At the bright and youthful age of 19, Monique DeLorenzo – a current member of Alzheimer’s New Jersey’s Young Professionals Advisory Council (YPAC) – suddenly found herself in a completely unexpected role: caring for her 51 year old mother, Alaine, who had just been diagnosed with early onset dementia. Feeling unprepared, overwhelmed and devastated, Monique and her family were determined to rally together to provide the best care possible for Alaine. For the next 7 years Monique, her aunt Jeannette, Uncle Otto, and younger sister, Kristina, took turns supporting and caring for Alaine at home. Monique’s dad had passed away from leukemia in 2001.
The difficulty managing and handling all of Mom’s daily living activities at home eventually resulted in a family decision to move her to a nearby assisted living residence. As hard as that was for them, seeing Mom continue to enjoy life’s small moments made it easier. “One of my favorite memories at the assisted living was seeing her dance,” recalls Monique. “She had already begun to lose her ability to communicate, but as soon as music came on she would start beaming and jump right up out of her seat to dance. Seeing that was my way of knowing she was still happy, even though she couldn’t tell us.” Alaine passed away from Alzheimer’s in 2015 at the age of 58.
As if dealing with Mom’s death wasn’t enough, Monique and her family received another bit of devastating news several months before Mom passed away: their 91-year old grandmother, Stella, also had Alzheimer’s. The disease could not diminish Grandma Stella’s spunky spirit, but eventually living at home with home health aide assistance and daily visits from Monique and Kristina became unworkable.Grandma Stella was moved into the same assisted living facility that Monique’s mother lived in before she passed – and coincidentally, she was moved into the same room that Monique’s mom had occupied. Grandma Stella died two years later at the age of 93.
Through it all, Monique says she found a blessing in Alzheimer’s New Jersey; being there for her and her family every step of the way. “From the moment of Mom’s diagnosis, Alzheimer’s New Jersey assisted us with resources and helped us begin to focus on planning issues related to finances and managing care. I regularly attended an ALZNJ support group for younger onset caregivers, as the struggles are different than those of later onset caregivers. It was so helpful to meet with people who were facing the same difficulties that I was. My family also began participating in the Walk to Fight Alzheimer’s. The walk is a lighthearted way to bring about awareness for Alzheimer’s, meet other caregivers and help raise funds to support these important programs.”
Since so much of Monique’s early adult life was spent taking care of her mother, she says that she closely identified with the role of caregiver; so much so that after Mom passed away, she experienced not only the loss of her mother, but the loss of feeling she was giving back through her caregiving role. “I did some extensive self-reflection in the months following her death, and realized that the most fulfilling way to replace that part of me that was gone was by getting more involved with helping others impacted by Alzheimer’s disease. I saw joining YPAC as an opportunity to share my story and help those who are struggling with being a caregiver for a loved one with Alzheimer’s.”
As a member of YPAC, Monique is able to provide fellow young adult caregivers with support and encouragement. She stresses the importance of taking care of oneself to avoid ‘caregiver burnout’. Her advice: Surround yourself with supportive friends and family. Don’t be afraid to reach out for help. Connect with Alzheimer’s New Jersey. Join a support group. Search the internet for resources. Find a good Facebook group specifically dedicated to caregivers and their families; they are out there and offer a wealth of information for caregivers, young and old alike.
Recently, Monique and her family learned that her mom’s brother was also diagnosed with early onset Alzheimer’s, causing Monique and her sister to worry about their own genetic risk for early-onset familial Alzheimer’s disease. Monique has already devised an action plan, admirably taking the bull by the horns so she can write her own story, before Alzheimer’s does. “If you’re at risk for developing Alzheimer’s, make sure to create your financial and health plans now,” she advises. “Knowing that I am at risk in the future has prompted me to take the steps necessary now to protect my future family and assets. I would never want my family to go through the pain of making a plan for me. And if you are at risk, make sure to prioritize your health. While Alzheimer’s cannot be cured nor prevented, studies have shown that a healthy diet and regular exercise may help reduce the risk of Alzheimer’s disease.”
To learn more about Alzheimer’s New Jersey’s programs and services and the Young Professional Advisory Council (YPAC), contact ALZNJ at 888-280-6055.