My sisters and I woke up early that day. We went to the family room to watch television while our parents slept. Suddenly, our father arrived in a barely controlled panic.
He sat, not too far away, but he didn’t talk to us. He focused on putting on his shoes and socks as if it required painful concentration. He left the house.
He still hadn’t spoken. He still hadn’t even looked up.
Our shared, stunned silence only broke when my mother appeared. She explained that dad’s mother had fallen down the stairs of her house and was in the hospital.
We visited Grammie soon after her release, looking for bumps and bruises and finding none. Instead, we found ourselves wondering why she was asking us the same question again, or searching for our names, or telling us the end of a story she had never started.
She could still play the same songs on the piano. She still dressed in twinsets of soft pastel and worsted wool, and she still tucked Kleenex up her left sleeve. She still got her hair done and went to church, both on a weekly basis.
But she still wasn’t Grammie.
Or she was, but she was Grammie with Alzheimer’s disease.
Before my grandmother was diagnosed, I’d never heard of Alzheimer’s. I thought that when grandparents got sick, it was with cancer, or a heart attack, or some other mystery of old age. I also misunderstood her deterioration to have been caused by her fall; it was only years later that I learned her fall was caused by confusion triggered by the early stages of Alzheimer’s.
My sisters, cousins and I became young experts on the disease, at least as it manifested in Grammie. We’d sit politely with her as she watched “Bonanza,” a TV series from the 1960s. We’d hold her hand and let her tell us, as she always told us, that our warm hand meant we had a warm heart. We’d nod and smile when she picked up a decades-old conversation as if we were the sister with whom she’d had the original conversation. If we were ever out riding bikes and found Grammie taking a walk by herself, we knew to treat it as an emergency.
Papa’s life was transformed, too. Soon enough, he shared his house with live-in nurses, but he was Grammie’s primary caregiver, never off the clock. He vacationed once a year for less than a week before returning to her. She died in July 1995. He died three months later.
Today, more than 5 million people in the United States suffer from Alzheimer’s. There is no cure. The best medicines available can only slow the worsening of the symptoms.
Take a hop and a skip from my Irish family tree to the one rooted right next door, and you find Josephine Marr. The warm, witty matriarch of a large family, her spitfire has slowly dimmed. She has Alzheimer’s.
There is no confusion that part of her legacy will be advancing the study and treatment of her own disease. Together with her husband, John, and their family, she has established an Alzheimer’s research fund through Brigham and Women’s Hospital in Boston. The fund will allow doctors to continue their efforts to intervene in the earliest stages of the disease.
John and Josephine’s five children, 14 grandchildren, and extended family have already added to the endowment. Many are running in the Maine Marathon on Oct. 4 in its – and her – honor. Just shy of their $75,000 goal, they are crossing one finish line with their feet while searching for another one with their wallets, and their hope.
They hope fewer of us will look at our spouse of six decades and wonder who he is. That fewer of us will lose the ability to read. That fewer of us will forget how to tie our shoes.
I will be among the runners on Oct. 4, thinking of Grammie, pulling for Josephine, and hoping this won’t be a race someone has to run for me some day.
For more information on the Josephine and John Marr Alzheimer’s Research Fund, or to make a donation, contact Ginny Fuller at firstname.lastname@example.org.