7 Moments Every Adult Caring for Their Parents Goes Through
Photo: Gabriel Moisa/Thinkstock
My father believed his house in Connecticut, situated by a brook, was the most perfect place. He loved puttering around in it, trying to fix gadgets with duct tape or ward off marauding critters in a makeshift, invariably futile, way he called potchkying. But as he entered his 90s, the house became too much. It was time to go.
And thus began the scramble. My brother and sister and I made lists of retirement homes. We took countless tours, my mother in denial, my father heroically agreeable even as he brainstormed ways to avoid moving. But no option was perfect. We finally decided, out of exhaustion, on the least unpalatable place.
I took a picture of my father on the day he moved. He seems to be saying I've got this. It was the last photo we took of him. When the car pulled up to his new home, he tried to lift two bags from the trunk and fell, breaking his hip. He never got in the front door. He wound up in a rehab facility, where he went from confused to furious to resigned to lost in the mists of senility. Five months later, he died.
My father was always a skeptic about everything but family. He liked to repeat the old Yiddish saying: "Man plans, God laughs." All the agonizing we'd done, all the arrangements we'd made were as effective as trying to fix gadgets with duct tape. Not long ago, I looked up potchky. It's from the Yiddish patshke, meaning "to work in an amateur fashion for little gain." Our earnest planning was our familial potchky, a well-intentioned mission that veered horribly off course. I think my father would have understood.
Only after the local police started charging $40 for answering each false alarm did this hard truth set in: Mom had to move. She was calling 911 at least once a week. Dutifully, the cops would rush in to investigate yet another burglary, only to find Mom's "stolen" wallet between the seats of her silver Lexus or in the pachysandra in the backyard. Almost as often, fire trucks came roaring up her driveway, only to discover a hard-boiled egg scorched in an enamel pot on the stove, the smoke thick enough to set off the alarm my mother couldn't hear from her disheveled bedroom.
Mom was in the middle stage of Alzheimer's, a point where she had enough functioning gray matter to pretend that everything was fine. "You don't know what you're talking about!" she'd snap at the mere suggestion that she might want to move from her suburban house into the city 45 minutes away where my brother and I both lived. "I want to stay here." For months, we argued, reasoned and begged. Still she refused to pick an apartment.
So with the help of my brother and my mom's sister, we hatched a plan that at the time felt incredibly clever: We'd move Mom out of her house without telling her. I rented her a two-bedroom apartment less than a mile from mine, close enough that I could check in on her often and big enough to accommodate the in-home caregiver she'd eventually require. My brother hired the movers who would empty out the house she had lived in for 47 years. My aunt lured her into spending a few nights at her place, while we rushed around making her new home appear identical to her old one, a challenging task given that we were swapping a French Tudor for a modern high-rise.
When the stained Persian rug we knew she couldn't live without didn't fit, we had the entire base of a stone fireplace chiseled away to make room. When the low marble shelf that had run along the back wall of her living room proved too long, we called a carpenter to shorten it, then arranged her knickknacks and photographs on top exactly as they had been at home. Japanese fishing floats filled the crystal bowl on her dining table, catching the sunlight through the window exactly as they had for the past four decades. In our bleary, deluded eyes, we had done it; in one expansive leap of magical thinking, I even thought Mom might be grateful.
Of course, Mom wasn't grateful. Or happy. Or even for a moment fooled. She has Alzheimer's, but she's not stupid. Indeed, I was the fool for thinking she wouldn't notice, or wouldn't mind. This is where my caretaking had led me, to a place where I couldn't tell the difference between what was genius and what was insane.
Of course, I could have just left her in her home, like she wanted. Maybe she would have wandered off into traffic or perished in a fire ignited by yet another forgotten meal on the stove. Or maybe she would have been fine.
Now, there's some magical thinking.
Photo: creatas images/Thinkstock
Sent: June 2, 2014, 3:55 p.m.
He's in the hospital with a urinary tract infection. They told me he's pretty lethargic, but his vitals are good. Yesterday he was talking about how he'd kill himself if he could. That scared the folks at Pinecrest, so they put him on suicide watch and called in a psychiatrist to evaluate. Aargh.
Sent: June 5, 9:24 a.m.
Subject: Re: Dad
I visited today, and he seemed in good spirits, probably because his doctor was young and blonde. They're giving him antibiotics and trying to come up with ways to help him move his bowels. How was L.A.?
Sent: June 8, 2:48 p.m.
Dad's feeling better, judging from the marching orders he just gave me: get him more of "those barrel candies," which I guess means root beer barrels. He also said to order him some movies "on the ticktack," which I think means Netflix.
Sent: June 17, 9:08 a.m.
Subject: Another UTI
Well, he's back in the hospital. They've got him on antibiotics, and they don't know how long he'll be there. He's hounding the doctor for his typewriter and "papers," whatever they are. Says he has something important to write. He also wants his copy of One Hundred Years of Solitude, which I'll pick up on the way out there. He misses you. Come when you can.
Sent: June 20, 4:16 p.m.
Subject: Re: Another UTI
Dad just called. He says he wants me to come out to Pinecrest so we can discuss ending his life. Good times!
Sent: June 24, 6:34 p.m.
Subject: Re: Another UTI
He gave me a copy of the obituary he wrote for himself. I lack the words.... Then he gave me his plan: "I'm going to stop eating. I'll have a light breakfast, and then I'll eat less throughout the day. It should take about five or six days, I figure."
Sent: June 28, 1:18 p.m.
I saw Dad this morning. No mention of suicide. Just wanted to know how my work's going, how the girls are doing and could I get him some more Nips. And a bourbon and a steak.
Sent: July 3, 5:52 p.m.
They tuned the piano in the dining room at Pinecrest, so I wheeled Dad down to play it. It wasn't going well because his fingers are so stiff. I thought a duet might help, so we played "Heart and Soul." It was like a scene from a movie: I slid in on the bench next to him and draped my arm across his shoulders. We must have played the song six times. I cried. :)
Becoming a parent's caregiver is a lot like becoming a parent. No one hands you a manual, just a life to love and protect in new, uncharted ways. Except with parents, you have to negotiate that very sensitive space between being helpful and making them feel helpless—between your humility and their humiliation.
One of the things I do to "look after" my mother and myself during her doctors' appointments is take cell phone pictures of her feet—in sandals, in socks, barefoot. I take pictures of her feet with my feet lying in bed next to her, with doctors' feet, with lab technicians' feet. I do this sometimes to keep my head down so she can't see my tears as the nurses draw her blood for the thousandth time or as she is being slid through another diagnostic machine that looks like a coffin. But I also take these pictures to remind myself what it's like not just to be my mother's caregiver, but to be my mother.
There's a Haitian Creole expression, pye poudre, which is used to talk about people who have traveled long and far. My mother's feet have walked the circumference of my entire world, from Haiti, where we were born, to the United States, where she came when I was 4, leaving my brother and me in the care of relatives until she could support us and until U.S. immigration officials finally cleared our reunion, when I was 12. I used to count my age in Mommy years, subtracting the eight she and I spent apart. In early adulthood, I was the one who was pye poudre, venturing away from my mother: going to graduate school, falling in love, having babies of my own. These days, though, my mother and I find ourselves constantly side by side, our four feet lined up, as if waiting to head out on yet another trip, this time together.
Caring for my mother has meant supporting her as she faces some very difficult moments, but it has also meant embarking on a communal journey through bad and good times, which neither of us will ever take for granted.
Photo: Natalia Davydenko/Thinkstock
My mother was blonde and very beautiful—her looks were often compared to Greta Garbo's— and she spoke with a charming middle-European accent. Although she never graduated from high school, she was very wise and had good instincts. She was also warm and vivacious, and people liked her immediately. Indeed, many people loved her.
We were very different. I was studious and quiet. Although slightly mystified by my accomplishments as a writer, my mother was always proud of me. (After her death, I found a scrapbook she had kept with all my book reviews—good and bad.) Despite our differences, we were very close.
My mother died after a long and painful illness, though fortunately, and according to her wishes, she died at home. I, her only daughter, lived nearby. After she became sick, I visited her nearly every day. At some point during her illness, I suggested that I read out loud to her.
"All right," my mother said without much enthusiasm. "But what will you read?" She sounded wary. She was not interested in literature, had never read—nor probably heard of—James Joyce, Dostoevsky or Beckett.
I thought long and hard before choosing a book from among my favorites: To the Lighthouse? No, too sad; Mrs. Ramsey dies. Joan Didion's Democracy? No, too disjunctive. Finally I decided on The Portrait of a Lady. I began:
"Under certain circumstances there are few hours in life more agreeable than the hour dedicated to the ceremony known as afternoon tea..."
Pausing, I looked over at my mother. Was she listening?
Sitting up in bed, dressed in her pretty pink robe and matching nightgown—until almost the last, appearances were very important to her—she was smiling. "I've always liked a cup of tea in the afternoon," she said.
I nodded and continued, reading the description of Lord Warburton: "a noticeably handsome face, fresh-coloured, fair and frank, with firm, straight features, a lively grey eye..." I felt my mother's interest growing.
Isabel Archer makes her appearance in the second chapter and is described as lovely and confident. After a week or two of listening, my mother, her voice still firm, said, "Isabel should change her mind and marry Lord Warburton. He's so good-looking, and he owns a house with a moat."
All of a sudden, I realized that the novel I picked was a big mistake. How would I explain Isabel's disastrous choice—Gilbert Osmond? This was not a novel with a happy ending. Au contraire. Nevertheless, I read on.
My mother complained that Caspar Goodwood was a bore; nor did she like pushy, noisy Henrietta Stackpole, and as for untrustworthy Madame Merle, my mother said, "She's a real social climber."
The description of Gilbert Osmond is ambiguous: his face, his head, was sensitive, he was not handsome, but he was fine... My mother was immediately suspicious. "He reminds me of your father's friend who married a woman twice his age because she had a lot of money."
By the time I was halfway through The Portrait of a Lady, my mother was too weak to sit up. She was sedated, and most of the time her eyes were closed, but when I stopped reading, she would open them again.
"Go on," she said softly.
In Rome, Isabel Archer meets Gilbert Osmond; Ralph Touchett, her cousin who is also in love with her; and Lord Warburton, whose offers of marriage she has repeatedly and perversely refused. It soon becomes clear that she will choose Gilbert Osmond. "Do you mean will she accept him?" Ralph Touchett asks Lord Warburton.
For my mother's sake, I decided that this could not be. My voice quavered a little as I altered Henry James's elegant words:
"'No, she will not accept him,' Lord Warburton answers Ralph Touchett. 'I am going to marry Isabel Archer.'"
"I knew it," my mother whispered.
I could always tell which nursing home staffers had a gift for eldercare when they remarked to me on how pretty my mother was. Now ravaged by Parkinson's, she had often, in her 20s, been taken for Ingrid Bergman. So I felt reassured when one of the underpaid people attending to her displayed the imagination to peel away the years, and the disease, and see my mother the way she'd been before losing the ability to walk, to dress or feed herself, to speak above a whisper.
She remained remarkably cheerful in the nursing home—free from the rage that beset a number of the other residents. But for all her adaptive goodwill, she was beleaguered, and I began to wish that the ordeal would come to a peaceful end. I also, however guiltily, wanted it to be over for me. I was tired of witnessing her decrepitude, of seeing my own future decline prefigured, weary of smelling disinfectant and single-serve pudding cups, no longer amused by the genial male nurse's holiday reindeer antlers. I'd even had it with the weekly pet visits called "Touch and Cuddle," a phrase that I, horrified, took to mean something else entirely when I first saw it on the activities schedule in the lobby.
One night, a friend told a story of how her sister, trying to ease their dying and hard-of-hearing father toward death, had wound up shouting at him: "IT'S OKAY TO LET GO, DADDY!" My partner suggested that on my next trip to the nursing home I try the same approach, albeit at a lower decibel level.
During that next visit I sat beside my mother, silently telling myself that surely—after years of immobility, dementia and hallucinations, with her weight hovering around 80 pounds—she would welcome my benign suggestion. But as I got ready to make it, I noticed her attempting, with a certain urgency, to tell me something. I leaned in to listen while she gathered the muscle strength to form the complete sentence she wanted me to hear: "I don't want to miss a thing!"
She wasn't kidding. I would go home and keep on visiting. She would go on living, at some mysterious level, on her own terms. The average nursing home stay for women is 31 months; hers lasted eight-and-a-half years.
I had never been to the third floor before that afternoon, though my mind had wandered there many times. Just a floor below, residents still clung to normalcy, greeting visitors, raising frayed voices for "This Land Is Your Land" sing-alongs. But the third floor had an air of resignation. The third floor was for patients who, while there in body, were usually gone in spirit.
The head of the facility had called to tell me it was time. Now, walking to my mother's room, I passed a row of wheelchaired women, their heads nodding against their chests. From one bedroom, I heard a muffled cry.
My mother's head snapped up as I walked in. "With whom did you consult before consenting to have me moved here?" she said, her voice cutting.
"Shhh, Mom," I whispered. My chest tightened; I felt wretched and guilty, but also a distinct sense of hope. "This is absolutely ludicrous, being put up here with these...people."
Since my mother had developed dementia at age 70, there'd been occasional glimmers of the sharp-witted, warmhearted woman who had taught literature in Afghanistan and Iran, chaired a university women's studies program and revered what she rather quaintly called "the life of the mind." But her own mind had become clogged with tiny protein deposits that unsteadied her sense of reality. She hadn't been entirely present in years.
"Oh, honestly, Carla," she said. "This is just...humiliating." I was speechless. Could she be getting better? "Bingo and potpourri!" she crowed. "Is this the promised end?" On the second floor she'd baby-talked through reruns of '70s sitcoms. Now she was quoting King Lear, Shakespeare's exploration of senility and daughterly loyalty. Her eyes weren't filmy; they sparkled. Her words weren't slurred, but crisp. I stroked her head. Mom was back.
"I'm so sorry," I said. I'd failed her. "I'll ask. I'll see if we can turn this around."
I wheeled her to the TV room and switched on a Rita Hayworth movie, remarking on the cut of the dresses, the dialogue's double entendres—details she once would have caught before me. "Your father loved this scene," she said, as Hayworth vamped in a black strapless number. But by the commercial break, her eyes were glazing over. She said, "Do you know where Daddy is? I haven't heard from him for months." My father died in 1993.
I turned away to hide my distress. She soon forgot her question. By the time a staffer took her to dinner, she was pliant and distant. Silent through her meal, she pushed her veal Parmesan and cherry pie around her plate.
"How are you?" I asked gently.
"I fine!" she said, oblivious to the fat splodge of cherry filling on her chest. Leaving later, I met her former caregiver Carsanders. "I thought she might be getting better," I stuttered. Change can temporarily fire up the brain synapses, Carsanders explained. For a time, a person can seem like her old self.
But she'd never seen it last.