Occasionally, my mother cannot sleep at night. This means no one gets to sleep. We keep a baby monitor in her room, so as she spins restlessly in her bed, we hear her clearly.
When Mom’s symptoms of Huntington’s disease first began, she’d uncontrollably repeat, “Oh man, oh man, oh man,” whenever she experienced a little stress or anxiety. I don’t think she even knew she’d go through this verbal litany. As my mother’s agitation grew, so did the urgency of her words. “Oh man” altered into “God damn! God damn! God damn!” We had to explain this hierarchy of declarations to her aids when she resided in assisted living because one aid grew rude and abrupt at Mom’s utterances. For someone as gentle natured as my mother, her “God damn!” meant she’d hit her limit in some way. Now, as Mom slips into the last stages of her disease, her ability to carry on conversations comes and goes. Some days, she’ll chat constantly, her words easy for me to understand. Other days, she barely utters a syllable throughout the day, except for her two phrases, my easy gauge of her distress levels.
Last night, Mom somehow turned around her hours. She asked for a fried egg around six o’clock. She demanded that we change her out of her nightgown and dress her in one of her outfits about an hour later. By 9:30, David asked her if she knew it was nighttime, not morning. With her mind playing this time trick, she struggled to get up to watch her television shows until two in the morning. Whenever I went back to her bedroom, she’d complain that she was cold as she kicked off her covers; she’d whine that she was tired as she grabbed my hands to pull her from the bed.
“Mom, you need to go to sleep!” received angry pouts from her at first. One time when I tried to straighten her covers and get her back into bed, she managed to slap me across the face.
This is Huntington’s disease.
I remember my mother spanking me only once in my life. I saw her raise her hand once and strike my sister when her teenaged tongue sliced out a rude comment. I know my brother received a spanking for hiding his progress reports and low grades in his middle school locker. Physical punishment did not occur in our household. I severed a relationship with a brother-in-law who left bruises on my arms from trying to pull me out of a car. My parents raised me that if someone raises a hand to you in anger, get out of that relationship. Period.
So Mom’s striking out at me reveals one more “loss” that we’ve endured through this battle against this monster. We tiptoed around each other today with neither one of us speaking about her eruption of anger and frustration. I’d like to think that this won’t happen again, but I’ve read enough about the later stages of Huntington’s to know that as the brain changes her personality will change, too.
Every day when I pick up my journal, I follow the date by writing my two main goals for survival: Stay in Today, Patience. I know, though, that no matter how much I try to smooth out the challenges of my mother’s days (or nights), her disease is winning. I often fail in my efforts to stay focused on the moment. I definitely fail when it comes to patience when our struggle unwinds throughout the day and into the night.
Copyright 2012 Elizabeth Abrams Chapman