Yes, i have finally had to part ways with the caregiver who i had for the past 15 months. I had to. The relationship was growing darker and darker, and her dark anger was dragging me down with her, and that deep anger….literally, to where i felt i was going to die if i didn’t speak up soon. I was growing to feel more and more cut off, walled off, isolated, depressed, and like all i could see ahead of me was a long dark tunnel with NO light at all at the end.
What actually ended up happening was that she quit. Because things got so bad, i had to call my social worker and have two advocate friends talk to both her and my social worker. She didn’t like this, so she picked up her purse and walked out the door, leaving me with no way to get my pain meds at the pharmacy, and no way to get food for dinner that night. This happened on Tuesday afternoon, June 16th, 2015.
Of course this threw me into a huge panic. But no worries though, because i had already unfriended and blocked C on Facebook, and had posted a new appeal early that morning for a new caregiver, in two of the local Santa Maria groups here on FB.
I got a huge response right away, about 30 responses in all, and even made a couple of new friends from this appeal. I called one lady who edned up coming right over to help me after C walked out. I had talked to her by phone that morning too, and when she came, we talked even more, and she agreed to go get my dinner and pick up my pain meds. I ended up hiring her, because i felt very strong good vibes with her.
Her name is Maria, and she is my new caregiver now.
I had fervently hoped and prayed that i could make it work between C and i,
that our working relationship and friendship would last longer than it did,
that i would finally get through to her my need to have my shopping, housecleaning, showers, skin care, massages, etc. done,
and to have outings at least twice a week, so i could get out of my house once in awhile.
And to to have the compassion, validation and reassurance i need.
She didn’t seem to get that.
Things only got worse…and the reasons i kept her, was because of fear of being without care again, because C used to work alot in medical offices, and knew all about lymphedema, medications, etc. Because she knew how to talk to doctors and nursing staff on my behalf. She got them to get me a new transport chair for outings, and a Disabled Placard for parking. Because of her good side, which i did like.
We were supposed to get out on lots of walks, and she was supposed to keep up the healing massages on my legs and leg tumor. She was supposed to help me to walk more too. She kept slacking off in all of these areas.
The weird thing was that when she first came on board with me in March 2014, March 4, 2014, to be exact, she drew me in with her nice charming side, her beautiful warm wide-set brown eyes, her cute fun snarky personality, and her long straight shiny dark reddish-brown hair. She would come in blue jeans and cute tops. She always smelled nice. I felt an instant bond with her at first.
When she was nice, her brown eyes would sparkle, with an ever-present easy sweet smile, and she would giggle and joke alot. When she was nice, she showed me so much in the way of kindness and compassion, and she would promise to do so many things for me.
I truly believed she cared about me, that she was different than all of my other caregivers before her, and that she would actually carry through with her word and do all of those things that she would promise that she would do for me.
I grew to like her right away, and then love her, just like she was a sister to me.
This seems to happen with all of my caregivers though….when they first come alongside to help me, we always seem to bond right away. And then things crash and become a trainwreck.
On C’s and my good days, we would laugh, giggle, and banter back and forth, teasing each other, joking around, and she seemed to know and understand and get me at those times.
But then the dark, angry bad moods would come like a black veil shutting out the sun, where she would just sit and belittle and criticise me, and when i would try to speak, she would talk and shout right over me, and talk over me, in a way that made me feel literally belittled, muzzled, and small.
We were friends on facebook too…and she would routinely criticise me for what i would post if she didn’t like it.
She wanted me to stop being real, being me on my very own wall…..she wanted me to only post the happy stuff, and not the true way i felt. If i posted certain political things that she didn’t agree with, i would hear about that too.
She would talk over the TV when i was trying to hear my 5:00 PM news, and hear the weather forecast. I love channel 6’s news, because i love the news personalities on that channel, as well as their meteorologist/weather person. I learn alot from him about weather patterns, microclimates, clouds, jet streams, the earth’s angel and how it makes days longer in summer, and shorter in winter….and so on. But she would even take that joy away from me. She would say awful tings about the channel 6 news staff, saying they were all snobs…..when i know they are nice friendly people. When i would try to show her the pretty sunsets and pretty scenic pictures, she would dismiss me, saying “Oh, i don’t notice those kinds of things”—- as if to imply to me these things that were important to me were trivial and silly. I felt my enthusiasm that i would want so much to share with her about shiny hair, and beautiful pictures, and the moon, and the beautiful sunsets, etc. crushed so many times by her. I would get so excited about a beautiful sunset, or beautiful picture of the Northern Lights, and she would shut me down like a wet blanket and ruin my excitement.
She didn’t treat me like this though, when she was in her good moods. When she was in good mood mode, i seemed to really matter to her!
I finally had to start talking to some of my FB friends in the Autistic community. Because her moods were growing progressively worse. And worse. And worse.
And then, finally she walked out on me——–
because i excercised my rights to call my social worker to get another caregiver.
Because i needed to get the heck out of the long black tunnel.
Because.
That long black tunnel C had me in was sapping all of my joy, and strength. I couldn’t breathe anymore. I felt it affecting me deep in my soul…..soul and spirit crushed yet again.
Below are is a post i wrote yesterday evening, and two comments i wrote on the thread of the post below. I am going to add to them to make them more clearer.
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Post written Thursday, June 18, 2015, on Autistic Pride day 2015
“I had a very nice afternoon today!! My psych tech appointment got cancelled b/c he called in sick today, but his receptionist said she would request that he give me two more refills of my anxiety medication so i will make it till i see him at the new time, in August.
Me and my new caregiver got out anyway this afternoon, and we were gone all afternoon.
She went into Wells Fargo to pay my chair payment for me,
and then i finally, finally, finally got to go see my longtime family friend, Sue’s new pre-built home that she moved to that is in a nice senior park here in town, when my new caregiver took me there to get my box from Amazon that came there.
Sue’s new home is impeccably gorgeous. She has beautiful tile flooring throughout her house, that looks like dark wood, and her kitchen has white cabinets, white subway tile on the backsplash, beautiful granite countertops, and brand new stainless steel appliances.
Sue took us on a nice tour of her three bedroom three bath home, and then me and my new caregiver enjoyed a nice long visit with Sue, as we sat at Sue’s dining room table overlooking her beautifully landscaped backyard.
The afternoon sun was shining nice and pleasantly through her French doors, into her dining room.
It felt so good to see the sunlight, and all of her pretty flowers, and landscaping.
I felt such a beautiful a peace while there—-a peace that i have not felt in so long.
(A vent.) Now that my ex caregiver is gone, i can open up fully and tell you all what has been going on with me for the past 15 months, as when C was my PCA, she was also a FB friend, and would watch very closely what i posted on my wall. She would routinely police and scold and lecture me for things i would post.
I was very afraid and intimidated by C. Yes, she had her good side, indeed, it was a very nice and kind side, when i loved her, and at those times, we would laugh, and giggle, and it was always at those times, she would promise me she would take me places and do things for me……. but she also had a scary temper and sudden mood swings, where she would get snotty with me too, and that was when she would refuse to do things i wanted her to do.
She would go weeks without cleaning my house. And weeks without giving me my shower.
And when C would always go to Sue’s, to pick up my packages that i would order from Amazon, and my monthly love packages from my mom…..she never took me with her. Even though i would beg her to take me, so that i could see Sue’s new home.
C and i rarely did things like what i got to do today, at all. And when C did take me in her car, her road rage would scare me, as she would routinely yell, cuss at, and flip other drivers off.
When C was my caregiver, i was mostly housebound, with C telling me i would not fit in the seats at the new movie theater, or be able to get down the steps there, and she would also say negative things about other places i would say i wanted to go that would deter me from wanting to go, or to even get out of my house anymore.
Because.
Whenever i would ask to go for the walks again, C would tell me “No, i don’t feel like it;” and….she would not take me. C would on a regular basis make promises that she was going to take me to the park, or the movies, or just walk through the mall…..or bake me nice things…..and she never ever ever kept her word. She even promised to give me a nice manicure and pedicure, and never did that for me either.
She basically was here sitting alot, and complaining about my music and what i watched on TV, and would be so sullen, making me afraid to even speak up for myself.
She often said very hurtful things, and would often look at me with a piercing look that would make me want to sink into my chair and hide.
She would only clean my house and give me my showers only when things would get so bad, they needed to be done. She would often say she did these things, and i just didn’t know it. And when i would go 14 days without a shower, she’d say “But you had one two days ago!”
Really? Would my hair be in strings, greasy, and matted to my head if i had had a shower two days ago???
She says that these are all false accusations. I have the pictures of my hair matted to my face right here on Facebook, and the sad looks and the shutdowns i was in because of her. I have my posts as documentation too.
To be honest, her temper would make me have bad flashbacks to my father. Because her temper is just like his was. He too did not let me have my voice.
When i say i am scared of someone, i don’t lie. I have had very bad luck with all of my past caregivers that i have had through IHSS.
As for the transport chair she helped convince my doctor to order for me so we could get out on walks around the neighborhood and go to the mall and library……. C only got me out once in that transport chair to take a walk in the nice neighborhood that is behind my house, and that was back in July of 2014 when i first got the transport chair.
That poor chair has sat, ever since then, collecting dust and cobwebs, in my garage.
And none of it has been my fault. it is because they don’t adequately pay and train or screen the caregivers who get placed on the IHSS registry. It is because the vast majority of people who become caregivers, seem to do so because it’s an easy way to exploit and take advantage of those who are the most vulnerable, our elderly and Disabled.
And C told me she was not like all of my other past caregivers…..that she was going to be different. She said she would prove to me she would be different. And….in my first few months with her, she was cool. She did cook spaghetti for me four times, with garden salad, and garlic bread, enchiladas three times, Sloppy Joes four times, and would also make me Spanish rice and bean and cheese burritos too on most weekends.
But when her bad moods started, my weekend burritos and Spanish rice began to taste bland and dry, and then, more and more, she started getting in more and more of her bad moods.
The day she quit, i found that she had put my bath wipes way down on the bottom shelf of my bookcase where i would have to reach and stoop low to get them…..and she knew better than to do things like this. She also placed the bedroom trash bag where i could trip over it and fall. When i had her put mail in what i call my bag for the shredder that i am still hoping to get someday….she would not bother to put the mail in the bag…..it would be thrown on top. When i finally went out to my garage, i could barely get to the back door to my back yard, because she had my boxes from my mom and Amazon right there in the way, making it had to get the door open.
Things finally got so bad that i had to take a stand. We began to have more talks, with me trying to reach her to explain, once and for all, my needs, and what i like and don’t like and to stop policing me, and the next door neighbors who she was also policing and bullying. We both agreed to no longer be Facebook friends. And then when i could see the black tunnel getting even blacker…… getting even worse….i finally posted ads in the two Santa Maria groups on FB.
And the day C walked out on me, i found Maria.
I think Maria will be with me for a long time. I like Maria.
Two comments i made to this post:
“I am going to have my new caregiver, Maria, take me to get my iPhone upgraded, as i am eligible for the new iPhone 6 through Verizon. She has a Samsung Galaxy S4 also through Verizon and has a friend who works at our local Verizon store. I will have Maria teach me how to text. I have wanted to learn how to text for awhile now.”
“Maria, my new caregiver, and her husband are both very kind hearted people who are very loving and spiritual, i can tell they are genuinely Godly people, and they are both okay with me being Bi-sexual, and liberal too. I don’t see in them at all, the hatred, bitterness and anger and rage that i witnessed in C. I feel that i am, and will be, safe with Maria. Plus, she likes my music, and likes The Weather Channel, “Fixer Upper” on HGTV, and the same movies that i like.
C was a very contentious person, and seemed to thrive on opposing me alot, especially when she in Bad Mood C mode. But i feel safe with Maria. I believe Maria when she says she is going to get me out of this house, cook for me, and bake for me.
Maria even took me on the freeway through town today, and that made me happy too, as i have always loved freeways and highways. C kept me away from the freeways and roads, kept me away from the ocean, and kept me from seeing all of he new developments around town…..even the new multiplex movie theater that we have at the mall.
C was a very negative hateful person when she wanted to be, and it was so very bad when she got like that. She would even pick on my neighbors next door to me, say mean things about them and bully them into where they could and could not park, and put their trash containers on trash day. That woman had a very scary side to her.
But now that C has left, i feel like the sun is shining again in my life. I felt an awful dark negative hate and anger around C. I felt so very oppressed. But now i see Hope and Light again, if that makes sense.
I am free to enjoy my music and TV again, and my home is mine again.
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