EVENT DATE: Nov 01, 2015
Dear family and friends,
On November 1, 2015, I’ll be running the New York City Marathon to raise awareness and funds for the Alzheimer’s Association in honor of my brother, Michael, who was diagnosed with early on-set Alzheimer’s at the age of 46, three years ago. The devastating impact of this disease has been relentless and incredibly, horribly, fast. Three years later and he doesn’t speak…he can’t work or drive and can barely walk on his own. My brother should be in the prime of his life, watching his son and daughter grow into adulthood, enjoying time with his wife of 19 years. Instead, my sister-in-law and family has taken on the role of his caretaker 24/7 with grace and compassion while his children, aged 13 and 23, must constantly adjust to a new normal as the disease progresses.
Every day I try and remember the sound of my brother’s voice and his laughter… my sisters and I want to fill pages and record hours of memories for his children so they know everything about their dad that they should have had a lifetime to learn…as they already know he loves his them and would do anything for them…what a patient and talented carpenter he is… a steadfast Liverpool fan his whole life…how he loves AC/DC, Irish music and going to live concerts.
For myself and my sisters, I think the most painful part of his caretaking is seeing him with our mother. While I am in awe at her strength; watching her take care of him again as if he was a child…trying always to protect his dignity as she tries to help him eat or change his clothes…the heavy sadness and the unfairness of her suffering is sometimes overwhelming. As a parent myself, I imagine the depths of her grief tending to her ill child but never see it as she deals with this heartbreak with encompassing kindness, common sense and a deep faith that helps all of us keep going.
I worry constantly he is in pain and no one is aware of it because he can no longer form words to speak for himself. The disease has made him vulnerable...it is so painful to see him like this and yet I feel so protective, because he doesn’t understand what is happening any more. I remember visiting early on when he was first diagnosed how he would suddenly look fearful, like a child afraid of a stranger, and trying to reassure him that it was okay, I was his brother, he was safe with me. Understanding his fear and searching for ways to reassure him changed our relationship forever…and it broke my heart that I truly knew then that things for my brother would never be the same.
Being so far from home and wishing I could be there more for Michael and his family has made me even more determined to help find a cure for this disease that has devastated so many families. I hope that you will join me in advancing research that will someday discover a cure for Alzheimer’s.
All donations are tax deductible in the US.