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……

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