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?

Nope.

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.

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1 Comment

  1. It’s awful that you keep running into problems with your caretakers. I hope the current solution works better and holds out.

    Even aside from whatever citywide problems you might have, once bugs (whether roaches or something else such as ants or whatever) get into a particular apartment building they rapidly spread out from whatever apartment they invaded first to all the others, including the ones that are completely clean. Basically the whole building has to be treated to keep the population down. My current apartment has a regular treatment schedule to keep the bug issue under control and it seems to help–there were bugs when my partner and I first moved in (in ’98) but these days we rarely see them.


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