The Good Daughter: Becoming the Family Caregiver

How a daughter became family caregiver to her aging parents and how elder care redefined the family’s boundaries.

By Katy Butler

Parents and Children
For 40 years, until my father had a stroke five years ago, my mother and I were mirror opposites, each brilliant in realms where the other could barely cope. Except for her two years as a high school art teacher, she had never worked outside the home, and I had never worked within it.
She made sure her Connecticut household ran like a fine Swiss watch. She could sew a silk blouse from a photo in Vogue, cut my father’s hair, stain a deck, make coq au vin with her own chicken stock, refinish a dining room table, and knit a sweater. After her blonde, Grace Kelly twist turned white, she had taken to wearing her hair gathered loosely at her nape. In slim black jeans and a cashmere sweater, she was more elegant than I could ever hope to be.
Before my father’s stroke, however, she had never balanced a checkbook. And in all my adult life, I had never been supported by a man or raised anything more complex than a ficus tree.
She and I were often at odds when I was young. I felt I could never measure up to her standards, and she thought I was oversensitive to her criticism. So after college, I fled to California. There I spent my working days in clattering newsrooms and tiny rented offices. I interviewed mayors, picked stocks, negotiated leases, translated neuroscience into kitchen-table English for the New York Times, and won awards. But the tailor hemmed my pants; Whole Foods roasted my chickens; and every two weeks, Renata cleaned the house I shared with my man. The rest of the time I tolerated levels of household disorder that would have driven my mother nuts.
Then, on an October morning in 2001, my father, a retired university professor, collapsed on the kitchen floor. When my mother called me in tears, something primitive rose from my core and pushed me onto a plane and straight to the hospital where my father lay. My two brothers stayed put in California. Six weeks later, with my father ready to go home, I flew out a second time and found my mother a caregivers’ support group, a doctor specializing in medical catastrophe, and a lawyer specializing in elder issues.
Now I watch her struggle with ambiguous loss — my father is not quite alive and not quite dead — and unending physical caretaking. He can no longer shower unaided, and he struggles to complete a sentence. He is becoming her child, and she in some ways is becoming mine.

Trying on a New Role
Since my father’s stroke, I have supervised my parents’ investments long-distance, and I have assumed legal control of half their money. I fly home when I can and worry when I can’t. I nudge my mother to hire more help. I send my dad letters with drawings in the margins and look forward to the ones he sends back, written in a cramped, spidery hand. Sometimes when I’m visiting from California, tears fill my mother’s eyes and she takes my hand in a soft, unfamiliar way. "If only you lived closer," she says.
For a moment, I wish I could respond like the selfless spinsters I used to read about in Victorian novels — that army of single women without other prospects who stayed home through the long years of their parents’ dying. I can’t do that. I’ve been on my own too long. Yet much to my surprise, and despite the strains, I’m finding the role of dutiful daughter far more gratifying than I ever expected.
I’m grateful I can help. I’m amazed I want to. I am an accidental inheritor of a long tradition of unpaid female altruism, without which most families would collapse when they hit black ice. Yet I want to preserve my own life — my livelihood, my dreams, my friends, my relationship, and my sanity-preserving walks on the mountain. This has meant learning to accept my limits.
For five years, I’ve groped my way through an unmarked landscape between two well-trod pathways for women’s lives. One is the path my mother followed: the ancient tradition of home-centered self-sacrifice, in which such notions as saying no, talking about money, and having boundaries are irrelevant, if not immoral. Then there’s the feminist road I’d taken for nearly 40 years: going out into the world to earn a livelihood, express myself creatively, and live a self-actualized life. But if I followed this path slavishly, I realized, I’d be in danger of denying my deepest emotional bonds. I wouldn’t be able to live with myself.
No fairy tale of filial devotion and no image in my storehouse of cultural cliches can guide me. I’ve had to learn when to say yes, when to say no, when to ask for help, and when to draw the line.
The Perils of Aiming for Sainthood
Being assertive wasn’t hard for me when, nearly 30 years ago, I helped crash the gender barrier on a city newspaper. Nor did I have trouble speaking out when I walked picket lines, negotiated raises, and participated in give-and-take with my editors. But when it came to family, my backbone melted.
My yeses, at first, brought enormous rewards. Visiting home the year after the stroke, I found my father sitting in the living room, stripped of all the markers of his professional adulthood. Gone were his wallet, his belt, his car keys, his watch, and the ID from the university where he used to teach. I quietly took him on a drive to check out local swimming pools, signed him up with a community van service, and bought him a waterproof plastic watch. By the time I packed to leave two weeks later, he was taking the van to the pool three mornings a week and doing water aerobics on his own. On my last day there, as I swam laps and he did his water walking at the shallow end, he looked over and said to me, "This is something I could really come to enjoy." He looked at his wrist. "It’s so nice having a watch."
That moment was more important to me than most of the articles I’ve written, more valuable than every plaque and hunk of engraved crystal that bears my name. My self-confidence took a leap, and so did my capacity for unconditional love.
In my teenage years and beyond, my mother had frequently called me selfish, and I’d been perplexed and cut to the quick. But I’d gone on to live much of my adult life as a single, childless career woman who loved her solitude, and I worried that my mother’s accusation was right. Now I had become the family heroine. I liked that.
In fact, I liked that so much it took me years to notice that my brothers weren’t carrying much of the load. Middle-aged men whom my mother and I still called "the boys," they rarely visited. Jon, the youngest of us three, had been a long-haul truck driver in southern California and was now "taking a break" and living off his savings. My other brother (I’m withholding his name for privacy) was an impoverished actor who had been estranged from our parents for years. Perhaps in an expression of our female chauvinism, my mother and I neither asked for, nor expected, much from them.
Truth be told, this had a strange, perverse payoff. During one of my visits, as I was explaining my mother’s investments to her for the nth time, she sighed and said, "Thank God I have a daughter. Sons are useless."

Slowly Preparing for Death
Initially, this classic, sexist, and voluntary division of labor didn’t bother me. To the degree that I thought things through, I figured that we faced a short-term crisis, not a new life stage that would require of us new language, new roles, and the stamina of marathon runners. Although neither my brothers nor I put our thoughts into words, I think we assumed that my father would pretty much recover within a year or so — or die.
Things dragged on. My father’s heartbeat slowed, and doctors implanted a pacemaker, practically guaranteeing that this damaged man will live far beyond his ability to care for himself.
When my mother couldn’t sleep, I was the one who looked up her medications in the Physicians’ Desk Reference and had trouble sleeping myself. When her financial adviser mistakenly sold a chunk of high-interest bonds, it was I who got my mother to fire the woman and helped her choose someone better. The time I spent on family business bit into my earnings. The second post-stroke year passed, and the third began.
I’ve heard it said that quick deaths are easier on the dying and harder on their families. Slow deaths, they say, are harder on the dying but give family members more time to prepare, talk and accept. Within limits, that has been true for us. Exhibiting the stoicism, dignity, and patience that are part of his legacy to me, my father has doggedly settled for little victories and accepted losses. He learned to fasten his belt again, to comb his hair, to brush his teeth. With the help of a speech therapist, he returned to his computer and wrote compelling passages about being wounded by shrapnel in a foxhole in Italy during the Second World War. An old colleague from the university regularly took him out to lunch.
A Mother’s Love
At the same time, my mother grew stronger. She is descended from French Huguenot refugees who fled to South Africa, and with the toughness of her ancestors, she adapted. She hired a woman to give my father a shower three mornings a week. She learned to balance her checkbook and started doing it far more faithfully than I ever have. She became more accepting of human frailty, including her own. She took over my father’s computer and signed up for Netflix. She reestablished her morning routine of meditation and yoga. In my home in California, I returned to sleeping through the night.
As she grew more confident in her dealings with the outside world, I grew more confident in the natural kindness of my heart. Talking to her on the phone, I sometimes felt the protective softness mothers must feel. Finally, it seemed that my mother and I had erased decades of pain. I kept saying yes, and the approval I got in return was like a drug.
Then my father had another small stroke. He could no longer remember how to get his computer to open Microsoft Word. Not long after that, the honeymoon between my mother and me ended. I came for a visit, got the flu and extended my stay until I got on her nerves. I cooked my own meals in her kitchen and borrowed a pair of socks, which I returned without washing. Finally, irritated by my thoughtlessness, she stood on her doorstep and shouted that I was "selfish, excessive, and disgusting." I could have been a teenager again, standing in the cold, tears filling my eyes. There on the doorstep, as alive as ever, were my ancient angers and griefs: my craving for my mother’s love and my fury at not getting it.

Hard Lessons in Setting Limits
I left in a depressed fury, staring out the window of the plane as it flew west, ticking off resentments. When my brothers hinted that they needed money, my mother gave them cash: $1,000 here, $500 there. But she had insisted that I pay separately for a Burt’s Bees lip balm that I’d put into her grocery cart. The old strategies of female altruism — help out, don’t be petty, it’s only money, she’s got enough on her mind — were no longer enough.
After I got home, I took a walk on the mountain with a close friend I’ll call Audrey, a successful artist in her 50s who manages finances for a widowed mother and a brother disabled by muscular dystrophy. She had recently had a stare-down with her mother, and she advised me to do the same.
Audrey had been staying at her childhood home in West Palm Beach when, one evening, the bedroom door burst open and her mother flew in, scolding her like a teenager for being on the phone past 11 p.m. The next morning, Audrey sat her mother down at the kitchen table. "I’m 50, and I’ve been taking care of myself for a long time. It isn’t your business when I go to sleep," she said. "If you ever walk into the room without knocking again, I will stop coming here and stop helping you. Do you understand what I’m saying?"
Her mother first tried to hold on to her old maternal power, saying, "Well, I am your mother." Audrey looked her in the eye and would not let the topic drop until her mother explicitly promised not to barge in again. (She hasn’t.) It was a necessary upending of the generational hierarchy, as brutal in its way as the physical knockdowns that sometimes occur between violent fathers and their strapping adolescent sons.
I was too upset to confront my mother face-to-face. Instead I wrote a letter demanding an apology and detailing her small but humiliating slights. She found my letter searing but shrugged off her behavior as "just impatience."
After that, I didn’t talk to her for months. I even flew east on business without telling her. On a train from Washington, D.C., to New York City, I heard the conductor call out "Meriden," the station five miles from my parents’ home. My stomach was in knots, but I didn’t get off.
A few months later, my mother sent me some newspaper clippings and then a letter and a book. She surmised I’d been east and hinted that she missed me. One day I called her. That Christmas I visited. My parents had settled into a manageable, though constricted, rhythm. A week later, reconciled and relieved, I flew back to my writing, my mountain and my partner, Brian.
Stepping Back
That spring, my father started losing his sight. After a trip to the pool, he could not remember how to get home and wandered instead down Main Street. Some months later, he went out for another walk, and my mother found him crumpled in the driveway, one eye covered in blood. A CT scan at the local hospital showed more bleeding in his brain, and he was taken to a crowded university hospital an hour away. There my 82-year-old mother stayed up all night with him while he lay delirious on a gurney in a hallway; they waited nearly two days for a bed.
She cried to me over the phone — he was being neglected, she didn’t know what to do. She needed an advocate. She needed a driver. She needed me. But I was exhausted, and Brian and I had booked a nonrefundable week in a cabin in the mountains.
It was time to say help instead of yes. I called the older of my brothers. He wouldn’t give up an upcoming acting workshop but was willing to go to my parents’ a week later. I said thank you instead of "I’ll do it."
Brian and I went off to our rented cabin, and I had a good, restful time. My brother, meanwhile, stayed east for three weeks, where he and my parents talked late into the night. He gave them emotional support that I realized was often far more skillful than mine. I had believed I was indispensable. Now I’d stepped back, and my brother had stepped forward.

Love and Money — and More Love
Family growth follows a zigzag path. A month later came another opportunity to put my foot down. My mother told me over the phone that she was giving my brother Jon $20,000 to buy the Jaguar he had told her would "improve his self-esteem." For years I’d felt guilty for being more financially successful than my brothers. Now I was done with guilt. I told my mother that unless I had a vote — and a veto — in major money decisions, I was going to stop managing the family assets.
At the same time, Jon began fiercely lobbying my mother to pay me for the hundreds of hours of family work I had done. I’d developed a tyrannical sense of grievance, he said, and it was poisoning the well and compromising my ability to be fair. At first, my mother called the idea ridiculous. Two months later, she came around. I still feel uneasy being paid by my family — shouldn’t I be pitching in out of the goodness of my heart? But now I can pay for bookkeeping and housecleaning, so I can help my parents without working through every weekend.
The way we deal with money is the most obvious change in our family, but not the only one. I listen more to my brothers. I ask them for help. We are now, and will always be, an imperfect family, but we’re doing our odd dance together with a lot more grace.
At my insistence, my mother did not fund the Jaguar. Instead, she gave all three siblings an equal chunk of cash, and agreed — again, at my insistence — that future gifts will be equal. Jon went back to work as a truck driver and saved his paychecks. Last week he got the first car loan of his life and bought himself a burgundy Jaguar with a tan leather interior.
The Tipping Point
I’ve learned, meanwhile, that I have to keep speaking my mind. Let me tell you about my mother’s recent visit to my home in California, the first she’d ever made without my father. My brother, the actor, picked her up at the airport. She got out of his car full of energy, dressed in her trademark black jeans and black-and-white scarf, as chic as ever. But I noticed she did not insist on her usual hour of yoga the next morning. I was shocked to see how bent she has become from osteoporosis. When we sat down for dinner, she put a pillow on her seat. I fed her expensive cheeses and put flowers in her room. I found her, as ever, entrancing and nerve-racking. I was delighted to see her.
She didn’t take over my disorderly household. But without criticizing, she brought little touches of order to the chaos, lining up the salt and pepper shakers, clearing off counters. I took her for short walks and showed her my office. My brother spent hours with her: They grew closer than they had been in years.
The final stage of my parents’ lives is bringing about reconciliations that I never would have predicted. Not long before my mother flew back to her exhausting and lonely life with my dad, she and my brother and I went walking along a California beach. After the sun set, we dropped in at a restaurant, and there we were, sitting in front of a gas fire in a beautiful yellow room, enjoying a feast of mussels and scallops and salads sparkling with dark red beets and white goat cheese. Apropos of god knows what, my mother said, in a hauntingly familiar combination of envy and disapproval, "The life you and Brian live is luxe." I could feel something coming. "There’s a lot of waste in your house," she said.
I felt the little bomb detonate, as if underwater, but it was my brother who called attention to it. "That’s rude," he said. There was a small silence. "It’s insulting and critical," I added. There was another small silence. But this time my mother didn’t come back with "You’re oversensitive." Instead she apologized, several times. It warmed my heart, and I forgave her.
It was a small moment, but it showed us at our best: my mother humbling herself, my brother supporting me, and me being my mortal self and not an invulnerable daughter-saint. I still marvel at my mother, not only because she is elegant in a way I will never be, but also because, at the age of 82, she is still growing. And I marvel that at 57, I am capable of changing too.
 
 
Katy Butler’s writing has appeared in The New Yorker, Vogue, Tricycle, and the Science section of The New York Times.
 
Originally published in MORE magazine, May 2007.

First Published Mon, 2009-04-06 18:10

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http://www.more.com/relationships/attitudes/good-daughter-becoming-family-caregiver