After The Storm Comes Rainbows—My Caregiver Story—Part Six

And now we come to Part Six of my story….a six-part series i have decided to write, because caregiver abuse is a very real, serious, and pervasive problem that needs to be talked about and exposed.

I know; because, as i have told in my stories, i was a victim myself.

Too many times to count.

In the first five parts of my story, i told you about the hell and agony i have been through with all of the caregivers i have had so far through IHSS…..the fear they all instilled into me….and how i felt i was too much at their mercy, and that i had no way out, so i had to put up with their abuse!! And what it did to me.

I hope you will all scroll back to read the last five parts of this series. As soon as i feel i am safe to do so, i plan to set these stories public, so they can be shared freely.

Before i go onto tell the rest of my story, i need to tell you that caregiver abuse takes many forms. The biggest problems, in my opinion, that contribute to this are that:

1) Caregivers are not paid enough money. Most caregivers are paid little more than minimum wage by the county agencies that pay them to work for eligible clients.

2) Caregivers are not properly screened by county IHSS agencies, nor are they properly trained in how to deal with people of ALL disabilities and health issues.

3) There are no oversight committees which hold caregivers accountable.

4) Most Adult Protective Service agencies, the agency a client should be able to turn to, are understaffed, and overworked, and also underpaid, in my opinion. And most are so harsh to talk to, that that, in itself, is a huge discouragement.

This all needs to change ASAP…because caregivers are coming into people’s homes to care for THEM!! Caregivers need to realize that they are going into a profession that requires them to be people-oriented. It requires them to be kind, patient, warm, friendly, and compassionate. It requires a heart that truly cares about others and who truly wants to help others. And if they don’t know alot about that person’s disability and health issues, they need to have an open mind and willingness to learn all they can about that person, their disability, the way they are, the way they like things to be done, their favorite brand names, their favorite ice cream flavors, favorite foods, and what they don’t like as well.

The signs of caregiver abuse are….and these are what happened to me:

1) Financial abuse: When they threaten you, telling you that they are not going to run your errands or shop for you, or take you to your bank, or mail your bills, or run you to the doctor, unless you pay them for their gas. Then they start wanting even more and  more money from you to do these things. Or they come to you saying they never have money for food, and are starving, so you feel obligated to always feed them. Or they ask to borrow money. Along with telling you a huge sob story while they are crying. Or they ask to borrow money and threaten you, that if you don’t give it, they won’t have a car to drive to run your errands anymore. Also, beware if they say a restaurant charges for say, sides of Ranch dressing… need to call that restaurant when the caregiver isn’t there, and ask if they do indeed, charge for extra sides of Ranch dressing. I later found out that my favorite restaurant does NOT charge for sides of Ranch, nor have they EVER charged for that!! whenever i would order food from that restaurant, JuJu used to always tell me there WAS an extra charge for my Ranch dressing…this is called skimming. When sending a caregiver out, request that they count the money back to you that you give them, and then request that they always give you your receipt, and count the change they give back to you. The change that you get back, should be an exact match as the change amount on the receipt. If you have your caregiver run multiple errands, he or she should have your change organized so that you can tell easily what change came from what store.

2) When they are more interested in talking on their phone, scrolling down their Facebook wall, texting, and fixing their hair, makeup, and nails, than they are in putting their phones on silent, putting down their hair brush and nail polish, and doing all they can to make YOUR life as comfortable as possible.

3) When they won’t listen when you talk, and blow you off, dismiss, and make fun of, or make light of your concerns, issues, problems, and don’t respect the way you want and need for things to be done.

4) When they lose it with you and talk to you in an angry put out tone of voice, or rush you, or won’t rub the lotion on you properly, or they just slap it on you like you’re a piece of meat, and then hurry you up to get you dressed. And they call you demeaning names.

5) When they yell and scream at you, scold you, and boss you around. When they tell you you can’t have certain things. When they actually forbid you to have certain things.

6) When they argue with you and get snotty and give you attitude when you ask them to do something, and refuse to do it till later, or refuse to do it till it is convenient for them to do it. Such as two days later.

7) When they tell you they are the ONLY ones who will put up with you, the ONLY ones who will do certain things, when they make you feel as if no one else will say, give you baths; or they try to make you feel as if you are trapped and stuck with them, and there is no way out..that if you hire backup caregivers, they won’t do this and that for you.

8) Beware of how roughly they handle you when they bathe, shower, and dress you. It is NOT okay for them to slap lotions and creams on you…and not okay for them to use more than what is directed. It is also not okay for them to put creams and lotions on and not rub them into the skin. If they are consistently rough enough to inflict pain and put bruises on you, this isn’t good. At all!!

9) When they leave things undone, or the housework is done very sloppily or it is halfway done, or they don’t bother to use dish soap and hot water to wash dishes. When you go in your kitchen to find the faucet, microwave, and certain drawer handles sticky and with gunk on them. When you find your bottles of seasonings also sticky. Also, when they won’t wash their hands or wear protective gloves as directed. Or they touch food after touching say, the toilet.

10) When they take too long to run your errands, and/or are consistently late…..and they don’t call you to let you know they are going to be late and why. Or they pull a no-show, and don’t call you, and you have to call them. Then when you do call them, and their phone goes STRAIGHT to voice mail, when they are supposed to be working for you, and you need to be able to contact them, and cannot, yes, there’s a problem!!

11) When you hear them opening drawers that you have not asked them to open. LeeLee did this! Or they take too long in the bedroom to put your clothes away….JuJu did this one night not too long before i fired her, when things started to get their worst.

There are many more warning signs to look for, but these are the main ones i can think of for now.

In November 2012, when i had to let Jessica L. go, i was still very much dealing with the mental and emotional trauma from losing the friendship and support i had from Roger. I was in so much mental pain and anguish by the time JL added to it, that i had gone into my bathroom that night after firing her, and i scalped myself almost bald. That was how deeply i was hurting!!

I can tell you honestly that the past two months with JuJu were just as rough on me mentally. I was also very deeply hurt and affected by her verbal abuse, the way she began to treat me when she gave me my bed baths, and the way she was threatening me and being so snotty to me, that there were several occassions that i almost went into my bathroom to scalp myself again. This is how badly it affects me to be treated like i don’t mattter, like i am just a piece of dirt, by someone who comes into my house with perfectly straight smooth hair, perfume, makeup, etc., and they lord themselves over me as if i need to pay for my existence. I will not lie….there have even been several times during my JuJu period, that i seriously thought about killing myself just to end my pain. But i didn’t.

Instead, when i was at my lowest point….i saw an ad in my sidebar for a local Facebook classified ad group…..and a light bulb suddenly went off in my head, and i posted on there the following:

“I hope that my post won’t be deleted….but i have to post this somewhere….i am an Autistic adult who is in very poor physical health, and i need a new caregiver ASAP, please. I am looking for someone who can work afternoons/early evenings, 2 PM to 8 PM, who is friendly and patient, and who has a dependable car that is easy for me to get in and out of. Duties will include housecleaning, cooking, shopping, my banking, mail pick up at my P.O. box, bathing, showering, taking me to my doctor’s appointments, picking up prescriptions, and companionship. I am a client with IHSS, and hours would be approximately 30 hours a week, 126 hours a month. I hope someone will help me, please. I am in dire need. I think my current caregiver has just quit on me.”

I wrote this on the evening of March 1st, at 6:00 PM, right after JuJu left my house saying she was too sick to work for me that evening. Immedaitely, i had alot of responses, and some of the first were Kay, and Connie. I friended Kay, and Kay and i began to talk. I had her read some of my notes, and she was quite appalled to learn what all i had been through. I hit it off with her instantly, and made arrangements for her to get me to my bank on Monday, March 3rd. She pledged to help get me set right up with good caregivers……and she made good on her word. In no time, i was set up with Connie as my main caregiver, and Kay as my on-call/backup caregiver. Kay is going to be looking for another secondary caregiver for me too.

I was able to finally fire JuJu.

Connie is awesome. She does not charge me a dime or even a penny for gas!! She is honest, sweet, gives great bed baths knows just how to massage my legs, and she is so easygoing, and easy for me to get along with. She has an awesome sense of humor too!! And she can cook too!!

I have have really been having a blast with her. I am feeling so much happier again, i am sleeping better again, i am not as nervous anymore as i was when i had to endure all of those other caregivers who just didn’t seem to have it in them to really and truly care about me.

I feel as if a huge weight has been lifted off of me.

In fact, i feel as though a huge black cloud has left me.

It feels great to know i now have a real human being caring for me.

Connie has a beautiful sweet soul.

She is also going to help me to get a disabled parking plaque so we can park in the disabled parking spaces, and she is going to help me to get a wheelchair, so i can get out more and go into stores again with her.

Kay is awesome also. She got me interviews with two other ladies….who both didn’t work out…but no worries, because i have both Kay and Connie now.

All caregivers need to be like Connie and Kay!!

Yes, i still very much have the street issues. And i kid you not, those problems are still very bad.

I still need to get this basketball-sized lump surgically removed off of my left inner thigh, so i can walk and drive a car again.

But i now know i am going to be okay these next few months till i can make my move to Michigan, which i still very much plan to do, as soon as i have the money to do so, hopefully by June of this year, just in time to be able to enjoy a real Michigan summer!! 🙂

Footnote……this blog was written when i was still planning to move to Michigan. I am not now. I am planning to find a place in my area instead, in the county North of where i live. More in my next blog.

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