My beautiful sister, Susan Patricof, was diagnosed with early-onset Alzheimer’s at the age of 65. A generous and accomplished philanthropist and advocate for women and children throughout the world, she tirelessly improved the lives and championed the rights of so many.
Susan lived with this illness for 12 years. During those years, I moved from home in Florida back to New York City to be with her and to help my family with her care. I recently learned that I was one of 11 million Americans to do so. My role was to make Susan’s days as pleasant, stimulating, and enjoyable as possible. We took art classes, walks in the park, visited the Botanical Gardens, went for music lessons, and ballet classes, and walked through museums. Susan and I even flew to Prague to visit her son who was making a film.
We set up frequent visits with the children in our family, all of whom were so understanding, gentle, and loving. We had a steady stream of family and friends for meals and other occasions. We even created a disco in the kitchen and played my sister's favorite music to which family and caregivers danced!!
One of my biggest takeaways from the years I spent helping with Susan was realizing that we are so much more than our minds. Even as she began to “lose her words,” I could always find her heart. The glint in her eyes and her body language spoke volumes. I was able to communicate with her in ways that transcended the usual day-to-day talk. It seemed that the more she felt seen, the more she could hold onto herself.
“The more of me you see, the more myself I can be.”
When speaking became increasingly difficult, Susan could still make her presence known. Her smile could light us up and fill a room. Her compassion was palpable. Despite the loss of many abilities, her grace, elegance, and concern for others were still present.
I heard actor Bryan Cranston explain the shift in his understanding of his mother’s experience of Alzheimer’s. He shared that once he was able to let go of the relationship he had with his mother in the past, and instead began to meet her where she was in the present without judgment, everything changed for the better and they forged a new connection.
We were blessed to be able to keep Susan at home. Families can feel so vulnerable when a loved one is diagnosed with Alzheimer’s. The incredibly difficult terrain of loving, caring for and living with someone who has a challenging condition can be overwhelming. I am amazed by individuals and families who are able to support a loved one on their own.
It was a gift to discover CaringKind. The staff and their caregivers helped us navigate the rocky waters of this challenging illness. They were available to answer all our questions, provide resources and meet our varied needs. Ultimately, they provided care for my sister around the clock. They were our angels and guiding lights. Their services were invaluable.
It was so uplifting to witness the level of care they provided for Susan, as well as the entire family. It felt as if we were experiencing the best of humanity. The patience, devotion and respectful approach of the caregivers made all the difference. My eternal thanks to them for being on this journey with us.
The focus of my work has been to translate the science on what babies need for optimal growth in every area of development. Modern technology can now see the impact that various interactions have on different areas of the brain. The findings show that warm, loving, soothing interactions build a baby’s best brain and can actually help the brain grow larger. Just being with a parent stimulates brain connections. I hope this information about the profound and powerful impact of nurturing on babies' development can open the door to research on how nurturing interactions might benefit adults with Alzheimer's.
It is my hope and prayer that we can join forces and continue to move forward together, sharing our stories, and learning from and supporting one another in conquering the growing challenge of Alzheimer’s.
Child Development and Parenting Educator