At appropriate times past, I have broken my strict rule not to interject my personal life stories into this column. With that said, anything to do with the pursuit of an Alzheimer’s disease cure and/or care compels me to share private family experience. Alzheimer’s devastated my talented, intelligent mother at the early age of 65 and it ripped a giant hole in the heart of the family.
My late sister Susan saw it coming years earlier. The signs were all too familiar. Forgetfulness, short-term memory failure while displaying crystal clear long-term memory. Then it progressed to getting lost driving in neighborhoods she had lived in for decades. Meanwhile, I refused to face it.
“It’s just an age thing; she’ll bounce back,” I said.
But she did not bounce back. It only got worse.
I was forced to face the truth one Saturday afternoon visiting Mother in Palm Springs. She wanted to go to the movies. The theater close by was only featuring one film, a Sylvester Stallone epic and I do not remember the title. Not exactly Mother’s choice, but that was it so we went.
Ten minutes into the film she began to cry. First her tears were soft and silent. She dabbed her checks with a Kleenex. Shortly thereafter the tears flowed like a river.
“What’s wrong?” I asked, worried and confused. She hesitated, then turned to me and answered, “This movie is a disgrace. It makes me so sad. Hollywood once made some fine films. The world has changed.”
She wasn’t wrong. But her reaction scared me. I now knew something was wrong. We got up and left the theater and I drove back to the house. She asked me to put the top down on the convertible car.
“I want to feel the wind in my hair,” she said. She never wanted to feel the wind in her hair, or anywhere.
We arrived back at the house and she left me, going outside to the pool, taking a chair and proceeding to communicate with the birds on a wire for the remainder of the day.
Difficult times lay ahead. Many more poignant stories were to follow. She passed away several years later, ironically not from Alzheimer’s, yet it had taken her life sometime earlier. The final year was unbearable.
So many people share similar stories.
The statistics are alarming.
Dr. Joshua Grill, co-director of UCI MIND proclaims that Alzheimer’s is a “growing epidemic.”
At a recent annual UCI MIND event held in Newport Beach at Balboa Bay Resort fronted by esteemed national Alzheimer’s spokeswoman and celebrated journalist Maria Shriver, Grill commented: “The number of people living with Alzheimer’s in the U.S. is expected to triple by 2050. This is the sixth leading cause of death in the United States.”
Interestingly, and unknown to many, guest speaker Shriver brought up a shocking statistic in her address.
“Two out of three Americans living with Alzheimer’s disease are women. By 2050, 16 million people in the U.S. and 135 million people worldwide will have fallen victim to this disease, and many more family members and friends will suffer alongside those diagnosed — mostly women.”
Shriver comes to the cause with her own personal family connection.
Her experience propelled the former California first lady to become a national advocate for Alzheimer’s research.
Shriver was invited by UCI MIND (Institute for Memory Impairments and Neurological Disorders) to share her passion. She continued: “Women are at the epicenter of the Alzheimer’s crisis. That’s why we must be at the heart of the situation.”
The Newport Beach event, attended by UCI dignitaries including Pramad Khargonekar, Carl Cotman, Leslie Thompson, Malcolm Dick, Mathew Blurton-Jones and UCI MIND co-directors Dean Frank La Ferla and Joshua Grill was a platform for announcing a new research initiative in partnership with the Women’s Alzheimer Movement (WAM) founded by Shriver.
Based on a collaborative fundraising approach by both organizations, the partnership will make research dollars available to UCI scientists investigating the role of sex and gender in Alzheimer’s disease.
Local activists supporting the UCI MIND gala at Balboa Bay Resort included event co-chairs Robert and Virginia Naeve, supported by a committee including Jaqueline Du Pont, Alison Beaumont Hoeven, Diane Mondini, Kathleen Olson, Marla Noel, Joseph Pryor and Costa Mesa’s Dee Vollendorff.
Appropriately the gathering was billed as A December To Remember, raising a net $275,000 for Alzheimer’s research.
For information on Maria Shriver’s WAM, visit thewomensalzheimersmovement.org.
B.W. COOK is editor of the Bay Window, the official publication of the Balboa Bay Club in Newport Beach.