|Edna Abrams May 2011|
Caregiving quickly becomes a shared family responsibility. It didn’t take me long to realize I’d rely upon my husband, David, to survive each day. As Mom’s Huntington’s Disease progresses, she can do less and less for herself. Imagine sitting on your living room couch, unable to even move yourself into a wheelchair. The limited mobility Mom had at Christmas time, to transfer on her own from couch to wheelchair, wheelchair to another room, and from there to the bed, ebbed away by this spring. As her weakness increases, so does her anxiety at being left alone in a room. Her body’s refusal to move at command means she needs assistance in almost everything. She can still feed herself, but her food must be pureed because the muscles she uses for chewing and swallowing are compromised. She can still lift her lidded cup up and sip out of a straw, she can still brush her teeth, and she can still enjoy her nightly bowls of ice cream. Huntington’s Disease robs Mom of her ability to communicate. We try to phrase our questions with “yes” or “no” responses, or we offer short phrases to her that she can repeat with her choice. “Would you like music or quiet?” Repeating the key words again, “Music? Quiet?” We learn to give long enough wait time for her to form the answer she wants. Mom’s very lucid. She recalled effortlessly that I’d left a bottle of Visine in a drawer in her sitting room coffee table back in November. She knows and remembers people, places and events. However, to function within her limitations, she obsessively maintains structure and routine to her day. The clock doesn’t guide this routine, but the sequence must be obsessively maintained.
|Edna and Charles Abrams|
Mom’s day begins as early as four in the morning. Some days I get up with her, many days David takes her to the restroom, wheels her in to watch television in her sitting room or our family room. She’ll stay up for only a little while, anywhere from ten minutes to half-an-hour. Then she’ll ring her bell and ask to go back to bed. Once there, (if we’re lucky) she’ll snooze for another hour. If she’s restless, we’ll hear her spinning in her bed until she rings her bell again. By 5:30, she’s up for the day. Over the last month, David’s takes over in the mornings. He’ll give Mom her medications, fix her breakfast, bathe and dress her all before he leaves for work at eight. Then my ten hour shift begins. During the first months, I had more freedom to do things like water the yard or read a book, but now Mom wants me pretty much in the same room with her most of the day. I write in fits and spurts—a sentence here, a paragraph there, scribbled lines or ideas in a spiral notebook. It’s a good thing I type at lightning speed! Mom’s day starts to unwind around 5 o’clock. She’ll do a similar pattern as she does in the morning where she’ll rest for half an hour, get up for an hour, go back down until finally she’s settled for the evening. David often takes over with this up and down round to give me a break.
|Edna Abrams and Paula Browning|
Our other break comes from my son, Paul. When he rented a house in the neighborhood, I thought I’d only call on him in emergencies. However, by midweek I’m often short tempered and needing to escape the house, even if it’s just to do errands like grocery shopping. Paul takes over on those days. We’ve gotten into the habit of calling it “Grammy sitting.” Paul’s high energy and ability to entertain my mother mean she looks forward to his visits. He brings her news and commentary. His humor and patience provide Mom with the break she needs from me, too. Paul’s weekly relief service is supplemented by monthly visits from my brother and sister. They’ve alternated weekends, so that provides two weekends each month that we get to sleep a little late! I cannot predict how long our lives will revolve around caregiving, but I do know that it would be impossible to face without our family pulling together.
Copyright 2011 Elizabeth Abrams Chapman