File under: easier said than done

In light of the comments on this Jez post about the humiliating experience a dying woman and her daughter had at the hands of the TSA, I thought I should post something I wrote when my mom was still alive, before hospice care started, when I was the one helping her with activities of daily life like toileting and bathing. I wrote this to try to describe to my friends why I was thoroughly exhausted even though my mom slept 2/3 of the day. I am trying to imagine doing all this in an airport bathroom after being groped by the TSA.

The thing about Parkinson’s, at least how I understand it, is that it makes everything so SLOW. Not only does my mom move very slowly when she moves, but it takes forever to get from the idea to move to the actual motion. Half the time, she’ll decide to move, and then by the time her body starts cooperating, she has forgotten what she was supposed to do. Just to get out of the bedroom involves sitting up, scooting to the edge of the bed, standing up, walking to the bathroom, walking *into* the bathroom, turning around to face away from the toilet, pulling pants down, sitting down, using the toilet, cleaning yourself, changing adult underwear (which itself involves taking off shoes and pants and then putting them on again), standing up, pulling pants up, walking out of the bathroom, walking to the bed, turning to sit down on the bed, sitting down, changing pants, changing shirts, combing hair, standing up again, walking to the door, walking down the hallway, and then sitting in the chair in the living room. What most of us can do in ten minutes before our brains have even switched on involves as much effort as anything my mom does in a day, and she can only keep one task in mind at a time, so that there’s no way, for instance, that she could remember to get a new pair of undies *before* going into the bathroom. So I have a hand in every aspect of every part of this. We both end up worn out, and all we’ve done is get out of bed.

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