“What’s that word again honey…when people learn you have Alzheimer’s and then run away?” asked my dad.
We were sitting at the kitchen table in my home in Zürich, Switzerland. He was jotting notes on his trusty pocket sized pad of notepaper.
“Stigma,” said my mom.
“Oh yes,” he replied, vigorously scratching his pen across a faint line on his pad. He appeared almost mobilized by the word. Like he’d discovered how to slay it.
For my dad and mom, Alzheimer’s has brought upon insidious suffering, assaulting my dad’s brain slowly over the last nine years, affecting memory, mood and cognition. He still knows my name, but the disease has unpeeled him, almost like an onion, making me teary sometimes. Though I know I'm losing my dad (as I'll lose everyone at some point) — I’m simultaneously drawing closer, in flickers it seems, to his essence.
My Alzheimer’s dad, I believe— is exceptional. I see his tenacity more as he fights his disease than I could have ever seen during his years of health.
Since his diagnosis, he, a former naval officer and president of an advertising agency, has almost become more creative than ever. He spends much of his time writing poetry, reading, and deep in thought. He's unusually optimistic. He and my mom helped start Alzheimer’s support groups, held fundraising walks, and gave an Alzheimer’s talk in their local South Carolina retirement community. He talks almost incessantly about his disease.
“Quiting meat is a good plan,” he tells me sighting an Alzheimer’s study.
“Staying active is the best way to fight it,” he demonstrates by swimming in his local pool, walking his fox terrier daily, paddling a canoe, and spinning ceramic pots.
All confidence aside, he and my mom acted pretty terrified when I repeated the question, “So when will you come to Switzerland?” I was suggesting lifting them to a high altitude, over an exceptionally large sea, away from their structured, safe lifestyle in Fort Mill, South Carolina and dropping them for three weeks to a non-English speaking foreign land.
Who does this with Alzheimer’s?
But I wanted my artsy parents to witness Switzerland’s crystal lakes, castles, charming villages. I wanted them to taste the chocolate and revel at green hills leading to soaring white Alps.
And so after a year of my begging, they agreed to visit.
Then I began to worry, too. What about that stigma, I thought. Alzheimer’s sufferers don’t regularly travel the world in the tenth year of the disease— do they?
Would the airline industry treat a man with Alzheimer’s well? Would Delta employees, tired strangers, and airport personnel be kind if my parents became confused during security checks, customs, boarding and so-on? Would the rule-oriented Swiss people tolerate my parents’ “langsam” or slower behavior in stores, restaurants— on public transport? Would they snap at my dad’s unusual questions and unfiltered observations?
I made every arrangement I could afford, requesting special services from Delta Air. Delta reassured me that they’d care for my parents well. I purchased my dad a GPS watch on Amazon and talked with my mom about what to pack and what to expect expect upon arrival. I promised that I’d personally escort them everywhere.
And so the European Alzheimer’s vacation began.
“The pilot just gave dad a tour of the cockpit,” my mom texted me after boarding the flight. Not only did they both arrive in Zürich from their 16-hour trip (with layovers) safely— but they were smiling. No lost dad, no frazzled mom, no nasty stewardesses, no furious passengers. My Alzheimer’s dad and caretaker mom, in fact, were treated by Delta like gold star travelers.
And so I exhaled.
Then I took my dad and mom everywhere. Sometimes my dad resisted, but my mom and I assured him you can do this. We walked the city of Zürich, hiked trails, barbecued, visited churches, an art museum, art galleries, castles, waterfalls, rode ferries, trams and buses. We drove to a German flower island, a farm inn atop a mountain in Austria, and traveled in a little bubble on a long wire to a glacier.
“I’ve never been in a gondola,” reveled my mom.
My dad held the leash of my dog. His smile was grand. And he almost whispered, “I’d really love to ski that mountain.”
We traveled to France where a smiling young man rowed us down the romantic Lauch river in Colmar. We visited a sculpture garden in Lichtenstein, gobbled fondue in Zürich’s Old Town, dined once in a mountain castle, another time on a quiet alpine lake, and in a remote river canyon in wild flowery Tyrol, Austria. Each time we visited a new spot, climbed another flight of stairs, my mom and dad appeared younger, stronger, and I guess free for a while.
Did the Alzheimer’s go away? Of course not. My dad forgot stuff, often asking where exactly we were. He fatigued easily, so we rested on benches munching croissants or chocolate. Along the way, he’d fix his stare on a stranger. And before my mom and I could interfere, he’d trot off to start a conversation with a battered man sitting on the street, an old guy pushing a wheelchair, a young couple trying to take a picture, a random family at a restaurant, a white-haired woman trying to get off the tram.
“Danke” he said to people. And they smiled even if he wasn't using the word at the right time. No one seemed to really mind.
See my dad didn't care so much about what other people were thinking about him. Instead, he seemed to seek out ways to help others on his vacation, as if fighting the stigma of Alzheimer’s with every movement, each word. He had stuff he wanted to give— a heart, a mind, ideas bright. My mom and I sometimes shrank back, anticipating a stranger’s rude response. But people were kind, slowing down, engaging.
Apparently “stigma” doesn’t translate in Europe? I’m still not sure.
Perhaps the Alzheimer’s word and all the perceived limitations of my dad’s disease were lost along the way to Switzerland— like a buried memory. For three weeks, it seemed the stigmas fell to the bottom of the sea, bubbling upward with a language made only of living. For that slice of precious time we lived a language of fathers and daughters and grandchildren and son-in-laws— a language where a daughter sees her dad in a new way, and every moment a family spends together ripples with value.