped coming into the dialysis treatment floor with me, which also hurt. Before his car accident, he always told me to say hi to Rebecca, and he often came into the treatment area to spend time with me while i was getting my treatments.
Then in January, when i went to a mental health center for counseling, he went in with me, making me believe he was going to stay with me during my counseling session, then after 15 minutes into our session, he abruptly left to go take a phone call. He promised he would be right back, but then as my counseling session kept progressing, and there were still no signs of Brother’s return, i got frantic, as the counseling center was about to close. So we called first him. His phone went straight to voice mail. Then we called Sister. Her phone, also went straight to voice mail. So we called my kidney center social worker, who has always gotten me and who has had my back from the get-go, who already knew about Brother and Sister’s previous history with me….finally, we called their mom, and she knew nothing, so we called him again, and he finally picked up.
When he finally came, he was irate—at ME! For being scared and upset—when i had every fucking right to be pissed and scared. Instead of him realizing he shouldn’t have abandoned me, he lit right into me, in a mean accusing tone of voice, he told me: “Oh, it’s all about you, Melissa, always about you, it’s always got to be about you, you are so selfish!” Finally, when i told him, tearfully, how hurtful and cruel he was treating me, he finally felt bad and apologized. How would he have liked being abandoned, with no way of knowing when or even IF his caregiver was coming back to get him? He apologized. But again, each of these episodes made me even more afraid of him.
And, things only worsened after that. Sister began getting meaner. Along with him. Many a morning, if i would dare ask them to do a thing the way i wanted it done, i was given attitude, then threats that they were going to leave me, with no breakfast, and no way to get to my dialysis treatments.
Next came the snow white scrubs he and sister began wearing to my house. Snow white scrubs, top and bottom, just like the old movies of staff at a mental institution. I HATED those scrubs! Along with those, i suddenly became a germ to Brother, and he also started wearing a face mask to work, which put even more walls up between him and i.
The white scrubs. The face mask. In my own home.

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.
At the same time, if i came into the room to tell them i was depressed and needed to get out, Sister would literally yell at me, and berate me for coming in there and ruining her happy mood. She began yelling at me just like i would hear her yell at her children, harsh mean yelling that made me feel belittled and frightened.
When i asked Brother to stop cutting my toast all different ways, and cut them in half, diagonally, he got pissed, and told me i needed to just leave them alone and let them do their jobs, that i had no say. He also liked to leave space between the middle of the bread and crust with the butter and jam, which i also hate. He also liked to butter my toast when it got cold so the butter was not melted. I hate that. In addition, my oranges often tasted like his and sister’s cologne and perfume. I hated that too.
In addition, he wanted me to just not be in the kitchen anymore, because i was right in their way. He made me rearrange my kitchen so that it could be convenient for them, and not me anymore.
But just as suddenly as those moods would begin, they would stop, with both Brother and Sister. They would become nice again. Then it would cycle right back to the bad moods again. It was always up and down, up and down.
In January, was when we we began having meetings with my kidney center social worker. At first, both Brother and Sister seemed to listen. But then as time wore on, they began not listening. These meetings had to happen though. I wanted and needed to make this work, because the alternative would be more possible mean caregivers like the ones i had had in the past, including K from last year. I kept hoping for the best. I kept giving both Brother and Sister the benefit of the doubt. Because i foolishly believed they loved me, they just needed to learn to understand and get me.
Even so, they always told my kidney center SW that i used my autism as a shield, a crutch, and excuse, and that my physical disabilities were not real either.
He even got irate when i tried to explain that curbs, curbs with bushes, and unstable walking places were a thing. He said to both me and my social worker “I don’t appreciate being told where i can park!”
Excuse me? I am a fall risk!
March came, and still, Brother’s car wasn’t fixed. This presented more stress for me because again, i never knew when Sister would take the only working car and leave brother and i stranded. Even on some dialysis days, she would take the car at the last minute, leaving me worried that she would come too late to get me to my dialysis treatment on time. Worried that i may not even get to dialysis.

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.

At the end of March, he got a white loaner car, and his car was supposedly now finally in the shop, finally being worked on. Also at the end of March, he got in yet another one of his shitty mood with me, which caused my blood pressure to spike to literal stroke level at dialysis, and i was unable to get through that treatment without them having to put a clot busting drug in my catheter. I cried the entire time i was hooked up to the machine (Rebecca) that Saturday.

What happened that time? As he drove me to dialysis that morning, he got another bug up his ass, suddenly began changing radio stations on me and not letting me hear the music i was enjoying, saying the lyrics were really negative, and were bothering him. He proceeded to put it on a station that has the very hellfire and damnation type of preaching and type of Christian worship music that he knows causes me to have PTSD flashbacks to my times going to churches where i was hurt and traumatized. I made him turn it off. He then took out his phone and told me “Oh, i know you will looooove thiiiiiis song!” in a tone of voice i found to be chidingly cruel. When i recognized that song as one of the Christian songs that was a PTSD trigger for me, he got full-on belligerent, telling me he was going to listen to whatever he felt like listening to in his car, and i had NO say. I had a screaming meltdown, and that was how he left me, in the lobby of the kidney center, coldly leaving me there, sobbing. It ruined my entire dialysis treatment that day.
A week later, he took me on a trip to Tepusquet, my old home, and he was being all kinds of nice to me that evening.

And then, Sister’s moods worsened again in April. In May, a week before my birthday, was the whopper of them all. On Tuesday May 7, neither of them were here. It was getting later and later….my blood sugar was dropping, and i needed to eat breakfast. So i called him. Then texted him. No answer. Then i called her. She did answer, saying “I am in a bad mood, and i am not taking any shit off anyone today.” At 11:12 AM, when they were still not here, i called my kidney center SW frantic and in tears, screaming. Next thing i knew, i heard several loud loooooong horn blasts, and they both came charging angrily into my driveway, yelling at me, from the car, both of them yelling at me, and calling me ridiculous, saying this wasn’t autism, this was something else bad, and i cannot act this way. They both kept up the horrible yelling as my SW was listening, and when he realized i was on the phone with her just having her help to try to calm me down, he literally picked up my phone and hung the phone straight UP on our call. They then proceeded, several times, to threaten to leave me….with no way to get my breakfast, no way to get to my dialysis.
My SW called me back, and talked to Brother, and then he finally calmed down, and got me my food, and then took me to dialysis. But i was late, and as a result, did not get put on the machine till after 1:00 PM. I was supposed to be there at 12:15 for a 12:30 put on time.
And that treatment went horribly. I could not calm down at all. The machine, Rebecca, kept alarming non-stop. And my blood pressure was literally at stroke level. They had to put Acti-Vase In my catheter yet again, to make it run so that i could get through my treatment.
Everytime they would upset me, it would affect my dialysis treatments.
That night, Brother picked me up, in a soft sweet mood, telling me it would all be okay. That he was not going to do or say anything to upset me anymore, because he hated it when i was upset. But what happened next, was we got home, where greeting me was my spaghetti dinner with so much cheese on top, it was too hard to put a fork in it.

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…..
Then they both left me, in tears, sobbing and shaking. Before i could think, i pushed my entire tray table of food to the floor, and then
I tried to run away. I took a taxi first, to a friends who was sick, then a Motel 6, but got scared, and came back home. But i still wanted to run away.
I got Connie to come the next day, and together we talked to Brother. He agreed to have Connie start working for me Mondays and Fridays, and he would still do the rest of the days….no more would his sister be in the picture.
Things went great until he figured out he would lose some of his income by having Connie come as a second caregiver.
He still treated me really super great though after that. But he kept trying to turn me against Connie.

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.
And then on Father’s Day, we went to his house for a BBQ. All went well, until sister’s friend, who i had met before, showed up, and began telling me to stop the stimming i was doing. I was just sitting in the kitchen tapping on my cane. She told me to stop. I tried to explain about my autism and why i stim, and she goes: “Hon, i already know you’re autistic, and know ALL about autism. I am around alot of autistic children. Everyday. We are all alittle autistic, ya know. We all have our issues. We just don’t broadcast it like you.” She got right up in my face, like she was going to hit me.I got pissed and told her off, told her to get out of my face, that she didn’t know me, and then sister came in and began yelling telling toxic friend “Oh, Melissa acts like this all the time! “ then berating me for having my SW call her to try to reason with her for the umpteenth time the week before.

I had to have brother take me home early from that party.
Then a meeting followed between me, Brother and his mom, with them again trying to talk me out of having Connie as my secondary caregiver. In that meeting, i saw a whole other side of both Mom and Brother that i found to be unsettling.
The next day, back to the cath lab i went to try to see why my catheter wasn’t working. Brother was in that same cocky mood all that day too. And it made me sick to my stomach. At IHOP that evening, he again berated me for wiping my nose at the table, and for holding my hand over my salad the way i was holding it.
That was Friday June 21. That night, he went out with his friends and left me all alone.
And then, on Saturday, the 22 of June, he came dressed in dress slacks, dress shirt, and reeking of cologne. He and sister both already knew full well i hate tasting their cologne and perfume on my orange and apple….yet here he was, with full blown cologne on again. Aaaaand, he was in a full-blown bad mood. When i pointed out to him that his cologne would be on my orange, he lit into me, threatening right off the bat he was going to leave. Then he did—-finally making good on his and sister’s threats to leave me without my breakfast or any way to get me to dialysis—at all that day.
When i got my neighbor to help me, Brother flew back into the driveway, sending him home, then yelled at me and left me again as i sobbed, pleading with him to please give me food and take me to dialysis. He got back in his car, telling me coldly: “No worries, you won’t starve to death, you will manage!”
That was a voluntary QUIT. And criminal negligence. 
The following is what he wrote about that Saturday—i received this in response to an email i wrote to him because he now keeps trying to submit timecards—for the wrong amounts. Not gonna lie, this thing he wrote was cruel to the core, and it just solidifies why i have the trust issues i have.
[Trigger warnings for extreme ableism, Othering, body shaming.]
“I just read up to the part where you try to use autism to justify why you believe it’s ok to be a horrible person to anyone. It’s disgusting how you treat people and for you to be ok with it . Getting upset is a part of LIFE! Not getting your way and throwing a fit about it IS NOT AUTISM ! FYI I was not there for your autism , and people like you who use it to take advantage of the system and use it as a crutch is wrong . I smelt strong of cologne so I wouldn’t have to smell your pungent sour Oder due to you not wanting to bathe and not wanting me to wear a mask . Please don’t write back as I will no longer read your emails due to you thinking it’s ok to still be nasty and hateful.”
These are the same things he would often say to me during the past several months, whenever he was in one of his dark bad moods.
I called an ambulance to be taken to the hospital so i could dialyze there, and so i could stay away from here, because i was now frightened, because he still had keys to my house. I am glad i did that, because now not only is all of the brother sister team’s abuse well documented with my kidney center social worker, but it is well-documented with Adult Protective Services, the hospital where i went, and my local police department.
Connie is now back as my caregiver, and the brother-sister team are out of my middle room and life.
I do intend to see to it that they never get to do this to anymore vulnerable people. I also intend to find a way to spearhead legislation with teeth that will finally hold abusive care providers strictly accountable, and not be able to work in this field ever again.
Postscript—because of what Brother did by leaving me last Saturday, i almost fell in my driveway. Again, i am a fall risk! I am also a borderline Type 2 diabetic, which means i need to eat on time. In addition, missing even a single dialysis treatment can also set into motion a chain of events that can shorten my life, and it did set in motion that chain of events.
I was not able to dialyze at the hospital that last Saturday. I went into the kidney center and got 3 hours of dialysis that following Monday, but then when i came back for my Tuesday treatment, my catheter stopped working, and i had to miss yet another dialysis treatment to go to the cath lab—again—to get another new chest catheter placed in my chest. I am now dialyzing great again.
But they took my artwork from me. They took several of the drawers out of my desk. They took my old vacuum cleaner that was my grandmother’s that still works after 40 plus years. They have taken from me so many of my things that i need and want back. Most of all, they robbed me of what could have been a great time of real joy in this past season of my existence.
And i am not going to forget this.

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.

They did also finally return my art, my desk drawers, my white vacuum, and two of the three folding chairs they had taken from me. But i had to have my locks changed on my post office box. Because he kept the key. And i am slowly working to replace all of the other gazillion things they took—stole—from me.
But i am not the same.
I love that Connie is back. We are doing better than ever. She cooks for me almost every night—delicious meals of enchiladas, Mexican rice, meatloaf, ribs, etc. She makes my breakfasts the way i ask for them to be. She plays my music in her car, on her Pandora Radio. We go out to eat often. We laugh. We talk. She has no need to take over my middle room or my house. Or to stay away from me so that i am left lonely and all alone each afternoon. Like the brother and sister always did to me. She is never late getting to me, and picking me up at dialysis. She comes right into the lobby to sit and wait for me to get done at dialysis, so that they all know she is there waiting for me.

The brother and sister were always out in the middle room, leaving me all alone every afternoon. I hated that. I SO hated that! They would often come late to my house, and were often late to pick me up at dialysis,as much as 90 minutes late at times. And to top it off, they would often not even bother to come into let the techs know they were there. The techs always had to go out in the parking lot to hunt for them. The brother and sister always seemed to make it a daily game with me as to how late they were going to be to show up for me, and when they would be here for me. It made for unbearable daily stress, and made me not want to even wake up most mornings.
I wanted to stop my dialysis and die. I felt no hope. I felt only thick blackness and despair so deep when they were in my life, that it sucked me dry. It took that final act of cruelty, him driving off and leaving me with no breakfast and no way for me to get to dialysis–to open my eyes that they truly did not care about me—they were in it only for what they could gain materially and financially. And because i believe, i truly believe in my heart of hearts that they are cruel cold-hearted sadistic mean monsters.
No. I am not the same. I am plagued by almost nightly nightmares of the brother and sister. Sometimes the dreams are where they are nice and apologetic. But many of my other dreams are of them being mean and yelling at me over and over and over again…and me trying to escape their awful yelling and meanness. Thankfully, i can sometimes wake myself up before the dreams go any further. But they happen, and i hate these dreams.
And my trust issues are even more pronounced now than they ever were before. I am afraid of getting any other caregivers for fear this could happen all over again.

And i hate the memories that just won’t go away. Both the good and the bad memories i had of them, that began to outnumber the good ones.
The signs were all there. But fear and wanting to believe they were good people who were just uneducated, who just needed to learn, kept me from firing them all the times that i could of fired them.
I will never forget the hell they put me through. Yes. It has changed me forever.

10 thoughts on “I Did See The Signs: When Fear Makes One A Prisoner In Their Own Home, Re-vised And Re-Edited Again

  1. Ania Onion Bula

    Being autistic is often like having your senses turned up to 11 and often struggling with trying to explain specifically why something is bothering us. Ironically even studies are catching up to the reality that it’s not our inability to communicate but rather an unwillingness on the part of allistics to receive communication in any ways that they haven’t deemed as the only acceptable method. Often times, pointing out that something is physically painful, like an itchy sweater, a loud sound, a scratchy tag, a continuous buzzing, the intensity of the light, is met with derision and sometimes even intentional worsening of the painful stimuli until finally the pain and sensory overload reaches a point where a meltdown is the only response possible since escape has been prevented. The autistic is then accused of being violent or unreasonable, and to surrounding witnesses this even appears to be the case since they cannot understand what it happening is a type of torture. It’s abuse. But it’s also how the majority of society treats not just autism but disability in general. We are treated as incompetent when society wants to ignore us, and treated as unreasonable when we ask for accessibility.

    The reason this author’s story is easy to believe is that even your response to it follows predictable patterns of behaviour for caretaker and medical abuse. It follows predictable patterns of behaviour for social and systemic ableism, and even your response to this author follows, frankly, predictable patterns of behaviour for those connected to this type of manipulative abuser (in case there is any confusion, the abuser mention here refers to the caregivers described in this post).

    Abuse in general is often maintained through continuous gaslighting of both the victim and the witnesses. Disabled people have the highest rates of victimization by abusers at ever level, in relationships, in service industries, in medical industries. Often accommodations are treated as unreasonable demands by people who have no understanding of what the disabled person is going through. Often to the point that many of us have had our lives actively put at risk due to these behaviours.

    Rather than going on a campaign to further harass someone, you should take a moment to consider your own damned complacency in this kind of systemic ableism. Or you could just Fuck right off, either way.

  2. melissaautisticfields Post author

    My accusations of abuse and neglect written in the above blog are indeed, fact, and are well documented via my kidney center, Adult Protective Services, and my local city’s police department.

    Deliberately leaving a pre-diabetic person with borderline Type 2 diabetes without giving them their breakfast, and then leaving that same person with no way to get to their dialysis treatment, is, in fact, criminal abuse and neglect.

    As is not letting them have the right to choose which days they shower, how they want their toast to be fixed, asking to not have to taste their caregivers’ cologne on their oranges, being yelled at, judged, falsely accused, in their own home, and lied about.

    Furthermore, telling a client falsely that they have candida, and making them feel as if they are a walking germ, telling them they have foul odors, accusing them of not caring and of not wanting to bathe, are also all falsehoods.

    These caregivers did all the above. That you do not want to see what happened, that is on you.

    I have a right to express the grief and hell that my caregivers subjected me to for these past ten months.

    No names were used.

    You have no legal grounds to ask me to take down a blog that is factual, and is well-documented. And that will help others in this same situation.

    FYI, autism is real, and my meltdowns happened because i was being yelled at and controlled, in my own home.

    I find it so sad that you and my caregivers still cannot see the truth about me.

    If i was so bad, why do everyone at my kidney center love me? Why did one of my caregivers, Connie, stay with me for four years? She did not have the issues these past caregivers had with me.

    These caregivers hated me and all i am about.

    I loved them. And you. So much. So very, very much. Yes, i am going to grieve, and i am going to write about it, because these caregivers have left me forever broken. And this is my story to tell.

  3. melissaautisticfields Post author

    I have removed all comments made by my caregivers’ mother on my blogs that were made in the past couple of days. I have marked all of them as spam so she cannot comment any further on my blogs.

    However, i am copying and pasting them all here to illustrate, through this woman’s words, how i was viewed in an extremely negative light, villified, and gaslighted and made out to be a monster, by her and her two adult children, my caregivers, in my own home, instead of listened to, believed, heard, and respected in my own home.

    This comment thread was begun with this woman’s three comments, the ones i removed.

    They are copied and pasted here, for context, so you can see why these above replies are here, and to illustrate how i was treated.

    TW/CW for extreme ableism, gaslighting, denial of the neglect, abuse, and medical neglect that occurred, extreme defamation of my character.

    Personal names are redacted for legal purposes, as well as to protect the privacy of other third parties not directly involved in my care.

    Comment one:

    “NOTICE TO CEASE AND DESIST Date July 5th, 2019 RE: DEFAMATION OF CHARACTER— FOR LIBEL AND/OR SLANDER Dear Ms. Fields, ***** *****, And **** ***** are respectable professional and has spent their life building a positive reputation. Nevertheless we have been informed that you have been maliciously spreading inaccurate and unfounded information that is damaging to their personal and professional character, along with Ms.**** ***** ( **** ***** )

    Under the laws in the State of California, it is unlawful for an individual to make deliberate statements that intend to harm the reputation of another party without factual evidence or based on hearsay.

    The defamatory statements include, but are not limited to, the following: ACCUSATIONS OF ABUSE, ACCUSATIONS OF NEGLECT. If you do not cease all related statements defamation of character lawsuit will be commenced against you..

    In addition, this shall SERVE as pre-suit letter demanding that you provide us written assurance by July 15,2019 that you will cease and desist from making further factually untrue statements. If you do not comply with this cease and desist letter by the aforementioned date then a lawsuit may be filed in the proper jurisdiction seeking monetary damages as well as pursuing all available legal remedies for your defamation… Sincerely, **** ****. Notary Public of the state of California”

    Comment two:

    “Hello, I like to respond to the story that Melissa Fields wrote, First and foremost I wish her the best, and receive the medical helps that she needs in her situation … Upon reading her blog, book.??? it was to my surprise that everything that she stated is UNTRUE …….

    I’ve witnessed along with many others of Ms. Fields abuse… Its a pattern with Ms. Fields to rant and caring on in this inappropriate way. She has done this repeatedly to all and yes I mean all her past caregivers. ( I have supporting docs to validate) on social media,

    She is 86 out of a few restaurants here in Santa Maria due to her outburst Does being Autistic give anyone the right to throw your food on the floor after someone made it for you? Does being Autistic give you the right to rip up a beautiful picture that a 7-year-old little girl made for you? Does being Autistic give you the right to talk down to medical Asst in front of many? Does being Autistic give you the right to yell profanity, curse word to others? Does being Autistic give you the right to write lies about people on social media…

    Does being Autistic give you the right to make false reports?. Does being Autistic give you the right to withhold money from caregivers that worked providing care?. Does being Autistic give you the right to be mean. evil, to people? I SHOULD HAVE SEEN THE SIGNS ……. DOES AUTISTIC GIVE YOU THE RIGHT? By *** **** ”

    Comment three:

    “Hello Ive known Melissa Fields for a short period of time (9 months) during this time ive witness different kinds of characters, She could be very sweet and turn very evil at most times, There is a pattern with her when it comes to care giving, IHSS does not provide care for individuals with personality disorders they are not licensed, or trained in this field,

    She has been thru 12 or so care givers only to slander their character on social media, and write blogs and stories about non friction events, I have supporting docs, But how much can one take of being slander from a individual that is autistic? Its a form of bullying and using Autistic is why you act this way is unacceptable…… You know the difference between the 2……”

    Readers, my blogs speak for themselves. Including the one above.

    As for her allegations that i was 86’ed from a few restaurants here in Santa Maria, that is one of many falsehoods. I was 86’ed out of one restaurant, when 4 of the employees began harassing and bullying me for being “too different”, and fat. Instead of management taking care of the bullying, i was 86’ed, after the group of young girls lied and then taunted me some more when management’s backs were turned, to where i left screaming.

    As for my stories about the other caregivers, those too, are also fact.

    As for me having personality disorders and different characters/mood swings? Those were incorrect diagnoses written by mental health staff who just wanted to label me in a hurry, and my caregiver took it upon himself to snoop in my personal files without my consent, while i was gone at his house so he could rip out my carpets and paint my living room walls the awful canary yellow they are now.

    Now that i finally have competent medical providers, i have finally been diagnosed as Autistic, with Complex-PTSD.

    As for me witholding pay from my care provider, i am more than willing to sign his timesheets for the correct hours, but he keeps submitting ones for more hours than he actually worked for me. He is not allowed to submit timecards for more than 47 hours in a workweek. He keeps submitting timecards for 56.30 hours, including for that Saturday that he did not work for me, but instead, got angry at me for complaining about his cologne being on his hands and it getting on my orange, so he LEFT me, a pre-Type 2 diabetic, and who has end stage kidney disease, with NO BREAKFAST, and NO WAY FOR ME TO GET TO DIALYSIS.

    I will sign his timecards if he re-submits them for the 47 hours he did work for me within that six day pay period.

    In addition, i threw my food on the floor, and ripped the pictures off of my walls, because i was being literally screamed at, by both Brother and Sister. I had a meltdown. Because i was being judged way too harshly by the both of them, with them saying the exact same things Mom says on the comments above to me, all cruel untrue lies, even going so far as to alledge that i am lying about my AUTISM, and they would not just listen to me and re-fix my dinner that had so much cheese that i could not eat it.

    My sensory needs were not real to them. My autism was not real to them. I was continually belittled, judged, yelled at ,and bossed around in my own home, told when to shower, they got mad if i asked them to fix my dinner a certain way, my toast a certain way, or to not move my lamp.

    And the canary yellow walls? I remember asking for lavendar walls or medium blue walls, as i sleep in my living room, in my lift chair recliner. The yellow walls often jolt me wide awake in the mornings, and i hate that.

    But to these people, i am just a spoiled brat. And evil.

    When i have given this brother and sister the shirt off of my back, as well as given her a place to stay to get away from an alleged abusive husband and him part of that room to set up his office there, given the shirt off my back to them way too many times to count.

    I have paid several months in a row to turn their phones back on. I have gotten him over $100 in packs of cigarettes, hundreds of dollars spent treating them both to dinner, hundreds of dollars in gas money, as well as paid for some of her medications, and even some of her medical visits. I even bought him a refurbished iPhone 6s for $300 dollars on Amazon.

    In return, i got slandered and literally kicked and thrown in the gutter. In return, i got the following stolen from me that i want and need to have back immediately.
    *Four desk drawers
    *A 17″ HP computer monitor
    *My post office box key
    *Three folding chairs
    *My portfolio of 50-plus pieces of hand drawn art that i drew myself
    *A 54 piece set of multi-colored gel pens
    *A $25 dollar manicure-pedicure set that i bought on Amazon
    *The replacement of my broken wax scent burner
    *The replacement of my broken cobalt blue pitcher that my rocks were all in
    *four of my blue money pouches
    *Five adult coloring books, and other books
    *The over $3,000 in cash you took from me for gas, meals out, cigarettes, snacks, medications, and medical visits. Includes the $51 owed for my June electric bill. Includes money stolen from my backpack. And my coffee table.

    Thank you to all of you who know the real me, and have my back. Who know and believe the TRUTH about me and what i have been through.

    Thank you to God, who sees all, both good and bad, that we do to one another on Mother earth. And HE/SHE/THEY notes it all.

    1. Mary White

      OH…MY…GOSH!!! I have read and reread your blog’s And there is 1 big thing I have noticed, over and over again, and that is YOU blame EVERYTHING on anyone and everyone but yourself, everything that I have read is ALL about you! And it’s always someone else’s fault in your many many complaint’s in your life.
      And another thing, You need to learn to forgive other’s, you are alway’s living in the past, it’s no wonder you have issue’s, anyone would, if I was to cling on to bad memory’s and bad thing’s that have happened to me, I would be a mess right now!!! You need to let go of those bad memory’s and just live, forgive those who have hurt you and move on, or you will never be healthy. I understand Autistic people, more then you know.
      As I teach Autistic children and adult’s, I have a small farm with lot’s of animal’s and horse’s for them to learn to ride, and I have truthfully NEVER had any of these Autistic kid’s or adult’s act like you, there is something different about you. I am not trying to hurt you in any way, I do care that you are having a horrible life, but if you just learn to forgive and move past that hurt, you will see your life getting better, I know because I had to learn to forgive a lot of family member’s.
      And it’s not easy to forgive family, just put your problem’s in God’s hand’s, he is the best friend you can ever have. Don’t let the world go by, go out and sit and enjoy life, let God be your friend, he is so easy to talk to! I am praying your life will get better Mellissa.

      1. melissaautisticfields Post author

        I have every right to write as much and as many times as i can about the hell i went through for the past two years…..a hell that was not my fault in any way, shape or form. I feel sorry for you and your family that you cannot see that what you did to me was outright ABUSE. My only mistake was to believe that any of you loved and cared about me and had my back.

        None of you did. Until i can process through the whys of why you all felt it necessary to come into my life and destroy my very sanctuary, i will continue to blog about it. I am also praying for you and your family that GOD will reveal to you the gravity of the sheer agony and hell you all put me through….

  4. melissaautisticfields Post author

    I will yell loudly when you make me prove that i am disabled.
    I will yell loudly when you do not respect the way i like my toast.
    I will yell loudly when you continued to give me my morning orange that tasted like your cologne and perfume.
    I will yell loudly because you refused to believe what i told you about my autism.
    You denied my autism.
    You denied my right to have my home, my things, and my life be my safe space, and even my own anymore.
    I yelled loudly at you because you did not respect ME.

  5. melissaautisticfields Post author

    Plus, i did also buy the Brother caregiver a refurbished unlocked iPhone 6s, for $300.

    Again, my living room walls used to be WHITE, NOT YELLOW. I should know. I have lived in this house since 1994.

  6. melissaautisticfields Post author

    In addition, the documentation you say you have on me, were my SSI re-evaluation files that you had no right, and i agave neither you nor your son my permission to have access to, or to even use.

    In case you haven’t noticed, this is a direct violation of my privacy, and the federal and state medical privacy laws that are known as the HIPAA Laws.

    You can and are in a lot of trouble for that one.

    Because. It is fully illegal to violate the HIPAA laws, and YES, the HIPAA laws also apply to personal in home care providers.


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