I listened to an interview with Maggie Nelson about her new book, On Freedom: Four Songs of Care and Constraint, in which she explains the word “care” has become popular in corners of the art world. I had thought I was original in my exploration of “care” in my writing. But Care is having a (niche) moment. Nelson says, “caring and coercion often exist in a knot.” The person receiving care can be at the mercy of the caregiver and vice versa as well.
This week my mom called to discuss how we might cover the costs for a professional caregiver for my dad. She had researched a NYC government program that is supposed to provide a small salary for family members serving as primary caretakers but discovered these programs inexplicably exclude spouses, who are the most likely relations to find themselves in this role. Without this help my mom spends nearly every waking second caring for my dad without compensation or assistance.
My dad has Lewy Body Dementia. This is the same illness Robin Williams was diagnosed with before he killed himself. The disease impairs cognitive and motor functions. It causes paranoia, delusions, and vivid visual hallucinations. He sees Joe Biden outside the door with a machine gun, faces in the trees, piles of bodies on the kitchen floor.
For a long time, there was no explanation for my dad’s ailments. We thought he was just really, really stoned. During a family trip to Los Angeles, I was relieved to discover he had bought a vape pen at the dispensary because it provided an explanation for his worse-than-usual spaciness and lapses in short-term memory. “I thought you were demented,” I told him. He was sitting by the pool in his swim trunks. He laughed it off and asked me to bring him another scotch.
While my dad’s illness progressed slowly—the onset is usually a decade-long—it seemed to happen all at once. One day we noticed he had developed Parkinson’s-like symptoms: a rigid gait, trouble balancing. While my dad had often had depressive episodes, he was suddenly very depressed. While he had always been a little sentimental, he was newly prone to tears. While he was often stoned and spacey, he now seemed perpetually confused. And while my mom had always cooked and cleaned for him, he was now incapable of the most basic household chores. He stopped playing guitar. He stopped working out. He stopped writing.
A week after X and I broke up, my mom called and asked me to “watch dad” while she went to a doctor’s appointment. I resented the idea that my dad—an adult—needed to be “watched.” I didn’t want to go.
“But he’s never been able to take care of himself,” I complained to my mom.
I tried to make the visit as pleasant as possible, incentivizing myself with a $6 latte and chocolate croissant. I kept reassuring myself, “this won’t be so bad.” But when my mom answered the door, I knew it was bad. My dad was behind her, his hair disheveled, chest concave. He wasn’t wearing a shirt. His legs were bear but he was wearing black leather dress shoes. He reached out to hug me and I withdrew from his touch, frightened. There was an unfamiliar look in his eyes: vacant yet distressed. His jaw was slack.
“Why does he look so insane?” I asked my mom.
“He’s sick,” she said.
*
This summer, Lefteris and I went to see his family in Greece. The next month, I went to Los Angeles, where my sister and my parents had rented an Airbnb in Beverly Hills. I hadn’t seen my parents in six months. I was overwhelmed, and I did my best to check out.
I chewed CBD mints and swam each morning. My mom bought me coconut milk and vegan key lime pie from Erewhon. She tucked me into bed at night. But nothing felt good. In the middle of the night, I would hear my dad shuffling around the house, wailing, calling for help.
While my brother-in-law “watched” my dad, my mom and my sister and I went for occasional excursions: we had cocktails and got our nails done in a strip mall where the other businesses advertised every possible kind of cosmetic service: teeth whitening, Botox, false lash application, Brazilian waxing. We had sushi and tacos and drove home, watching perfect pink sunsets out the car window. But oh, how I loathed LA and its delusional ignorance of the inevitability of deterioration and death. Death is nowhere and lurking everywhere in LA.
A week after I arrived, Lefteris and I broke up over the phone. I was sitting on the carpeted floor of the Airbnb, resenting LA more than ever for its prevalence of carpeting. My dad knocked on the door and I yelled “leave me alone!”
“Why do you hate me?” he replied.
At the beginning of my relationship with Lefteris, his attention and affection gave me patience. Now I had very little.
“Because you’re annoying,” I said back.
I wasn’t sure what was making me most distressed: the breakup or watching my dad struggle to stand up and sit down. I experienced my own capacity for callousness and cruelty. I watched my mom organize his medications and help him put on his clothes and I knew I would leave again for Europe. My mom told me she might not have stayed with my dad if it were not for his illness. “He’s never been easy,” she explained. “It’s like he’s become a more magnified version of himself.”
I asked my dad to play me some of his old songs on the guitar, but he forgot the lyrics to most. He played a song he had written for my mom thirty years ago, which included a lyric about all the adventure yet to come in their life together. Could they have imagined this?
In 2012, my parents went to see Amour, a film about a man who cares for his wife after she has suffered a debilitating stroke. They came home from the theater laughing at the film’s morbidity.
“Would you do that for me?” my dad asked my mom.
“I don’t even want to think about it,” she said.
I don’t want to think about it either. I’d rather dwell on my breakup. It’s been painfully drawn out. But usually I feel there’s nothing left for me to say about losing love. I’ve experienced it so many times before. I’m bored of clinging to a shirt or an abandoned toothbrush or the memory of how someone once touched me tenderly in bed. I cradled the sweatpants he kept at my apartment like a baby.
I lingered in the good memories for the duration of my time in LA. I went hiking alone in the mornings. I would walk uphill, nauseous, and tired from the heat. In a haze of tears and sweat, I reminisced about the times Lefteris had sung to me or kissed my face. I adored so many tiny, simple things about him: the movement of his hands as he washed dishes, how his accent sounded when he said my name and, for some reason, “I know.” The night he first told me he loved me I was euphoric. Completely high. Days later, we went to his friend’s apartment for dinner and got drunk. During a game of charades, we used the sharpie to write messages on each other’s arms: “I know, I know, I know.” When we went home that night he asked me, “how do you know I’m what you want?” I never questioned my wanting him. My want was all-consuming. I gave him every part of myself.
During those LA morning hikes, I chose not to think about Lefteris’ uncharacteristic cruelty and sullen distance. In Athens, we got into a fight at the Parthenon. Over two thousand years of history surrounding us but none of it interested me. It was over 106 degrees. The outskirts of the city were burning, blowing ash through the windows of the apartment we slept in, covering all surfaces in a fine soot. There were too many early mornings when I begged him to come back to bed while he smoked on the balcony. Smoke all around us: in the apartment and in the sky. “How’s hell?” a friend asked me.
The nights in Beverly hills were cool and quiet. I would sit on the bed next to my dad while he watched old episodes of Fawlty Towers. One night I couldn’t stop crying. I kept thinking, I am single, underemployed, and underachieving in my career. I am 33 years-old and have nothing to show for myself.
“You’re sad about Gene?” my dad asked me.
“That’s not his name,” I said. “Where did you come up with that?”
“Wasn’t it Gene?”
“I’m not sad about Gene,” I lied.
“I’m sad because I’m getting older and nothing good is coming,” I said with a teenage sort of irritability.
“Don’t worry,” my dad said, “You’ve still got a cute face and a slim figure.”
*
Back in Berlin I watched the original Scenes from a Marriage and its adaptations. I’ve become obsessed with Liv Ullman’s performance. When her husband leaves her for another woman, she hides her anger. Instead of screaming, she helps him pack his suitcase and makes him breakfast. She wants to care for him even while he is hurting her and abandoning her. Perhaps she does this out of love and selflessness, perhaps she’s merely demonstrating her utility. In the next episode he returns for a visit, and she tells him how she continues to worry about him. She tells him he can’t move abroad because he’ll be “so scared and unsure of himself” without her. She throws her arms around his neck and sobs while he stares ahead, disinterested. It is excruciating.
It hurts too much to think about my dad and his increasingly frail body and weak voice. Or how he cries as he struggles to put his foot in his slipper; how he asks me to stand outside the bathroom door while he pees in case he slips.
And when I think of Lefteris, or Gene, as we can call him now, I worry he is lonely and sad. I wonder if someone is taking care of him. I still want it to be me. I wonder if he is caring adequately for himself. While touring in South America, he called to tell me he had gotten sick. I thought: my baby, my poor baby. You broke my heart, but I only want to cook for you and hold you. In trying to care for him now, I am saying, I would be there for you, I would put your shoes on. This compulsion to care may not come from selflessness but from a similar need to prove my worth in his life and as a woman in the world.
Starkly honest and poignant portrait. 💛
I like your writing. I also like that you dad, despite certain faculties lost, never lost his appreciation for Fawlty Towers.