I’ve logged more experience than most with simplicity and the complexity you discover inside simplicity, minimalism and asocial behavior, endurance and landscape.
Here is the truth: I think some deep wisdom inside me (a) sensed the stress, (b) was terrified for me, and (c) gave me something new and hard to focus on in order to prevent me from lapsing into a despair coma — and also to keep me from having a jelly jar of wine in my hand.
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After my father died, my mother, who is in the early stages of Alzheimer’s disease, moved in with my patient husband, Larry, and me. My sweet, exasperating mother got the guest room at the end of the hall; my teenage daughter Anna got to share her bathroom; and I got a spiffy new therapist named Stuart.
A year has passed since then. It is winter again, and snow once more shrouds the ground that I trekked across after the funeral to pinch a few flowers from the bouquets covering my father’s grave, flowers that I dutifully carried into my kitchen and put in a vase, as if they had any connection at all to him. They were hothouse roses, a funeral-industry staple, like taped organ music and hours-old coffee. I don’t remember my father ever remarking on a flower in his life.
In the weeks following the funeral, my sister Sue and I labored, with help from our families, to steer our mother along the twisting corridors of Alzheimer’s. Every day was like waking up in a strange old hotel with high ceilings, the kind that you find in big cities: You step tentatively out of your room and go searching for the elevator that will bring you down to the familiar street, but that elevator isn’t so easy to find. Everywhere you turn are hallways and more hallways, snaking and braiding and dividing up there on the tenth floor. You realize with certainty and horror that you could wander those featureless halls forever without touching the earth again.
I am not a churchy person by nature, but I’ve decided to start taking my mother to the Presbyterian church near my house. She is a lifelong Presbyterian, and I figure the familiarity of the liturgy might make her feel more comfortable and secure in her new surroundings. And it does, a little. We sit side by side near the back of the sanctuary and recite the Lord’s Prayer, asking that our debts be forgiven and promising to forgive our debtors. We sing the Gloria Patri and the doxology. The church’s two ministers are like spirited young colts. They seem so happy up there on the pulpit; they almost sing their sermons, spinning shiny new metaphors from old biblical text like jugglers spinning plates on the Ed Sullivan Show. They seem to be at once devout and clever.
My mother often has a hard time following the bulletin and finding the hymns in the hymnal, and I sometimes lean over and help her. Other times, usually on mornings when she has asked me again and again who I am — even asked me if I am her mother — I sit tight, irritated, and let her wander through the pages while the congregation reads in unison. One morning at breakfast she asked me for what seemed like the hundredth time if I was her mother, and I snapped, “Do I look like I’m 115 goddamned years old?” That’s how mean I can be.
One of the uncomfortable things about living with a person who suffers from Alzheimer’s is that it makes you confront your own character flaws. Just when you thought it more or less clear from all the times you’ve sent money to public radio and boycotted Wal-Mart that you were the incarnation of Albert Schweitzer, or Gandhi, or both, you find out you’re really just a slightly bitchier version of Martha Stewart. Your well of compassion and patience, which was never very deep to begin with, is now just an empty cistern.
A few weeks after my mother moved in, I dropped her off at my sister’s house so that I could go hear environmental writer and activist Terry Tempest Williams speak on the campus of Michigan State University. I and a small crowd of other liberals, all chastened by the outcome of the 2004 presidential election, had emerged from our dens, licking our wounds, and crept out through the March sleet to listen to Williams talk about sustainable living in the global age. We disappointed blue-staters hadn’t been out much since November, what with the bad weather following the election like fallout, but we assembled in a large, anonymous lecture room, and Williams lit a candle and began to speak about community and living in the service of something beyond ourselves. She quoted Henry David Thoreau: “Let us consider the way we spend our lives.” And she described the rain that comes after periods of drought, even in the desert, where she lives, and the life that appears in puddles within hours of a deluge.
I thought about how dried up and brittle I was feeling inside, like seasoned cordwood, when what I wanted was wetness, fluidity. And I did feel a keen desire to serve something beyond myself; I merely needed the capacity to do so, which could come only from buoyant, sloppy, perilous, life-sustaining love. Inside my dry-kindling self, I felt the possibility of a damning conflagration, and I realized that hell, like the kingdom of God, lies distinctly within. And I recognized sin as a condition of self that draws a border around its private appetites — for time, money, power (insert your private hoard here) — and excludes everything and everyone else.
My mother’s Presbyterians have a great interest in sin. I froze up momentarily one Sunday when the young minister paused midgallop to endorse the Reform Tenets of the church, which include original sin. Then I took a moment to breathe and remind myself that most of the people sitting around me had never seriously considered the implications of that grim doctrine. They came to church so that they could be a part of something larger and better than themselves, and so that their children could color pictures of Jesus in the sunny Sunday-school classrooms. Certainly the nice minister’s wife, when she’d introduced herself to us, had not loomed like one of the arrogant elect; she’d said hello and welcomed us and shown us around.
But when the Presbyterians bow their heads to pray for forgiveness for their sins, which they seem quite bent on doing much of the time, my private thoughts pull themselves up and bellow, “Sin? Sin? Excuse me, but we didn’t send a tsunami to wipe out countless lives, including children and babies. And we didn’t invent cancer, or schizophrenia, or muscular dystrophy, or Alzheimer’s. But we are here living with them and trying to do a decent job of helping each other through this obstacle course of horrors, even if we do screw up a lot of the time. So if God is watching, I sure as hell hope he/she/it is saying, ‘That’s a damn fine job you’re all doing.’ ”
But, as I said, after going to my own church, which is what I felt I’d done with Terry Tempest Williams and that mob of damp and disheartened liberals, I reconsidered the problem of sin. I realized that steps needed to be taken . . . and that I had to take them. I considered the way I’d been spending my life lately. Anyone who didn’t look too closely might have told you I was doing a fine job fulfilling a daughter’s duties: My sister and I had hired an aide to spend several hours a day with my mother. We had assembled a medical team of “ologists” to oversee her body, and a legal-financial team to oversee her assets. But somehow, I knew, I had to do something more, something that for me was radical and terrifying: I had to make the dense and rigid borders of my self permeable. I had to stop recoiling from and deflecting my mother’s pain and instead let it in, where it would reshape my life and claim my time and energy. You can’t imagine how much I didn’t want to do that. But I suspected it was just that sort of full communion that would lead me to where the water is. I wasn’t exactly sure how to tap into this subterranean sea that I sensed (or, rather, hoped) lay beneath my crusty separate self like an aquifer beneath a desert. I had no divining rod except a raggedy sort of faith in the power of love — the pure stuff, not the compromised cupfuls we flavor and bottle and hand out in small portions and sometimes take back.
It was becoming clear that I had to do less managing of my mother’s affairs and more listening.
To that end, I set myself deliberately along a new course. No more sitting my mom in the next room with the television on while I washed and peeled and stir-fried vegetables for dinner, as if she were company, an elderly auntie too fragile to pitch in. I invited her into the kitchen, handed her a paring knife, and sat her down at our old farm table to slice peppers. Enough pretending that all was well — it wasn’t. Might as well admit it. She had sustained staggering losses.
“What do you miss the most, Mom?” I asked her.
“My house. The girls. Ken.” Ken was my father; the “girls” were a group of eighty-year-old women she’d known since they’d worked together at the Standard Oil Company in the fifties. They still met for lunch once a month, though naturally they were down a few girls. “Especially Cathy,” she added in her small voice. Her best friend.
Against my better judgment, I found my mom’s small voice irritating, imagined I heard in it an implicit reproach: A good daughter would find the time to drive me home once in a while. I bit my lip and chopped Vidalia onions.
Nothing happened quickly. In May we bought antique lawn chairs and painted them purple and sat in them in the garden each evening. We walked our old dogs together. But I struggled to open myself and continued to feel crowded by my mother’s enormous needs and the claims they made on my life.
And then — a godsend. The summer my mother came to live with my sister and me, moving back and forth between our two homes, we cleaned out her house so that it could be rented, coming away with odd bits of furniture, stacks of books, and a few boxes of mementos to be sorted out later. When “later” came, I discovered among the old passports and birth certificates my mother’s wedding picture. She is beautiful in it, standing alone at the bottom of a stairway in her satin dress. But most of all she is young — younger than my own daughters.
I hung her portrait in my house just as I’d found it — discolored at the edges, its frame rickety and peeling. I study it almost daily, and here is what I am finding: the girl in that photograph awakens my tenderest, most protective instincts. I want to take her by the hand and promise that the world will be gentle with her, that she won’t come up empty-handed; I will see to it.
That, of course, is a promise I can’t make even to my own children. But the wonder of it is that I am meeting that lovely bride now, at the other end of her life. The world, as it turns out, was not gentle with her at all, but I am here to take her hand, in its old woman’s skin. Mother, daughter — what does it matter the order, the age?
Those people who say that life isn’t perfect — well, they are right. I am still overly busy, and my mother is still often sad. But my borders, at least, have relaxed and grown noticeably porous, the way they were when my daughters were young. I am getting better at letting my mother into my life: schlepping her along in the snow to a fundraiser for earthquake victims; sitting her down for chai at my favorite cafe; even working her into my noisy book group, where she seems happy to engage in small talk. And I am surrendering my role as protector, learning to let her help me too. When I crawled out into the English ivy to be near my old dog, who was dying, she ran for blankets and tissues and tea. Back and forth she went on her unsteady feet, the ivy grabbing at her ankles — but I let her care for me. Because permeable, breathing borders both let out and receive love.
“This has been a tough year,” I said, sniffling.
“The worst year of my life.”
We sat there until the sun went down. Then we got up and went inside.
A different version of this essay appeared previously in Zion’s Herald.