Caregivers Needing Care 2: On the rocky road

This post is a continuation of an earlier post about the needs of caregivers of individuals with disabilities, the elderly, and others.

Jim and I are both professors, with very flexible schedules that don't require us to be in an office every single day. We are both not teaching this summer, so we have a lot more time to spend with Charlie and we're both very glad about that.

On the other hand, it's been a lot of sandwich generation feel around here, with my mother-in-law seriously ill and now in a nursing home. We have been visiting her, with Jim and I going to see her one at a time, and Charlie waiting in the car. Over the weekend and last night, he came in with us and stood warily by the door, only slowly coming in and pressing his palms over his ears, to (I suspect) ward off the sounds of the machines and monitors beeping softly. My mother-in-law did not see Charlie; she could not, she said to Jim, see anything, staring blankly up I tried to move things around the room so it'd look more tidy while Jim sat down on a walker (though her legs and feet were entirely motionless) and bent over to talk to her. Charlie, big-eyed, still hovered within the door. The TV mounted on the ceiling flickered and flashed with blue light and images.

Charlie eventually ventured into the room; he and I went out after a few minutes. What could be done.....all that could be done, it seems, would be to sit with her and tell her she is loved. Were things very different, it seems that the best thing to do would be to make up a bed for her in our living room so she'd have Jim nearby and so she'd be surrounded by our home's daily hubbub (though that word is a bit too quaint to describe the occasional havoc our domicile can be graced with). My mother-in-law has been slipping back in time: A few weeks ago, she was convinced her current address was the house Jim spent his teenage years in; last night, she kept talking about Hasbrouck Heights (one of the places she grew up in). She was sure I live in Hackensack.

Marianne Szalega in the New York Times quoted earlier voiced her worries both about her and her sister's current situation---taking care of her elderly parents full-time----and about who will take care of them when they are old. I certainly share both of her concerns. Charlie will need care throughout his life, including when he is old and when Jim and I are old. Lately, Charlie's needed extra care and attention and, again, we've been extra-glad we have the time off in the summer to spend with him.

And yet. On Sunday morning, he found what he wanted in the refrigerator, put it on a plate, microwaved and ate it, and put his dishes in the sink. He waited very patiently, pacing the grass in front of the nursing home, while Jim sat with his mother---I think Charlie knows full well, this is a very grave situation, and he has been quiet and peaceful at a time when that is very much needed. And, as I was doing laps at the YMCA pool while Charlie dove under the water (in the deep end) and out into the air and down again, I thought about how I never would have learned how to swim had I not needed to chase my fast-moving boy in other swimming pools in other years.

Charlie taught me to get over my fear of the deep end; how, literally, to swim and not to sink. It's a rocky road with many ditches for him and us right now, but I still have faith that somehow he'll show us how to keep our heads up. That, as much as we need to take care of him, he's helping us find a way out and through.