Oct. 4th, 2015

aberwyn: (justice)
Sundays are the caregiver's day off. He tends to spend most of them in church. Can't argue with that.  After he leaves, I have sole care of Howard, which is generally okay, though there are always Moments.  At the best, the day is boring. At the worst, it's filled with grief.  Normally it tends toward that "not all that bad" mark on the inner meter.

The worst part about caring for someone you love who has this disease is remembering what they used to be like. At this stage, anyway, the physical work is no heavier than caring for someone with the flu.  On Sunday this time of year there is football on TV, which distracts him for hours at a time. He'll also nap, or sit and look at art books while listening to music.  We have dinner, and at moments we can joke and laugh. He has a few flashes of clarity. At times friends come over for a few hours and break the day up.

But oh my gods, all of you! Seeing what has happened to someone who was once witty, incredibly talented, full of quiet life -- that hurts. He now has trouble using a fork. Like a toddler has trouble. Think about that for a minute.  The very worst thing -- he still knows what is happening to him.  It's the hurting for him, not whatever I may feel, that really hurts.

Other days of the week offer long hours of work and distraction. Not Sundays.

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Katharine B Kerr

April 2017

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