The memories of our grandmothers – and the urgent need to protect our own parents from this disease – propelled our family to join the Alzheimer’s Association in Walk to End Alzheimer’s. We walk because it is our greatest hope that, in the near future, no one else will have to experience this disease the way our family has.
Our family grew up on Staten Island, New York. Surrounded by grandparents, aunts, uncles and cousins, we were lucky to live no more than a few blocks away from any given family member. This also meant that both of our grandmothers were very often at the dinner table with us.
When Grandma and Nanny were both diagnosed with Alzheimer’s and dementia and their presence at those meals became the after-dinner trip to the nursing home, our family began to experience what so many describe as “the long goodbye.”
For a few years after Nanny and Grandma entered nursing homes, we were able to bring them home for Sunday dinners, holidays, birthdays and anniversaries. We were just happy to have them close to us, spending precious moments together. But as the years went on and the disease progressed in each of them, removing Nanny and Grandma from their familiar day-to-day routine became detrimental to their well-being. It became increasingly clear that the women we loved and missed were with us physically, but perhaps no longer in spirit.
We did not despair, however. We shifted gears. Every celebration now began or ended with a visit to the nursing home.
Some of our most precious moments – both joyful and heartbreaking – happened there. Kate told Nanny about her engagement and saw a glimmer of recognition in her eyes; Paula sat with our mother as Grandma took her last breath; and our entire family surrounded our Nanny as she left us behind.
It has been almost three years since we lost our Grandma and under a year since we lost our Nanny.
While we felt the pain of their loss deeply, no one felt it more acutely than our parents, aunts and uncles. We will never forget their daily dedication to their mothers, the profound sadness when their parent could no longer speak their name or the unbelievable joy when our Grandma or Nanny said a few words, held their hand and knew who they were.
It felt like our family had reached the end our long goodbye, but then we began to worry about the future, to the time when our parents, once the caregivers, might become the next diagnosed. That is why we walk. We walk for hope and for one more happy memory. We walk for Nanny and Grandma, our parents and millions of other families. We walk so that we will see a day without Alzheimer’s.
About the Authors: Kate Satin, Paula Caruselle and Paul Caruselle are siblings who lost their maternal grandmother Betty (“Grandma”) and paternal grandmother Anna Maria (“Nanny”) to Alzheimer’s disease. Along with Kate’s husband Russell, they are walking in Walk to End Alzheimer’s in Manhattan on October 28.