2006 "Give a Caregiver a Break" GRAND PRIZE WINNER
"Double Duty"
Photography by Fran Collin
My caregiving experience has been one of “double duty.”
Mom and Dad had four children; I was third in line. My older brother, Joey, was born with Down Syndrome. He always lived at home with my parents, and after Dad died 24 years ago, Mom cared for Joey all alone. But three years ago, while already dealing with her diabetes and high blood pressure, Mom had a pacemaker implanted.
In April of 2005, Mom took ill. After two failed attempts to perform an angioplasty with stent placement, it was medically necessary for her to undergo a triple-bypass operation.
At the same time Mom took ill, Joey began to experience “episodes.” When Mom was released from the hospital after surgery, she was told, “You cannot go home to Joey. Taking care of his many needs will kill you; the stress is too great.”
Being the daughter who lived only 30 minutes away from Mom—and already handling the lion’s share of her care and medical necessities—I was informed that Joey would have to be “placed” somewhere. Just the thought of that was Mom’s worst nightmare come true! My saint of a husband vowed that Joe would never go to a “home,” so we moved him into our house immediately.
That’s when my “double duty” began. On a daily basis, Joey had to be bathed, groomed and washed after bowel movements. Mom, totally alone in her home, also needed to be bathed and have dressings changed, meals prepared, laundry washed and more.
At Joey’s first doctor’s appointment after moving into our home, I was informed that he had severe aortic stenosis. The doctor told us that surgery was not an option, and that Joey had less than two years to live!
I have a full-time job as a special-education teaching assistant, and I must work to keep the health benefits. So I would rise early and tend to my brother’s needs. He was in an Easter Seals program, so he would be picked up when I went to work. Later, they’d drop him off at my school. He and I would run home, where I’d ask my husband to feed himself and Joey so I could go help my mother.
At least seven times over the next seven months, Mom would be back in the hospital with congestive heart failure. I often lived on emergency-room vending-machine cuisine. This scenario went on until November. As Mom struggled to survive, Joey went downhill. He had attacks in April, September, October and November. Last December 17, he had his final attack and passed away. We laid him to rest a few days before his beloved Christmas day.
During those months, my life was swallowed up in disease, doctors, discouragement and death. Mom remains ill, but some of the pressure is released since Joey’s passing. I miss the intimate moments Joe and I shared while I cared for him. He’d kiss my hand, and his eyes sparkled with love and appreciation for my caregiving. His eyes shared his heart’s appreciation.
Marian Colton, Brick, NJ
Winner of $5,000 worth of respite care
from Home Instead Senior Care