On a recent sun-kissed day, the coastal beach hotel hosted what might have been billed as just another pricey luncheon raising money for yet one more charity. But amidst thousands of bubbles in sparkling champagne and generous pours of crisp Chardonnay this event will be remembered as a star-studded event; not for a room filled with dignitaries or Hollywood stars but for the truly unsung hero: the caregiver.
Nationally, there are ten million unpaid caregivers to patients with Alzheimer’s disease. Men, women and young adults who manage their own lives while caring for a parent, spouse, or family member; wrestling with guilt, denial, exhaustion and solitude.
On this day, caregivers shared their stories and we were reminded of the heartbreak and pain that Alzheimer’s disease causes. We heard from a caregiver whose husband is struck by the disease. At what is supposed to be one of life’s happiest moments, the youngest son is preparing to head off to college… only dad doesn’t know where this boy is going and barely knows who this handsome young man is. We learned about the son caring for his dad whose heart breaks knowing that “grandpa” doesn’t understand that the beautiful young girls at his feet are his grandchildren. Or there is the high school boy who spent his entire summer giving full-time care to grandpa, with devotion and love the teen witnesses the strong man he worships quickly slipping away.
Then she walked into a banquet hall filled with over 400 women and didn’t miss a beat. In a sea of ladies wearing party dresses, she sauntered on stage wearing a tight black leather outfit. It’s impossible to believe she is approaching her 80th birthday. She is OLYMPIA. Most people know and recognize Olympia the actress; after today’s event many more would love her for her advocacy for Alzheimer’s disease.
Olympia Dukakis met up with the perplexing face of Alzheimer’s disease when her mother was diagnosed with it more than twenty years ago. She watched her mother change. Forgetfulness and humor would turn to bouts of anger, loss of appetite and periods of confusion. Like many caregivers, Olympia made the promise to never to put “ma” in a home. She could never allow her mother be one of those people who sit in a wheelchair in the hallway of an institution.
But her mother’s safety became an issue, brother Apollo became consumed with self-denial, and soon Olympia made that journey with her mother to a facility. She spoke of the pain and guilt of brief visits where moments of light would peek through.
“Wheeling ma outside for fresh air would bring new life to her. She’d look at the sun and say ‘Look, the sun loves me.'” Toward the end of her mother’s life Ms. Dukakis witnessed a brief moment of clarity.
On this visit her mother spoke, ‘Oh, Olympia, I’ve been looking everywhere for you.’ “This was after almost two years of not knowing me at all, and we talked as honestly in that 20 minutes as I have talked to any human being. I think it was her goodbye, because two weeks after that she passed.”
With that Ms.Dukakis sweetly clasped her hand and imitated her mother’s last “bye bye bye bye.”
Alzheimer’s disease is like that.