An Open Letter To My Last Caregiver, & To All Caregivers To Read

Dear Last Caregiver,

The afternoon of Tuesday, June 16, 2015 was such an emotional blow to me that i don’t think i will ever be able to recover from this time.

What happened broke me into pieces. I never saw it coming. Not from you.

You walked out on me, abandoning me and leaving me to fend for myself.

It was a huge shock, especially since you promised me, time and again,

that you would prove to me

that you were going to be different than all of the other past caregivers who abused me,

………………..and that you would never, ever, ever………………………………

just walk out on me leaving me hanging with no food to eat, and my needs unmet.

You made these promises to both me, and my 86 year old mother.

Yet Tuesday you did just that to me.

I guess promises….are made to be broken…..

that is what i have now painfully learned as my awful truth.

I am so deeply hurt, so deeply angry, and now you know exactly why i have never fully been able to trust people. And now more than ever, it will be even harder for me to trust again.

I do have feelings, and i cannot be expected to live like this indefinitely.

In this constant state of fear.

Panic.

And anxiety.

I am a human being who needs help so that i can stay alive, living in my own home.

Because i can’t walk very well, and because there are things i can’t do for myself anymore.

Why do i need to be punished by being treated like shit, like i am less-than, and should be kicked down,

just because i need help to be able to remain in my own cozy home around my own familiar safe surroundings, where i can feel safe?

I have a right to live in my own home, and to feel safe, and treated with respect, and with dignity.

Why did you start to see fit to talk over the news and weather whenever i was trying to hear it, just because you didn’t like the news channel i watch?

I wouldn’t do that to you if i were in your home.

You also seemed to hate my eclectic mix of indie rock alternative music,

and hate that i watched certain shows and cable channels all the time.

You would ask me to keep my music down so low, that i could never enjoy listening to it while you were here….

you would ask me to change the TV channels i was watching too.

You would not let me go in my own kitchen when you would cook for me, which you did do in the beginning.

You would ask me not to make my unique bull moose noise, sing to match the room acoustics, which i call “doing my chestnut noises” or do my unique burps, because you hated all of that too.

I could even sense that my hand-flapping got on your nerves too.

I knew you had a temper, and lots of anger and rage.

But i kept you on because you were nice too, very nice, and would always promise me so many, many things.

When you first came to work for me, you drew me in with all of the promises, kindness and compassion you showed me at first. I loved your cute personality, your wit, your sense of humor, and your experience working in the medical field.

I loved the way you promised you were going to get a car, and then we were going to go all kinds of places,

and you were going to bake and cook some really cool things for me, too….

your own special recipes of meatloaf, casseroles, bacon-wrapped cream cheese jalapeno poppers, brownies, cakes, cookies, etc.

Yes, you did have a car within two weeks of you starting work with me.

And you did cook enchiladas, spaghetti, and Sloppy Joes for me too at first.

But the special homecooked **You** recipes never got cooked or baked for me.

And we have only been out to eat three times,

but never ever have you been able to get me to the ocean, which you know i love…..

and haven’t gotten to see in two years.

And then, the bad moods started. I have always hated the bad moods. Because that is when i got picked on, scolded, and criticised in my own home, in front of all of my things, my TV, my computer, all of my things……..i got tone policed, accused of being too snippy, shouted down for my opinions, told not to talk about my Autism so much, told what to post and not post on my own Facebook wall, and etc.

One day, when you took me to my doctor’s appointment for the first time, you got angry with me because when we went to sit in the doctor’s waiting room at the clinic, which i told you makes me nervous whenever i have to sit in that waiting room, i asked you to sit by me, instead of way over in back of me in another chair, where you were.

You got angry because you felt i was bossing you and treating you like a child, which wasn’t the case. I needed for you to sit close to me because i did not want to sit alone by myself.

When we got back out to your car, you snapped at me to hurry up and get in the car, knowing full well, i can’t move fast because of my mobility issues, yet you hurried me anyway. And then, because you were afraid of getting pulled over for not yet having insurance on the car you had just bought, you continued to act out by yelling and cussing other drivers out all the way back to my house—-and snapping at me.

Once back at my house, i finally got you to understand why i needed you to sit by me. But you still told me that in doctor’s offices, i will have to wait, and i will just have to learn to deal with that. That was ableism.

The bad moods started to come more and more. But each time afterwards, you would feel bad, be sorry, apologize, and get nice again.

I remember we had many good times laughing and joking, and teasing each other. You would even let me play with your hair and look at the shines in it. I loved those times with you.

You even talked me into getting in the shower and taking showers instead of the bed baths. We began doing the showers in August of last year.

And that is when things got even worse.

Because the showers always seemed to happen when you weren’t feeling well,

i got rushed through the shower;

you did things the way i didn’t like, which was only partway,

and when i would tell you, you would get angry and irritated with me for telling you.

I soon was able to speak up and tell you i would do everything myself in the shower, except the places i can’t get to at all myself sitting on the shower bench, or standing up.

Then Shower Days  became a real cat and mouse game between us, where you would often say you weren’t feeling up to giving me a shower—-or you’d look over at me and say “You don’t feel up to doing the shower today, do you? I can tell, you look tired. No worries, we’ll do it tomorrow”. It was both our fault, because some days i wasn’t feeling up to a shower, and some days you weren’t feeling up to giving me one. So….my showers got put off all the time, till i would stink so much, till my hair was dripping grease and in strings, and i was itching….and then you would give me a shower. I would actually pretend and say i wasn’t feeling well enough to get in the shower, to appease you, because i knew you were in a mood and/or not feeling well.

I was afraid of your temper, and bad moods. I was extremely afraid of you. Because. You could, and did say very cutting and insensitive things to me when you got in those moods. Your eyes would bulge. And your voice would boom sarcastically.

In August of last year was our first huge blow-up, where i finally tried to talk to you to tell you how i was feeling, and you got so angry and began to say awful things to me about my Autism, that i was using it as a shield, and that i was going to make you forever pay for what all those caregivers did to me. Each time i would speak, you would tone police me, accuse me of yelling, tell me to stop yelling, tell me i was being snippy and snotty, and tell me “OH REALLY?” to everything i was saying, with your eyes bulging out and your eyebrows up in round angry half-circled arcs above your eyes…………………………………………………………………………………….and i finally made you leave because i was on sensory overload……………………………………..my whole head spinning.

You came back after my mom talked to you, only because you suddenly got scared and didn’t want to leave me hungry, without a fresh hot meal. We both cried, hugged, and then talked things out………………..and things were great from then up until the last of October, the start of holiday season, when you got in more bad moods……more on that later…….

And then there were other things.

When you were in a bad mood,

I began to get yelled over whenever we would discuss current events and political things.

You could no longer stay past a certain hour, or after dark.

You told me you would not come if it was raining, because you were afraid to drive in the rain—-

which made me afraid to have it rain.

Slurpees were out because you hated going to any of the 7-11’s here because of all the field workers and high school kids being there.

My rainbow sherbet ice cream was a no-no too, because you hated Orcutt——all Orcutteers were snobs to you——and didn’t want to drive that far…..7 miles…..to get my favorite ice cream that i can’t get here in Santa Maria.

At Thanksgiving, you promised me a nice homecooked meal. That didn’t happen. I had spaghetti for Thanksgiving.

No pumpkin pie either. But i did have spaghetti.

At Christmas, same thing happened as Thanksgiving………………plus you promised me we would go on a tour to see the Christmas lights. That also never happened.

I wanted to go buy some Christmas candy. Specifically candy canes. You told me no on that too. You said the stores weren’t stocking their candy that well this year, that you weren’t seeing any candy canes.

You promised to bake me Christmas brownies….that never happened.

Several times you have promised to take me on walks in my transport chair.

That only happened once, right after i got the chair, in July of 2014.

That chair has sat in my garage collecting lots and lots of dust ever since then.

You promised several times to give me a manicure and a pedicure. That never happened.

You promised several times you were going to get the new rear tires on your car so we could start going to Pismo Beach and places like that.

That never happened.

You also promised to take me to the new movie theater in the mall. And to see the new city library. That never happened.

You kept me away from the freeway too, which you know i also love.

You would not even take me to Waller Park where i could at least sit by the pond to watch and take pictures of the ducks and geese.

In December, you took me to see my doctor. It was pouring rain, and so all the way there and back, you screamed,at, flipped off, and cussed every single driver off, even calling one lady in a black pickup truck a fuckin’ r*****.” You used the R word and the N words alot, even though you knew those words offend me.

And then in January, you got angry with me because you wanted me to go to a different branch of my bank than the one i like, and when we got there, it was too far for me to walk to the entrance, and then inside it was a long walk to the teller line.

I went in anyway, with you walking way ahead of me, and not even helping me to climb the tall curb that i had to climb….. but even when i was buckled over in pain after standing in line for fifteen minutes, you still got angry, accusing me of not trying hard enough.

So, we went to my bank…..but you were sullen all the way down, and played your radio loudly.

We had another huge blowout that afternoon after we got back to my house, and then you got nice again for the next two months.

But my showers still got put off for weeks at a time.

And now, each time i had a doctor’s appointment, you started asking that i reschedule every single one.

I had doctor’s appointments in February, March, and May…..but you made me reschedule every single one of those because they were for the same week as my bank payday, and you didn’t want to make two trips to that area twice in one week…..so i cancelled those appointments to keep you from taking it out on me.

I needed to see my doctor. Missing those appointments even caused my med prescriptions to be messed up.

You did get me authorized for refills though.

And then i had the leg tumor injury in February. You were nice during that time.

You got nice when my computer chair collapsed and caused me to fall…..you did take me to get a new one….and you arranged for it to get put together for me.

You promised to cook a nice homecooked meal for me after i fell too, remember that? But that never happened.

You also promised to take me to get my phone upgraded, and to get an iPad too. That never happened.

And then, even though my leg tumor got a sore on it, you still let me go weeks without a shower……or cleaing my leg.

it is still draining as of now.

If treated properly these sores do heal.

But it is June 23rd now, and yes, it is still draining.

Since May of this year, things became so unbearable between us, that i couldn’t take it anymore.

I finally had to resort to calling in two of my Autistic advocate friends and my social worker.

Because time and again i have talked to you,

explained to you,

pleaded with you,

and sent you post after post, blog after blog, meme after meme…..

to try to get you to once and for all, understand my plight and my Autism.

I had to…..because i still was not getting through to you, and your moods were getting so bad now…..that you were starting to even YELL at me alot. Yes.

Actually yell at me.

And getting on your cell phone to surf the web,

and tuning me out when i would try to talk and converse with you.

Tuning me out completely.

When you last shopped for me, my personal bathing wipes went in a totally new spot……

on the bottom shelf of my bedroom bookcase, instead of on top, like they always go.

Yes, you have recently started getting me my ice cream and Slurpees,

but you only went a few times for me, twice for the ice cream and 4 times for the Slurpees.

I began to feel like i was a little kid being told no by their mommy and daddy…..

i felt like my house was not my own anymore…..i

and i was feeling more and more like i didn’t matter as much to you anymore.

So i had to finally take a stand. And now i got punished for that too. By you walking out on me.

Congratulations though, Melissa, at least this last caregiver lasted 15 months and two weeks with you…….

………..yay for that!!

And i got lucky again. I was able to once again post my appeal ads, and got a new caregiver the same day that you walked out on me.

But if i hadn’t of been able to get that new caregiver, then what???? I would have been without my pain meds two days after, and i would have had to order food, and pay a minimum order fee, which is expensive, and not been able to get my bills paid.

When caregivers walk out like this….they do not know what damage they are causing, physically, mentally, emotionally, and financially…… and the very real jeopardy they could be placing a disabled person in too.

To all caregivers, please think about why you want to be a caregiver. if it is to wield power and fear over those who are vulnerable…choose another field of work. And laws need to be passed that hold caregivers to a high standard of service. Only those who actually love people and actually want to help people, should be a caregiver.

I wish i didn’t have to need caregivers. This has been a three year hell since i have needed to rely on caregivers. It should not have to be like this, for any of us.

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