My father died in 1986 after experiencing a mysterious illness that caused involuntary movements, difficulty walking and talking, and, ultimately, a complete psychotic breakdown. An autopsy confirmed that he had Huntington's disease. Eventually my older brother, a doctor in Texas, also developed the disease and died in 2010.
My sister Kelly's first symptoms—slight tremors in her extremities and poor balance—appeared in her early thirties. At that time, we agreed to undergo genetic testing. She tested positive for Huntington's disease and I tested negative, which was heartbreaking for us both.
Life-altering Diagnosis
Kelly's promising life shattered soon after her diagnosis. Her marriage ended in divorce, and she became too weak to work. She subsequently moved in with my husband and me, and I became her primary caregiver.
Her black Labrador, Dallas, also joined our family. My sister, who was 16 years younger than me, was private and reserved and preferred the company of her dog.
At the time, I was also taking care of my young grandchildren. During the summer, we would all pile into the car—Kelly, the two grandkids, Dallas, and I—and drive to an old-fashioned ice cream stand. Invariably, the ice cream from our cones would end up all over the kids' and Kelly's clothes. On the way home, Dallas would lick everyone clean.
Inevitable Decline
Before my sister got sick, I began painting as a pastime, taking workshops and classes on occasion. I didn't continue to pursue it, but after my husband and I moved closer to the Atlantic Ocean and moved my sister into a nearby nursing home, I took it up again. The nursing home had a painting class for residents, and in good weather I'd bring my art equipment and paint while visiting with my sister.
Painting Through Grief
After Kelly died at age 49, I started painting again with renewed energy. At first it was cathartic. I would spend hours in my art studio, painting the emotions I experienced as a caregiver and tapping into the deep, intense moments Kelly and I spent together. I also started selling my paintings and donating a portion of the proceeds to the Huntington's Disease Society of America.
My paintings pay tribute to the Huntington's disease community. Like many caregivers, I don't regret a single day I spent caring for Kelly and being the older sister she needed.