The most difficult part of caring for my mother comes on beautiful days like today. We woke up this morning with crispness. The air carried a snap to it that caused me to pull the covers up a little higher and bury myself a little deeper into bed. When I let the dogs outside, I lingered in the doorway, sniffing autumn. Sunrise takes on a clear golden glow this time of the year, and I long to grab my journal or a novel and swing under the live oak for hours on end.
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Edna Abrams and Koi
September 29, 2011 |
Because my mother can no longer get into and out of her wheelchair without aid, she needs someone close by throughout the day. I never dreamed that her condition would mean sacrificing morning walks to the park or afternoons spent in the gardens. Her limitations restrict my movements as well. During most of the day, we stay in the same room together unless I’m doing housework. Even when I do chores, I swing into whatever room Mom occupies to see if she needs anything—and just to let her know I’m near even if she can’t see me.
My days become a difficult balancing act. On the one hand, it’s similar to having a very young child around—one that needs food to be the right temperature and cut into very small pieces; and one that requires help in bathing, dressing, and toiletry needs. On the other hand, I give care to an adult—and my own parent. I still try to defer to Mom’s desires and requests with respect. As speech becomes more and more difficult for her, expressing her wishes isn’t always easy. If she starts to laugh or cry, I’m at a loss to unravel what she’s asking for or from me.
Each day, Mom begins her bed routine around three in the afternoon. One symptom of her disease is an urgency to eat. She’ll demand meals or snacks in two or three hour intervals and waiting for something to eat proves almost impossible for her. Because Huntington’s Disease affects her ability to swallow, she’s limited in her food choices. I tried a few months ago to rely on frozen meals as a solution to getting her something to eat as quickly as possible. After a week or so, Mom commented that the food tasted horrible and started refusing to eat them. I now prepare huge meals that I know she likes and freeze them in smaller portions.
Once Mom eats her dinner, she insists on brushing her teeth and getting ready for bed. That means we’re pulling on her nightgown by four every afternoon. Since Mom gets up by 4 o’clock or 5 o’clock each morning, she feels exhausted pretty early in the evening because she doesn’t take any naps during the day. Mom will ask for help in getting into bed, get up ten minutes later with a request to go watch television, and repeat the bed-television-bed-bathroom-television-bed cycle until six o’clock. One day, she did this obsessive rotation more than twenty times!
Recently, she’s taken to ringing her service bell just to make certain that she hasn’t been left alone. Today, because she watched Children of the Corn earlier, she rang the bell several more times than usual, finally asking with a devilish grin if we had an ax in the house “just in case.”
Intellectually, I understand Mom’s need to have someone close at hand. My mother’s body traps her in space. Emotionally, it sometimes proves impossible for me to stay within the confines of her disease. Today, I escaped on a quick drive to Sonic once David returned home from running errands we used to do as a family. I keep reminding myself, though, that every day holds beauty. I simply need to look for it.
Copyright 2011 Elizabeth Abrams Chapman
