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| Koi has the right idea! |
I took for granted the
little pleasures of life. Don’t we all? Before my mother’s disease invaded our
daily routine, I spent hours out in the back yard watering the flowers. I’d sit
with journal and pen or the latest best seller and piddle endlessly on my tree
swing. I’d chat with my neighbors for half an hour or more by the mailbox or
over the fence. I could jump into the car whenever I wanted, run to the store
or a mall, or grab a bite to eat. In the evenings, I’d watch television, listen
to music, or talk on the phone with friends without a single interruption. If a
friend called and invited me out, I didn’t think twice about heading out the
door. If someone dropped in unexpectedly, I knew I could have a block of time
to visit without stopping to see to someone else’s needs.
Huntington’s Disease
robs the entire family of so many little pleasures. We are now my mother’s legs
and often her hands. She’s still able to feed herself, but pulling the covers
up when she’s chilled at night or fixing her pillow “just right” challenges her
now. Taking a walk around the block requires a major pep rally to innervate Mom
into the desire to leave the house. Her weekly trips to favorite restaurants
have diminished to a once-a-month outing. If she doesn’t feel up to strain of a
car trip, she may forego the excursion and opt for us to bring take-out to her.
Recently, we’ve seen more personality changes in Mom. When her insomnia hits,
she angers easily. During these endless nights, if one of us doesn’t use a
cheerful tone of voice with a smile on our face, she’ll go into a tirade about
us “neglecting” her even though we’ve stayed up with her hour after hour. Her
brain, desperate for rest, misfires into obsessive compulsive actions,
paranoia, and pure meanness. I refuse to feel guilty because I’ve lost my
temper at two in the morning and yelled at my mother to go to sleep.
During the last three
years I taught, I often went into tirades at misbehaving students. Sometimes, I
may have “acted” with more anger than I really felt, but I’ll admit that my
temper flared frequently. Since I’ve left that horrible teaching situation, I’ve
regained my sense of balance. I rarely lose my temper. On days where Mom’s
needs seem endless, I mutter “patience, patience, patience” and I remind myself
that it’s easier to be selfless for someone you love.
I find myself
resenting the loss of my time—and my freedom to do what I want, when I want. I
do not resent my mother, but I hate the disease that takes, and takes, and
takes. So some days I try to venture out into my gardens, and I take a moment to appreciate the beauty and little pleasures so HD doesn't win.
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| One rose out back |
Copyright 2012 Elizabeth Abrams Chapman
