The moment in time that is etched into my memory is a photograph I took when my grandpa spent time at our house. He's wearing a green-colored plaid shirt with a matching flat cap and an ear-to-ear grin. His arms are outstretched, showing the funny man he was. He's sitting in the corner chair with this perfect expression that makes me happy when I re-imagine him there today. He was always the one to set the mood with his easy-going personality, silly noises and Italian heritage. Other very special moments include our family trip with Pa Joe to a Laguna Beach gelato shop, a trip to the soccer field together, family meals around Thanksgiving and Christmastime, the countless times my grandma told me how much he loved the scrapbook I made for him and the memory of our last moments together. His dedication to family, his generous spirit and his joy in the tiny pleasures of life are what drive me. He drives me to find meaningful ways to help those who are in his position today and who will be in the future. If he was around today, I'm sure Pa Joe would be rooting for an End to Alzheimer's and for the creation of innovative treatments, products and services to help individuals and their families. He is dearly missed in my family.
Prior to Pa Joe's diagnosis with Alzheimer's, the disease wasn't even on my radar. Today, it's something I think about everyday, a topic for which I sought professional education and training for and and the niche where I see myself serving others, at the intersection of my personal passion and what I feel I'm best at.
My grandma who we call Nana Sue also inspired me in her devotion to providing the best care for Pa Joe. Nana Sue was my grandpa's primary caregiver. She made sure that Pa Joe was happy and that he was well taken care of. She made sure that we all could spend quality time together and approached the entire situation with empathy and compassion. Back then, I didn't really understand what was involved in being a family caregiver, but now I know all the ins-and-outs, except for being a full-time caregiver myself. I learned in my training that caregiving can be an extremely rewarding and special experience with a loved one. However, I also learned that social isolation, depression and poor health can result and contribute to caregiver burnout. The USC Family Caregiver Support Center taught me the importance of self-care activities, one of the key elements of their "Caregiver Checklist."
Pa Joe's journey through this disease led me to some very meaningful moments in my volunteer work and in my career with individuals with Alzheimer's disease.
My first experiences were as a volunteer at the Alzheimer's Activity Center in 2010 and later again in 2012. The most meaningful moments were the countless times I witnessed clients "coming alive" to music, singing along even with communication difficulties, dancing Irish jigs and crying in response to the music. Some of my fondest memories in life are from co-facilitating this group-singing program that elicited these reactions and positive changes in mood. I cherish the memory of learning "Danny Boy" and then performing it with a client of the day care program. I can't adequately explain the power of that experience. I remember the special moments when clients "introduced" me to the members of their large families via scrapbooks they carried with them. I also remember the tender care the staff provided, as well as the happy inter-generational gatherings with the adjacent preschool. From taking walks together, to sunbathing, to cutting strawberries, every moment with the clients was wonderful. These experiences drive me daily because I know that even with a diagnosis of Alzheimer's, people CAN and DO THRIVE. People with Alzheimer's have taught me about what's important in life. I've deduced that love, family and human compassion are at the heart of why we are here. I believe we are here to support and have positive impacts on others. What was also hammered home in my experience and training is that there is no treatment available to prevent, slow or cure Alzheimer's disease, so research needs to be prioritized.
More recently in my USC graduate school training, I've had the privilege of meeting people with Alzheimer's disease who live in residential care settings. My newest drivers are from these remarkable people who I had the pleasure of knowing. I've seen the power of life-story informed interactions and the power of name, touch, music and respect for preferences and routine. I am driven by these residents' families and members of the care team who have become champions for the #EndAlz movement by walking in their communities and by advocating on the state and national stages. I am also moved by the increasing attention that Alzheimer's is getting in the media, for example, in Lisa Genova's novel, "Still Alice," that was adapted to the big screen. One of my favorite clips from the film is when Lydia Howland (Kristen Stewart) asks her mom, Alice Howland (Julianne Moore) what it's like to have early-onset Alzheimer's. Founded by Seth and Laura Rogen, Hilarity for Charity is an organization that aims to educate millennials about Alzheimer's disease and spur their interest in advocacy and fundraising for the cause. Through advocacy, Alzheimer's disease is starting to get the attention it deserves from government representatives who can have great impacts when bills like the HOPE for Alzheimer's Act are put into motion for this 114th Congress.
All in all, I am motivated by my family and the people I've met along this journey and the experiences I've shared with them. To me, the best part about living is sharing it with other people. Alzheimer's disease is heart-breaking, but we can all be strong and lean on each other in the long fight to defeat it. I think the key to remember is that we're never in this alone. Family, friends and neighbors can help caregivers have some time for themselves to see the doctor, go shopping, visit a friend or complete a chore. They can provide different types of support that are vital to staying healthy. I know not everyone has people in their life they can count on, but in this journey with Alzheimer's or with a loved one with the disease, there are caring individuals who are happy to help.