It’s Friday night and after heading out for the evening, waiting in line, and showing my ID, I have officially entered the one club I never expected to have a membership. No, I am not gaining access to the hottest new speakeasy to enjoy artisanal cocktails crafted by Charleston’s finest mixologist. This is a club of an entirely different nature, one that many of my fellow xennials and millennials may find themselves completely unprepared to join in the near future.
In 2014, my exclusive night club was the 24-hour “Memory Care” wing of an assisted living facility where my late grandmother Myra spent her last years living with Alzheimer’s. During that year, I joined the ranks of other “members” out there quietly and heartbreakingly living a double life as a caregiver to a loved one with a degenerative disease. Every disease presents its own cruel twist and in the case of Alzheimer’s it is the disease’s relentlessness in the pursuit to steal not only memories and self sufficiency but with it personality and relationships. Over the last decade of her life, the family watched helplessly as the passionate woman nicknamed the “pitbull in lipstick” began to lose her connection to all those people and things that had brought her a lifetime of joy and love. Alongside all degenerative disease caregivers, I became another cheerleader for a fighter guaranteed to lose, shouting support at the top of my lungs until the last call was made.
Like many families, the disease snuck up on us and we initially did not see the symptoms for what they were. What is a normal amount to lose your sense of direction? To misplace things? This is even harder to determine when the person in question, like my grandmother, is intelligent, strong willed, and independent because they are able to compensate for the decline in function. Living with the diagnosis of Alzheimer’s is also challenging because the person will forget they have a disease and are unable to recognize their flawed decision making, often requiring specialized housing. Even while living in Memory Care, we chose to provide ongoing caregiving for my grandmother Myra. It’s an unnatural experience at 30 to become the parent to a loved one in their 80s who just thinks of you as a kind stranger. Our relationship evolved as I let go of her former identity and I fell in love with the new woman who enjoyed slow walks to the duck pond and thanked me each night when I tucked her in. Despite the years spent grieving the loss of my grandmother while she was still alive, her eventual death hit me incredibly hard as I lost both the woman I grew up with and the sweet dependent woman she had become.
Caregivers are immersed in their loved one’s disease, becoming experts and passionate advocates. As the grandchild of someone with Alzheimer’s, I also developed an insatiable appetite for resources, in part driven by fear of sharing her fate. The most shocking thing about Alzheimer’s is that despite being the sixth leading cause of death in the U.S., there are huge gaps in research, awareness, and education. For example, diet, exercise, and chemical exposure have only recently been linked to the disease, opening up incredible opportunities to reduce or delay the onset with a change in lifestyle and environment. Considering early detection can save a person an estimated half a million dollars in long-term care costs, this is not just about quality of life but financial security. With 5.7 million Americans currently living with the disease and one more added every 65 seconds, there is no time to waste, especially in South Carolina, a state claiming America’s highest Alzheimer’s mortality rate. Without a medical breakthrough, the number of people age 65+ with Alzheimer’s will triple by 2050. For those of you in your 20s and 30s, this means we are all three times more likely to have Alzheimer’s and many will gain the entry to the club of caring for our parents, especially females. Women account for two-thirds of Americans living with Alzheimer’s and two-thirds of caregivers. Imagine instead of quietly awaiting that fate, our generation — filled with innovative thinkers, creative minds, and passionate leaders — chose to use their talent to research, educate, and advocate alongside those fighting this disease?
June is Alzheimer’s Awareness Month, so join me in learning about the disease, diagnosis, research, and public policy. Visit Alz.org, like @alzsc on Facebook, sign-up for the SC Walk or Ride to #ENDALZ.