I hovered behind Mom’s chair while she sat at a four-top kitchen table branded with grape juice fingerprints. 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 had done for many years with tatted pillowcases and Dad’s dress 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, 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 already 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.
Thanksgiving was nearing in Mom’s care home and leftover lunch scents of turkey and gravy wafted up toward the ceiling.
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 said and closed in on Mom’s face.
The caregiver had just given my mother a shower and notes of lavender and almond oil emanated from Mom’s skin.
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. As I spread my feet apart to lower my face to hers, my boots slid across gravy puddling on the floor. “Ewwww.”
My outburst cut through her fog.
“Hi.” Mom’s tone was flat.
I leaned over and enveloped Mom in my fleece jacket.
She pushed my arm away and my purse slipped off my shoulder—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 who had knocked a plastic puzzle piece on the floor and shattered 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 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 possessed priorities beyond just surviving. He recounted a story of a woman who would die 48 hours later. She had 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 and longer, if I counted the years she had hidden behind the haze of dementia. Over the course of windy blog posts, pealing laughter, and unstoppable tears, I pondered what were the reasons Mom wished to be alive – other than to torture me.
On occasion, I entered Mom’s memory care home 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 growling 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 coddled 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 wriggled Mom’s chair out from beneath the table.
She squeezed my hand and gritted her teeth. A grrrr rose out of her vocal cords.
Like a mechanic jacking up a car, I lifted her up through carefully placed shoulder anchors and footholds.
Slowly, Mom straightened. One foot followed another until she was erect and on her way. Her legs picked up speed.
We traversed a third of a mile that afternoon.
What does a good day look like? For eight hours with one caregiver, the day appears maddening. For another set of eight hours with a 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 those questions. I wasn’t the kid chatting about boyfriends with Mom over the phone. I was the kid who challenged my mother’s beliefs or reported for duty, and left.
My time with Mom ended an hour and a half later. I often berated myself for leaving when I had time 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 in that stretch around the clock.
Mom reached for my purse as a handle and I stumbled backwards. “Here. Here,” she warned as I nearly backed into a fake streetlamp.” Translation: look out.
Finally, I nudged her back. We were caught in tug of war.
I was her gravitational pull as she scooted towards a bench and shot more invectives my way.
She plunked 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 fringed, elephant pillows. Her feet, shod in black Velcro shoes, swung off the ground.
I kneeled in front of her, slowed her feet to standstill, and placed my hands in her lap. “Mom, I’ll see you later.”
“What’s that sweetie?” She tapped the tip of my nose with her index finger.
Did she really mean sweetie? And was the 90 minutes of haranguing worth one moment of this adoration?
Well, Dr. Gawande, it was.