It’s one thing to do a survey about Alzheimer’s disease: we learn about trends and issues that need our attention. AFA’s latest survey, as I noted in last week’s column, about ‘sandwich caregivers’-folks caring for an older relative with Alzheimer’s disease as well as caring for their own young children to young adults-highlights important data about the responsibilities the younger generation bears when there is Alzheimer’s disease in the family.
Well, it’s quite another thing to go beyond a survey and hear in detail the real stories that are taking place at home. I recently was able to hear a lot of them. AFA just completed our first AFA Teens for Alzheimer’s Awareness Scholarship, a $5,000 scholarship that will be awarded each year to a college-bound student**.** We were inundated with scholarship applications, in which students had to write an essay about the impact of Alzheimer’s disease and what they’ve learned about themselves, their families or their communities in the face of this disease.
In reviewing the essays, I was struck by the number of these 17- and 18-year-olds who have been so directly impacted because their relative is living or has lived in the student’s home. Even more powerful were the few whose very parents have or had the disease. While as a whole the essays we received were compelling, the ones from this group were especially heart-wrenching.
One stands out about a high school senior who has taken on the role of surrogate dad to his younger brother, teaching him about soccer the way his dad had taught him before he was ill. He wrote that he knows the road ahead will be even tougher, as he takes on more financial and other responsibilities at such a young age to help out his mom.
When the 2008 scholarship winner, Holly Elizabeth Hedberg, found out as a tender adolescent that her father had Alzheimer’s disease, the news, as one could imagine, changed her life. I am taking the liberty of quoting from her essay:
Watching my father slip into mindless oblivion with no means to help him was extraordinarily difficult. Not only was the misfortune of losing a great mind and a father enough, but the frustration of being a confused, eleven-year-old child caregiver, while trying to maintain some semblance of a normal life, was miserable.
The most amazing-and hopeful-part of the life-changing experiences that these students wrote about is that they have matured and gained incredible insight as a result. They have learned what is important in life. They have realized, even though in the hardest and emotionally-challenging way, the importance of treating others with respect, especially those with an illness like Alzheimer’s disease, as well as the value of family and support systems, and the power of love. These are the real lessons of life.