Monday, March 16, 2009


Obviously, caregiving isn't my only role. But it is the role that's most challenging for me. I think I'm naturally inclined to be a bit lazy and selfish, and the needs of Skip often conflict with those tendencies.

Multiple sclerosis is a progressive disease. Skip has the kind that doesn't come and go (relapsing-remitting), instead hers just keeps coming (chronic progressive). So, each bit of capability lost is gone forever. I'll talk about the progression more in the future.

Skip's current state is that she can't walk, is very weak and experiences fatigue alarmingly quickly. Her hands work, but not very well, so if she doesn't concentrate on holding a spoon or fork, she often drops it. They do work well enough to maneuver the joystick on her wheelchair, though; she's very good at that. While MS can affect cognitive functioning, she is free of any brain impairments.

As a caregiver, I'm on the job all day, every day. We do have an aide (who, for Skip, is very much a friend) who works about 15 hours a week, during which I get a break. Otherwise, it's Cranky on the spot 24 x 7.

Caregiving isn't just about taking care of the other person physically, though that's important. It is also doing everything around the house that would otherwise be shared in the couple. There's no one to share the laundry, food prep and cleanup with, for example. And, it also involves being your partner's "pair of hands" for things that are important to her but which you'd never do yourself. For example, Skip is into birds, squirrels and other creatures that frequent birdfeeders. She can't fill the feeders herself, so this is my job. Because it's a priority for her, but not for me, this can often be a source of tension and disagreement for us.

Another component of caregiving is problem-solving. As Skip has gone further downhill over the years, we've needed to find new solutions and ways of doing things. So, in the larger sense, we keep having to face new problems and find ways to handle them. In the micro sense, we occasionally have problems that hit because of a fall or other temporary issue that needs to be solved right then and there.

I am a damn good caregiver. But I get cranky.

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