Betrayal, Sorrow, and Rage: Things I Do Not Understand (Trigger Warning)

It seems that since my carer was fired this afternoon the little things that went undone or should not have been done are still building up. Trash on my doorstep, which I expect to be strewn thoroughly by the stray cats, my juice down in the raw meat drawer of my refrigerator where it has been with raw meat for a while. A neighbor helped me get a box of yoghurt off of the bottom shelf and there it sat, hidden from view, beneath a pane of glass in what appears to be a puddle of meat juice.

I have had a hell in me for the last few days and yet now that I do not feel endangered, a feeling I couldn’t clearly identify because I wrote it off as my being paranoid, I feel oddly empty. The rage is still there but the degree of heat is down, it’s simmering in my lower back where the pain never fades. The music is helping, as is the fact that my specific flavor of metal is the Elegy disc by Leaves’ Eyes, who doesn’t like viking Symphonic Gothic Metal? Yeah… they took their norse heritage and the Edda and twisted into something that suits my ears nicely.

I felt desperate earlier, and this entire time I have been trying to give her a second chance, I felt… off. It has effected a good deal, including my comfort level with being identified as a nice person. I dislike the aspect of betrayal that nters into any caregiving situation where the caregiver turns out to think that not only am I required to say please and thank you, but that they cannot say they are unhappy in the pairing when it is policy, if you aren’t happy say so! The little jibes that came, the attempts to hurt me? They worked.

To need care is one thing. Most of us could actually benefit from a bit of care in our lives. To admit that you need care is another. To let a stranger into your life, your home, and to see you at your most vulnerable is wholly a third. The aching sorrow that stabs into the darkness that seems right for my soul, it is a bright light like a silver blade under the scales of a dragon. This sorrow comes before I even realize it, it steals my breath, and I want nothing more than to be independant.

I think that moment when I feel the need to assert my dominance in my home is a sign things aren’t okay. I am having to learn what to look at. I did say something well before today’s incident. I did. I also was listened to but there are laws for both her and I. I do not want her to lose all livelihood, but that is something she should have thought of before trying to feed me raw meat. That is something she should have thought of before LYING.

I don’t know what makes a lie something that flares my temper so, but, if there is one thing that can make me lose my temper, it is knowing I was lied to. I have managed to not do foolish things in my anger for a while now but that does not mean it is not there sizzling beneath my skin while I try and root out the truth that a betrayer does not seem to value. A little white lie? Welcome to job hunting.

The lies weren’t little. They were also a smudgey grey color with dots of snot green. Very icky lies. I won’t go into details here, because I already did elsewhere but why bother lying? Then again, I didn’t believe she was sick when she called in, but was hung over after the fourth anyway. She didn’t call me but seemed outright nervous afterwards, flinching when I said I am glad she feels better. Is that not the right thing to say when you are glad someone isn’t sick? Ah well. I don’t think my idea of logic or sense was near hers at all.

To me things that are simple to know were shocking to her. Cat venom exists in her reality where as in mine I know that retractable claws don’t work the same as fangs, which don’t actually retract but lie flat in a snake’s mouth until the mouth is opened via a sort of internal pulley system. They aren’t the same at all. She certainly thought the song Cat scratch fever was imperical evidence that cats have venom and will infect you. I found this out when Nymph sank her claws into me on her second day here. She asked me if I was worried about the cat venom.

That was just an example of her conversational style, I am fairly sure she meant this literally but if not she spent a lot of time on a personae of unintelligent blather. There’s nothing wrong with that, and there are things she did know. It was merely that once a day she asserted something like cat venom. I tried to not let that bother me but it did. It worried me, because if she thinks cats have venom or the other things stated, how is she going to ever graduate college and achieve her dreams? Of course I want her to achieve her dreams, I want all people to.

So there it sits. I am leaving out the gorey details, because the people who need them have them. The things that really devestated me internally. I am once more proud that I did not cry over this. That also makes me sad. I feel as if I should turn away and hide myself. As if I should try and live on my own for a while.

Sense and instinct are clashing. Sense tells me that if every time I get my own food I break things, spreading glass around my house then I must NOT go without a caregiver. Instinct, or perhaps something base and fearful in the mask of instinct, tells me the next one will just be another failure and that it would be best to not get attached. IT would be best to not hope.

I am trying to shut that voice up. That voice started before my first caregiver, and with the bad ones gets a little louder but with a few has gone away. I wasn’t right for them. That’s different and I am okay with that. I know that voice is really the voice of a terrified little girl waiting for her father to force his way into her bedroom, to hurt her where she is most vulnerable. That little girl who fears everything and everyone, and wants to be isolated beyond what is comfortable. That little girl that never will grow up, but cannot reign over the adult. I mourn her pain. I mourn my pain.

I know the little wounded child in me is wrong, and that being alone will mean I just starve to death. I know that I will wake up in the morning, I will get things done with the temp and wait for Monday. Then I will meet another potential caregiver, I will move on.

Even tonight, I will merely take the step forward to do what I need to do. There is no point in anything else, there is no point in waiting for the sorrow to eat at me but I can try and let it go. I won’t forget, I probably won’t forgive because I don’t think I could unless I thought she didn’t actually mean it. I will try and let go. That’s not the same. It will take me a month I think, that’s my usual, to stop playing the moment when I nearly lost my temper out in my head.

The moments. I didn’t get a real dinner last night because of her lies. Today she asks me if I ate. I almost screamed at her. I couldn’t hide my frustration. She asks what is wrong. I say I don’t want to talk about it and lets just have a day. She pushes at me, picks at me for fifteen minutes. “Not telling me makes this a hostile work environment.” My temper almost escapes again, I consider seriously squirting her with the cat squirt gun and telling her she’s bad and wrong and disgusting. I instead lift my phone and say, “Okay you can go home then.” She says never mind. I turn on music loudly.

She lasts a whole hour and a half before she nearly wins out. I think she wants me to yell. She seems to be enjoying pushing buttons. It’s in the facial expressions, it’s in the raw meat she called a cooked hamburger. I think these doubts are over reactions at first until she huffs at me for asking her to microwave the burgers for three minutes. That cooked them, nearly burned them. I couldn’t let go of the rage. I was so very hungry, so why couldn’t I get real food from her? Why couldn’t I have my needs met? That takes less time. I picked up the phone again, told her the time, and I said “You can go home now.” The little smile, it bothers me. Why smile when you are clearly not going to be allowed back to work?

“Fine.” Out she went. I spent the next few hours making sure things weren’t going to lead to me starving all weekend. They won’t. I will be okay. I will have enchiladas and spaghetti I think. Not sure yet but that sounds like a delicious weekend to me. I will face the next set of demons that I know comes afte rnot eating. The urge to eat or not eat, I am not sure which will be out of proportion but I am prepared. I was already after I didn’t get food last night. Peanutbutter Bowl is not dinner. It’s snack. Peanutbutter and jelly without bread in a bowl. It is also quite gross. Protein however lasts longer than carbs so it worked better to fuel me.

In the last hours all the things that she said and did were rehashed, each thing that I see as wrong shared, and documented. The previous documentation was pulled forward. I haven’t documented something or someone this much in a while, not since I had to fight to get handrails in my bathroom. The time that is unaccounted for bothers me the most, as do the whispers of my neighbors. Her racist accusations almost had me fire her last week out of a want to protect my neighbor yet she is a behind the back racist, which feels worse to me but will not directly effect my friend as I will not have her around him.

I wish this was the worst caregiving experience I have had. It’s very bad. Top three. She just comes under K and HIM… I doubt anyone will ever surpass him in the horror department. For that I am grateful. There is nothing left for me to say that should be said in a public space but, I will be okay. I will mourn, I will sorrow. I will remember this betrayal.

I will unlock my door in the morning, I will look to the sunny or cloudy sky, I will know that the future rises with the sunset, and the dawn brings something new for me to live with.

Really? (Trigger Warning)

I am not sure I should be writing this. I may not hit publish but I am at least going to put these words down on my screen. It’s two in the morning, I am sitting on my shiny wheels and looking at ways to modify them (no structural mods, just accessories I can make like a little table and ways to add reflectors that would look really cool and would be all mine). I am trying to stop my brain enough so I can sleep.

I am upset. Not the upset of screaming or crying but upset and feeling a bit betrayed. Having a caregiver breech trust always makes me feel this way. I am tired of having caregivers do really stupid things that endanger me and get fired. Caregiver 1 had the most hours, almost all of them. Caregiver 2 had just enough hours to buy some food maybe and was in need of more personally so that she didn’t have to quiet this job and find another.

Caregiver 1 is no longer employed at all. Not with me, not with her other client. I did not choose that act but I knew my actions would have that end result. It was her choices that brought this upon her. Caregiver 2 now has all my hours. I think that her hard work in the small amount of time, picking up any hours I needed except once when she just couldn’t and not pressuring me to change my schedule for her needs is proof enough that she can handle a full week of working. I think I would be more upset without having had the back up plan anyway.

So what did Caregiver 1 do that was so bad? Lets start with reliability. If I have a caregiver I need them to show up around 12 so I can eat. By then I am really hungry but it’s safe to eat due to the queasy factor. Arriving between 12 and 1 is not really acceptable, arrive on time. She wasn’t late, because we moved the schedule for driving time between clients. Leaving early, such as after a half an hour of work, or not calling in to let ME decide if I should be exposed to whatever virus your kids have is also pretty bad. Still, those are things that I think happen due to humanity and it wasn’t a consistent issue with the sick kids. The office talked to her about the lateness and after we figured out the issue I just dealt with the challenge on my end.

There was more, but I didn’t know about it. You see she’s had people dying left and right in her family. Except… that she lied. There were two deaths. One she sent her family to the funeral to pick up the memorial sheet for proof and took the day off to play with her kids. I had no caregiver that day, as Caregiver number 2 hadn’t been hired on yet, and this was after a weekend alone. I thought that I had hallucenated this confession as it happened during my darkest day of no pain meds. I barely remember anything from then so I wrote it off. It is understandable for me to doubt myself when I am seeing people telling me the worst things all around, people I trust and know don’t actually think or do the things they said. My pain makes me vulnerable to a form of self doubt that is fairly insidious.

The second Death has apparently happened a few times, and finally for real. Finally is not the best word in this case but it is the only one that I can make sense with right now. Grandma has died three times in the last few months, for time off of work. All the office tells me is a death in the family, and since my mourning is for people and not the one who died as I think death is a good thing (a transition or rebirth) I don’t talk about it much. Few people are comforted by my beliefs and I don’t want to lie to them. I don’t want the awkward feelings there that occur when I know I screwed up and I just can’t help but make it worse. I’ve found offering true condolences is enough most of the time anyway. I don’t promise to do anything I can but I do mean sincerely I am sorry that they are feeling such loss. This time Grandma really died. Caregiver 1 started being “unable to work throught he pain” last week. Grandma was alive then but the office was told she had died. Last week I had more time with Caregiver 2. It was great, as even through the pain I felt safe, I knew my needs would be met and since Caregiver 2 is closer to my age we had some girl talk time when I needed mental distraction.

Today Caregiver 1 admitted all of this to me, and vented about family issues in regards to this death. I did try and stop her but she kept going and then repeated her confession from the time of the Paintrocity and furthered it by telling me she was going to find a new job, and quit. She then asked me to not TELL anyone. You see the flaw here?

Do I keep my mouth shut and endanger myself with someone who went from being VERY reliable when she wanted the job to disaffected and unable to meet my basic needs while waiting for her to find a job?


I called the office after she left because she was too upset to work. I told her that next time she should just call in. Part of my challenge is that she brought me some very expensive food today, that I could eat. I felt as if she were trying to bribe me. You see she has four kids, is low income, and is then endangering her job with what I can only call abject stupidity. I also was told by her that she was under investigation for not doing her job with her other client, though she assured me she was not taking advantage of his inability to remember events or people. I don’t know if I believe her or not but that feeling of everything being in jeopardy was there again.

I felt fear, I felt anger, I felt betrayed, but most of all I feel confusion with little sparks of misplaced guilt. I did not say that I wanted her gone, but I did need to talk about what happened and I did have to decide, as there is no way that this woman can work with anyone who depends on a schedule. I am struggling with the in home care doctors because the doctor I am assigned to refuses to schedule me… with me. She keeps trying to show up arbitrarily without any set time. If I call in and ask for a time, they say she will call me. She does… two weeks later saying she’ll be here this afternoon.

Her perspective? Since I can’t get outside I have nothing to do.

I explained that not only do I have a schedule but I may have company. I also need to mentally prepare for the invasion of another person into my territory. I feel that this doctor doesn’t comprehend respect. Just because I have been trapped in my home for what feels like forever (closer to about 9 months or so) does not mean I do not deserve basic respect. She gets a date and time in advance with her doctor. Why don’t I? She’s been supposed to schedule a set monthly day with me. Instead she arbitrarily has tried to come once a WEEK, and I won’t let her in unless she does this my way.

My way takes maybe five minutes. She didn’t want to schedule the next time to see me after our first visit in person. Yes it was a good visit but I am so frustrated by this I am going to have to go to my previous doctor. At least with her I felt like I was respected as a person.

Today I did explain this again to the travelling doctor’s office. It is noted in my chart supposedly. I told the receptionist she needs to tell this person obviously. Amazingly I was able to schedule an appointment for Monday. This is two arbitrated appointments in a row that have occured. I have a graduation I am going to try and attend if the apartment manager fixes my gate in time on Friday, by arbitrating that she would be here at x time on Friday she arbitrated that I couldn’t go because SHE SAID SO.

I felt more anger over what felt like an invasion and an attempt to control me by the doctor than I did by the issues with the Caregiver. I suspect that is because the second caregiver readily took the hours, my time with the caregiver will be moved back to where I need it and no I will not ever accomodate another start time again, and I am still enjoying my wheels. When I was done being frustrated I went outside and sat staring at the sky or my rosebush and just existed for a moment.

I think I will publish this, but I really want to know why people think I am furniture to make them a buck. Yes, a caregiver gets paid but I am not furniture. I am a sentient being that will protect itself from invasion by “aliens”. I will not allow people to decree that I must let them in, I will not allow people to tell me they lied but most especially not when that lie could endanger me.

I am getting tired of the challenges. I just want one week of good things only. I know this won’t happen. That would be like expecting this wheelchair of mine to take away all my pain, or the medicine to take away my pain. Pain is a part of my existence. Nothing can fix the pain in my lower back. They can make it better though.

I am looking forward to something else by the by. Paratransit. I think it’s expensive and I am not sure I can afford four dollars to go and do things (two dollars each way) but I do want to sign up for our city’s paratransit service. I cannot ride the bus, nor can I sit outside waiting for a bus in the sun or snow. I can however get around this with paratransit. This means when I really want to do something like see a movie (rare but some I will pay to see in the theatre. Batman… Green Lantern… uh… uh.. yep that’s about it) or visit a friend (not likely since most live with stairs even if they use a wheelchair so phone works for me there) or…  well in general it is freedom. It also means I don’t have to worry about getting a car for my chair lift right this second. It means no gas money.. and with the cost of gas it’s probably about as expensive!

Plus Paratransit means I may be one step closer to going back to COLLEGE. I am not sure I ever will but I like the option. Oh and Paratransit means that I don’t have to worry about the bigoted and prejudiced bus drivers going past me for three hours while my skin blisters up, or stating that even with the law right infront of them I cannot bring my lovely Service Animal with me.

The biggest surprise about the wheelchair has been Sprite. I am sure she thinks I was going to run her over tonight since she is not afraid of the chair at all and didn’t move out of the middle of the floor. I stopped of course and honked my horn at her. She just stared at me and laid down. Luckily she comes when I call her. She doesn’t like going outside and I think it’s because the ramp feels really scary in this chair.

Some of that fear is my fear of heights. Some of this is how narrow the ramp is. It’s just as wide as my door way. So is the chair. I already put in a written request that the ramp is widened. I am going to add a request to this that there is a small lip placed down so that I can go into the dirt of my yard. The ridge is just too high.

I know today was stressful but there was more good than bad. I also had a friend come over with her nephew who was really adorable. She was nervous about baby sitting him. He’s about a year and a half old. She was surprised to find I actually have some baby skills. His parents wanted him to meet someone in a wheelchair because they are big on intersectionality. D as the young man shall be called is a person of color but is also mixed race.

He is REALLY smart too. At first he was a bit scared of the chair, not a lot but this chair is pretty big. He had a toy car with him and I watched as he studied the car wheels, then my wheels. He frowned, and asked questions with his body language. I could see them in the same way that I see Sprite’s words most of the time. So I talked to him, and explained my chair. He forgot his worry about the chair being something new once he watched me adjust the tilt and recline for my comfort. He didn’t once try and push the buttons on my chair but he walked around it a bit and then gave a nod.

I let him sit on the scooter and gave him some ham. His auntie was worried about his making a mess but that’s what a paper plate is for. He took the key out of the scooter and studied it, found out Velcro makes an awesome scriiiiitch sound when you pull it apart. He figured out how to revelcro the keyfob that I use for the scooter keys. It holds things, so I used to use it for my copy of the ADA service animal law. He then put the key back into the scooter, or tried. The key is a bit difficult to manage for an able bodied adult. He at least balanced it on there.

I had fun. I found I miss my niece and nephew a bit. His aunt learned about misdirection with kids, and that a bit of a mess is okay as long as you clean it up at the end. Looking at my house now you would never know about the chips and ham that ended up everywhere. My home also remained gluten free even with a young person here so I am contented.

He did manage to gross me out a bit when he brought me a cockroach and handed it to me. My fear of cockroaches meant I ended up shrieking and flinging it away. We found it, it is no longer with us, and he helped us find out sprite’s been piling them up half alive in a corner of the bathroom that rarely gets attention. (Behind the toilet.) Apparently they chase good  but taste bad. Blech.

As far as any worries about why I have roaches, it is not a filth issue but it is a city wide challenge. In my city if you have sewers you have roaches. Even the rich people with 3 million dollar homes have roaches here. I shouldn’t find this pleasing but I so do. I haven’t had so many roaches as in this house, I admit that but most of the time they are crawling out of the drain or something. Not much we can do but as long as no babies or kitties try and feed them to me I am happy. (Why do they always want me to EAT the roaches?)

So really, good and bad… happens.

Good Things: Caregivers

I promised on Here Be Dragons to write something happy, and I have lists of good things to write about. The darker issues keep butting in on my happy little blog. I am not saying they are not important but it is important too to look at the good. I just spent two  hours listening to some Lady Gaga, and feel nice and relaxed after an eight hour nap. It was supposed to be just a little lay down time to make my body stop hurting but I must’ve been lower on spoons than I realized.

I have found it a bit amusing lately how many people are stunned that I like Lady Gaga. Is her music perfect?  Nope. Her stage name cracks me up and it took me a long time to decide to like her work. It’s catchy, she is blatantly poppy, and of course as a white woman who has bleached her hair blonde she fits into the societal norms, and her videos often have a dearth of people of color. I don’t know how much of this is in her control but her videos also address issues like domestic violence (Paparazzi does have this element there), human trafficking (Bad Romance), and she has made a video that is blatantly homosexual (Teeth). I think it’s fantastic.

Part of what I am enjoying about my new caregivers is a lack of judgemental behavior. Yes there is some but it is usually to my benefit. We have fallen into our patterns, which I need personally. There are the set daily chores, like watering the bamboo plants or cleaning her Meowjesty’s food bowl. It’s not really to spoil Sprite of course but is a cleanliness issue for me. Piles of rotting cat food are just nasty, and other methods didn’t work for me or Sprite. There has been none of the niggling doubts about my safety. There has been none of the stress that I associate with having a caregiver. Other stres? Absolutely. My sink exploded with sewage and that was really bad. Having a caregiver present allowed me to have enough spoons to get that taken care of. My pipes got steralized too, because of my weak immune system. This is also why all water I consume is BOILED.

I have company coming over tomorrow, and in the discussion of the potential plans for the day I suggested that I may send my carer to the store. She’s already nabbing a tax form for me, because mine never showed in the mail. (Thanks IRS, I can just run out and grab those right? Uh… no.) I know I cut it close, I had multiple requests put in to have them mailed out to me, but you know it just didn’t happen. She asked if I was sure I wanted to be alone with people. She then realized I may have been offended and made sure I knew the why. I did before she told me, but appreciated confirmation.

Why did she ask if I am comfortable being alone with someone here?

Reason 1. I am not comfortable with most people.

Reason 2. I am very private and having people come in usually leaves me feeling poorly and she noticed even a simple five minute visit from a neighbor sets me on edge.

Reason 3. Am I safe? We all know not everyone in my life is the best person and some are quite rancid.

There was a fourth reason but it melded with the others and I forgot the words for it. I told her that I always can change my mind but I think I will be fine. I also made sure she knew I appreciated this. Both caregivers for the week and the week end are aware that they trusted. Sprite hired them both and made that clear too. They screw with me they answer to her. This causes some amusement but they take her trust as seriously as mine.

With both I also know if I need them and we are over hours I will still have my needs met. I am not just a paycheck, but first and foremost I am a person and if I call on them after hours they know it’s an emergency. This was already proven by L, the weekend caregiver who stayed until she was sure that there would be NO sewage pouring out of my pipes and also when she thought I might need to go to the ER. I thought  I might too over that stomach blockage and a few other things. I also made sure that I can text at least one of them if my jaw ever dislocates again and locks down where I must seek help and can’t talk for it.

The schedule on hours is too small, and my caregivers and the agency have agreed to help me petition my insurance for more hours. The increase will likely be by 15 hours more, and that can make a huge difference. I will no longer have just what I must do done but also what I want done. I may even get to see the Bat Mobile this year! It’s coming to a comic store near me on May 1st. Last year it was not there due to rain. Understandably so but, the Bat Mobile IS the Bat Mobile.

All in all, I haven’t had a single caregiver as good as either of the women working with me. Now I have two that I would qualify as the power houses of caregiving. If I ask them to do something they ask how not why. I may tell them why but usually they get it. There is no questioning my food needs, but instead food has become a celebration of my ideas. My meat cake never would’ve happened with other caregivers and I was very excited to get to create again.

I am creating. I am excited. Yes, the depression is still kicking my butt. I know if I need to call for help to protect me from me there won’t be a summary dismissal of need, a dismissal of value, but instead the help I need will be given without pressure to slip away into the institutions that try and suck all humanity up into their vortex of evil.

I get to be a human being again. I’d forgotten what this was like.

What the Hell! (Trigger Warning)

Today’s trigger warning is brought to you by abusive caregivers! Today I did not want to wake up. Sprite insisted, and in her special way got me upright, into pre-shower jammies. I always put on clean pajamas before I shower, so that I can then put on clean clothes. It feels good this way. So I put on my red satin jammies. I feel like a movie star with this on. I did the morning ritual, pee, meds, considering food, rejecting that idea because it’s too early. I curled up and watched a cartoon on my computer.

It was so late and my internal clock went “Ding, caregiver is late.” I looked at the clock, she wasn’t just a little late. She was a half an hour late. So I called the office. They normally call if someone calls in, and I requested that they make sure she knows, she calls them BEFORE she is late. They called me back, they gave her a formal warning. This is your job on the line, if you don’t call in next time you get fired.

I don’t have to hear the excuses for why people are late now. I try to not be late, it makes me panic to be late. I do not hold others to the same terror of lateness that I experience. I opened the blanket so I could watch the sky, still planning to shower. This would be three whole days not a week… twice in a row! Improvement. The office and I were on the phone when she walked up, so I told them she was here. Simple. Easy.

She starts giving me the excuses and I cut her off. “I don’t want to hear them. I don’t need to either. Lets just get the work done.” Maybe I said it wrong? I know better than that but she argued about feeding the cat, about feeding me. I pointed out she was over an hour and a half late, and since she never called I couldn’t compensate for that. I have to know she is going to be that late when I am in motion or it’s too late. I save moving sometimes or will save movement energy if I need to. I also tell her that we will be mopping tomorrow…

She storms off, then I hear crashing. I smell bad fumes. I was eating. We don’t clean when I eat because the smells can make me queasy even on the approved stuff. I choke down my food, more crashing. She’s throwing things. I hear water splashing on the floor. She never went out for a broom. My questing mind won’t let it go. I am afraid. Sprite is afraid., Sprite.. afraid? My indicator of when I should be afraid is screaming in terror and is trying to find a safe place to hide.

I stopped doubting myself, and considering my options. I had to look to see what was going on. I used movement energy, I got upright and moved to my room, I paused in the door way, my knees were dislocating so I relocated them. The cracking made her look up. My bathroom was thrashed. No amount of cleaning makes THAT kind of mess. I grabbed my ebook reader, and then went outside. My energy is spent, I am afraid. How do I keep going? My brain stalls a moment. What do I do?

I lean on my fence, letting it hold me up. Today was thankfully good on the ability. So rare are these days when I can move this far without falling. I did not fall. I creep out of my gate when I realize she could see me. I hold my mace at the ready. I am vulnerable, the sun is burning my skin. My neighbors look up. They are gathered as they tend to be and they notice me. I rarely commune with them, but when I do go out I am never in disarray. My hair is always brushed, my feet always shoed. Shoed is a word? If not it is now. I am never in my pajamas. I am never without my scooter.

The agency and I talk, I explain what is happening. I am put on hold and transferred to the man who runs the agency. Robert is a tall black man, he used to play football, and he has always felt safe to me. He has a nice smile, and always seems to understand, even when my brain is tied between pain and panick. I get the words out, “I need you to come remove my caregiver, and get the keys. She can’t be here now.” I explain what I saw and that Sprite is also afraid. I also tell him I am pretending to call my mother, she has no idea I have done this because I am afraid.

He got here in five minutes. I had just made it in, the door left unlocked. The window is still open. Jo has moved to the kitchen, supposedly the bathroom is fixed. I haven’t looked yet. She is smearing the broom around in soapy water. No mop. She doesn’t grab the mop until Robert is here. My knight in shining armor. Damned damsel in distress. I hate needing a rescue. I signal for him to enter when I see him. He steps over the puddle that is my entry way, and her mood shifts. She stops glaring at me when she sees him there, and grabs the mop. We let her finish “mopping” though my floor has brown streaks in it now. It’s dirtier. Cat poop litter streaks? That’s the level of ick that is in the bathroom. That is why I keep the germs seperate. Different broom, different mop. My kitchen floor is coated in grime. It scares me.

He didn’t tell her I called. I didn’t have to talk until I was ready. Robert noted Sprite, still screaming. She calmed some when he entered. Sprite likes him too. She moves and sits beside him. She keeps growling and muttering at Jo. I get the keys back. Robert and I talk. “You should never be afraid of your caregiver. You did the right thing.” I explain, sometimes I am afraid of everything and everyone and I can’t always tell if it is reasonable fear. Sprite tells me. He points out that Sprite calmed down the moment the door closed behind her.

Sprite is asleep. I have been calling people. I was on the phone with someone, I also got a few calls while in the moment of mess. I also texted two people before I realized it wasn’t PTSD and autistic overload. My body hurts. My body doesn’t just hurt but my mind too. The switch between calm and rage was so sudden. I flashed back. My terror was real for the moment. It wasn’t too much it just was. The agency respects me as a person and knew.

I called my mother, and told her that I had to use her as an excuse. She pointed out people DO argue with their parents, so it was a good excuse and to use it again if I have to. We talked. There was no anger. There was no fear. I talked to My Beth, my sweet sister. She asked why I was so out of it. I told her, we talked about the mundane. My Beth is almost an adult now. I know I should not call her mine but she is mine in a way. My memories. My sister. My Beth. She was tired, and yet she made sure to talk to me a bit. We didn’t talk too long, they are moving cars today so she had to go help winch something. My mom called back after they were done winching. She was glad I trusted her enough to use the excuse.

The reason that is trust is, my caregivers before who were not giving care but abuse have called to verify my excuses. I am also afraid of using an excuse with someone who could be hurt. It takes trust to let someone be your excuse. It takes trust. I am trying. She is trying.

Still… what the hell happened? I can’t follow the line in mind. A half an hour of abuse happened. The why escapes me as it always does. I can handle the cursing, I can handle someone being mad. I cannot handle the flinging of things. I have to pee now so I will see how bad the bathroom is. The floors should be dry now. It’s been an hour. Right now Jo is finding out she no longer works for the agency.

I am always afraid that I will be told I cannot have a caregiver again when this happens. I already know I have a temporary person coming in and that the agency doesn’t hold this against me. They hold this sort of action against the caregiver. I am known to be a rather laid back person (on the outside, my head is not so laid back as you my readers know). I tend to roll with the little challenges, I try to work things out.

“You should never be afraid of your caregiver.” I am going to try and remember that. My little fear and trepidation, I will try to let them go. I am not afraid of anyone at the agency, my neighbors, and I am working on my fear of my mother. I felt safer outside of my house today. Maybe this is in and of itself a form of progress?

Caregivers and PTSD (Trigger Warning)

I have Post Traumatic Stress disorder. It in some ways rules out how I can live my life. Sometimes I cannot bathe because of it, sometimes I cannot eat, sometimes I cannot move. sometimes I can only scream. I fear the quiet after a panic attack, and I still am unable to just cry. Somehow now I can cry over things like William needing a new home but I cannot cry over the fear and panic associated with the triggers of my PTSD. I revert to that child who learned so long ago that if you cry that means you will die. Even writing about this I am triggered. Truthfully I am writing this because I just had several triggers.

I have had to deal with my PTSD everyday because I have a caregiver. My safest way to not have any PTSD triggers is to be utterly alone. Not lonely, that can be triggering, but alone. Jo, my new caregiver, had her second day today, I was squirrely before she came in, that urge to run, flee, hide, or attack and drive her off rearing up. This is normal with new people. I told her I was having trouble and there was no odd stare, none of that “Okay she said she is having a triggering day and mentioned her PTSD what was that again?”

This is new. We attacked my coat closet today, this is one of the places where K the abusive caregiver stuffed a bunch of things she was meant to either put somewhere else or get rid of, or things I wanted there and some of these things were HIS. In this closet we found a cadre of abuses, little things, big things. Painful things. I am hurting. My hands are trying to curl into fists and there is physical pain to write that out. It is somatic pain, and I am pushing on.

The panic hit when she pulled out a comic book. I am a huge comic fan, she knew this with in an hour of working for me, the batman paraphenelia, the radio show on the feed, the statuettes, and of course the actual comic books all are a dead give away. On top of that I talked about them with her. She likes Batman too, and I will get to see the third batman movie when it comes out next year or so on opening day. We made the plan. Still, she saw me freeze, then I babbled incoherently, trying to explain what was happening. I managed to say, “Hide that I can’t see that.” She did. She did not ask what happened but just stopped for a minute. She didn’t ask if I was okay, because that pisses me off and I told her during the interview that is a bad idea. It’s a secondary trigger. She just waited. “I need us to skip this box for a minute, I am fighting off panic.”

Her response wasn’t to rush me, it wasn’t to ignore me, it wasn’t to tell me I was stupid, nor was it a misunderstanding of what I was trying to say. Her response was to say, “Okay.” She put the box aside, and we did something else while I contained myself. We go back to it, this time I am ready, but still it’s bad. We come across one of my wood working pieces that I was told was lost forever, lies are a trigger. I held it tightly and used it as a visual shield against the growing pile of triggers. I didn’t have to see them, and she was patient. A task that when tried before was either full of failure because of my PTSD or was not done properly hence having to do it all over again… a task that I was certain was impossible? This was done with in an hour. Just one! My living room is spotless, william is passed out in happy sleep with the toys that he lost under the door. I know where the triggers are, and we have already boxed them for proper resell.

I am saving for a new computer, as this system is showing it’s signs of aging. It burns me with fear the idea of being without any outlet, without any ability. Being without a computer isn’t as bad as some of the things I have lost but it allows me freedom. She agreed to help me with the removal of these items, where I can benefit from them financially. This, this was amazing. It won’t be an easy task but she is willing to help me juggle my triggers.

I have denied for a long time how disabling my PTSD is, this was self denial. I worked hard for years to shed the triggers but the last year brought all of them back and added more. Every day I plan around my pain, physical, mental, and emotional. Every day, I must be prepared for panic and terror. Having a caregiver makes this harder because I am not alone, and humans make errors. I do not expect my caregivers to read minds.

Jo was willing to work with me to find a smell that was a trigger. A random smell that doesn’t have clear description, wet, gross, evil. Evil is of course subjective. The smell was in my bamboo plants. The water needed to be changed, so we did this, and now the smell is gone. My food was a trigger today, so we worked to find food I could eat. There were unexpected triggers too but, she just did what I needed her to do.

A caregiver has a hard task without PTSD in the elements that they must deal with. They have to compensate for the body and mind in ways that are difficult. Modern society has added burdens to the caregiver as well, some may have to be tech support, or they may have to deal with money, severe allergies, or even broken wheelchairs. PTSD however is also extremely common among the disabled. I know personally that PTSD by itself can be disabling. Post Traumatic Stress can cause agoraphobia, because how can I go outside when anything could send me plummeting back to the worst moments of my life? How can I get food if eating it can make me remember the worst moments of my life? How can I breathe?

I admire skilled caregivers, and now I have had four caregivers, two rotten PTSD causing caregivers… and two very skilled caregivers. It was difficult to let Annalys find a new job, it was horrible the moment I realized that she could not work with me. I felt panic, I feared reprisals, I feared lonely, I feared the filfth I have endured. It all piled up on my shoulders. Annalys was wonderful but I couldn’t explain to her why we could never open the closet of PTSD Doom, I could never explain why things upset me and that added stress for us both. On through her last day she still set the bar so high that few caregivers could match. Jo manages. Jo even gets some of my nerdiest jokes.

Having change is a PTSD trigger for me, even though I often crave it and crave adventure. I have learned in the past few weeks that being able to say why something is upsetting is a huge part of being able to deal with my PTSD. I never used to need that, but because I am dependant on someone else, I need to explain to them the why so that we can ease the triggers. I suspect this is something others do. Jo knows she will not have any coherency from me on Thanksgiving, and will be serving food then leaving. She knows the why, to a degree. This was part of her interview. Jo has dealt with PTSD before. Her skill surprises me.

I am probably babbling now, but the fog is fading away, the shadows of the past aren’t visible anymore. I am still disoriented but that is mainly the vertigo. I am left to wonder, how do those without caregivers deal with these triggers in their homes? What do you do if there isn’t someone to help you and the pain and fear is still paralyzing? I used to have an answer but the answer does not fit. I also know that some of what I did to ‘deal’ with my issues was actually self abuse.

I am taking more steps on my journey, and they are terrifying. The voices of the thousands of moments, the thousand pains, the thousand little deaths are in my head all screaming. Those cries are the last to go, and maybe this time I can mourn for the little girl I never got to be. At least I can cry on the inside.


Today there was a great Victory. Not just for me but for others with animals that are their helpmates. Service animals have always been controversial with in the doctor’s office. I have had to change doctors a few times given the responses, some places just refuse to accommodate your needs and when asked they would rather be reported for an ADA violation than bothering with reasonable accommodation. Today after my appointment I was told I couldn’t bring my service cat back in. I asked to speak to the person who made the decision and pulled out my well worn copy of the law. I realized this copy is the one I used last time a doctor’s office discriminated immediately, there was highlighting on the portions about medical offices.

I asked the why, and I was told something new. This office does allergy shots and the risk of exposure for other patients is a concern. I asked if we could compromise which startled the office manager. It actually made her freeze her eyes wide with shock. Compromise? She asked what I would suggest so using the ADA as an outline I pointed out that I sometimes cannot even get out the door without her, but I do not want others sick. Sprite will wear her most covering outfit when we go in and I will call in advance so I can go straight into the office where I will see my doctor. This was our compromise. This allows me to have my needs met but does not infringe on the rights of others.

I expected a huge battle, but instead I was given victory. I left a copy of the law with the office, and explained what each part meant to the office manager as well. She hadn’t really ever bothered learning the ADA laws and therefore was unaware she had been about to violate my rights. I did remind her ignorance is never a viable reason in the court room, but is instead the fool’s gambit. I said it as nicely as I could of course. Victory, glorious victory. I feel more secure going to the office now, I feel respected, I feel human, and I feel alive.

In other news, I started with my newest caregiver today. The previous person was so great but that partnership is at an end. She has moved on to another client who speaks her language fluently, so her needs are being met. The new caregiver and William are already attached, and she is going to see if she can take him home. William may have a home. She understands his needs, and is willing to make the commitment. All feels right in the world, though it is a bit rainy today. Oh well, it couldn’t be a perfect day… that might be asking just a bit too much!

Oh, and if you want some great audio entertainment… check out Pendant Audio. They do radio shows! I know that not everyone is into this sort of thing… yet their work is really high quality. I am currently catching up on my Earth-P radio listening. The shows are short and make great waiting room time killers for those days when you just can’t read.

Another One Bites the Dust (Trigger Warning)

I find it a bit odd to be writing this post. It isn’t odd that I would write about caregiver abuse, but that I would write about it again so soon on a personal level. I’ve been quiet about it because I didn’t want to spoil the surprise for my not so perfect now ex-caregiver K. Remember when I posted that the Honeymoon was over? I didn’t talk about the whole there, nor did I mention that K was going to be fired from that moment, as soon as I could find a replacement.

K was not as bad as the other abusive caregivers I have dealt with, but, she was worse in some ways. She was abusive to my neighbors, not just me. No one should be abused but I have always felt it should just be me, if anyone at all. Not heroically but I don’t want anyone else to hurt. I also was a bit unaware of some of the abuse, still in survival mode. It all hit me at once the other day, but a couple of days ago (That’d be a Monday) things exploded.

Before going into that I want to list all the ways K was abusive that I can think of, partly because I still feel this little niggling doubt, these caregivers can’t be all bad right? This is a symptom of abuse itself. It springs from that old addage, that if the problem keeps reoccuring it must be you. I realize that there may be truth there, but, with abuse it is not the fault of the victim, no matter who they are.

K’s Ways of Abuse:
Tardiness. The instant she was aware that I couldn’t just fire her, she became so unreliable I spent the next few months literally just waiting for her. This meant no appointments unless I wanted to risk punishment, this meant missing religious activities, personal activities, and put me back into that pocket of isolation that I had fought so hard to get out of. This meant also that I couldn’t schedule appointments with other caregivers to interview them.

Offering the Forbidden Foods. Forbidden foods do not just include allergens, which she filled my new kitchen with as she put her own food in my fridge and freezer. This includes offering me food that I specified triggered a PTSD response. Turkey and Quesadillas both to me are the worst food in the world. It’s a bit ironic on that last one but, it is no longer one of my favorite things. I told her clearly when I hired her that these foods were not welcome in my home. If I pissed her off, she would offer it to me, then mock me for being upset if I showed it.

Emotional Abuse. This is a bit of a borad umbrella, springing off of the specified torment above, she’d ask if that was Paul outside, she’d mention how hard it would be for me to escape in this apartment with there being a limited number of exits, she made sure to tell my mother I think she’s a bad mother, she did a dozen little things JUST to hurt me. This included losing things, hiding things, and accessibility challenges though that over laps into…

Physical Abuse. Being denied the ability to bathe, clean clothes, food, etc is physical abuse. So is spiking the heater up to 90 on a heat sensitive person, when they are asleep it is more dangerous. Putting piles of boxes infront of the refridgerator and then not showing up for a few days is also abuse. Making the home in accessible by arguing about where things go and then just putting it where you feel like is abuse. Throwing things, is abuse. Burning food to punish someone for not letting you make up hours you missed by being a lazy (censored) is abuse.

K I sure as hell hope you read this, because I never got to explain to you why what you did was wrong, and your mommy sure as hell never will. It’s also wrong for you to not buckle your child and enforce her seat belt time. If she dies you are liable for her death as Murder. It’s a cold hard fact, and one I hope you never face but, with the way your kid runs around a  moving vehicle and distracts the driver, her danger increases. Oh and that warrant for your arrest? Who will take care of her if you never resolve that….

Snarly side note aside the abuse list is a lot longer but it’s hard. I feel like I lost momentum in my writing. So, since I can’t list every abuse let me tell you why she wasn’t given a nice ejection. The last day with K.

It started out on a somewhat cloudy day, I took the weekend to myself, because the endless waiting has left me a very angry client and Friday she was so late that after asking me to get up early so she could come in and have the afternoon off, I said screw it and locked up then went to sleep. I told her I was doing so. I worked it out with the people who are helping me change agencies, the original plan to ditch the pain in the butt, and they agreed with my choice so I gave K the weekend off. She always complains about how hard the work is, how we never have fun etc, so it seemed like a good idea. Side note here, you can’t have fun if you are late and MISS the fun.

So, Monday comes, I slept a bit late, took my time getting ready, I didn’t know if she would show or not. I unlocked the door, go to the bathroom, and the banging starts. An Unlocked Door is impossible to open you see. So I finish my business and go to open the door. She is HOLDING the knob so I can’t help her. I have to work hard to not show my disgust at this and I go and sit down. First things first I give her a chore, the litterbox. Not to punish her but because after five days it is rank. Five Days. She didn’t do it when she was told to the last time.

Then, I decide to ask for food. This is where it all starts to go wrong, apparently my wanting her to do her job is a bad thing. I bought pizza recently, and decided to eat it. So I ask her to put pepperonis on the pizza and use the oven. She supposedly cleaned this oven but I always put my pizza on a sheet and insisted. Now I am glad I insisted on that because with in minutes the oven, which she supposedly cleaned, was on fire. She set my kitchen on fire.

Instead of turning off the oven, opening windows etc, she runs outside for five minutes. I am stuck in smoke. So I start trying to get the window open, because I cannot go outside without my chair. She comes in and yells at me to sit down, so I do. I am not going to waste energy arguing. She then proceeds to leave the door open, to which I ask her to close it and lock the cats up THEN open it. I don’t know why this is a bad thing, I want to protect my cats. They take care of me. She replies with, and I quote because it pissed me off, “You don’t care about my feelings!” Her feelings? I didn’t think before I spoke, “Not right now, no. Now close the cats up.” I am choking on smoke, she keeps going outside to escape it, and then says that crap? Really? She follows this up with a, “After all I’ve done for you.” I let go. I have kept my anger on a short leash, and this is the first time I have yelled. She;’s already screaming at me, and I am not going to have this dumb (censored) in my (censored) house. I cursed too. “Get the (censored the F word) out! You are FIRED!” Somehow, I managed to double yell Fired.

She kind of stood there for a minute, so I got up. I am half expecting her to hurt me, because with everything else? Why wouldn’t she? So she storms out after I grab my grabber, which is metal and solid. Yes, I armed myself just to feel safe. Also I was wobbling badly so I used it to balance and moved forward. She moved back and then threw my keys at me. Then Her keys. Then she stormed out the gate and I locked up. My neighbors and caseworker showed. Kat my caseworker, I haven’t told you about her yet but she’s fantastic even if we get the name giggles, was already there with another client and came immediately. My neighbors all checked in on me and have been regularly when Keera doesn’t show. Since she abused them too, I don’t blame them for staying away when she is here.

I have been alone for two days, and I have been great. I get quiet time, instead of incessant texts that show her illiteracy, not just text speak but gibberish to those who KNOW text speak, chain letters etc. Now, she did steal from me, and that last day took some of my morphine. She also happens to owe me money. Will I ever get paid back? I will sue her if I have to, because she signed an IOU for the money. I decided it was worth it. I even put in an addendum that states that if she doesn’t pay by a certain amount of time, then there is interest added on. She signed it and we each have a copy.

I win. I am good right now, and I also know that I really do win. How can I not when I am strong enough to make my way out. I can’t share everything with this space because I mean it when I say there is going to be legal action. I can handle it. She probably can’t. I (censored) Win.!

Why You Can Never Thank Your Caregiver Enough…

Once upon a time, in a land not so far from here, when my legs worked without pain and I could dance I did not need any help in the world. I was blissfully unaware of how much harder things could be. Now, when I am hungry I have to debate if I should risk trying to microwave that bag of popped corn, or if I should hit the buzzer (obtained via Freecycle) and ask Ye Olde Caregiver to feed me. Usually it is the latter. The apartment is not accessible and that means hauling myself out of bed and to the kitchen. By the time popped corn is ready, I am out cold.

Yesterday he wasn’t here and being that I have yet to really buy groceries in the new apartment, I had to fend for myself. It has been six months since that was the case, and at first I was stumped. I couldn’t cook, standing and cooking is too dangerous and the chairs make me burn my arms up, which leads down the road of scars and infection.  In my fridge there were a total of three options. Beans, a rare blend with cheese and some secret but gluten free sauce courtesy of Del Taco, eggs, and a lot of drinks. So I piled the beans on a paper plate, put it in the microwave and had myself a feast.

That got me thinking, and first I asked permission before writing about him on the blog, that my caregiver takes a lot of crap, just by default. When we go out he fends for me, when I cannot reach something or if I am so low on energy that I do not see the predators coming. he is a shoulder to cry on when my pain meds fail to make it all better. He fights for me, he cooks for me, he moves me around the world, and he even helps me get in and out of the shower.

Without him, I would likely be trapped in an abusive environment. Someday I will list all of the abuses I have dealt with, but, this is a joy. Yes he is a paid caregiver, yet he works four times as much as he gets paid for. Not only does the state refuse to offer overtime, but, I cannot seem to get an extension on his hours. He deserves to get paid, as he does duties not listed by most. He even cleans out the dreaded litterbox.

Some people might wonder why a woman with such a dark past would want a male caregiver. I initially was resistant but he is the right man for the job. Not only can I trust him but my personality detecting cats both adore him as well. I have never felt endangered by him, and that is not true of anyone else in my life. If you have a caregiver or a service animal, how much do they do for you that goes unseen?

Sometimes when I am napping and kick the covers off, he tucks me back in without waking me. He feeds my cats, he even helps them get dressed when my hands are too swollen to work the velcro. He finds my missing pills when the faeries hide them (or I lose them). He does anything I ask of him, including running around town picking up furniture via freecycle. Today he has picked up a couch, a bookshelf, and a desk. I now have actual furniture, which he will dust. Yesterday he moved a TV into my room, cleaned up cat barf, and did laundry. Plus his daily chores which include three meals a day, two meals for the cats, and anything else I can dream up.

He even invents things for me. He is a technological wiz, and he enjoys making things. His hobbies include making games, that’s right, video games and woodworking. I have yet to run into anything he cannot fix or improve. He is one of the dearest people I know.

So thank you to all caregivers. Without you the world would be a dreadful place full of hunger, pain, and without the light you bring. May you never be taken for granted.

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