This week, I returned from visiting my Papou, what we Greeks call our grandfathers. He is 86 years old, 5-feet nothing in height and weighs in at exactly 103 pounds. But his health is rapidly failing.
This former circuit county judge possessed the most wit, charisma and self-deprecating humor of anyone I’ve ever known. His memory was acute and formidable. He was a walking encyclopedia of law. He could recite every detail, no matter how small, of nearly each case he presided over during his 30-year career.
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Samantha Holden, MD, director of the Memory Disorders Clinic at the CU Anschutz Alzheimer's and Cognition Center, provides guidance on how to care for your loved one with Alzheimer's. |
Four years ago, he was diagnosed with Alzheimer’s disease and everything changed. Now his mind shuffles between confusion and lucidity.
I came face to face with the ravages of the disease, how it robs us of what matters most – our minds. I witnessed firsthand the difficulties in caring for these patients, and the guilt we carry as caregivers. So, I sought out experts in Alzheimer’s who could offer advice on how best to take care of those we love most at the worst times of their lives. And how to take care of ourselves in the process.
But first a little about my Papou and Yiayia. It was all about Friday.
Me with my Yiayia and Papou at our annual trip to Casa Ybel Resort in Sanibel, Fla. |
Growing up, Friday nights were sacred. Friday nights meant bliss, laughter and supervised freedom. Friday nights meant time spent with my grandparents. Their retro-inspired, Florida beach home tucked into a corner of a small island in a small town was exactly where I belonged.
Those nights were a safe ritual. Papou would browse the local Blockbuster for the most recent Disney releases for us to watch together.
On sunny Florida days, we played kickball in the back yard or swam in the pool. On rainy Florida days, my Yiayia and I danced among the puddles in parking lots. We collected tadpoles along the way, bringing them back home then watching them grow and hop away one day.
When night fell, a queen-sized bed sheet engulfed me, then held me tight like a hammock. “Rock-a-Bye-Baby,” my grandparents would sing, swinging me gently back and forth.
As the Fox and the Hound played, I cuddled with my Yiayia while Papou made spaghetti. Pillsbury chocolate chip cookies were up next. Then, the ultimate Floridian game: alligator. I excitedly awaited my fate while my Yiaya and Papou dimmed the lights, snarling and crawling on the floor mimicking the most terrifying of all Florida beasts. With a swift lunge, I found myself flung off their bed onto the floor as they dragged me into their walk-in closet known as “the swamp.”
We did this every Friday night but each one felt brand new. My little cousin once left Disney World as a child because he realized it was Friday. Like me, he knew where he belonged.
When I became a teenager, my Yiayia was diagnosed with cervical cancer. Our own Happiest Place on Earth lost more of its magic each week. Cancer took her life moments after she turned 62 at her home in bed with my Papou. I was 15 years old.
Now I’m 30. Nearly two years ago, I left the steamy Florida swamp for the Colorado mountains for a new adventure, a new promising career. My Papou encouraged me to find my own path, proud as ever. After missing two Christmases and only visiting once in March 2021 due to COVID-19, I didn’t realize how much of my Papou I would lose during that time. I now feel so selfish.
When I visited him at home this week, he was lying in the same bed, the same side where my Yiayia died so many years ago.
“I’m here, Papou,” I said. “It’s Jewel.”
He opened his eyes. Tears ran down his face and mine. He took my hand and held it firmly.
“Thank God,” he said. “Thank God.”
Like so many years before, we were back in his home on this tiny island. Only now I was taking care of him. I opened the vault of VHS tapes, wiping away the dust. We watched Pocahontas, a tribute to my Yiayia. As my dad talked throughout the movie, Papou urged quiet, "Let's hear the plot, son." I giggled.
When nights fell, we sat on his couch, hand-in-hand, swaying to the music of Sam Cooke, Billie Holiday, Queen. We sang Mary Hopkin's, "Those Were the Days." We turned the pages of photo albums together, reminiscing on our favorite memories.
I made his recipe for dolmades, a Greek dish of stuffed grape leaves that has been in our family for generations. "These put mine to shame," he said, despite only eating two bites. I blinked back tears as I cleared his plate then ducked into his bathroom wallpapered in colored raindrops and cried.
While I try to focus on the good, I can still hear him ask, "Where are we?" as I walk him from his bedroom to the couch in a home he’s lived in for 50 years. I still see his face change from pleasure to blank stare, lost yet trapped in his mind. I still feel the delicate bones in his hands as I hold them and his thin shoulder blades when we embrace.
"When you leave, Jewel, I will just be so sad," he told me.
"I'll always be with you, Papou," I said, feeling like I was in a Disney movie of my own making. "Promise me you will get stronger, so we can be together when I visit in only one month."
"I promise," he said.
I’m back in Colorado now and thoughts of Papou flood my mind. The joy he felt upon seeing me feels like a curse. I’m consumed by guilt for leaving him. And then for not visiting more.
For so many years, Papou was my magic. Now I am his. But I am here, and he is there. My mind dances from hope to despair to anguish to appreciation. I suppose this is normal, I hope so at least. But this is the thing – after all this time, he knew me.
So how can I be a better caregiver? What should I do? What should my parents do? What have we learned about how best to support Alzheimer’s patients? One of our CU Anschutz faculty members answers all of my questions about how to provide better care for my loved one with Alzheimer's.