I hovered behind Mom’s chair, sticky with fingerprints, while she sat at a table for four in the kitchen. She pleated a white nylon napkin and the napkin refused to hold its crease. Over and over, Mom dragged the side of her palm across the napkin as she did for many years with tatted pillowcases and Dad’s shirts.
Is this what the famed surgeon, Dr. Atule Gawande, had in mind, when he asked, “What does a good day look like?”
Dr. Gwande had written a New York Times best seller, On Being Mortal, Medicine and What Matters in the End. I never read his book. I had lost a loved one out of chronological order and knew what mattered.
But the doctor had returned as guest on an On Being podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm worse than my mother’s Sinatra tunes cycling through my brain.
Leftover lunch scents of turkey and gravy wafted around the room. I swung my body around to peer into Mom’s field of vision, a field rapidly diminishing. This summer, Mom began to point her nose down, most often as she walked. I thought her back was giving her fits, or at 4’ foot 7”, Mom had shrunk again. But in dementia, loss of peripheral vision was common. Her perspective had been altered, not by choice, but by disease.
“Hi.” I closed in on Mom’s face.
Notes of of lavender and almond oil emanated from her skin after a shower.
Staring at another resident or the inaccessible, frosty outdoors, Mom pinched a portion of stuffing and dropped a blob on the floor.
“Hi,” I uttered again. I spread my feet apart and in doing so, my boots slid across gravy on the floor. “Ewwww.”
My outburst cut through her fog.
“Hi.” Mom’s tone was flat.
I leaned over and encircled Mom in a hug.
But she pushed my arm away and my purse slipped off my shoulder and into the stuffing.
“What do you want with that? Oh go on. Don’t do that. You should when you….” Mom’s loud rant caused heads to turn.
To the average person, Mom’s utterances made no sense. To me, her gibberish translated to, “Don’t hug me. I’m not in the mood.”
Mom’s outburst continued. “No, I mean that one.” She jabbed a finger into the air, judging another resident for dropping a plastic puzzle piece on the floor and shattering the silence that was more jarring during meals. Mom always reproached other residents for looking, speaking, eating, or living.
I had rushed to visit Mom between meetings and a car appointment, plotting out my route to include a stop to see her. Now, I stepped back to take in the whole of the scene playing out before me.
Dr. Gawande informed the interviewer how people in the end stages of their life had priorities beyond just surviving. He recounted a story of a woman who would die 48 hours later who asked if she could take her grandchildren to Disney World. But it was too late. The medical community had missed her wish by planning for what the doctor could fix and not implementing other notions to support her well-being.
Dr. Gawande defined well-being as: the reasons one wishes to be alive.
I had overseen my mother’s care for five years. She had been hidden even longer behind the haze of dementia. Over the course of blog posts, laughter, and tears, I wondered what were the reasons Mom wished to be alive – other than to torture me.
On occasion, I entered Arden Courts and was forewarned by staff about Mom’s mood, only to find her in a lighthearted disposition and joking about playing kickball inside while another resident screamed out, “Kickball is an outside game.”
Other times, in the exact same setting, my hopes were dashed by my mother’s moods, which, like a Ferrari, went from stillness to scowling in ninety seconds.
And so, my mother was mortal but she was not dying in the traditional terminal sense. It was more difficult to answer the question, “What does a good day look like?”
Taking her grandchildren one last time to Disney world, which could be accomplished only through the feat of virtual reality?
Reading one last book of Erma Bombeck’s or watching How Green is My Valley or Cat on a Hot Tin Roof with Paul Newman one more time?
Rolling out her revered ravioli to the precise thinness to not explode when slipped gingerly into the water, pushed ever so slightly under the roil, and lifted out with slotted spoon and cuddled with homemade sauce?
Those events would happen at a conscious level for which Mom would have no grasp of the joy or meaning they might carry.
I swung her chair from beneath the table.
Mom yelled again. She squeezed my hand as hard as she could, and grit her teeth. Something akin to a grrrr….. was emitted from her vocal cords.
Like a mechanic jacking up a car, I raised her up through carefully placed shoulder anchors and footholds. Slowly, she straightened. One foot followed another until she was erect and on her way.
Her legs picked up speed. We traversed .3 miles that afternoon.
What does a good day look like? For eight hours with one caregiver, the day looks maddening. For another set of eight hours with different caregiver, the time is filled with joy. But what does a good day look like for a family member with an overwhelming responsibility to figure out what a good day is for someone else?
I wasn’t around in the years when I should have been asking the questions. I wasn’t the kid chatting up a storm on the other end of the phone line. I was the kid who challenged my mother’s beliefs or reported in for duty, and hung up.
My time with Mom ended an hour and a half later. I often berated myself for leaving when more time was available, but ninety minutes was heroic for those that didn’t actually work in the dementia field. It took pots of patience for me to cook up ways for Mom and I to interact for ninety minutes.
Mom used my arms as her walker handles and I stumbled backwards. “Here. Here,” she warned me about backing into a fake streetlamp. ” Translation: look out.
Finally, I nudged back. We were caught in tug of war. I was her gravitational pull as she moved towards a bench while shooting more invectives my way.
She plopped down on the tufted cushion where the afternoon sun shone low through the thinning oaks and maples. I propped up Mom’s arms with two shaggy pillows. Her feet, in black Velcro shoes, swung off the ground.
As I kneeled in front of her and slowed her feet to standstill, I placed my hands on her knees. “Mom, I’ll see you later.”
“What’s that sweetie?” Did she really mean sweetie? And was the 90 minutes of haranguing worth one moment of this adoration?
Well, Dr. Gawande, it was.