Alzheimer's and Caregiving
A Granddaughter’s Journey: Alzheimer’s is Not Just for The Elderly
In 2003, I fell into caregiving quite accidentally, like most family caregivers. When my father called with a diagnosis of terminal lung cancer, without a second thought (or a single rational one), I hopped a plane back to my hometown in Michigan.
The plan? To “heal the guy” and high-tail it back to L.A. He died nine months later.
My grandfather, his father, was in the later stages of Alzheimer’s, which was verified when he looked directly at my father’s obituary and innocently asked, “Who is that guy?” That was my first genuine experience with this disease, and it was at that moment that I realized I couldn’t leave Mom and Gram.
My grandfather died shortly thereafter. I had the honor of cutting his hair the day before he passed. He spoke his first and last words in weeks that day. “Thank you,” he said, as he gazed up at me.
Directly upon the heals of his death, my grandmother, the fabulous Miss Nora Jo, started to become anxious, forgetful and more paranoid than usual.
She was always really funny and tactless; she was our “Archie Bunker in really great drag!” But eventually, she, too, was diagnosed with Alzheimer’s. My husband and I (along with our two-year-old daughter and his twelve-year-old son) moved her in promptly.
And that’s when life shifted from Michigan to Mars.
We had Gram up to the house every weekend for three years. So we assumed moving her in would feel the same. We were wrong. In The Secret Life of Bees, Sue Monk Kidd writes, "Knowing what’s right and doing it are two entirely different things. And it’s doing the right thing that counts.”
Well, we knew what the right thing was, and then we did it, which people constantly commend us for, but that did not take away from the shocking reality of “the doing.” And we knew from the moment we made that decision, we were in over our heads.
One year (and several anti-depressants into this adventure) later, my mom suggested I write about it. My response to that was, “Mom, I can barely put together a cohesive grocery list. You want me to write a book?!”
But after further “sleepless” contemplation, I realized, this might be a way to involve my gram, and give us both a nice distraction, along with a bit of purpose. The result was, As Nora Jo Fades Away, my second book.
Here are few excerpts:
Gram could only tell the time now by looking at the stove. “395” to her meant five minutes till Oprah! For us it meant, time to throw in the pizza!
If I left the room for any reason, my return was received as a near-reunion. That is, if they weren’t all trailing me. Let me put it to you this way: between my young daughter, Jazz, my Tea Cup Poodle, Beau, and my gram, Miss Nora Jo, I haven’t peed alone since the summer of ’05.
Gram has been referring to my daughter as “that little boy” and hiding perishables in her underwear drawer for months, and then some long-lost relatives pop in for a visit and suddenly she’s as clear and clairvoyant as a damned psychic. I swear, this job has no glory.
Gram came from a generation that didn’t know anything about “me time,” so it’s not just the Alzheimer’s that has her terrified to be alone. Still, it’s tough, and some days the guilt engulfs me. I want to hold her hand through this whole journey but there are days when answering the same questions become unbearable: My husband is Pete; his son is Brock; I’m Jazzy’s mom. It’s January. It’s June. It’s 2009. No, Gram, we’re not going to have a hurricane, that was national news. My husband is Pete; his son is Brock; I’m Jazzy’s mom. It’s January. It’s June. It’s 2009. It’s all so exhausting...
There she was, rocking in her chair to the beat of her tears. It was Christmas Eve. I approached cautiously. “Gram, what’s wrong?”
“I’m just so ashamed. I didn’t know Ricky-- my own grandson. I’m just so ashamed.” She choked out.
“It’s okay. It’s okay.” I consoled. “Like fifty percent of people your age suffer from memory loss.”
“Yeah, but eighty percent of ‘em are already dead!” She retorted.
...And the woman had a point.
Writing made me realize that this journey was not just exhausting, but contained an abundant series of oddly touching moments that were changing us all for the better.
The memoir won the 2010 Paris Book Festival, and then the London and L.A. Book Festivals, as well, which honestly gave me confidence (and some energy) to pursue Alzheimer’s advocacy on a bigger level.
There was so much we were all learning, about ourselves, this disease, the power of compassion, the ability to “let go.” And the book exposed all angles of the illness -- guilt, fear, anger, devastation, but also the foibles and the funnies that were occurring, too.
And then in the Fall of 2010, I went to Maria Shriver's March on Alzheimer’s in Long Beach, California. I came back even more re-energized (and not just ‘cause I got a break)!
I decided that younger generations needed to become familiarized with this disease, and that the best way to “education” that demographic would be to make it feel like entertainment.
So, I started filming us. Gram was engaging and hilarious and incredibly endearing. And she had passed those traits straight down to my daughter, Jazz, her great granddaughter. So I had two great leading ladies who were a near-century apart but saw each other more as sisters.
And many of their “commonalities,” like their love of card games and coloring contests, made our journey manageable. And we were no longer in “over our heads.” The water was often “neck high,” but we had learned to stay afloat. We still weren’t perfect, but we were pulling it off.
Caregiving is going to be inevitable for many. My objective and my passion is to create mass awareness until we find a cure. There are hidden joys in every aspect of life, even when illness strikes. \
Knowledge is power. Compassion is key. Love and humor can conquer anything. And we are all much stronger than we think.
My grandmother and my daughter taught me that life is about perspective. My documentary, “14 DAYS with Alzheimer’s,” has become mine.
In 2003, Lisa Cerasoli (then an actor - Series Regular, General Hospital) met with Ken Atchity about her screenplay. He said, “Sounds like a novel.” She started writing while simultaneously leaving for Michigan to care for her Dad. On the Brink of Bliss & Insanity - published by Five Star Publications - was the result. It won The London & L.A. Book Festivals. As Nora Jo Fades Away, evolved when Lisa & family took in her gram upon diagnosis of Alzheimer’s. It won The 2010 Paris Book Festival, then nabbed a beautiful foreword from Leeza Gibbons. It’s optioned by RicheProductions. They are currently developing the series. Lisa refers her documentary, “14 DAYS with Alzheimer’s,” as “the sequel” to her memoir. It was completed in August of 2011 and has been touring ever since.