Angela J. - A Family Crisis
My mother, Antonia, and three of her four female siblings were victims of Alzheimer's. I will be forever grateful to VITAS for providing sensitive and supportive end-stage care not only for my mother but also to me as her caregiver. Perhaps the most emotionally wrenching experience for the child of a victim of Alzheimer's is when your mother or father looks at you and asks, "Who are you?" No child should ever have to experience that, particularly when you are so overburdened with the care of your parent. Some of us have taken early-retirement or shortened our work week to care for our parent thus creating a triple burden: emotional, physical and economic.
My mother died in 2003 at the age of 85, and, as predicted by her geriatric specialist in Puerto Rico, one of her three children fell victim to the same disease. Several years after my mother's death, I lost contact with my baby brother who was a trailer truck driver in the U.S. In 2011, he appeared at the Newark YMCA. His physical appearance told the story of someone who had become homeless. Thankfully, he had a tattered piece of paper with my Florida telephone number and the YMCA staff called me. It was a member of the Y staff who first alerted me to the possibility that Antonio might be a victim of Alzheimer's. After being interviewed by Social Security appointed psychiatrists, Antonio was declared disable because of early-onset Alzheimer's. Because he is a wanderer and has gotten lost several times, Antonio was transferred, upon the recommendation of his doctor, from an assisted living facility to a 24/7 lock-down facility where he will be safe.
My baby brother will celebrate his 65th birthday on 17 February 2015. At 76 years of age, and diagnosed with Parkinson's Disease, I'm too old to carry the burden of being his caregiver and there is no other family member who can assume that responsibility. I call Antonio every week and send him gifts on special occasions. He still knows who I am, but I know that the day will come when Antonio will not remember who I am. I dread that day as I also dread, given my family history, becoming a victim of Alzheimer's. There is a sadness of spirit that has taken over my life. . . no one should ever feel that way.
Angela Jorge-Quinones, Ph.D.