I'll never forget the moment when I realized my grandmother no longer knew who I was. It was a beautiful day in March. I was proudly showing my Grandmother my report card. Suddenly she turned to me and asked: "Excuse me, where is your family?" I looked at her, not quite believing what I had heard. "You are my family," I said. "You’re my Grandmother. You're right here." For every child of a parent or grandparent with Alzheimer's, that reality is a devastating one. As I looked at the confusion in her eyes I could only imagine the struggle she was experiencing.
Currently, there are over 15 million unpaid family caregivers in the United States for Alzheimer’s disease. The National Alliance for Caregiving found that 30% of these family caregivers had children or grandchildren under the age of 18 living at home. Alzheimer’s disease impacts the entire family unit emotionally, psychologically and financially. Often times, the younger members of the family can feel so lost and alone at a crucial time in their life.
Through my family’s experience with Alzheimer’s, I found a lack of resources for children and young adults. This realization led me to founding my own organization, "Legacy of Love", which provides support groups for children who have a loved one with Alzheimer’s disease. The program is based in Tampa and now expanding across Florida.
I understand the heartbreaking ordeal of watching your loved one deteriorate in spirit, health and dignity. My family cared for my Grandmother for 7 years as I was growing from a child into a young woman. During that time, I found that journaling about times spent with my Grandmother helped to ease the rigorous burden of caregiving. I meet with children of all ages to create legacy books for their loved one in this same fashion. Each book is a collection of photos, mementos and stories about the Alzheimer’s patient. The aim of the support group is to renew patience, hope and love, while enabling important dialogue about the disease. One family stated, “With special insight derived from her own Grandmother’s struggle with Alzheimer's, Olivia offers a touching and optimistic program that encourages awareness, acceptance, and dialogue among family. It helped our children to cope with the challenges of this disease in a healthy way.”
"Legacy of Love" has shown to:
- Raise awareness among young adults and the general public about Alzheimer’s disease.
- Provide education, mentoring, counseling and support to young family members.
- Enable children and teens to share feelings and experiences with other children and experts.
- Refer children, teens and their family members to additional programs and support services.
- Enhance bonds between Alzheimer’ patients and family members
My grandmother passed away after a long struggle with Alzheimer’s, but her story does not end there. It continues through every legacy book, which is a vehicle for awareness, support and education. Through "Legacy of Love" I have seen the memories that people of all ages hold dearest and they don't stem from material possessions. Regardless of age, education or societal status, people want to remember their connections to others. This has made me think of my own memories, especially the ones I cling onto so tightly. Memories of a child's smile while creating her grandfather's legacy book, words of thanks from a family dealing with Alzheimer's, the look in the eyes of my own grandmother when a photo helped her remember. These moments reaffirm why we must continue to provide support to Alzheimer's patients and their families.
At times this disease can seem daunting, but I can assure you that no step towards action is too small or insignificant. Whether it is sharing your personal story, donating a few dollars to research or taking the time to read this post. The culmination of these individual steps toward awareness and education is a societal leap towards a cure.