Growing up, my sister and I spent afternoons and weekends with our boat-captain father while our mother worked long hours as a lawyer. We did our homework on sailboat decks, played hide-and-seek in marine-supply warehouses, and quietly practiced our knots as my father did business with ship chandlers, sailmakers, yacht brokers, and deckhands. Our summers were spent sailing along the mid-Atlantic coast, polishing fittings for a quarter a piece, and taking turns keeping watch with my father on night sails. He was the boat’s skipper, our capable captain, and we were his favorite crewmates.
Now, twenty years after my father first taught me how to tie a bowline (behind my back!), both of our lives look vastly different — especially his. About two years ago, we received a phone call from his neighbor: my father had gotten lost in the neighborhood he’d lived in for 27 years. My sister and I had moved away from our hometown of Miami, but we’d already noticed the signs that something was wrong with our father, like when he claimed someone had broken into his house but it was his key jammed in the lock, or when he’d lose the dog but then realize she’d been in the yard all along.
A year later, on a visit home for a friend’s birthday, I realized that my father was no longer capable of living alone. His dog hadn’t been fed in a while, his sink was full of maggots, and his medications were an incoherent mess. I scheduled an emergency visit to his neurologist, who requested a brain scan. My father’s brain was suffering serious hemorrhaging. The diagnosis: vascular dementia.
My father was not yet 65. In a spur-of-the-moment decision, I moved him and his dog across the state and into the duplex I shared with a fellow grad student; I was only a few weeks away from graduation. I spent those weeks making sure my father didn’t get lost in my neighborhood and praying that his dog wouldn’t bite my roommate.
That summer, my sister and I shuffled my father and his dog between Florida and her home in Atlanta. He’d always made us promise back when he was still whole and healthy that we’d never put him into assisted living — we tried to avoid it at all costs, but soon it became clear that it was our only option. At the end of the summer, I would be leaving for a yearlong Fulbright fellowship in Colombia and my sister would return to her job as a schoolteacher. We found a foster family for the dog and an assisted-living facility for my dad. Our mother did her best to help us out with our father, but their marriage had ended a decade and a half earlier.
Struggling to remain master of his own domain, our father fought mightily against the new status quo. He threw his computer against the wall when he couldn’t figure out how to use it and put all matter of flotsam into his microwave. Two months and three fire-department visits later, the facility informed us that my father could no longer stay.
After that, he lived at home with a caretaker until he developed a bad UTI and spent several weeks in the hospital. By the time he was released, his dementia had worsened significantly. The only lockdown facility that would take him with a catheter cost thousands of dollars more than our monthly budget. We gave it a shot, thinking that the high cost meant quality care; we were wrong. Although it was the most luxurious memory-care center in Miami, the caretakers rarely knew where my father was when I visited. Often, I’d find him wandering the vast hallways, his pants soiled and a bewildered expression on his face. With only a dozen caretakers overseeing 160 dementia patients, it was difficult to find anyone who knew what was going on. The next facility promised us that they could handle his difficult behavior, but they called the cops within a week when he got combative with the staff. He ended up in the psych ward, more disoriented than ever.
More than half of dementia patients display aggressive tendencies. Most of them, though, are not as spritely and fit as my father, who is proud of his firm handshake, jet-black hair, and wrinkle-free skin. When he decides he doesn’t want help showering, he’ll make his decision known. He’s still the rogue captain he’s always been, except he’s no longer at the helm anymore.
Midway through my Fulbright fellowship, I resigned from my position and my partner and I returned to Miami. Thirty years old and still trying to figure out my own life, I’d become my father’s legal decision-maker, medical proxy, financial planner, full-time secretary, and primary advocate. I went from having my own life to drowning in bureaucracy as I attempted to manage my father’s derailed world. Long lines at the Social Security office, long waits on hold with Medicare, and surprise bills from hospitals, tax collectors, and unpaid creditors. My sister, fiancé, and I struggle to stay on top of my father’s ever-changing list of medications as he bounces from one facility to the next.
What my father needs most is compassion and patience, but most assisted-living centers are in the business of collecting Social Security checks (which he doesn’t receive) for the least amount of work possible. With each successive facility, I’ve learned what questions to ask: *What’s your ratio of caretakers to residents? What will it take for you to throw my father out? Will we get back our deposit if things don’t work out?*
My dad’s been living in his current facility for almost three months — a record in our book — but we already had to persuade the administrator to back down when she gave us a 45-day notice to move him out (he developed a staph infection and accused an aide of stabbing him). These days, when I’m out running errands with my dad, I stuff diapers into my purse and snacks for the long waits at the doctor’s office. I help him with his belt and buttons, like he once did for my sister and me. I bribe him with cookies so he won’t throw a tantrum while I’m on the phone. Like a parent who monitors her child’s milestones, I note each regressive step that my father takes. But sometimes he seems to make progress back toward his old self, and it cheers my spirit for days. “He remembered that we were going to the doctor today,” I’ll report to my sister. Or, “He used the toilet by himself.”
My father taught me everything I know about adventure. He was barely out of high school when he moved to Corsica to run a sailing school. From there, it was easy to get jobs delivering boats around the Mediterranean, down to West Africa, and across the Atlantic, picking up languages along the way. He instilled in me his unwavering sense of wanderlust, and I thirsted for his stories about harpooning fish off the Mayan coast, sailing across the Atlantic without satellite navigation, and trading with the indigenous people of the Brazilian Amazon. Alongside my father, I’ve traversed the ancient Corinthian Canal, marveled as hundreds of dolphins swam in our bow wave, and witnessed the true meaning of a starry night far out at sea, with no city lights to spoil the darkness.
Before my father’s diagnosis, my decisions — and indecision — affected only me. I’ve never been adept at long-term planning, preferring instead to fly by the seat of my pants. In my twenties I bounced from continent to continent, finding work as I went and crewing for my dad between gigs. Like him, I’ve acquired my own arsenal of stories. Now, as my father’s proxy and advocate, I can’t operate that way anymore. My father’s illness is a constantly moving target that requires stability and dependability. Any amount of chaos furthers his cognitive decline. The man who once knew how to navigate by the stars has lost complete control of the ship.
I’m engaged to a wonderful man who knew my father when he was still himself. We’ve become my father’s mainstays, the only ones who can coax him into the shower when four different aides have failed, or assure him that his caretakers aren’t trying to hurt him. My partner and I have dreams of living on a sailboat and starting a family, but looking into the future, we wonder what is possible considering the burden we are now shouldering. We’ve already changed our immediate plans of moving to my fiancé’s home country of Germany, where he had a job waiting for him.
The past year has been one of mourning as I grieve the loss of the man who raised me. And although he won’t be able to teach my children how to make a bowline or navigate by the stars, my father still knows who I am. Like a mother who doesn’t want to miss the critical first years of her child’s life, I don’t want to miss these last years of my dad’s journey. And who knows? Maybe we can get him back on a sailboat someday.
* (1) is a writer from Miami with a deep affinity for tropical fruits.*