Monthly Archives: March 2014

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 handicapped plaque so we can park in the handicapped 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.

Advertisements

Silent No More—There IS A Way Out!! My Caregiver Story-Part Five

I am an Autistic Adult who has fallen through the cracks, and because i have never never gotten the help i have needed, certain things, such as my physical health, has suffered. Because of this, i have been depending on personal in-home caregivers to come into my home to help me be able to function and live for the past two years. These multi-part blogs tell my horror story. Because this needs to be told. This needs to be talked about.

In the first four parts of my story, i have told you about how, in the beginning when i began to need more homecare, my mother was able to pay to have private caregivers come for awhile. Then i became eligible for in home care from my state and county’s In Home Supportive Services (IHSS).

I also told you about how the traumatic ending to a six-year long friendship helped to catapult me, literally into a cave of fear and panic…..where i became afraid to drive and go places by myself anymore.

Then i told you about all of my IHSS caregivers: Jessica L., KT, Rose, Jee, JuJu, Cecily, KT again, and then JuJu again.

Please scroll down to read each story, before you read this one, so you will understand how this has all come about. I have also written alot of other blogs about my caregivers, and about Roger, the man who i had been friends with who turned against me. I have written over 130 blogs since being on Facebook and Blogger. About my life, and my Autism. I am hoping to write at least two or three books about my whole life as an Autistic who essentially grew up being unheard, judged wrongly, and misunderstood most of my almost 54 years on this Earth.

In this story, i will tell you everything that happened with JuJu when she came back to be my caregiver. I felt i had no choice but to call her back, because i lost KT again, this time, sadly, for good. Because now i felt i was out of options. Because i could no longer afford to be without a caregiver. Because H, my next door neighbor and longtime family friend, was also no longer an option to turn to. In fact, H has flatly refused to get involved in my life anymore. Even though my family and her family grew up together, even though H and i used to have a lovely friendship. She has seemed to turn totally against me too.

When JuJu came back this time, she finally had her own car, and could take me places and run all of my errands. But it soon became apparent that she still wanted alot of money to run all of my errands. Just like she wanted last summer when she worked for me. It also became apparent that she only came back because she badly needed both the job and the extra cash she knew she could get out of me. Because she knew that her other client was close to death…..so why not work for “that lady who lives (downtown)” again?

In fact things were alot different this time with me and JuJu. She was alot more moody and snotty and attitudinal towards me. I have gone through a whole new level of hell with her this time, a hell and agony so intense, that i have been left even more wounded and messed up now.

In the beginning of our second round together, she started off treating me as nice as she was when she worked for me before. Her mom even friended me on Facebook, and so did her sisters again. JuJu even colored my hair again. But unlike the first time, when JuJu worked for me last summer, when she was always VERY good about letting me know when she was coming and if she was going to be late…and last summer, she also did all of my errands with no fuss, and attitude…….

This time? She often came late, and i would often sit here at my computer waiting for her.

And sometimes i would wait and wait for her to come.

She was rarely on time this time.

I would have to call her and message her,

and then she would call to let me know she was either around the corner,

or a few blocks away. And i would wait some more. Then she would finally come.

The torture that her lateness alone caused me was very hard for me to take on top of everything else that has happened to me these past two years.

She started working back with me the last week of December 2013. And she worked for me till February 28, 2014. I was still reeling over the way KT had turned on me and quit me. Since IHSS would only pay JuJu for 24 hours instead of the 29 hours she claimed on her timesheet for the last week of December, i had to pay her, out of pocket, for those five hours. Yup. This meant that i had to go dip into the new kitty i had managed to start back up again.

But she did at first agree to only charge me $15 a week for gas……

She was able to get me to my second ultrasound for my leg, because they agreed to accomodate me by scheduling that for 4:45 in the afternoon one Wednesday afternoon in early January. And she was still being ((well, ummmm, mostly)) nice to me when i had my MRI on January 27th. (It was around that time when she began to put the brass tacks more to me on my wallet, and also tried her best to get me to compensate LeeLee, the little chica who came into my home to talk down to me and treat me like a total piece of shit……yes, that little pint-sized nightmare who came into my home…the one who was going to replace Cecily, and who decided she was going to talk actual baby babble to me!! Like the kind of baby babble that a mean abusive caregiver would talk to an elderly person that they didn’t like. Yes, that was exactly how LeeLee treated me. It was very demeaning. I had to call the cops to make her leave when she showed up even after being told she was fired. She only lasted two days with me, because i cannot stand to be treated like a baby.

The good news is that the MRI showed no cancer. The general surgeon said because it is a lymphedema tumor, that he could do nothing, but just send me back for regular lymphedema treatments, which i knew i could not do, because i still lacked a way to make those appointments, because JuJu could only come work for me after 4 PM each weekday, and because i knew they would wrap my legs and feet so much that it would further impair my already impaired mobility.

That was a huge blow to me.

But my biggest hardship was having JuJu come everyday,

always late,

to take all of my hours,

without allowing me to get a backup caregiver,

to tell me which days she wanted to work seven hour days,

and start telling me when i could get my things done,

and when i couldn’t get my things done.

She still wanted to eat my food

and she then upped my weekly gas fee from $15 to $25.

And she was getting in more and more snotty mean moods with me.

 

She was still addicted to General Hospital too, and so i had to watch that with her everyday.

I truly didn’t mind sharing my TV shows with her, or even my food and snacks.

I am a generous person.

But i am on a fixed income,

and now that i don’t have my own car and cannot do my own shopping,

i have to now depend on others to do it for me,

so it is more of a hardship when i do share,

and then i end up running out of my things that much quicker.

It would be so much different if i could drive and shop for myself again.

And if i had decent money.

As for General Hospital, i was unable to enjoy watching it, because JuJu would talk through it, then start scrolling up and down her Facebook wall, while leaving the annoyingly musical sound effects on on her phone, and then she would even take phone calls and be talking on the phone while we were supposed to be watching my favorite soap opera!! Even though i would always tell her to not do this.

In addition, she had a guy friend who is in prison, as many of her friends seem to be either in jail and prison…..who loved to call her every single night around 8 PM. And talk for a whole effen hour. I was able to get her to curtail that though, and to do somewhat better at keeping her phone non-active during GH. 

But both times she has worked for me, she has always kept her phone VERY much ON, with it constantly beeping and ringing, she was constantly texting, constantly on her Facebook, and taking ALL calls, while she was here, even to the extent that when i was talking to her, i was often rudely interrupted by her suddenly talking into her phone….right when i was in mid-sentence!! And i have always had to sit and listen as she talks about very personal things, family gossip, her family’s dirty laundry, all of it, right in front of me, and yes, i even had to hear her yell at her kids on top of it all!! In addition, she would get so engrossed in her phone that i would have to call her name several times, and then have to end up repeating everything i had just told her, because she wasn’t even listening to me. THAT is another huge sensory issue of mine, when people won’t listen to me, and when i am purposely ignored!! And then i have to repeat every single thing i said!!

Things got to the point where i was getting riled up everyday by JuJu

either not wanting to do my bed bath,

or by her saying mean and snotty things,

or her actually now outright refusing to do so many things for me,

by her making me now wait to get my shopping done and my mail picked up.

Then she began to need even more gas money at the end of each week,

and if she didn’t get that extra gas money,

she threatened me that she would not be able to get my dinner and errands done.

She would always use the excuse that her car was on empty again,

so i now had to fork over a second $20 dollar bill for that same week!! 

One day, knowing full well how much i hate dirty crumpled up money, she came back from shopping and getting my dinner, telling me that that was all they had for change, so i got rid of it by advancing her for the last two weeks of February for her gas.

She also told me that one restaurant always charged for extra sides of Ranch dressing. She was also telling me how snotty and mean people were to her. She also told meflat-out “No, i am not going to get you a whole bunch of straws for your drinks, because that will be embarrassing. I will get you only what you need, but no more!!”

Everything was becoming a battle and argument now.

And then her sister Jee came on Friday February 14th to cook me a spaghetti casserole dinner and a lemon cake, and i really had to fork out a huge hunk of money that night!!

 

Firstly, Jee said she needed $20 for her gas too that night because HER gas tank was also on empty!!

So, guess who had to give it?

Me again!!

In addition, JuJu, whose car was in the shop that day,

came right out and asked me if she could borrow $320

to get her car back that night, because her step father

told her she would not be able to have it back unless she paid him.

She told me that if she couldn’t borrow this money that very evening,

that she didn’t know when she would be able to get her car back,

which meant that my errands would then suffer.

I felt i had no choice but to give the $320 to her.

But i made her sign a promissary note

telling me she would be paying it back by the 26th of February!!

Next thing i knew, they had to leave to go pick up one of JuJu’s daughters, so they turned everything off on the stove and left for a whole hour and a half. When they came back, we were all in the kitchen, and suddenly Jee looked at JuJu, then back at me, and they both broke out laughing really loudly, and saying over and over “Boom, chakka-lakka, boom, chakka-lakka!!” 

I knew they were making fun of me and i told them to stop it. They said they were just joking around amongst themselves. Funny, i felt like **I** was the butt of their joking around!!

Then Jee and JuJu each took home part of the spaghetti casserole, borrowing two of my Rubbermaid containers to put it in, and i never got those back. JuJu did pay me back the $320 though, but then i had to turn right back around and give her yet ANOTHER $20 for gas for that very next week. And another extra $20 for the last week of February also!! JuJu even threatened me, saying that if she found out that i told anyone that she had asked me for that money, she would quit working for me.

After this, she began to get even more rude and mean.

Her other client who was dying, was beginning to really go downhill now. One night when she was waiting with that other client for her nurse to come show her how to do her feeding tube, it was getting later and later, and i REALLY needed to eat, or i would be sick….. JuJu told me in a terse Facebook message “Sorry, the nurse ain’t here yet…..go eat some chipz or somthing”. I had to order food to be delivered to my house that night, which is very expensive for me on my budget, because most places have a delivery charge and a minimum amount you must order in order to get the food delivered.

JuJu ended up not even coming that night, which left me with other needs unmet that i was so eager to get done. 

Bed baths became another huge thing for me to dread, because JuJu was now choosing those times to talk to me in that same baby babble that LeeLee had done, and to say alot of mean things to me—–right when i was naked in my bed!!

One thing she kept telling me over and over was:

“Oh, Melissa, i’m not going to massage your legs…i’m just not gonna do that….you will just have to deal with it…i will wash them and rub the lotion on them and all that, but i’m not gonna massage them!!”

“If you want your legs to be itched, get a back scratcher and itch them yourself, because i’m not gonna do it for you!!”

Then she would say, also over and over:

“You know, Melissa, none of my friends would ever wanna do this, give you these bed baths………ya know, there just aren’t too many caregivers out there who would wanna be doin’ this kinda thing, ya know? Maybe the older ones might….but not the younger caregivers who are like in their 20’s, ya know?”

The other thing she did was tell me she needed to work ALL of my hours because she needed the money to save up for a place to move to. When i told her i needed to find backup caregivers, she threatened me that if i got a backup caregiver, she would no longer run ANY of my errands for me, but maybe once a week.

Then Cecily contacted me, saying she wanted to work for me again, and then suddenly, JuJu stepped into find her another job, so Cecily would no longer be available to me. Suddenly, Cecily had my phone number blocked, and she was being cold to me again.

For the longest time, i was wanting to go to Walgreens to splurge on a huge candy run. But JuJu kept making me wait to do that also….. 

JuJu and i finally went on my candy run on Saturday evening February 22nd, but she was in a snotty mood all the way there and back, and even talked snotty to me as we were at the checkout counter. In addition, Cecily came into the Walgreens, and JuJu went off to go talk to her, and Cecily passed us by on her way out, knowing full well i was there in the candy aisle with JuJu, and she never bothered to say hello to me……

JuJu and i left the store, and i was so upset, i had JuJu drive all over because i wasn’t sure what i wanted for dinner that night. We finally settled on McDonalds, and then we came back to my house, where i finally had a talk with JuJu about how she was treating me. I told her if she wanted to keep working for me, this snottiness was going to have to stop, because it was really hurting me deep inside to be treated this way.

The next day and next week with JuJu were awesome, because her client had passed away that Sunday, and now all of a sudden JuJu seemed more relaxed and happy again. Suddenly my bed baths became pleasant, and everything became pleasant again. That whole last week of February.

I need to mention that JuJu had me so afraid of her that i was even forced to always sign her timesheets four days before the end of each pay period, so JuJu could mail them out early so she could get her checks early. I hope to God i don’t get in trouble for going along with that, but please remember, i was always under duress that if i didn;t do as JuJu asked, i would suffer with the bad moods, snottiness, and my needs not getting met. She seemed to hold that very much over my head all the time. And again, JuJu wanted to work all of my hours or none at all.

And she was lazy. She did not like to cook, nor was she a good cook either, so i mostly got takeout for my meals, and i most always would get enough to give her some of my food, because she was always complaining that she was broke.

She was broke because she had to pay her drug court so that she could graduate.

She was broke because she needed to find a place to loive because her uncle was threatening to kick her and her kids out.

She was broke because she now had to pay me back the $320 she had borrowed for her car repairs.

But…..even though she always kept telling me how broke and poor she was….

she was always making weekend trips to Santa Barbara, and Pismo Beach to shop, and to get her hair done.

She bought a very ugly leopard print sofa from a local classified group on Facebook for $150.

She was always buying new pairs of jeans, and new tops….

and paying for her buddie’s who were in jail to have phone cards and money cards.

Even so….it fell on ME to keep her gas tank in her car filled up.

The climax came when she came on Saturday March 1st, 2013

to work off the hours she had already put on her timesheet

that she failed to work that past week,

came in that afternoon very late,

but all bubbly friendly and happy.

I decided to order my dinner from a nearby American food restaurant, for that night and for the next day, since she would not be here for me the next day…..when suddenly, she got up to use the bathroom, and i began hearing loud coughing and gagging noises.

Now, i know that people can throw up all of a sudden, but i knew JuJu was faking this……because before going to the bathroom, she was talking about getting herself cheeseburgers for her dinner at another place!!

She then emerged from the bathroom acting like she was so sick now that she could not stand up. She went to sit at my desk, and held her head in her hands, groaning. I KNEW this whole thing was fake!! So i was yelling at her…..

about how i was supposed to get my bed bath now,

and how was i supposed to get my dinners now??

I KNEW she was ACTING….that she was NOT SICK….why? Because i had overheard her talking ALOT the previous day on her phone about a party she was going to go to the night of March 1st!!!

I suddenly had to call and cancel my dinner order.

This so embarrassed me to have to do this, because she refused to call for me!!

I then had to go in the bathroom and unplug the toilet myself,

because she had put a whole wad of toilet paper in it,

and fish it out

with a coat hanger,

and the toilet paper had her damn puke all over it!!

 

I knew she was faking it,

because when she got up to leave,

she suddenly perked back up,

walking just fine

marching quickly across my floor to the door,

and then continued to walk just fine

as she walked to her car,

telling me she was so sorry,

but she would definitely make this all up to me Monday, and get me to my bank for my payday on Monday.

On Sunday, March 2nd, 2014, i fired JuJu. Because i had gotten the idea to post on a local Facebook classified group about my plight, and i already had a new caregiver lined up for Monday, March 3rd, and several other very good prospects were also coming forward.

To be continued……

 

 

Why We Need To Care, And Care Alot!! My Caregiver Story—Part Four

This is a story i am telling, because i want there to be no more victims. Because caregiver abuse is REAL….and it needs to be stopped!! I am telling this in several parts, because this has been a long haul for me……an Autistic adult who does not have alot of resources or support….and i refuse to give up or give into this and remain silent about it!!

In parts one, two, and three of my story, i have told you about all of my caregivers, from when my mother was paying for private caregivers, to when i became eligible for homecare through IHSS….and the hell i have been through ever since. Please scroll down to read parts one, two, and three.

In part one, i talked about Jessica L., and KT.

In part two, i talked about Rose, my high school friend, and what a nightmare that turned out to be. And that this is not my fault….the fault lies in that caregivers, most of them, do not understand how to treat Autistic people.

In part three, i talked about Jee and JuJu, the two sisters, and Cecily, and how i almost was facing actual default on my bills for the very first time in my adult life due to all of the gas money and food they took from me. I also discussed how snotty and unreliable Cecily became.

Yes, Cecily had other days that she could not make it to work. Then she was almost going to let me go without beging able to go to my bank on my Social Security payday. During this time, i kept having to put off all of the vital medical appointments i needed to make for my lymphedema on my legs, and to see about the possibility of being able to have surgery to remove a huge basketball-sized lump on my inner left thigh, because of these caregivers’ issues with having no reliable car. JuJu tried to find me another caregiver…..and Stephie was a no-show for her interview, because she said my loud voice scared her. Then JuJu set me up with LeeLee, who treated me like i was inept and seriously, talked to me like she was talking to an infant. She was so rude and patronizing, that i had to fire her. I had my friend call her to tell her not to come, and she came anyway, banging on my front door, yelling at me to open the door. In fear, i called the police, because my friend had said she may be dangerous. The cop who came was also rude to me though, because both LeeLee, and one of the employees of the auto shop, who was also outside talking to that cop, and another cop who was with him, had convinced both cops that i was a nut.

KT came back as my caregiver the last week of October 2013, and i finally felt good again for most of the month of November 2013, because this time, KT was letting down her guard, and we were like friends now. We still remained friends on Facebook too. She kept promising me that she was going to find me two other caregivers, so that i would not have to be without this time, and that she had my back.

And…now that i had KT back, i was able to save money in my kitty again, and able to pay my bills again too.

But….as weeks went by, i saw that this time around, KT was not as serious about doing a good job and having my back as she was before. Since Cecily had missed several days with me, and now, KT was not able to work for me everyday either, my skin began to break down again on my leg tumor. Not only that, but it began to hurt alot. And then finally it was draining like a faucet down my entire leg to my left foot. Even so, KT was now taking off work early to go be with her boyfriend, and then she took a whole day to be with her family for a birthday party. Next, her mother had to have heart surgery to place seven stents in her heart, so i was again without care for several days during that time. Even though i was supportive of KT during this time when her mother needed her, the stress and consequences of once again being without consistent care, was beginning to take a new and more profound mental and physical toll on me……

She did get me to one of my ultrasounds that the surgeon was requesting for my leg lump. Yes, she did do that for me.

But by the first week of December, KT was once again struck ill with stomach and respiratory flu. She was gone several days, and when she came back, i was in horrible shape, with my leg draining constantly, and me being in such excruciating pain that i was taking Vicodin like it was candy. She came back to work one night, saw me practically bent over in pain, and she got scared. She made sure i had my dinners for that night and the next two nights, and then drove me over to the ER, where they did blood work, and said it was not infected, but that i needed to have my leg bathed daily and treated. 

Shortly after this KT began to come even less. Then she just didn’t come anymore, saying she was just too sick. By Christmas, when she had promised me that she was going to take me to see the lights, she began to ignore my frantic pleading messages on Facebook to please kjust at least get me hooked up with another caregiver. On Christmas Day, she totally ignored me, until i asked her to please at least wish me a merry Christmas. She did wish me a merry Christmas and made a feeble promise to make it all up to me that following Monday.

But….in my opinion, this was bullshit. I knew she was blowing me off like she did before back in January 2013, when she and NBee were both getting fed up with my meltdowns. I had that strong feeling that first time around that they were both making excuses to not come work for me anymore….because they didn’t want to put up with the meltdowns anymore. Not because they were sick, or that NBee’s mom was in the hospital….i felt it was truly because they just didn’t want to bother with me anymore. Because if KT was the responsible caregiver she made herself out to be, then i really felt that she could have, would have found someone to come here to cover for her and NBee. So i would not have to be without care.

And she was blowing me off now……on Christmas Eve and Christmas Day!!

It was a miserable Christmas,

because whether KT was sick or not,

i still freakin’ needed care,

i still needed for her to care about me,

i still wanted and needed

to have people around me at Christmastime…..

so i kept hounding KT,

with message after message,

and when she began ignoring my messages again,

i finally lost it,

yeah, that was it,

i had had enough,

and i vented about it right on my Facebook wall…..

and then out of sheer desperation,

because i was not hearing back at all anymore from KT…..

i called JuJu to come back to work for me.

I messaged KT again,

telling her she could still work for me,

if she wanted to,

Sundays, Mondays, and Wednesdays

but that i had no choice but to call JuJu back,

because I NEEDED CARE NOW……NOT NEXT WEEK!!

This was when KT suddenly turned on me,

telling my friend,

not me,

that

she

was

quitting.

That

she

could no longer work for me.

I was devastated!!!!

Because i had so wanted to work this out with KT!!!

KT gave up on me this time……i did not fire her this go round!!

And i somehow knew this time around,

that it was over for KT and i!!

As for JuJu, oh, she was more than happy to come back on as my caregiver. JuJu began work the last week of December, and this time, she had a car. She said i would only have to pay her $15 a week, for the gas, but she could only come after 4 PM every weekday, because she was working for another client from 8 AM to 4 PM.

In November 2013, with KT as my caregiver, i was able to get back to see the surgeon one more time, and he ordered two other ultrasounds…….but when KT began to wuss out on me, i was never able to get those scheduled until January 2014, when i was finally able to get the first ultrasound scheduled for 4:45 PM on a Wednesday afternoon, when JuJu could take me. So, i had that one done.

JuJu and i were still getting along great at that time, so i felt things were going to be okay now. 

By this time, i was getting in-home woundcare treatments for my leg, from a local home nursing agency, so my leg lump was getting better again.

Then my primary care clinic called because they needed for me to come into see my doctor, so that i could continue the woundcare treatments. I had to have them order the transportation, because the appointment was for a time when JuJu could not take me. So, i was able to take the medical transport bus to that appointment. 

Then the surgeon called to let me know that he wanted me to still get the MRI. Because he was afraid my leg lump may be cancerous. It is not, but he wanted to rule that out. He asked me if he could arrange transportation to come pick me up, and do the MRI under sedation, if i would be willing to do this? So, i scheduled this for Monday, January 27th, 2014.

It was during this time, that i was beginning to have problems with JuJu. JuJu was starting to get moody with me, telling me she didn’t want to be running around so much for me anymore, that we would have to limit our errands to once a week, unless i would be willing to give her $25 a week. She would still get my dinners and iced teas, but we would have to limit that too, to just places close to my house, which REALLY limits my choices!! So, i reluctantly agreed to do that out of my fear, because i now felt i had no other alternatives available to me any longer. I felt really trapped now.

I also had prescriptions from my doctor’s visit that i needed to have JuJu take to my pharmacy. But she made me wait two days to get those filled.

It was then that i had to go along with paying her $25 a week…..

But even then, she still liked to tell me “Do we have to do this today? Can’t we wait till Friday?” Or, “Can’t we wait till Monday to do your shopping?”

The same thing with any housework…she wanted to wait till she finished texting and scrolling down her Facebook newsfeed to do tasks for me. And, because she worked largely from 4:15 till 9 or 10 PM, she would get nightly calls from a guy, and would sit there talking to him for an hour each night, till i told her i wanted that to stop.

 I WAS able to get her to stop doing certain things i didn;t like. Or to talk her out of some of her mean moods.

And then she had the nerve to come out and tell me i needed to compensate LeeLee for the hours she worked for me too, even though she was never hired onto work for me as my IHSS caregiver, because she still worked 7 hours for me, and she felt it only fair that i compensate her for her time….oh God, this too??????? (I ended up not having to fork over that money, thank God, because as i told JuJu it would break me to have to pay that, on TOP of the $25 a week!! I told JuJu a white lie, that i would save it up, and pay it when i could, in installments. JuJu shut up after she saw the genuine distress this was causing me.)

It was around this time that the street noise was getting really unbearable again, and i was feeling the walls closing in on me again, that i finally made up my mind that i am going to move to Michigan, some way, some how.

(I am unable to disclose how this is going to happen, but i am bound and determined that i am going to move to Michigan by June!!)

Because i have friends there who are going to be like family, who are going to help me.

And because i have always longed to see Michigan.

And because there are all kinds of real live programs and services for disabled/Autistic adults there that really work.

So, now that i have my sights set on this. I am doing all i can to make this happen,

………because…….

i have failed here.

I have NO family support here in Santa Maria,

nor with the siblings and their families who now live in Idaho.

I just have my mother,

who also lives in Idaho now,

and two of my sisters,

one of whom lives with my mother,

and the other one lives in Hot And Dry Arizona

but the others all ignore and shun me like i am the plague.

Because they also don’t want to bother with my meltdowns and quirks and rituals.

In my next installment, i will tell the rest of my story about JuJu, and what has happened since then.

To be continued……

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…..

 

Why We Need To Talk About This—My Caregiver Story—Part Two

My story continued from Part One. (For Part One of my caregiver story, please scroll down to the blog below this one.)

 After i fired Jessica L., i was without a caregiver for two weeks. I was a wreck….because Jessica L. still lived next door to me, and was still doing things periodically to antagonize me….but thankfully, a family friend helped by checking my mail once a week, and shopping for me. I had to make frequent phone calls to order food to be delivered to my house…..otherwise, i struggled to make things to eat that were the easiest for me to do…..mostly tuna sandwiches, ham and cheese sandwiches, also Lean Cuisine Chicken Chow Mein, and Stouffer’s spaghetti with meat sauce that i could just pop into my microwave….things i could just heat and serve.

 But I was so lonely. I cried alot. I was still even mourning the loss of my friendship with Roger. A part of me still even wanted to mend fences with Jessica L., and give her one more chance. All of my friends advised me not to go down that road again. And i didn’t, because Jessica L. was still being mean to me. She would leave her very bright backyard light on so i could not enjoy looking at the stars and moon at night anymore, and bang on her walls alot…..and she also loved to even make her car alarm go off all of a sudden. And she loved to yell.

 I also missed my long shiny red hair. My mom had to buy and ship me three knitted caps to wear, because my head was now so cold, with my hair cropped so short that it even had actual bald spots on the sides. Yes, i was that distraught over the way things ended with Jessica L. that i literally tried to scalp myself. I hurt that badly inside……mentally and emotionallly from her cruelty towards me. On top of Roger’s cruelty.

Enter KT, my next caregiver. My In Home Care worker called to let me know she had found a lady

who understood Autism,

who would be nice,

but who would know how to set boundaries and remain professional,

as i should not ever become friends with my personal care assistants anymore.

 KT started on Nov. 15th, 2012. She was nice, but she kept asking me alot about my meltdowns and whether i needed to “vent” or have her “problem solve”. She liked to get me out of the house too, and she liked to let me have my favorite treats too. But she was strict about doing nothing but working while she was here, and she did do an excellent job at cooking, and housecleaning…so much so that my house was spotless. She also was okay doing my baths, and even got me into the shower a few times. But our relationship lasted till the end of January 2013, when my meltdowns due to the street and my house being ripped apart due to plumbing issues, got to her, and her friend NBee both, who KT had gotten me hooked up with as a secondary caregiver.

 The end of KT’s and my caregiving relationship ended abruptly on January 31st, when KT called in sick, and i could not get NBee to fill in either…..suddenly leaving me without care again.

 I REALLY flipped out!!

 KT began ignoring all of my VERY frantic emails and calls, and NBee who said she was at the hospital with her mom, rudely hung up the phone on me.

My paranoia got the better of me, and i jumped the gun and i fired both KT and NBee, as my high school friend who was then back in my life for the third time, was more than eager to take over as my new caregiver.

I will call her Rose—not her real name either.

Rose took right over….but now i had to suddenly become a morning person and get up at 8:30 AM every morning, because of her youngest boy being in school and he needed to be picked up everyday at 2 PM. Rose wasted no time in talking me into having more anger and resentment towards KT….she even had me convinced that KT was neglecting me by ignoring a growing gash on my lower abdomen where my underwear were cutting in…a gash that was quickly becoming very infected.

Rose, who was nice in the beginning, took me to the hospital, where i was admitted for three days, the first week of February 2013, and i was placed on antibiotics and diuretics. In the hospital, i began to lose weight quite quickly, and my leg lump and leg swelling even shrunk to half the size they had been before my hospitalization.

I loved how i got treated in the hospital by all of the nurses and doctors. And loved how nice Rose was to me during that time. Rose even promised she would never be mean to me this time, that she had learned her lesson from her first two times friending me in Feb. 2010 (when we stayed friends till a huge loud blowout happened between us in April of 2010) and the second time in Oct. 2010 (when she and i stayed friends till we had a HUGE screaming blowout in February of 2011).

The thing with both Rose and Roger…..is that both Rose and Roger were very much PAID FRIENDS. They both took huge sums of money from me, as well as food and candy, and snacks as well. Everything they ever did for me seemed to have a price tag on it. In addition, whenever Rose and i went out to eat, i always had to pay her way, and if her kids were with her, their ways too. Roger would get nasty, refuse to do stuff, or do a sloppy job at what i wanted him to do, if i did not give him acceptable compensation. And Roger got in alot of ugly bad moods in which he would become verbally and mentally abusive towards me…and this would happen on a mostly bi-monthly basis…seriously. Even so, when he was nice, he was a beautiful soul to have in my life. Even so, i still both mourn the loss of his friendship, but at the same time, i am now seriously frightened of him, because when he turned on me for the last and final time in March of 2012, his mood and emails were so hateful and sinister….i have never gotten over that. I still have bad nightmares about the way he began to behave towards me. The way he suddenly began to deliberately blare very loudly, the music he knew i hated…..the way he suddenly began to emit the same type of loud banshee yells he knew scared me to death that the men do from the auto shop across the street……and again….there were those awful emails. And all of the awful threats he began to leave in the comments on my YouTube videos.

Rose, my high school friend, who also has a Jekyll-And-Hyde personality, lives in a town 25 miles away, so when she became my caregiver, she was always asking me to give her $40 dollars a week for her gas…..yes, she did refund all of that money back to me….but whenever she would come on weekends to be with me when i would get scared to be here because of Jessica L. and her family next door….she would charge me $60 for each of those weekends…and that did not ever get paid back to me.

When i sold my car in August of 2012, i managed to keep most of that money saved in a private savings to save up for a new iPhone, a new Apple computer, and an iPad. But when Rose came onboard as my caregiver, that money began to drain lower and lower, till i no longer had a solid cushion. In fact, after i came home from the hospital in February 2013, Rose started in with the yelling again. Whenever she would realize how shaken up it would make me, she would stop herself. But i noticed how she also still yelled at her kids….both of whom are also Autistic. In her fits of rage, she began to break several of my plastic Rubbermaid containers, pounding ice in them to break up the ice for the fruit smoothies she began making me….and began to turn most of our conversations into these awful raging screaming arguments. She strong-arm talked me into getting rid of all of my snack food and candy, taking it all home with her. She also refused to buy me my Slurpees which i loved, too. In March 2013, the abuse stopped for awhile….but then in April 2013….it sstarted right back up. We had one last good weekend in early April, where we rented a car to go to Pismo Beach. I agreed to pay for the car rental, with the agreement that Rose would refund the deposit, which ended up being $153. I never got that money back from her. In addition, once again, i had to treat her and her son to their dinner that evening. In late February 2013, i had gone for an ultrasound on my left leg lump, to see about getting surgery on it, and was to have an appointment with a general surgeon in late April 2013, but by then Rose and i had had two new huge awful blowouts, even worse than the ones before them…..one of those blowouts was hers and my Horror Ride To The Bank on the last Monday in April, where she screamed her head off at me so bad, just over me wanting to listen to my music on the way there, and then one two days later…………….where she ended up walking out on me, leaving me, this time, without a caregiver for one whole agonizing month. In addition, i now had my family friend, who was now renting the house next door to me, suddenly on my case over this….my friendship with her was now permanently ruined due to Rose.

Rose went onto try to turn all of my Facebook friends against me. She did not succeed, although i did lose one of those friendships, when one of my friends did delete both Rose and i, because she no longer wished to get involved with the drama. I can write much more about Rose…but i already have, in earlier blogs.

The friend i lost was the lady who loved to come from the Central valley of CA to take me to Pismo Beach, Avila Beach, and Cambria. I miss her……i miss her alot…..

To be continued……

 

Why We Need To Not Stay Silent About Abuse—My Caregiver Story—Part One

I think this time, i have finally found new caregivers who are going to truly work out for me. At least i sure hope so. It took me having to finally post on a local FB Classified group to find these new caregivers.

 But my quest to find good quality personal care assistants, has been a long rough two-plus year road for me……

 a road that has been mostly one majorly huge and unreal nightmare for me…..a nightmare which actually started out in November 2011, with a private caregiving agency here in town, where the director who i shall call ND, was one of those charitable do-gooders types who decided to take me under her wing so she could fix and cure everything that ailed me.

 Yup, that’s the truth.

 I did okay with her, until i managed to test her patience one too many times…..and then, wham!!!…..like alot of people before her in my life, who, because they don’t get Autistic people, and don’t **want** to get Autistic people, turned right against me….

 this was because,

1), i dared to call her too many times for things like my food order gone wrong at a pizza joint, and my street issues, and then,

2), my caregiver who i had go into the grocery store for me, knowingly got the wrong milk for me, and waited till we got clear home to spring this on me!! The ensuing meltdown i had from that episode, caused the caregiver to instantly walk out on me, and then ND and the agency’s director both promptly kicked me to the curb.

 Because my meltdown frightened them all too much.

 My mom immediately had to search for another private agency, as i was still not yet approved for IHSS services…..and my physical health was deteriorating so much by that time, that i was driving less and less….so, i really needed personal care—-and ASAP.

 A second agency was called, and that man decided, instead of coming to my house, to interview me over the phone, and when he did, and found out that i live across the street from the Big Bad Auto Shop, he began to lay into me, judging me and accusing me of having way too many boundaries. When i melted down because he wouldn’t listen to me, his reaction was “Oh, we cannot subject our caregivers to this kinda thing!” And he hung up on me, leaving me in tears…..

My mother found a third agency in a town 22 miles North of here, and they were more than willing to work with me. We went with them. I finally had two awesome caregivers who came in two to three times a week. But in the meantime, i had another HUGE blow come my way, when my then friend of six years, “Roger”, also not his real name, suddenly and inexplicably turned against me…..

Suddenly, i went even more downhill. I could not understand why Roger would turn on me. I tried to find out. I wrote emails to him. I had my mom call him. Then he wrote back a series of ugly mean emails that really knocked the wind out of me. I have saved those emails for legal purposes. He also began to come onto my YouTube channel and flag my videos and leave nasty threatening comments on them, threatening to have me yanked off of both YouTube and Facebook for merely telling my story, which i had a right to do, as i was using aliases and being as careful as i could.

I had to tell my story, and he would not let me.

 Even though he had caused me holy hell.  

 At that time, my left foot had developed a sore so painful on it, i could not walk well anymore, and when Roger turned on me, i actually stopped driving. I was now literally afraid to even get behind the wheel of a car and go places by myself anymore.

 I haven’t driven since. I sold my car that summer.

And i got approved for IHSS, and then that started a whole new level of nightmares for me. I went through three awful caregivers, none of whom lasted even a day, because they were so rude and hateful and had NO clue….and then came Jessica L., in May. She was a sweet angel, for the first two months she worked for me, until she moved next door to me with the intent to help me even more. Things quickly became another nightmare, as she began losing her temper with me, and with more and more frequency, yelling at me, and calling me names. The kicker came when she told me to take my Autism off and start acting normal, and then when i was naked in my bedroom, for my bed bath, she lost it, calling me a smart ass, and threatened to leave me there naked to fend for myself. Seriously!! I fired her shortly after that, because i knew that with her already yelling at me, that she was going to progress to calling me the R word and then hitting me. I had enough……i went into a tailspin……i went into my bathroom and chopped my hair all off, ripped some of my clothing that i loved to shreds…..i was broken. Broken to the core now.

 To Be Continued……

 

 

Hello, This is My First WP Blog!! :D

Hello, to those who don’t yet know me on the WordPress blogosphere, i am Melissa. I’m not crazy….i am Autistic. I am going to be 54 years old in May….i should feel like a teenager, but i feel like i am eighty years old.

Truth of the matter is that i have fallen through the cracks. I am also still being bullied right in my own home. I’m not gonna lie. Life hella sucks when you don’t have family support, and can’t keep most friendships because you are so weird and complex that most people don’t freakin’ want to bother with you. Yup, that’s me.

I was going to move to Michigan, i really thought i was gonna get to do that, and now that dream, like most of my other dreams, is dust.

In the following weeks, i will tell my caregiver nightmare story, as originally written throughout the month of March. I will try to get these out as much as WP will allow me to, as it is a six-part series.

If you like what i have to say, i invite you to please follow me!! Thanx!!! 🙂