Tag Archives: Autistic Adults & Caregiver Abuse

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.

After The Storm Comes Rainbows—My Caregiver Story—Part Six

And now we come to Part Six of my story….a six-part series i have decided to write, because caregiver abuse is a very real, serious, and pervasive problem that needs to be talked about and exposed.

I know; because, as i have told in my stories, i was a victim myself.

Too many times to count.

In the first five parts of my story, i told you about the hell and agony i have been through with all of the caregivers i have had so far through IHSS…..the fear they all instilled into me….and how i felt i was too much at their mercy, and that i had no way out, so i had to put up with their abuse!! And what it did to me.

I hope you will all scroll back to read the last five parts of this series. As soon as i feel i am safe to do so, i plan to set these stories public, so they can be shared freely.

Before i go onto tell the rest of my story, i need to tell you that caregiver abuse takes many forms. The biggest problems, in my opinion, that contribute to this are that:

1) Caregivers are not paid enough money. Most caregivers are paid little more than minimum wage by the county agencies that pay them to work for eligible clients.

2) Caregivers are not properly screened by county IHSS agencies, nor are they properly trained in how to deal with people of ALL disabilities and health issues.

3) There are no oversight committees which hold caregivers accountable.

4) Most Adult Protective Service agencies, the agency a client should be able to turn to, are understaffed, and overworked, and also underpaid, in my opinion. And most are so harsh to talk to, that that, in itself, is a huge discouragement.

This all needs to change ASAP…because caregivers are coming into people’s homes to care for THEM!! Caregivers need to realize that they are going into a profession that requires them to be people-oriented. It requires them to be kind, patient, warm, friendly, and compassionate. It requires a heart that truly cares about others and who truly wants to help others. And if they don’t know alot about that person’s disability and health issues, they need to have an open mind and willingness to learn all they can about that person, their disability, the way they are, the way they like things to be done, their favorite brand names, their favorite ice cream flavors, favorite foods, and what they don’t like as well.

The signs of caregiver abuse are….and these are what happened to me:

1) Financial abuse: When they threaten you, telling you that they are not going to run your errands or shop for you, or take you to your bank, or mail your bills, or run you to the doctor, unless you pay them for their gas. Then they start wanting even more and  more money from you to do these things. Or they come to you saying they never have money for food, and are starving, so you feel obligated to always feed them. Or they ask to borrow money. Along with telling you a huge sob story while they are crying. Or they ask to borrow money and threaten you, that if you don’t give it, they won’t have a car to drive to run your errands anymore. Also, beware if they say a restaurant charges for say, sides of Ranch dressing…..you need to call that restaurant when the caregiver isn’t there, and ask if they do indeed, charge for extra sides of Ranch dressing. I later found out that my favorite restaurant does NOT charge for sides of Ranch, nor have they EVER charged for that!! whenever i would order food from that restaurant, JuJu used to always tell me there WAS an extra charge for my Ranch dressing…this is called skimming. When sending a caregiver out, request that they count the money back to you that you give them, and then request that they always give you your receipt, and count the change they give back to you. The change that you get back, should be an exact match as the change amount on the receipt. If you have your caregiver run multiple errands, he or she should have your change organized so that you can tell easily what change came from what store.

2) When they are more interested in talking on their phone, scrolling down their Facebook wall, texting, and fixing their hair, makeup, and nails, than they are in putting their phones on silent, putting down their hair brush and nail polish, and doing all they can to make YOUR life as comfortable as possible.

3) When they won’t listen when you talk, and blow you off, dismiss, and make fun of, or make light of your concerns, issues, problems, and don’t respect the way you want and need for things to be done.

4) When they lose it with you and talk to you in an angry put out tone of voice, or rush you, or won’t rub the lotion on you properly, or they just slap it on you like you’re a piece of meat, and then hurry you up to get you dressed. And they call you demeaning names.

5) When they yell and scream at you, scold you, and boss you around. When they tell you you can’t have certain things. When they actually forbid you to have certain things.

6) When they argue with you and get snotty and give you attitude when you ask them to do something, and refuse to do it till later, or refuse to do it till it is convenient for them to do it. Such as two days later.

7) When they tell you they are the ONLY ones who will put up with you, the ONLY ones who will do certain things, when they make you feel as if no one else will say, give you baths; or they try to make you feel as if you are trapped and stuck with them, and there is no way out..that if you hire backup caregivers, they won’t do this and that for you.

8) Beware of how roughly they handle you when they bathe, shower, and dress you. It is NOT okay for them to slap lotions and creams on you…and not okay for them to use more than what is directed. It is also not okay for them to put creams and lotions on and not rub them into the skin. If they are consistently rough enough to inflict pain and put bruises on you, this isn’t good. At all!!

9) When they leave things undone, or the housework is done very sloppily or it is halfway done, or they don’t bother to use dish soap and hot water to wash dishes. When you go in your kitchen to find the faucet, microwave, and certain drawer handles sticky and with gunk on them. When you find your bottles of seasonings also sticky. Also, when they won’t wash their hands or wear protective gloves as directed. Or they touch food after touching say, the toilet.

10) When they take too long to run your errands, and/or are consistently late…..and they don’t call you to let you know they are going to be late and why. Or they pull a no-show, and don’t call you, and you have to call them. Then when you do call them, and their phone goes STRAIGHT to voice mail, when they are supposed to be working for you, and you need to be able to contact them, and cannot, yes, there’s a problem!!

11) When you hear them opening drawers that you have not asked them to open. LeeLee did this! Or they take too long in the bedroom to put your clothes away….JuJu did this one night not too long before i fired her, when things started to get their worst.

There are many more warning signs to look for, but these are the main ones i can think of for now.

In November 2012, when i had to let Jessica L. go, i was still very much dealing with the mental and emotional trauma from losing the friendship and support i had from Roger. I was in so much mental pain and anguish by the time JL added to it, that i had gone into my bathroom that night after firing her, and i scalped myself almost bald. That was how deeply i was hurting!!

I can tell you honestly that the past two months with JuJu were just as rough on me mentally. I was also very deeply hurt and affected by her verbal abuse, the way she began to treat me when she gave me my bed baths, and the way she was threatening me and being so snotty to me, that there were several occassions that i almost went into my bathroom to scalp myself again. This is how badly it affects me to be treated like i don’t mattter, like i am just a piece of dirt, by someone who comes into my house with perfectly straight smooth hair, perfume, makeup, etc., and they lord themselves over me as if i need to pay for my existence. I will not lie….there have even been several times during my JuJu period, that i seriously thought about killing myself just to end my pain. But i didn’t.

Instead, when i was at my lowest point….i saw an ad in my sidebar for a local Facebook classified ad group…..and a light bulb suddenly went off in my head, and i posted on there the following:

“I hope that my post won’t be deleted….but i have to post this somewhere….i am an Autistic adult who is in very poor physical health, and i need a new caregiver ASAP, please. I am looking for someone who can work afternoons/early evenings, 2 PM to 8 PM, who is friendly and patient, and who has a dependable car that is easy for me to get in and out of. Duties will include housecleaning, cooking, shopping, my banking, mail pick up at my P.O. box, bathing, showering, taking me to my doctor’s appointments, picking up prescriptions, and companionship. I am a client with IHSS, and hours would be approximately 30 hours a week, 126 hours a month. I hope someone will help me, please. I am in dire need. I think my current caregiver has just quit on me.”

I wrote this on the evening of March 1st, at 6:00 PM, right after JuJu left my house saying she was too sick to work for me that evening. Immedaitely, i had alot of responses, and some of the first were Kay, and Connie. I friended Kay, and Kay and i began to talk. I had her read some of my notes, and she was quite appalled to learn what all i had been through. I hit it off with her instantly, and made arrangements for her to get me to my bank on Monday, March 3rd. She pledged to help get me set right up with good caregivers……and she made good on her word. In no time, i was set up with Connie as my main caregiver, and Kay as my on-call/backup caregiver. Kay is going to be looking for another secondary caregiver for me too.

I was able to finally fire JuJu.

Connie is awesome. She does not charge me a dime or even a penny for gas!! She is honest, sweet, gives great bed baths knows just how to massage my legs, and she is so easygoing, and easy for me to get along with. She has an awesome sense of humor too!! And she can cook too!!

I have have really been having a blast with her. I am feeling so much happier again, i am sleeping better again, i am not as nervous anymore as i was when i had to endure all of those other caregivers who just didn’t seem to have it in them to really and truly care about me.

I feel as if a huge weight has been lifted off of me.

In fact, i feel as though a huge black cloud has left me.

It feels great to know i now have a real human being caring for me.

Connie has a beautiful sweet soul.

She is also going to help me to get a disabled parking plaque so we can park in the disabled parking spaces, and she is going to help me to get a wheelchair, so i can get out more and go into stores again with her.

Kay is awesome also. She got me interviews with two other ladies….who both didn’t work out…but no worries, because i have both Kay and Connie now.

All caregivers need to be like Connie and Kay!!

Yes, i still very much have the street issues. And i kid you not, those problems are still very bad.

I still need to get this basketball-sized lump surgically removed off of my left inner thigh, so i can walk and drive a car again.

But i now know i am going to be okay these next few months till i can make my move to Michigan, which i still very much plan to do, as soon as i have the money to do so, hopefully by June of this year, just in time to be able to enjoy a real Michigan summer!! 🙂

Footnote……this blog was written when i was still planning to move to Michigan. I am not now. I am planning to find a place in my area instead, in the county North of where i live. More in my next blog.

Why We Need To Rise Up And Be Angry—My Caregiver Story—Part Three

In Parts One and Two of this series, i told my story about all of the caregivers i had up to Rose. In this installment, i will tell about how i felt the whole time that i was once again without a caregiver, which was from the last week of April 2013, through the whole month of May 2013, when i finally messaged a local TV station, and they did two stories about my plight. And i will tell you all about Jee, JuJu, their friend Cecily, LeeLee, and KT’s return as my caregiver.

When Rose left, i had to call the general surgeon and cancel my appointment to have him look at my left thigh lump. I had had high hopes that he would look at the lymphedema tumor, and help me get to a surgeon who would remove it so i could have my mobility back. I also now had to rely on my next door neighbor and longtime family friend, H, who was now angry at me over Rose’s leaving, to shop for me once a week, and she also got my mail once a week too. Luckily, KT had become friemds with me again, so KT was able to get me to the bank on May 3rd so i could have my money for the month of May. I also got all of my cashiers checks for my bills so that i would not have to worry about whether i could get to the bank to get those. I pretty much pay a rounded out amount on all of my bills each month, as i know what amounts they are going to always be.

The first three weeks of May that i was without a caregiver were awful, with me getting up late, and sleeping all day long. Most days, i sincerely wanted to die. H was not being nice to me at all during this time, because she was always throwing Rose up to me….”Well, if you had made the effort, she would still be your caregiver,” and other cruel remarks….”Melissa, next time you need to wait till you have another caregiver lined up before you fire your caregivers.” She was always scolding and criticizing me. And then she was always telling people that “Melissa likes to twist things,” that “Melissa loves to cause drama,” and that “Melissa uses her Autism as an excuse and a shield.” 

I didn’t get to go anywhere for that whole month. I was just stuck at home. I began in earnest, to beg my mom to sell these houses, so i could move out of state to a state where i would be able to get help and services. I also began to soick more money away in my kitty so i could maybe escape here on a bus to the East Coast, because i figured if i was there, that i would have more of a chance of getting help, since i would be going to a new place essentially as a homeless person. Then i wrote a message to all of the local TV stations. To my pleasant surprise, the TV station here in Santa Maria, did my story…twice, in two parts. They even interviewed a local psychiatric office, who said that my caregiver issues were never my fault. That it is the fault of caregivers not being trained in how to deal with Autistic adults.

In the meantime, it was becoming so unbearable to depend on H to do my weekly shopping and mail pick up. Because she would buy the wrong things,  put my bread in the bags with it smashed, which i hate, and she would complain incessantly about having to do these things for me. When she wasn’t helping me with my nesseccities, she ignored me completely, never ever did she bother to invite me to go to church with her and her family, nor would she ever bother to have me over to hang out at her house. She wanted to be strangers with me, even though my family and her family grew up together!! Even though H and i used to have an awesome friendship. She even went so far as to block me on Facebook!! All because of whatever Rose must have told her!! I was miserable now because of H!! And because i had NO care!!

The last week of May, my sister had a brilliant idea. She told my mom to call the local Catholic convent and tell them my plight. She did, and that very afternoon, i was so blessed to receive a visit from two sweet ladies, whom i will call Jee and JuJu. JuJu did not have a car, but Jee did, so i hired Jee as my new caregiver. I was back in business!! I also kept after KT to try to hire her back also. Because i missed KT, and wanted her back!!

I was happy again.

Jee took me everywhere i needed to go, and i was able to indulge in my favorite daily treat again with my meals: the Slurpees. However, like Rose, Jee also asked for gas money from me each week, to the tune of $20 per week….which was still alot for me to pay. Jee cooked very delicious meals for me, and even colored my hair again, so i could still call myself a redhead.

But then, the honeymoon was over: alittle more over two weeks into her job with me, she came to my door, crying, saying she was going to be kicked out of her apartment if she didn’t have $525 to pay the rent that afternoon. Feeling sorry for her, i lent her the $525, and wrote out a promissary note so she would have to pay me back. She did pay that back to me a week later, but then about 10 days after that, she began turning moody, and suddenly asking me to pay her $100 a month for her gas. In addition, she was now coming, and doing very sloppy jobs at cleaning my house and kitchen stove. My dishes weren’t even being washed properly anymore, and there was grease and stickiness on the handles of my kitchen drawers and faucets. 

I called JuJu, who was more than happy to take over. She took over from July 2013 through the second week of September 2013. At first, because she still didn’t have a car, she would bum rides everyday with her other sisters, and with friends, to run my errands and get my dinner and Slurpees. For those rides, i only had to fork out $5 to $10 a week for her sisters’ and friends’ gas. JuJu got my house nice and clean, and my stove, faucets, and dishes all sparkly clean again. Then she began to use her uncle’s van, which was a real gas hog, and then i once again had to pay her $30 to $55 a week for her gas. In addition, now that her mother was taking me to the bank and to two of my doctor’s appointments that i needed to go to, there were additional charges to her mom on top of the money i gave her for the van gas….$10, then $17, and then, finally $25, then $30. Then JuJu began to get moody with me, then she got tired of me too, and shoved me off on her friend, who i will call Cecily. She made sure i knew though, that she and i were still “good”. (On good terms)

Cecily was awesome at first too, and she gave me very good baths. She remained nice for her first month with me, in fact. She began working with me the third week of September 2013, and all through October 2013. I loved that she had a car, and that i could once again get all of my errands done easily. She also colored my hair for me. 

For the gas, she only charged me $10 to $12 a week. But then, after the first week of October, she came to me saying that she was now also without a car.

OH boyyyyyyyyyyyyyyyy………not again!!!!!!!!!!!!!!!

From the time that i tried in late April of 2013, to get in with the general surgeon to see about getting my lymphedema leg tumor removed, to the end of last year, i had made several attempts at making appointments with him, only getting to see him in July, when JuJu’s mom took us to see him….and then again in December, when KT took me. (More on KT later)

 I had to once again cancel my appointments with the surgeon. I had to put all of my medical appointments on hold. With Cecily now without a car, she began borrowing her boyfriend’s dad’s van to run my errands, and if i needed to go anywhere, she would get the use of another car to take us. I now had to pay Cecily $15 a week, sometimes $10 more, for the gas for that van. 

One day, she was a total no-show. In a panic, i had to have JuJu come in for two days, and pay her out of pocket, $17 for that Thursday, and $40 for the next day, because Cecily was unable to get a ride to my house, nor could she even get to a phone to call me to let me know she wasn;t able to come. And JuJu refused to let me have IHSS pay her for those two days i needed her!! The stress from that REALLY blew me out of the water. I had to have one of my Facebook friends call Cecily, to make sure she was going to come back to work for me, and to make sure she would have transportation. 

My finances took a real hit when i had Jee, JuJu, and Cecily as my caregivers. Because of how much i was charged, several times i had to go to my bank and take out cash advances from two of my credit cards, in order to be able to afford to pay JuJu and Cecily for their high gas charges. I could no longer afford to pay more than $40 a month on each of my credit card debts due to this. I almost defaulted altogether on my debts for the first time ever in my life due to all the money these ladies were taking from me.

The kicker is that they all threatened me that if i did not pay them these charges, they would not run my errands or get me to my bank and post office. In addition, i had to feed them also, because they were always out of money to be able to afford their own food.

Then Cecily turned moody and snotty, and i had to let her go. KT came back on as my caregiver…..and all was as right as rain. Or so i thought.

 To be continued…..