Family Stories – Sibling 1

Family Story From an Adult Child

When my mom was nearly first diagnosed we went to an event at my church when she and Dad visited me in Denver. I remember the pastor was giving his sermon, but my mom wasn’t following along. She had found the lithograph of the Tree of Life in the hymnal and was tracing it with her right hand: concentrating and relaxed. I was surprised that noticing this private moment gave me a lot of confidence that she would survive the journey and still be the same person afterwards. Even though she wasn’t able to follow the sermon, she could still find ways to show gratitude and find wonder. My dad and Jennifer have helped Mom survive her journey without looking for a physical cure, but for emotional healing instead. Here are some examples of how they have cared for her.

When she was still in Stage 1 with her Alz, Mom and Dad took advantage of their retirement and traveled. They walked Nepal, rafted the Grand Canyon, and explored Italy. Later, they enjoyed the photographs and memories which remain present in their home through photographs and textiles.

Dad helped Mom stay strong – physically and social-emotionally – when she was in Stage 2 of the disease. Her strength came from nudges to believe in herself and still share with family. She was able to participate with family by reading aloud childrens’ books like “The Old Lady Who Named Things,” by Cynthia Rylant, and “The Napping House”. Mom’s reading created shared rhythm, peace, and wonder.. Jennifer was a great model of how to interact with a sense of humor and calm during this time. Mom memorized a prayer about living a good life that she read with Jennifer every day during this time.

Dad knows he and Mom can’t go at this alone. Jennifer has been an amazing in-home caretaker. She encouraged me to do the emotional work to keep connected to Mom. She gives Dad the respite he needs. She is absolutely amazing with Mom and has been a mentor to all of us.

As the disease progresses, Dad and Jennifer are still with her in the journey. Instead of looking for a quick fix, he does the day-in day-out work of caretaking with great love and patience. Getting Up and making Mom breakfast, readying her pills, reading, tracking her symptoms, being flexible with the day and leaning into Mom’s rhythms at every step of the day are the work he performs. Jennifer gives him the respite he deserves during this time.