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My Day Job

March 19, 2009

My day job is not your traditional 9-to-5. My boss doesn’t mind if I loaf around and play games online. As long as I’m there when he needs me, that’s all that matters. I’m a direct care worker. For the duration of my shift, I’m charged with helping another human being get through his day.

My boss is a college student who has Duchenne Muscular Dystrophy. He’s at the point now where all he has is his mind, his voice, and minimal use of his hands, and so needs assistance with everything 24 hours a day. And when I say everything, I do mean everything. His schedule and mine have changed from semester to semester, so over the past few years I personally have ended up doing pretty much everything for him. A somewhat typical, if rather amalgamated, day goes something like this:

I come to his dorm room in the morning, relieving the overnight aide. First I remove his BiPAP mask, which he wears at night to help with his sleep apnea. Then I remove his hand braces, which he wears at night to help slow down the contractures in his hands, sit him up momentarily, and administer his morning medication. Next I change his shirt, which is made difficult by the stiffness in his shoulders and elbows, and do part of his physical therapy, various range-of-motion exercises, to help slow down the contractures in his shoulders, wrists, fingers, knees, and feet.

After that, I finish getting him dressed, using a drawsheet draped across his bed to help turn him onto his sides, and get him into the bathroom, which involves securing him into a special chair that positions over the toilet. When that business is finished, I strap him into his electric wheelchair, where I wash and shave his face and comb his hair. One indispensible piece of equipment for moving him from one spot to another is the pivot, which is a real back-saver!

By this time, several hours have passed since I’ve arrived and we’re ready for lunch. So we go to the “Residential Dining Hall,” which is just a big buffet-style cafeteria. At each station, we stop and he tells me if he wants a particular item, which I dish onto his plate. When we finally set down at a table, I adjust his posture so that he’s sitting forward, and I feed him in between grabbing bites of my own food. When we’re done, I walk him to class, adjust his posture so that he’s sitting forward, and plant myself as unobtrusively as possible nearby, in case he needs his glasses or his posture adjusted, or in case papers need to exchange hands. I generally bring a book to pass the time, although if the lecture is interesting enough I’ll pay attention. When needed, other students make copies of their notes for him, which is good news for me because his classes tend to be a bit beyond me.

After class it’s back to the dorm, where I do the rest of his physical therapy, which involves range-of-motion exercises for his neck, and then put on his leg braces so that he can be strapped into a contraption that will let him stand, weight-bearing, for about 45 minutes. Then it’s time for dinner, which is much like lunch, except there’s more time to sit and socialize with friends. After dinner most days, we return to his dorm room where I set him up in front of his computer, adjust his posture so that he’s sitting forward, put his hand on his trackball, and enter standby mode, in which I can loaf around and play games online. Other days, however, I go home with him so he can take a bath. This is a two-person job, and since the agency I work through won’t cover more than one person working at a time, his father provides the second pair of hands it takes to hold him steady while the I shampoo him and wash his back.

Sounds like a lot, doesn’t it? To be sure, some days are longer and more intense than others. Some blocks of time are go-go-go, while others are pretty free, where all I have to do is occasionally help him scratch an itch. It’s certainly not a line of work I ever thought I’d get into, but before he was my boss, he was my friend. When one of his caregivers had to quit unexpectedly, he had to fill the vacancy immediately. Knowing I needed a job, he asked me. To this day, I often describe my job as “being paid to hang out with my friend.” Even the less savory tasks are easier to deal with because of our rapport. He’s almost like the brother I never had.

One Comment leave one →
  1. March 20, 2009 9:44 pm

    This blog’s great!! Thanks :).

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