On the stage, a lavish musical was unfolding, complete with booming orchestra, bold singers, and catchy choreography. I was watching the action but my mind was on a move we’d recently seen, Still Alice, which featured a brilliant 50-year-old woman with early onset Alzheimer’s. More accurately, I was analyzing what I would do if I had Alzheimer’s: the note I might carry around, asking for people’s kindness and patience if I should repeat myself or get lost … or I worried about the burden on my children and wondered if there would be a point where I’d want to die. Then I thought about my mother: even when times were really tough and sad with my mom, I never wanted her to die; I never wanted to be without her company. Then I … Well, you get the idea; instead of enjoying a light-hearted Broadway road show, I was stirring up negative energy and stewing over uncertainties outside of my control.
At intermission, I reported these morbid thoughts to Ron. He listened carefully, then said, “Well, at least you can get a book out of this.”
I looked at him blankly. “What book?”
He looked right at me. “Well, instead of Still Alice, you can write Used to Be Deborah.”
I burst out laughing; Ron laughed, and I was back in the present.
Ron’s comment had reminded me of one of my dad’s favorite jokes.
Warning: this joke is really not that funny but it stuck with me.
A man wanted to find out the meaning of life. He climbed a high mountain and consulted a guru; this sage man told him he needed a daily chanting and meditation practice. Every day, he needed to sit on a meditation cushion and first chant, “Sensa, Sensa, Sensa. “ for one hour.
Then he needed to intone, “Huma, Huma, Huma” for another hour.
The man did this and after two weeks of feeling more frustrated than enlightened, he returned to the guru and said, “It isn’t working. I’ve had no revelations and the whole exercise is about to drive me crazy.”
The guru stroked his white beard (My father’s gurus frequently sported long white beards) and contemplated for what seemed like 400 hours. After 30 interminable minutes, he said, “Well, my son, you are now ready to put these two sacred chants together. First one, slowly, then the other slowly and build up to where you’re saying the hallowed words quickly, one after the other.”
The man hurried home, relieved to have a new assignment.
He intoned, “Sensa.” Then he chanted, “Huma.”
Faster and faster he chanted, until the two words blended into the true meaning of life, “Sensa Humor.”
How do we keep our “Sensa Humor” in the midst of uncertainty and chaos?
For me, it’s glorious groaning puns, wise and witty friends, and a willingness to laugh. How about you?
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
“So tell me,” my mother said, looking at me earnestly, “how is your mother doing?”
I patted her hand and smiled at her. “Well, Mom,” I said, “that’s something only you can tell me.”
Mom laughed. I laughed. We hugged and I felt a rush of connection and hope. Every caregiver experiences those unexpected moments of humor, where surprise and laughter overshadow grief and loss.
My friend, author Theresa Hupp, recently shared a few of her surprising moments with her mom.
“Not long after my mother was diagnosed with Alzheimer’s, several family members gathered in New Orleans for my daughter’s graduation from Tulane Law School. The day after we all arrived, my father announced that he needed to buy dress shoes.
‘I’m the one with dementia,’ my mother said, ‘but he’s the one who forgot to pack his shoes!’
A day or two later, after we had toured the National World War II Museum in New Orleans we were standing at a corner waiting to catch one of the famous streetcars back to our hotel. We waited and waited. No streetcar came. Then my mother pointed at a sign, “Look at that. It says the route is changed.”
And sure enough, because of a parade (there’s always a parade in New Orleans), the streetcar route had changed for the day. None of the rest of us had noticed the sign.
A few months after our New Orleans trip, I wrote this poem:
At first, she’s tense when traffic speeds,
An early sign she cannot cope.
We take her hand to cross the street,
It’s just her age and gait, we hope.
Then household chores become too hard,
The daily things she’s done for years.
Forgetfulness and gaffes increase,
And every failure leads to tears.
No longer parent, now she’s child,
Her brain regresses day by day.
Our lives flow on as her mind fades,
The shadows take her far away.
And when our hearts acknowledge loss,
Just as our grief begins to hit,
She smiles and utters a remark
Surprising us with her old wit.”
Here’s to listening with an open mind and heart and being ready to appreciate the marvelous happenstance humor.
To explore more of Theresa’s world, visit her blog at http://mthupp.wordpress.com/
Deborah is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Recently I’ve been collecting inspirational quotes that remind me to make the most of every day:
“Every day is an epic journey!” Diana Nyad, long-distance swimmer
“Play is a tool for social change,” Jessica Matthews, Uncharted Play
“What day is it?”
It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.” A.A. Milne
“Write it on your heart that every day is the best day in the year.” Ralph Waldo Emerson
Of course, one reason I’m focused on meaningful living is because I’m also thinking about dying. How do you move through this holiday season, experiencing life to the fullest, and also honoring and feeling connected with those who have died?
Here are a few ideas I have tried. I’d love to hear from you: how else do you acknowledge and honor your dead?
Feed Body and Soul
We always have some of my parents’ favorite foods. My dad particularly liked Planter’s Deluxe Nut Mix. He really adored the cashews, but he didn’t want to spend the money to upgrade to all cashews. He preferred to pick out the deliciously rare morsels, often leaving behind a plethora of peanuts, almonds or hazelnuts. In his honor, we repeat the ritual. Thank goodness, someone finally likes peanuts. Now all we need is a champion for the almonds. Did you know that memorial cashews have no calories?
Share Something Tangible
I like to wear my mother’s black blouse emblazoned with silver sequins at least once during the season. When Mom wore this blouse, it signified she was going out someplace elegant. She accompanied it with a long black skirt and high heels. When I put on my ordinary black slacks and tie up my ubiquitous black tennis shoes, I imagine my mother shaking her head. “Don’t you have any better shoes, dear?” my mother prods me from beyond the grave. “A little lipstick would be nice.” That’s a lovely part of our post-death ritual: I hear my mother’s suggestions and I fondly remember her love of dressing up.
Have the Conversation Anyway
A dear friend from Baltimore died this year, way before his time. He loved movies and always called to give us his review of any new films. Particularly this time of year, when we go to the cinema, we think about our friend and discuss his possible opinion of the film. Which character would he have identified with? What would have been his favorite scene? How many stars would he have given the show?
I feel grateful that the people I love are part of my attempt to live an “epic” life. In fact, my dad inspired me to use the George Burns quote that ends this piece. I’m thinking about Dad and his dear friend Hank, recently deceased. They might be holding drinks, a little torchy jazz music in the background. Dad might lean over to Hank and say, “You know I’m feeling a little old today. I just realized that when I was a boy, the Dead Sea was only sick.”