Posted by Leah Levine
When I found out that my grandmother had Alzheimer's disease, I was too young to understand. In my ten years of life, I had learned that ‘disease' meant ‘sick,' and sickness was cured by a few simple things: medicine, soup, and rest. My parents gently explained that these usually reliable methods wouldn't help my grandmother; she wasn't going to get better.
Alzheimer's disease is the only leading cause of death in the United States that cannot be prevented, cured, or even slowed (alz.org). It causes memory loss, confusion, and difficulty functioning. This progressive disease leads to a complete loss of ability to respond and eventually death.
I was not told these details then, but I learned over the years as I watched my grandmother slowly lose her ability to walk, feed herself, and even speak. When she moved to a facility, visits were scary at first; I hung back with my little sister and observed from a distance. My grandmother had been a math teacher, teaching middle and high school students after earning a graduate degree in mathematics, a rare accomplishment for a woman at the time. Now her abilities to add, subtract, and multiply, along with her interests in cooking, knitting, and community service, were eclipsed by this terrible disease. My grandmother loved babies and children and took enormous joy in her grandchildren. On one visit, as I hugged her goodbye, her eyes suddenly focused on me, and I heard her whisper "Pussycat…so… so beautiful… love… love you." And for a second, however brief, there was a small glimmer of recognition in her eyes.
Since then, I have been determined to find a way to help. In high school, I volunteered at an assisted living facility dedicated to those with the disease, reading stories and running activities. Though the residents needed help walking and remembering where their rooms were, they had incredible stories and life advice to offer me each week.
Last spring, I volunteered at the first JF&CS Memory Café through a community service club at Brandeis University. The café gives people with dementia the chance to relax, drink coffee, and converse in a situation free of the pressure of everyday life coping with the disease.
My grandmother passed away a few months ago. With Alzheimer's disease, you lose your loved ones twice. Although we lost her slowly to the disease's symptoms years ago, this was different. Even though she couldn't come to my bat mitzvah or high school graduation, make her special brownies for me and my sister, or even talk on the phone, I always counted on her presence in our lives. As my family went through this loss, it only strengthened my resolve to help.
I am now active in a newly formed club at my university, Students to End Alzheimer's Disease (SEAD), I have started a fundraiser in my grandmother's honor, and I continue volunteering at the Memory Café. I believe that the most important way to help people struggling with this disease is to let them know they are not alone. The Memory Café has given me the opportunity to hear wonderful life stories from people coping with the symptoms of Alzheimer's and dementia. It also helps me remember the wonderful and vibrant woman my grandmother was.