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…..

 

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