Losing My Dad, Little by Little

My father’s dementia has already taken so much from our relationship — but not everything.

Photo-Illustration: the Cut; Photos courtesy the author
Photo-Illustration: the Cut; Photos courtesy the author
Photo-Illustration: the Cut; Photos courtesy the author

My father is convinced that my mom, his best friend and wife of 56 years, isn’t who she says she is. She’s a woman impersonating her, a man in a female suit, or a robotic dupe. “That’s not Rima,” he whispers sometimes when she walks by. “Who is that woman?”

“It’s Mom,” I tell him. “It’s Rima, your wife.”

“No,” he says and laughs a little like I’m pulling his leg. “You can’t tell me that’s her.”

It’s been like this since early September. He’s at the beginning of a battle with dementia and is progressively losing his ability to understand his surroundings, let alone the nuances of an increasingly complicated world. His mental decline has had a crushing swiftness that left us, his family, stunned, then scrambling for resources. (I’ve since learned that a cliff-drop into the disease isn’t uncommon.) In early July, he was a little muddled, his conversations punctuated with self-aware asides such as “I’m sorry. I just can’t find the words.” But by August, he was saying things like “I want to love you, but I can’t, because I know you’re not who you say you are.”

His world has dwindled to just a few carefully vetted locations: the house he shares with my mom (a comfortably worn-in log home in the woods of Northern Virginia); the hilly quarter-mile driveway that we, his family, insist he walk along at least once a day; the local IHOP (his restaurant of choice); and his twice-a-week dementia day care. That last one, a drop-off center where cheerful aides in white jackets try to keep their meandering guests engaged in board games and song time, is a new addition to his routine that, frankly, upsets him. He is repelled by the vacant, ghostly demeanors of patients who are more out of it than he is. But the visits are nonnegotiable; he gets some socialization, and my mother, suddenly an overworked full-time caretaker, gets some much-needed breaks.

Dad was always one of the brightest guys in any given room, armed with a fun, teasing sense of humor, the kind that draws most people in but also likely pushed away a few who mistook his confidence and frequent sarcasm for arrogance. He found the perfect good-humored straight woman in my mom, a whip-smart musician and public-school teacher who didn’t mind that he ended every big meal by wadding up his napkin into a ball and bouncing it off her nose from across the table. In fact, she laughed every time. Both accomplished musicians, they played duets in the living room — Mom on clarinet, Dad on piano — and at home often burst into song together, one or the other taking the harmony with a slight nod of the head.

His wit could sometimes wound, like the time he poked fun at the way I drew people — I internalized it was definitive proof that I’d never be a good artist. I was 9 years old. Mostly, though, he was patient, kind, and willingly involved with my two brothers and me. When I couldn’t sleep as a small child, he guided me through inventive visualizations that had me imagining myself floating blissfully in outer space. When I got the flu in college, he drove the four hours to my apartment to cook and clean, sleeping nights on a wilting camping mattress on the dirty wood floor. I knew, always, that he had my back.

I’m trying, in my own way, to do the same now. But dementia makes people unpredictable — and mercurial: One day he wants to eat all day and wash the kitchen windows with hand soap he has stolen from the bathroom; the next, he hardly touches his food and can’t seem to stop talking. I’m never sure how much I’m helping.

A few weeks ago, Dad asked me, “Did you know that they’ve made my arm robotic?” His pale-blue eyes conveyed grave seriousness. Waving his arms, he told me, “If you pulled back the skin, you’d see. Now it’s all metal from my wrist to my shoulder.” I nodded, arranging my face into a benign “Is that so?” expression. He waited for me to respond.

We were sitting together in his log-lined living room. The room’s wide windows overlook a river, a crooked offshoot of the Potomac, that is always mud brown–hued. He was in what everyone in my family calls “Dad’s chair,” a comfy, sagging seat on which, up until a few months ago, he read the Washington Post cover to cover every morning. I was a few feet away in a teal leather swivel chair, our feet propped up on the same wide leather ottoman. I thought of how to respond to his wild assertion. To him, it felt as real as the watch on his wrist, which meant gently ribbing him — a mainstay of our old father-daughter relationship — would only confuse him. “Well,” I finally said, “maybe they’ll bring your real arm back tomorrow.”

My dad and I have sat and talked for hours from these two chairs hundreds of times. The chairs were where we’d hash it out. And by it, I mean everything — family issues, parental dilemmas, politics, climate change, art and photography, ancient civilizations, past and current wars, the billionaire class, the impacts of Amazon and big retail. I treasured our talks, and I feel like he did too. We easily transitioned from one subject to the next — diving deep on some, traipsing lightly over others — and often lingered.

Now, most of our conversations are centered on his struggle to make his jumbled thoughts linear, with me (at his request) working to help him unriddle them. I’ve been surprised at how easy it has been for me to slip into the roles of comforter and protector, but as a mom of two kids, there’s a familiarity to them. And sometimes I come close to enjoying the strange narratives that fly out of his mouth — they can feel plucked from an arcane fable or quirky children’s book: “If you tell the pig to stay with you, he won’t,” he told me last week, out of the blue, in the kitchen. “So feed him four carrots in the morning and tell him he’s a good pig at night if you want him to stick around.”

“Okay, good to know, Dad,” I said lightly and continued to unload the dishwasher.

Creativity, and an ability to say with three words what most people can’t convey with ten, was what made him great at his job. In his past life, my father spent 33 years as a staff writer and editor at National Geographic, at which he became an expert in geography and adjacent topics ranging from ancient diasporas and European governments to the origins of nations and the nature of religions.

Today, his mind fixates on war and atrocities. He was a young child and political refugee from Estonia during World War II, and he hears deafening bomb explosions sometimes that are so loud he clamps his hands over his ears. “Did you hear that?” he’ll say, his eyes big and panicky. No one hears it because the boom, louder than a Las Vegas casino collapsing to the ground, exists only in his mind. He has horrifying dreams about drowning or people being hanged. When he wakes up in the morning, still groggy, his mind conjures an ancient woman sitting by his bed, silent, or dozens of cats scampering around him. He has said to us all, “I feel sometimes like I don’t know what’s real.”

His moments of clarity can sometimes evoke just as much anguish. At this stage of his dementia, he still has periods of clear thought. And in these times, he comprehends that he has lost control of something fundamental, something precious, and it terrifies him. He cries, his head in his hands. We attempt to soothe him and help him understand that he’s cared for. Seeing him in so much pain and confusion makes me feel like my organs are being twisted into tight knots. He knows, I think but never say aloud. He knows he’s losing his mind. Outwardly, I try to project confidence. “You’re okay. We’ve got you,” I tell him, my hands on his shoulders and my eyes boring into his, willing him to believe. My acts of steely self-assurance won’t stop the ceiling from crumbling in, but it’s all I know to do.

To stave off his anxiety, I take him walking outside, where I scramble to distract him. I point out pretty patterns on leaves, a busy squirrel in the trees, or compliment him on the new Hoka sneakers my brother bought him. I grab his arms when he loses his balance, guiding him back onto the path. Sometimes when he stops to catch his breath, I hug him hard.

I work like crazy to hide the fear and sadness I feel when I’m with him. And hiding anything from my dad feels fundamentally unnatural. Our relationship was always an unfiltered one. But dementia has damaged his emotional compass, so if I look worried, he wonders if he should worry. If I broach a troubling topic (like the war in Ukraine, the last major world event he could discuss with clarity), he might absorb only slivers of what I’m saying and end up anxious about something he can’t even define.

Fortunately, he usually allows us to guide him out of his depressive fogs, and his days aren’t all panic and sadness. He has always loved children (and still does) and greets mine with hugs and a whooping “Hello!” when they walk through the front door. He relaxes by solving simple puzzles with my mom. He makes himself fat peanut-butter-and-jelly sandwiches on white bread and marvels over the impossible deliciousness of plastic cups of tapioca pudding, a favorite dessert. He can’t watch his favorite show, Jeopardy!, anymore because “They changed the format completely!” but he still laughs at reruns of The Andy Griffith Show.

My dad’s profound creativity, a cornerstone of his personality, is still kicking. Every morning, he painstakingly layers two to three different cereals (Grape-Nuts is always the “base”) with fruits to create “the ultimate breakfast.” In the doctor’s waiting room, he critiques the composition of the crappy art on the walls. When I hugged him good-bye recently, he advised me not to “shoot any leopards” on my way home (solid advice). And on slow walks through the woods, he sees Greek gods in the clouds. When his dementia first took hold, I instantly mourned our conversations, selfishly, fearing they would abruptly stop. “Who am I going to talk to like I talk to my dad?” I asked my husband in bed one night, anxious. (A great guy of few words, he squeezed my hand in response.)

Looking back, our differences made for lively back-and-forths. I’ve never been great at retaining historical facts, and I’m hazy on timelines and world leaders beyond U.S. presidents and despicable southern senators. But I could always ask him kindergarten-level questions about fraught topics such as the Israel-Palestine conflict and the British royal family without fear of ridicule. When it came to pop culture, Dad was an admitted dud — in fact, he often needed me to complete his and Mom’s weekly crossword puzzle (“Twenty-five across is ‘Zendaya,’ Dad”).

We still sit in the chairs. But the laughs are smaller, and our rapid-fire banter is gone.

Instead, I ask a thousand pragmatic questions (“Did you eat?” “When’s the last time you napped?”) and offer up inane observations about our surroundings (“The sun is so pretty when it filters through the windows this time of day”). The things about him that have remained the same — his voice (tenor, slightly raspy), gestures (slow, expressive), and general presence — comfort me. My dad’s still here, and that fills me with gratitude.

It doesn’t surprise me that his inability to find the right words often devastates him. Throughout his life, language has been his passion and his most important tool. What’s been surprising is how much is left between us when the conversation runs dry. The void has heft. Our sturdy friendship, which has always run parallel alongside our father-daughter relationship, leaves us in decent stead to suffer sad silences together.

Lately when I sit next to him in the chairs, I give his foot, which is always propped on the ottoman, a squeeze “hello” and smile brightly. Sometimes I enter the room doing a stupid little dance to make him laugh. I ask him how he is, and he slowly searches for the right words or quickly rattles off a jumble of nonsensical ones. I willfully jettison the past, knowing I can retrieve it later, and follow him down the rabbit hole.

Losing My Dad, Little by Little