Still Alice & The Necessity of Alzheimer's Advocacy

by Brittney Williams

Last week, I sat alone in a back row in the Michigan Theater, watching a special screening of Still Alice that was put together by the Alzheimer’s Association. Still Alice, which is based on a book of the same name, tells the story of a Columbia professor who is diagnosed with early-onset Alzheimer’s at the age of 50. When I found out about the movie about a year ago, I remember being elated to hear that finally, a story focusing on early-onset Alzheimer’s was being told. Often, Alzheimer’s is shown in media as a disease that only affects older people, or sometimes not even as a disease at all, but as a normal part of the later stages of aging, which it is not. My experience—and the experiences of millions of others, who have loved ones diagnosed at younger ages than usual—tells a very different story. My mother was 49 when diagnosed, and 54 when she passed away in 2013.

I watched, often with tear-filled eyes, as the movie powerfully, and very realistically showed the progression of the disease. When Alice gets lost while running, I was reminded of a time shortly prior to my mother’s diagnosis, when she was driving my siblings to the dentist and suddenly forgot where she was. In a panic, she began speeding, trying to get to somewhere she recognized, only to be pulled over by an officer. Thankfully, he was able to see that she was clearly disoriented, and my siblings helped him contact my father. A few weeks later, my mother had to surrender her driver’s license. Still Alice was filled with similar all-too-familiar moments; reminders of the disease’s progression, and the toll that caregiving takes.

But what hit me hardest were not the scenes with which I could relate because of experience, but one that reminded me of an experience I will never have. Alice’s oldest daughter—whose name and face she eventually struggles to remember—is pregnant for a large portion of the film, and delivers her babies while Alice is still lucid enough to come and hold them. I had to cover my mouth to stifle sobbing as I thought about the fact that my children will never know my mother, even as newborns. They will never hear her voice, see her face, or feel her warm touch; she will merely be a figment of stories and photographs.

Though my experience with caregiving, and eventually loss, was painful, it also created a passion for advocacy. Since 2009, I’ve been involved with the work of the Alzheimer’s Association in various capacities, most recently as an Advocacy Chair for a young professionals group, and as a member of the Alzheimer’s Congressional Team for the 12th District. My goal is to make sure that a treatment, and eventually, a cure, for Alzheimer’s is found, so that no more families have to go through what mine did. I think that doing this work is the best way to honor my mother’s legacy.

Brittney Williams is a member of Young Professional Alzheimer's Advocates of Washtenaw County (YPAAW). She plans to travel to Washington, DC for the Alzheimer's Association's Advocacy Forum, which will take place March 23-25, 2015. This is an expensive endeavor, and she needs your help! She is currently raising funds for her trip on youcaring.com. The fundraising goal includes event registration, transportation, food and lodging, and the estimated fees that will be deducted from the total amount donated.

To help Brittney reach her fundraising goal and continue the important work of Alzheimer's Advocacy, donate here!

 
Posted on February 25, 2015 .