I don’t want to keep score, but subtle changes remind me daily of my mother’s constant battle with Huntington’s disease. She isn’t winning.
Huntington’s robs Mom of her ability to speak. At first, we noticed slight differences, but now she struggles to answer a yes or no response. In frustration, she’ll mutter, over and over again, “I can’t. . . I can’t. . . I can’t” when I ask a simple question. I begin the guesswork. “Do you want to get up? Do you want to watch TV? Do you need to go to the bathroom? Do you want to eat?” I no longer ask her what she wants for her meals and instead select from the foods I know she can and will eat.
Huntington’s throws Mom back into her uncontrolled dance. For many months, her chorea subsided into a symptom that moved into her day in the late afternoon and vanished within an hour. Now the movements have returned with more force, they last longer, and they burn her calories at an alarming rate. I try to pump food into her as often as possible, but she’s dropping weight. Her hands and fingers look gnarled. Her knees protrude over calves that hang with loose flesh. When I help Mom get into her bed, my hands skim across her hips, and I now feel her bones.
Huntington’s forces Mom into rigidity. A couple of weeks ago, Mom sat at the table and fed herself each meal. Now I sit next to her on the couch and spoon her meals into her. She’s able to manipulate some foods, though, on her own. I make certain she has brownies, cookies, or small pieces of chocolate in her tin. That way she can nibble on tidbits all day long. I realized the other day that her ability to suck on her straw diminishes after a few minutes. Now I help hold the lidded mug so her arm and hand won’t fatigue. I watch as her tongue flounders for control as it tires. I started adding a thickener to her liquids yesterday to help with her swallowing. I’ve begun a new routine to make certain Mom’s not getting dehydrated. I have drinks in both her bedroom and the family room. Whenever she gets into her wheelchair, I make her take a few sips. Before she gets to move out of her wheelchair, she takes a few more swigs.
Huntington’s saps Mom’s energy. Mom rarely takes naps. Usually, she’s up by six AM for her medication and a Boost. Up until a couple of weeks ago, she’d eat her first breakfast by eight o’clock and request something else to eat every two hours. Now, Mom returns to bed after she takes her medications and sleeps for another hour or two. She has started taking naps in the early afternoon. I think she’s storing up energy for all of the thrashing she’ll do when her chorea hits by three.
And so over the past few weeks, Huntington’s disease hit more runs and outscored Mom. This gradual diminishment may continue for a very long time. If I alter my playing strategy, Mom may regain some of her weight. With luck, she’ll follow her usual pattern and recover some of her losses.
Copyright 2012 Elizabeth Abrams Chapman