On Thursday, June 28, I found my way to a small church in Elmhurst, Illinois. I was unsure about what to expect after I stepped foot into this building; however, I felt hopeful. Once a month on Thursday mornings, a community gathering called Without Warning (WW) takes place at St. Peter’s Church in Elmhurst. WW is an event designed for individuals with younger onset Alzheimer’s disease. Younger onset Alzheimer’s disease is when an individual receives a diagnosis of Alzheimer’s when they are younger than 65 years of age. WW is not limited to individuals diagnosed with this disease, but their families and caregivers are also invited to participate.
During my visit, I met and listened to a social worker, Susan Frick, from the Rush Alzheimer’s Disease Center. After her welcoming remarks, five or six groups split up and went into separate rooms. These groups are designed for individuals who identify as either early, mid, or late stage Alzheimer’s. There are even groups for families and caregivers and a group focused on music. Within the different groups, individuals were encouraged to share their experiences with Alzheimer’s disease and family members and caregivers reflected on how their own lives have changed due to the disease. WW participants spoke about their daily lives, how they are not always able to do the things they used to do, but also try new things they have never tried before.
I listened to these personal experiences with open ears, teary eyes, and I left with an open heart. An experience both heartbreaking and eye-opening, I left St. Peter’s that day reflecting on my own life while realizing how blessed I am. Although many themes erupted that day, the two that stood out the most were: 1) these individuals are often not able to do the things that they once used to love doing, and 2) on the more positive side, many of the people took up a new hobby that they would have never expected taking on hadn’t they been diagnosed with Alzheimer’s disease. Things such as gardening, reading from a Kindle, and fixing up bikes and donating them to people in need are just a few examples of the creative outlets these individuals have found refuge in while dealing with something as harrowing as Alzheimer’s. It is within these common themes that the leaders at WW can look back at to check in on all of the WW participants’ statuses and well-being. As sharing during WW – both by leaders and participants – is so crucial and beneficial, the leaders may bring needed attention to any positive or worrisome issues and take necessary steps to either positively build upon a behavior or address a concern in a safe space.
We often take for granted things such as our memory and mobility. It is moments such as my time with WW that encourage me to try and see the positives in life’s various trials. Going into this experience, I really did not have a strong grasp about what Alzheimer’s is and isn’t. I do believe, however, that listening to people’s personal experiences with the disease is a lot more educating than reading it out of a textbook. Groups like WW are designed so that people who are affected by Alzheimer’s disease, specifically younger onset, realize that they are not alone. I am more than thankful that I was able to attend and participate, and I am looking forward to being back for this month’s meeting.