Musings about a couple frustrating shifts
Oh wow was yesterday night exhausting. I got the guy who takes forever. He’s either so nervous it’s causing cognitive problems or nervous because he knows he has cognitive problems. But he’s so slow and careful he can’t complete all the tasks in a shift. He also couldn’t follow instructions without me repeating them a lot, couldn’t follow instructions with two or more parts, and couldn’t remember simple things over a period if five minutes. It’s just hard to tell whether these things cause his nerves or are caused by his nerves.
I’m really, really good at spotting disabilities in people who help me because I know all the tricks to hiding them. I hope that’s not what I’ve spotted here. I hope he’s just got temporary nerves. Those are much easier to deal with. Otherwise I’ll do everything I can to help come up with ways around things… but if those don’t work, especially on things as important as meds, he’ll have to stop working for me.
I always feel guilty when disability is a reason I have to fire someone, because I know how hard it is to find work. So I always try my best to find adaptations. But sometimes it works really badly to have someone with certain cognitive issues helping me with things I can’t do for the same damn reasons.
But this guy mostly gives me the impression of trying so hard to do things right that he does them five times as bad as he otherwise would. He’s incredibly earnest. The other problem here is that he gives me no downtime during his shift. Every ten minutes, or less, he is in my room making small talk or asking questions or just standing in the doorway staring at me.
That’s exhausting. That’s so exhausting it’s impossible to keep up. I need time to be alone. They’re told this before they come in. Even new people are given so many detailed instructions they rarely have to do this.
And I feel guilty even complaining. Because he’s not mean. He’s not doing this on purpose. He seems as earnestly sweet as I’ve ever seen. But he still is managing to make me so overloaded I can’t even think or function, my pain levels get worse, I get irritable, etc. Plus he can’t even finish the shift. It takes him 15 minutes per medication. Which means a set of 4 meds that should take minutes, takes an hour, after he’s already familiar with them. Which means nothing else in the shift gets done but meds, ever.
And he has trouble with instructions like “Please take a butter pecan Ensure from the left side of the fridge, and a strawberry one from the right.”
As I said, I have trouble with these things too. But there’s a reason I’m not working as a caregiver for people with cognitive disabilities. There’s no amount of adaptation that would make me good at this, at least not the way it has to work with me.
I’m surprisingly good at providing very minimal care for others, but it has to be something they can talk me through. I can do lots of things being talked through that I can’t do myself. So in emergencies (no staff available) I’ve done everything from toileting, dressing, applying medications, to picking little things off the floor, organizing papers, etc. for other disabled people. I can do things for others that for cognitive reasons I can’t do myself — I can’t direct myself the way others can direct me. And I can see someone’s ass to wipe it even if I can’t see mine. Things like that. There’s all kinds of cognitive and sensory and multitasking things that make the difference here.
And I absolutely love the kind of interaction where I can silently help someone else without having to type a single word myself. I can do something physical while they talk to me, and it all works out. It’s very comfortable. My only limitation is fatigue, muscle weakness, and pain, which is why the number of tasks has become more limited. But I’ve always loved that kind of work for some reason, and intimate care doesn’t freak me out or gross me out easily so I don’t impose my disgust or other feelings on other disabled people the way some other untrained people do.
(It’s amazing what disabled people can do for each other in a pinch. Although I’ll never forget the time my friend, also a chair user, overestimated her capabilities and dumped me on my face out of my own wheelchair. We laughed our asses off — there’s a reason she’s no longer allowed to be a paid caregiver, since her physical impairments progressed.)
But I couldn’t do it as easily for someone in a situation where it’s too hard for someone to give basic instructions, or where I couldn’t quickly learn and remember the instructions for future times when they might have trouble. The problem is, I have exactly that kind of communication problems. So I can’t easily give instructions. Often can’t at all. Before I got good case managers, who wrote up detailed instruction sheets, my care was a mess.
I also need long periods of solitude, when people leave me alone and do stuff in the other room,or I get exhausted. Can’t deal with a whole unbroken shift of interaction every 5-15 minutes. It seemed like every time I turned on my Kindle to read an audio book, this guy came in yammering at me without even noticing my headphones. That’s enough to make me as jittery as he seemed to already be.
I don’t know what I’m getting out of typing all this out. It’s just been really hard, even just two shifts of him. I’ll have to talk to my case manager about what to do.
It will either involve:
Dropping him or minimizing his visits.
Drilling him on meds — outside my real shifts — until each clump of meds takes 15 minutes, instead of each pill taking 15 minutes. And teaching him how to handle the equipment — like the little plastic things that let you draw liquid meds into an oral syringe don’t stay on the syringe while I’m trying to squirt it into my mouth.
Finding out if he has actual cognitive or emotional impairments that affect his job. And then seeing whether there’s a way to make the job more accessible, or whether he just can’t do it. (Taking into account my own cognitive and communication impairments.)
Or some combination. But things can’t go on like this. My pain level, in particular, will skyrocket if he keeps interrupting my distractions and solitude. So will overload.
And of course we have to do this all in a way that won’t cause him the kind of paralyzing nervousness he already has.
I’m exhausted just thinking about it.
But this post has gotten me thinking about how weirdly good at this kind of job I could be if I had the physical and mental stamina to pull it off. My friends who are also disabled tell me I’m better at the tasks they’ve had me do than many of their trained, nondisabled staff. I suspect it’s because I’m good with details and I try really hard to get things right because I know what it’s like to have staff get things wrong all the time. Also since I’m a recipient of intimate care, I know how to do it without imposing my emotions on the other person in an uncomfortable way. If I only had the stamina, and could cook and do a few other things like that (yay, uneven skills :-/ ), being a caregiver wouldn’t be a bad job. Unfortunately I’ve only ever been able to do pieces of it, and not every day, but things like that are why I can’t do any job, even in areas my skills are more consistent.
Of course a genuinely good society would value the skills I have, and not pressure me to have ones I don’t, or to have them 100%, all the time. But I live in a pretty bad society to be disabled (and lots of other things) in. Where people’s worth is measured by contribution and contribution is measured by money. Which is terrible and wrong. In a good society whatever any person could contribute would be enough. Oh well. Fuck.
What everyday misuse of power in the DD system can look like.
If I don’t get this written down somewhere I can find it, I’ll forget. And forgetting will be catastrophic. Because I need to do everything I can, to make sure nobody else is subjected to what happened to me Saturday morning.
If you’re not familiar with terminology understand this at least: For developmentally disabled people, staff are not people who are beneath us on a hierarchy. They are people with way more power than we ever have. And when they are bad, as this one is, they can be really scary because they are in control of vital parts of our lives, demand to be in authority at all times, and can make decisions about our lives that outright endanger us. And usually be treated like they’re right and we are wrong or even misbehaving when we object. So onward with that understanding.
Right now there’s nobody to fill that shift so the agency sends subs. They usually range from ehhhhh to very competent. This person fell off the bottom of the range and kept falling for awhile until she reached very bad.
And it wasn’t just her technical competence. It was her ethics. Those were terrible. Not that she set out to harm me. But she set out to establish and maintain control. Very old school developmental disability staff. Could have worked in an institution and changed little. And the results were pretty bad.
It all started when she told me she’s not trained to dispense meds (I’m not surprised, when she thought Ensure was laxative) and that someone else was coming to do it. In itself, not bad. She only notified me, however, when they were an hour late. So I got her to call them. But then she started giving them inaccurate information.
Normally, I can’t speak. So I communicate on a keyboard (currently I mostly use an iPod touch or an iPad running Proloquo2Go). And I use some amount of grunting and gestures, especially in situations where typing is too slow.
When she started giving them inaccurate information, I did what I always do for telephone problems: I started typing while simultaneously making “calling” noises. Hard to explain. But they have an intonation easily read as “Hey I’m trying to get your attention here” that when combined with pointing at an iPad clearly means “Can you look at what I’m trying to say, it’s important, important enough to interrupt a phone call, hell, it probably has to do with the phone call”. The more she ignored me (which she immediately did), the more urgent I sounded.
Until she told them “She’s sitting here yelling at me, don’t know why” and continued her conversation. Her tone and words established to the person on the phone that I’m just one more DD person with bad behavior that is exasperating to deal with, and I heard the person on the phone respond sympathetically — to her. I wasn’t actually yelling but that didn’t matter because her word against mine, and to her I was annoying and might as well have been yelling.
So I finally had to stick what I was writing in front of her face so she’d see that it was relevant information. Remember I can’t just up and say “It’s important to the phone call!” The way most people can. I can only use what I’ve got. This escapes her. She does her best to turn her head away from my writing. Even as I’m frantically miming for her to tell the person on the phone everything I’ve written.
She doesn’t of course. Not yet. She just eventually looks at it and then acts like she’s done. Like it doesn’t contain vital information about the subject of the phone call. She tries to ignore me and does that “I’m making an important phone call on your behalf, you stay out of it” thing.
Finally somehow I got her to read the person on the phone what I wrote. Which does of course turn out to be important — the information is that my meds are time sensitive and I can’t eat until I take them.
So then they get into a conversation with each other — again, not with me. This time it’s about how I can take my meds all by myself if I really need to. Which is completely untrue: My movement disorder makes it far too hard for me to do it without at least some help. It’s actually very complicated and every single separate piece of it is impossible enough without combining it together and making it harder. I can’t even physically do the part with the mortar and pestle. It’s all way too complicated for me, that’s written in my file, and these two women who don’t even know me want me to spontaneously develop an ability I’ve never been able to develop, because it’s convenient to them and that’s all they care about.
So I keep of course trying to tell them it’s impossible. On such short notice, all I can manage is a frantic “uh-uh”. She keeps talking as if I haven’t said anything at all. I don’t remember how I convinced them it was important for them to send a med-trained person anyway, but I did.
(Why would there be any need for them to be med-trained if I had overnight developed the capacity to do it myself? It makes no sense. Other than that if it’s inconvenient for them, whole worlds can change to make it convenient, and my fault for not suddenly displaying this new ability I’ve never had.)
So some guy is set to come in 20 minutes. By which time it’ll be time for even more meds. Whatever. Fine. He’s coming. That’s more than I expected from someone who was more interested in establishing her control over me than ensuring I got important medications on time.
And more control stuff followed. She decided what I’d be interested in. Because she saw a kindle on my bed. A regular kindle. She decided she had the exact same kindle even though hers was a Kindle Fire and I had an e-ink display. Not the same, not even close. So she starts sticking it near my face and showing me pictures of animals endlessly. I only know they’re animals because she says so. My glasses are off. But she decides that I very much enjoy staring at fuzzy blobs I can’t make out, and registers neither my disinterest nor my glasses. I’m completely exhausted and staff are usually informed not to make extra conversation with me unless I want it, because I’m often in pain and need to rest. But she decides what I want to do and she thinks that’s okay. I’ve had so much training to be a passive client that I don’t even consider resisting. Later a friend told me that even this and other seemingly innocent things were controlling behavior on her part. I miss that because I’m so used to it.
So the guy comes to do my meds. He’s familiar to me and I start typing out instructions. Except she gets there first and does the same as before — rushes off to have a conversation with him, without involving me, and does her best to ignore my existence or treat it like inappropriate behavior.
For a person who isn’t med trained, she claims to know an awful lot about my meds. I have three bottles that sit by my bed. They’re for 9 pm, 12 midnight, and 6 am. At 9, it’s too complicated for me to do on my own but they’re kept there so the guy who comes by can do them easily. Then the other two are very simple. Simple enough for me to be able to get them, provided someone calls me and verbally prompts me through it. And someone can come help me if it is too hard some nights. So that’s what those are for — any meds that either always or sometimes occur outside the main staff shifts.
But this woman, with no med training or any other reason to know the intricacies of my med regime, decides she knows all about what the bottles are for. The one marked 9 pm must actually, magically, mean it’s intended for 9 am. And it must be by my bed because I can somehow take them by myself, after all, no matter what I or my instructions or my case manager have to say about the matter.
For reference: My morning meds are complicated. Some of them have to be crushed or dismantled and mixed in pudding. Some of them are liquid and have to be drawn in oral syringes. Some of them I can chew up. Some of them have to be snipped open and squeezed into an indentation on pudding in a spoon. In between most of the parts I have to drink Gatorade. The pudding has to be kept to the minimum amount so my stomach can handle it. And none of this is simple or easy or safe or possible for me to do on my own. All I can do is take the various things when handed to me and then eat or drink them.
So what does she do? She picks up the 9 pm bottle, shakes it a bunch of times, says to the guy “Here’s her nine am meds. But I don’t understand. It’s empty. If it were full, she could do it on her own. But nobody filled it.” And runs around looking for the nonexistent meds to fill the bottle that isn’t what she thinks it is, so that I can just take my meds myself, or something like that.
My meds are in a really prominent location that you can’t miss and this guy knows about. But under her guidance, they are looking under boxes and all these weird places. Finally, after a ton of searching. And me hearing her filling his ears with the biggest load of nonsense about my meds that she could possibly think up, going back again and again to “Why isn’t the 9 am bottle filled, I don’t understand it!” and ignoring every sound I make. Finally they ask me where the meds are and where the instructions are. I tell them. I hear the guy finally getting to work.
Now the woman continues to tell me that “there’s some water somewhere that I need to change”. She’s been telling me this all day. All day I’ve been telling her to forget it. It’s my bipap water and I don’t have the brain left to explain how to prevent it leaking. I can deal with day old water better than a leak. She keeps ignoring me and trying to get me to tell her how to do it.
Oh and while she was on the phone earlier. She’d done something I’ve seen before but is too subtle to prove. My 9 am meds are marked some places as 9:30 meds. It depends on different shifts different days. And I heard her using the discrepancy between what I said and what was on paper to prove to the woman on the other end of the phone that I wasn’t just bad for yelling to her, I was also bad for saying 9 when some piece of paper said 9:30. Staff do that to keep their authority and undermine our credibility but it’s too subtle to prove, meaning it works very well for them.
Another thing she kept saying the whole time, was that someone else would come at the end of her shift. This puzzled me because nobody does. But she kept saying it. If believed, it would have made it impossible for me to get some other meds. It turned out in the end that she’d been reading a chart I have for bowel tracking and deciding that if one time segment ended when her shift ended, then the fact that time went on afterwards meant there was another staff shift there. Rather than that, bowel movements can happen any time of day, so the chart has to cover all times of day. It was as if she was so unwilling to see me as an authority on my own life that she had to puzzle everything out from clues that weren’t even clues, rather than ask me. I had to tell her five times she was wrong before she’d even tell me where she got this bizarre belief, let alone listen to my explanations. Because she had to be the one in charge, in control, and in the know, no matter what I said or did.
So anyway the guy gets both my 9 am meds and my 11/11:30/12 meds (can be any of those times depending on the shift) at the same time. Which is kind of bad, but at least he got there. He’d have done it faster if she wasn’t interfering and trying to get him to ignore me.
After he left she asked me for the fourth time about the water, and I told her for the fourth time not to do it. I finally told her that the instructions don’t cover important safety information. That only I have this information. And that I was having a hard time explaining it so it would be easier to wait for tomorrow.
And then I explained that explaining things is really hard for me ever since I spent 5 weeks delirious in the hospital a few months ago, that it’s been hard to do everything including explain things.
And then her whole manner changed. She suddenly thought it was okay I didn’t explain the water. But somehow I knew it was more than that. In her eyes, I should have been capable of all kinds of things I wasn’t doing. And so when I couldn’t do them, she was blaming me. But now that she had what she thought of as a justified explanation, now it was okay for me not to be able to do… the same things I couldn’t do before I got in the hospital.
Which actually made me mad. Her instructions told her what I needed done for me. That wasn’t enough. She treated me like she was in control, in command, and in authority. And if we have even met before, it was very rarely. She has no claim to those rights. But I could tell — I’ve met people like her before. Not in awhile but I’ve met them. And to them, DD people are always wrong and if we contradict them it’s because we are either wrong or trying to get away with something. And to them we are lazy and therefore say we can’t do things we can, and need to be ignored and forced into doing those things. And even the most incompetent staff have more authority than we do.
Oh and? She never fed me. I got the meds guy to do that. It was easier than explaining to her that Ensure not only isn’t laxative, but is the only way I get any nutrition to speak of since going off solid food. But she never even asked about food. Which was bizarre.
She also kept asking me periodically if I should go to the bathroom. Asking is a weird word for it. It was asking sort of but in a really intense way that reached “demanding” fast.
I’m lucky that my current case manager works hard to find me staff who understand me and treat me right. But for the majority of DD adults in the system, including me in the past, this is what happens every day pretty much. We are surrounded by staff who treat us like they are adults and we are children, only worse, we are defective children who can’t be trusted with power or authority or truthfulness about our own lives. This woman doesn’t even know me and she was absolutely certain she knew all kinds of things about me that contradicted everything I said and everything my case manager sets out in the instruction sheets. She could just make wild guesses and be taken more seriously than anything I said about my own body. The only way she finally believed me was when she heard I’d been in the hospital. But I had trouble with all this before I went in the hospital. She shouldn’t have needed me to have an “excuse” for difficulties I’ve had for years, in some cases forever.
She shouldn’t have been trying to rearrange my abilities in the first place the moment they became inconvenient to her. But she did. Because that’s what people like her do. Imagine you can’t drive, don’t even have a car, and someone tells you “drive me to the store because its inconvenient for me to catch the bus”, and every time you say you can’t drive they act like you’re making it up to be difficult. When they actually made up your ability to drive. It’s exactly like that. Except that they can get sympathy <em>everywhere</em> for dealing with a “difficult client” if you object. Whereas if you tell your story people will tend to identify with staff no matter how outrageous their behavior is.
So yeah. That was my Saturday morning. It threw off my entire day and I still feel like crap.
And for reference. Subs are normally exhausting. But they are not normally like this at all. They usually follow instructions on the papers my case manager gives them. If something’s different, they listen to me. The very occasional one won’t believe me and tries to call people who don’t even know the information to verify whether I’m right. Which is not good, but not anywhere close to as bad as this. What made this woman stand out was that she insisted on keeping all the authority on my life to herself and other staff, while giving me close to none and even that little bit grudgingly. Which included taking ordinary behavior on my part and making it sound like misbehavior. And also included ignoring a good deal of my communication and pretending I wasn’t saying anything at all, and trying to get everyone else to listen to her and not me. All on her first day working for me, because in the minds of people like her <em>simply being staff</em> gives them authority over people they’ve never met. Well, in the minds of people like her, DD people aren’t actually people. We may have human bodies but something important is missing in our minds, therefore their authority over us is justified.
Writing this by the way has given me a nasty headache and worn me out badly. But I had to somehow write it all so I don’t forget. I forget things too easily lately and I can’t afford to forget this before I manage to tell anyone who can at minimum keep this woman away from me. But it’s her other clients I’m worried about. She was too practiced at manipulation for it to be anything but second nature to her, she clearly pulls this crap on people every day. And especially for people with communication problems, she scares me.