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……

 

 

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