In 2010 — in the same room where he called us to watch The Wonderful World of Disney, Perry Como Christmas specials, and men walking on the moon — my father sat in front of a purported news broadcast listening to his trusted familiar faces tell him that the new healthcare law would have death panels to decide when medical care should be withdrawn from elderly people, like him. Not many years later my mother lies chronically asleep in a hospital bed in the big room at the end of the hall where my sisters and I, as children, played, practiced our instruments, read, hammered typewritten diary entries, and dreamed. The scars where we taped posters to the wallpaper still remain. What’s invisible are stretch marks from growing up in a family haven, like wolves raised in a natural-environment refuge, taught to group-hunt, to share and protect, to live in the pack, but not how to evolve.
The year-long crumple into end-stage congestive heart failure cold-stopped my mother’s usual activity, extinguished any desire or impulse to try to make a meal or do laundry, to write a notecard or check her email. She began sitting on a loveseat all day, playing card games on an iPad and falling asleep. Every two or three weeks — without the energy to get out of bed, or suddenly laying her head on the dinner table to sleep, or falling on her way to the bathroom — there would be an ambulance trip to the ER. Occasionally she was admitted for a night or two in the hospital. Each discharge was supplemented with a pile of brochures and fliers and one or two home visits from a nurse with a new thick loose leaf notebook of after-hospitalization care information and records; charts to record daily weight and how much liquid to intake; and a new list of what medications were to be stopped, which doses changed, which new medicines started. All of which was undertaken, of course, by my father.
My torpid mother listened to the nurse, or seemed to, then went to the sofa to sleep over her iPad. We were confounded by mom’s inability or unwillingness (or inability to be willing) to do the seated exercises recommended by the physical therapist, the growing frequency of her soiling the bed or the sofa, the withdrawal from watching a ballgame or going out to a buffet restaurant, or the longer and longer naps. Meanwhile the staples in the pantry were invaded by moths, the 3-day-a-week cook/companion we engaged was fired by our father after two weeks for not putting tomatoes into beef stew, then the Meals on Wheels discontinued because the food was too processed and bland to encourage either of them to eat.
Three weeks into hospice, on the last day of my last visit, Mom didn’t want to wake up for her tiny breakfast. The day before the cousins had arrived, and as each came to the bedside, her eyes gleamed, her smile flowered, she reached for hugs, she mouthed, occasionally whispered, “I know you.” The next morning, utter fatigue. My sister played her violin. We sang Girl Scout songs. Mom didn’t open her eyes. She moved a little, fussed when the care-worker tried to rouse her for breakfast by stroking her face. I was the only one leaving that day, so my brother and his wife took my father out of the room “to give me my time” (accompanied by my sister’s violin). I sat on the bed near my mother’s knees and stretched one leg alongside her body. She moved her arm over and placed a hand on my ankle. I told her I’d be back in December. I sat there listening to a folk song melody, feeling the warmth of her hand. The last words she had spoken just to me had come the day before: In the morning before the visitors, when I told her she looked more awake today, she said, “It’s early.” I sat there wondering how those words might become significant.
The foreseeable deathbed scene hasn’t yet happened. It’s been three months. There might be many more.
For most of the past five decades, when a migraine or bout of vertigo put me into a ball of writhing nausea on the floor beside my toilet, my slurred moans of “why” and “oh please” still also included “Mommy …” Just this past year I’ve let that whimper mutate, only slightly, to “Tommy …” My dog. This has never been bewildering. I have never silent-cried dad (can’t even fathom daddy) in any private moment of wretchedness. This makes sense as well.
It seems an offspring identity is difficult to annul. I’ve watched, as docilely as reading a narrative, as my father shows me the moth traps he put into his pantry, makes schedules with the home care company, calls the numbers in my mother’s phone book to notify her old friends she is in hospice care … and never guessed his head might be spinning, his joints rusted, his kidneys gasping, his muscles half-starved.
As always, he pays the household bills and arranges for maintenance of the house where we (mostly) grew up. We’re completing that process elsewhere, and in stages. Overlapping with our juvenile and young-adulthood eras, over the course of his first 40 years at the homestead, Dad used natural volcanic rock blasted out of the hillside to erect rock wall terraces, filled them with soil, and there established his fruit and vegetable gardens, a place to raise rabbits, and another spot for the chicken coop. The livestock has been gone for over two decades, but up until this year he has maintained most of the seasonal terraced beds, those not the permanent home of fruit trees. He had to let a few areas go fallow more recently, as the four hours a day he could work outside became reduced to three then two then barely one. But two years ago he was still grafting new trees onto hardier root trunks, a process that won’t bear fruit for maybe another 3 years. He had time, as long as my mother was able to help make jam. That ended in 2012, according to the last jars in my pantry.
He’s 94. 5-feet tall now — down a full four inches. We stand eye-to-eye. A retired community college physics professor who’s gotten almost 30 years out of his pension. Conservative talk media has taught him now that anyone getting a public pension these days is draining the taxpayer.
What does he think about my 2-course load as a research-I university professor? I don’t ask. Still too vivid in my memory is the time my sister ran crying from the dinner table after she tried to defend Zero Population Growth. We talk about gardening and rainfall (but not about climate change).
When Dad was in his 70s, I learned that he hadn’t been in the hospital since his stint in the military in the ‘40s when he was sick, so sick he thought he was going to die. He doesn’t know or doesn’t remember what the diagnosis was, but during my childhood and young adulthood, well into my middle age, he was never sick beyond colds, the flu, and hurting his back in the garden a time or two too many. He never complained, never milked his minor ailments, which could have been more significant than anyone suspected.
There were ways to not be completely insensitive to the fact that he was no longer 40 and impervious, like when he helped me to build a raised garden in his 60s. At the hardware store, he explained to the young male employee that he ordinarily would load the railroad timbers himself, but had hurt his back. In his 70s he stopped using a campsite in favor of a cabin in the Sierras, and hiked for the last time to the lakes at 10,000 feet. In his mid-80s, while visiting my summer house in the Upper Peninsula, during long days of exploration by car and fishing in a canoe, my dad hardly ever had to use any of the outhouses my ex-husband was always searching for to relieve his own prostate-crowded bladder. In his later-80s, a bout of his life-long occasional nemesis, vertigo, toppled Dad from a ladder while picking persimmons, and he cracked his pelvis. This is the end of the house and rock-terraced gardens and the tall fruit trees, we all thought. But it wasn’t. We siblings and our spouses — some of us only during visits from other states — began helping with the annual tree-trimming, with fruit harvest, with weeding, pruning, soil cultivation and construction of bird nets.
We worried about the upkeep of those terraced gardens, the areas of the property where junk had amassed, the 50 years of storage of “possibly useful items” hoarded in the basement. He had finally been able to relegate the lawn and hedge upkeep to a landscape service, but that’s as far as he would trust them. There’d been a minor heart attack, pacemaker and stents inserted at some point after the cracked pelvis. We didn’t really believe he was invincible, indomitable, immortalBut there must have been a latent conviction from childhood that our 5’4” 130-lb patriarch was interminable.
In my 40s I tried to mark the end of childhood — and the last chapter in a memoir titled Indigenous: Growing Up Californian — with my mother’s brain-attack. The stroke, following open-heart surgery, damaged the language-processing part of her brain and launched the inevitable parent-child role-reversal. That last chapter, “Tell Me,” focused on her struggle to regain language but also exposed the part of our relationship that had never developed — mother-daughter confidences. At that point any opportunity to remedy the lack was gone forever.
A part of that story I didn’t dwell on, for reasons I didn’t want to examine, was the time I made my father cry. That’s how he defined it afterwards. Actually it was just an uncharacteristically raw moment. Soon after the stroke, I reached my father by phone, and my throat tightened, my words wobbled, my voice broke. Then my father sobbed.
While there have been times, places and situations in my life where crying was far too often my answer to my own drama, family circumstance was never one of those. Not consciously chosen, but observed, after the fact, especially lately. Now looking back at that occasion with my father, I must have sealed the pact with myself.
I must have been roiling: hot, ashamed, confused, horrified, guilt-laden, displaced, sent into anguished orbit. The patriarch was supposed to be such strength and stability, hysterics weren’t an option. I displayed enough of them with and for a list of other older men, supposed advisors, longed-for mentors, miscarried lovers. So, a tacit promise: not here, not again.
Over the 10 to 12 months of my mother’s final decline, Dad lost 30 pounds. His vertigo was a more frequent companion so he’d voluntarily stopped driving farther away than the grocery store. Tinnitus began, and became unyielding. He’d lost the use of one of his arms, likely during one of his attempts to help my mother up from a fall. His once camel-like bladder had started waking him 2 or 3 times at night, in addition to the times he was roused by my mother. He was relentlessly exhausted, probably malnourished.
He did not report any of this to me. He told me about the first night one of the care-workers stayed over and my mother became frantic, wailing for the woman to go home, calling out for my father, but mostly erupting into long strings of no-no-no-no, go away She could be only be calmed when he got in bed with her and held her. About himself, he said nothing. And I didn’t ask.
When the four paternal cousins visited, they noticed. The eldest, a registered dietitian and recently retired medical facility food service consultant, sat on the floor across the coffee table from me and said, “I needed to come say goodbye to your Mom, she meant a lot to me. But I’m worried we’re going to lose your Dad. I’ve called him for gardening advice all these years, but not lately. I haven’t come to see him for a while, and now he’s skin and bones.”
I told my cousin about the home visit cook and companion we’d scheduled six months before, a girl barely out of her teens who couldn’t cook the way Dad liked. “Beef stew without tomatoes. He couldn’t forgive it, let alone forget.” Then the Meals on Wheels started, and who could blame him for stopping that after two weeks, packaged processed microwave meals and white bread rolls. “We try to make extra frozen meals when we visit, put them in individual containers in the freezer. Most of them from the last visit are still in there with the Meals on Wheels.”
“I’m going to become your dad’s personal chef,” he said. “Who’s the leader among you guys?”
I paused and set aside the obvious answer, my Dad. “Leader?”
“Making decisions about your parents, how do you make decisions, is there one of you taking charge?”
“I don’t think we work that way. We each do what we can that is helpful. You might have noticed we, or at least me … I’m a little … passive?”
“Ya think?”
My father — during his 95th year of life, while his 89-year-old wife was in and out of the ER and under what seemed to be constant (if chaotic) medical supervision — thought the warnings from his favorite pundits had materialized: the death panel had met, his HMO’s protocol for caring for patients of his age was to stop all treatments and not interrupt “the dying process.” His perception was compounded by a primary care physician in a vast HMO who seemed to behave in kind. I wonder if he had ever seen a popular bumper-sticker in 2010: Our healthcare system already has death panels, they’re called insurance companies.
He might have thought his weight loss was routine, this level of muscle atrophy standard for his age, more frequent trips to the bathroom an inevitable progression, sleep deficiency something to be endured under the circumstances, likewise the screaming tinnitus. One thing he did mention was the pain in his incapacitated shoulder. His arm down to his elbow stayed fused to his ribs. Even eating was difficult, so how was he maintaining personal hygiene, not to mention preparing his meals or changing his clothes.
I didn’t ask those specifics, only, “Did you tell your doctor?”
“He says he can’t do anything about it.”
Those might not have been the doctor’s exact words. Or perhaps an evasion for a condition that can only be fixed with surgery. My father’s translation generalized whatever the doctor had said into the death panel’s decree. It never occurred to me, however, to say “Let me call them, let’s get you a different doctor.” It never would have occurred to either of us that someone else should take over.
Skip to the part where that eldest cousin steps in, becomes not only the personal chef but the imperative medical advocate who can demand new doctors and longer exams, tests, explanations, therapies, answers and more forms of access. He brings fat and protein-rich meals twice a week and stays to share the food and conversation, sometimes brings a friend to talk politics or science, chauffeurs Dad to each doctor and physical therapy appointment, speaks first – with authority and humor – to each practitioner, follows up with emailed questions (and gets answers), then sends lengthy email medical updates to his stunned cousins. Why skim this heroism? It’s who he is. Reveals who I am. But I think I have time.
Cris Mazza’s newest title is a real-time memoir titled Something Wrong With Her chronicling the 25-year journey to reunite with a boy from her past. She has sixteen other titles including her most recent novel Various Men Who Knew Us as Girls. Her first novel, How to Leave a Country, won the PEN/Nelson Algren Award for book-length fiction. Currently living 50 miles west of Chicago, she is a professor in the Program for Writers at the University of Illinois at Chicago.
–Art by Rona Keller
Asics shoes | Air Jordan 1 Retro High OG ‘University Blue’ — Ietp