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1:32pm February 11, 2013

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.