I hovered behind Mom’s chair, sticky with fingerprints, while she sat at her table for four in the kitchen at Arden Courts. 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, but the napkin wouldn’t lie flat.
Is this what Dr. Atule Gawande had in mind, when he asked, “What does a good day look like?”
Dr. Gwande practiced endocrine and general surgery and wrote a New York Times best seller, On Being Mortal, Medicine and What Matters in the End. I never read his book. Anyone who has lost a loved one, especially out of chronological order, can tell you what matters.
But he had returned as guest on a favorite podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm, one worse than any Sinatra tune circling 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 that was rapidly diminishing. This summer, Mom began to point her nose down, most often when she walked. I first thought her back was giving her fits, or at 4’ foot 7”, Mom had shrunk again. In dementia, loss of peripheral vision was common. It was her perspective that had been altered, not by choice, but by disease.
“Hi,” I said, closing in on Mom’s face, my nose taking in a whiff of lavender and almond oil emanating off her skin. Thursday was her shower day. She remained seated, staring at another resident, or outdoors, which she couldn’t access due to frosty conditions.
“Hi,” I uttered again and adjusted my stance. My foot slid as I smushed leftover stuffing Mom must have dropped on the floor while pinching a portion with her hands.
“Hi.” Mom’s tone was flat.
I reached out to encircle Mom in a hug. 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….”
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 continued with her outburst. “No, I mean that one.” She jabbed a finger into the air, silently accusing another resident who had just dropped a plastic puzzle on the floor, the pieces shattering the silence that was even more jarring during meals. Mom was always quick to reproach another resident of looking, speaking, eating, or living.
I had rushed over to see Mom, in between a rash of meetings and car appointments, diligently plotting out my route to include a stop to see mia bella. 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 have priorities beyond just surviving. He recounted a story of a woman laying on her deathbed, a woman who would die 48 hours later, who asked if she could take her grandchildren to Disney World. Of course, it was too late. The medical community had missed that ask by looking at what the doctor could fix and not seeing what else could support her well-being.
Dr. Gawande defined well-being as: the reasons one wishes to be alive. Its been five years that I have overseen Mom’s care. Longer that she had been hidden behind the haze of dementia. And 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 into Arden Courts and was forewarned about Mom’s mood, only to find her in a lighthearted disposition and joking in her own way about playing kickball inside, while another resident screamed out, “Kickball is outside game.”
Other times, I walked into that same setting, only to have my hopes dashed and hands too, at the hands of my mother, who, like a Ferrari, went from stillness to scowling in ninety seconds.
And so, my mother was mortal. We all were, but she was a lot closer to dying than some others her age, mainly because of her dementia. But she was not dying in the traditional terminal sense. Therefore, 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 through the feat of modern travel, medications or video transports?
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 that will not explode when slipped gingerly into the water and pushed ever so slightly under the roil and then lifted out with slotted spoon and cuddled with homemade sauce?
Those would be events happening at a conscious level for which Mom would have no grasp of what joy or meaning it might bring for her.
I don’t know what a good day looked like for Mom. She might grin at the smallest indiscretion of someone else, while also snarl in my ear if she’s left out of a conversation or could not follow the line of thinking due to her hearing or inability to comprehend.
I inserted myself back into Mom’s life and swung her chair from beneath the table. She yelled some more. She did this thing, where she grabbed my hand and squeezed 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.
She wanted to walk. Her legs picked up speed. We traversed .3 miles that afternoon.
What does a good day look like? For eight hours with one caregiver, it looks like one thing. For another set of eight hours with another caregiver, it looks like something else. 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?
My mother and I didn’t know each other well. I wasn’t the kid chatting up a storm on the other end of the phone line. I was the kid who challenged her beliefs or reported in for duty, and hung up.
At least eight years ago, I sat at the oval kitchen table with Mom and Dad who filled in an outline of sort, of their medical background, and posted it to the refrigerator. It was called a File of Life. But it should have been named the File of Death. It so succinctly catalogued how one was failing, and not living.
And there was no line on which to answer, “What does a good day look like,” for someone whose mind would eventually turn blank.
Our language around death and dying and dementia dramatically altered in those intervening years. Only Mom and I could not take full advantage of the advances.
My time with Mom ended an hour and a half later. I often berated myself for leaving when more time was available to me, but ninety minutes was considered heroic for those that didn’t actually work in the dementia field. It took pots of patience for me to cook up things to do and ways to interact for ninety minutes.
Mom moved me around, using me as her walker, as I stumbled backwards. She warned me about backing into a fake streetlamp. “Here. Here,” she called out. ” Translation: look out.
Finally, I had the gumption to push back, caught as we were in tug of war. I was her gravitational pull and she moved towards a bench while shooting more invectives my way.
I plopped her 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, remained swinging.
I kneeled in front of her and slowed her feet to standstill. I placed my hands on her knees and looked into her face, as if asking the Pope for forgiveness.
“Mom, I’ll see you later.”
“What’s that sweetie?” So coherent. And did she really mean sweetie? And was the 90 minutes of haranguing worth the one moment of this adoration?
Well, Dr. Gawande. It was.
There will never be a good day for Mom and me. But there will be stuffing stuck to my winter boots, napkins she will keep trying to fold, fingers – hers and mine – cramping from loss of blood, a few juicy swear words from the mouth of a woman who once sang in a high contralto like Kate Smith. And if the sun ray’s touch her face at just the right angle, out of the corner of her eye, she’ll glimpse a reason for being alive.