This Is Us

Watching My Father Die

The quiet, crushing weight of Alzheimer's

My Father and I near the end.

For the first 12 years of my life, the idea of a “dad” was pretty esoteric. I knew I technically had one, but I’d often go years without seeing him. He was off-limits, “broken.” He had something called “alcoholism” probably because of his experiences in a place called “Vietnam”—neither of which I really understood at age five. All I knew by age 12 was that I’d given up on him. I’d spent too many afternoons sitting on the front porch waiting for him and now understood he just wasn’t coming.

During those years, my mom raised six of us kids alone, an indescribably Herculean task. Through sheer intelligence, grit, and grift, she kept us fed and with a roof over our heads—sometimes it was a hotel roof, sometimes the roof had holes, but we mostly remained dry, and the times we got wet made us all the stronger for it.

After a summer living six of us in a single motel room, she managed to scrape together enough money to make a down payment on a land-contract home for $35,000. As one would expect, it was a disaster—but it was ours. Exposed wiring hung from ceilings, literally every wall had holes, baseboards were nonexistent, and touching the refrigerator and sink at the same time meant a pretty serious electrical shock. So she did what any cash-strapped mother would do and hired a sketchy local handyman to try to patch up the potentially deadly issues. That’s how we met David.

David could fix just about anything. He also was an accomplished chef and former boxer. His overindulgent love of beer and pot had led to a bit of a downward slide and he started day laboring as a painter and handyman.

We were curious kids, and David let us watch as he fixed things. Like magic, over the course of an afternoon, he’d turn dangling electrical wires of death into a functional dining room light. Holes in walls disappeared in a flurry of drywall dust and paint as if they’d never existed. Pots poised to catch leaks from the roof returned to the kitchen after his high-wire shingle and tar act. He was fearless and seemed to understand how everything worked. It was mind-blowing. Through it all, he was kind and patient and talked to us like we mattered.

He genuinely liked us kids right away, a feeling we weren’t overly familiar with from the limited number of adult men who’d passed through previously. We implicitly understood we were a burden to anyone my mom dated — at least until David came into our lives.

It was such a seamless transition that it was as if he’d always belonged with us.

Over time, David started hanging around even when he wasn’t working. He’d stay for movie nights, cook us dinner, and sometimes he was somehow already at our house before we’d wake up, and he’d stay long after we’d been sent to bed. I don’t remember when I realized he and Mom were actually together. It was such a seamless transition that it was as if he’d always belonged with us, and we accepted it without much fanfare.

One night, I walked into my mother’s room to find her and David asleep on the bed with my younger brother curled up next to David. After a few minutes, I crept silently back to my room, and without knowing why burst into heavy, uncontrollable tears. I tried to sob silently, but David heard me and came into my room and comforted me, trying to ascertain what was wrong. I couldn’t find words to explain other than finally mustering, between heaving breaths, “I just want you to be my dad.”

The next day, he proposed to my mom. They were married not long after and David graduated to “stepdad.” At the time, I certainly didn’t understand the absolutely gargantuan responsibility he was willingly choosing. Marrying a woman with six children meant stepping into a world with a whole lot of mouths to feed, school supplies to buy, wounds to nurse, and worries to absorb. We never felt that from him though—not ever. Even as he decided to stop drinking, he was an ever-steady source of calm, wisdom, and food.

Food was important to David. It was how he showed love, how he cared for others. An accomplished chef and kitchen manager, he gave me my first real job as a dishwasher and prep cook at the country club where he worked when I was 14. For the next 10 years of my life, I worked primarily as a line cook, able to travel the country and chase my own dreams because of the skills he taught me.

We weren’t easy kids to raise, myself especially. Residual anger over my biological father and the constant stress of a family clawing its way out of poverty gave me a penchant for the violent and the negative. I gravitated toward other angry kids and eventually gangs and drugs. Through it all, David carefully, gently kept me from going over the edge while my friends died or wound up in prison.

He was my Dad in every way a person could be and in all the ways no one else had ever bothered to be.

Somewhere in the midst of all of this, he stopped being “David” and just became “Dad.” There was nothing about him that wasn’t our dad through and through. He was my Dad in every way a person could be and in all the ways no one else had ever bothered to be.

He went back to school and got a master’s degree in public administration, which he used to advocate for low-income communities. He helped to gather resources for residents and defend them from an overly aggressive police force. His impact on those neighborhoods will be felt long after we’re gone. My parents’ civic engagement shaped me more than any other single force in my life.

My bond with David was incredibly strong. He wasn’t just my dad, he was a fellow restaurant kitchen veteran, a comrade I’d marched alongside and stuffed envelopes with, and more than anything, a friend.

My dad and my niece.

Despite my use of past tense, my dad is still alive. The past tense feels appropriate, however, because Alzheimer’s has stripped him of almost everything. His deterioration accelerated at a rate none of us could’ve expected. Hospice care has begun, and his time here will likely not be long.

Between bouts of soul-crushing sadness, I’m trying to be grateful. Grateful for the years I had with him, for his influence and the lessons he taught me, and for the fact that although he’s no longer lucid, he has at least been spared the terror and fear many Alzheimer’s patients feel.

I’m grateful he was here long enough to meet my wife, whom he adored instantly—both because she’s amazing and because of how happy she has made his son. I’m grateful he got to meet my stepchildren, as I’m now a stepfather to four of my own.

He is the bar by which I measure myself. Ultimately, I always come up woefully short, but in doing so, I can at least see ways to do better. Whenever I’m at a loss as a parent or partner, I ask myself what my dad would do. Sometimes the answer involves offering to make someone something to eat.

A few weeks ago, just as I was leaving from a visit in what could be his final moment of lucidity, he stopped me and said, “In case I can’t say it later, I’m proud of you.” I think I’ve cried every time I’ve thought of that moment since.

Nothing prepares you for Alzheimer’s. It is such a wildly unfair and destructive disease, robbing the ones we love of all the parts of themselves. In the moments we least want them to feel alone, they often don’t recognize us anymore, and it’s heartbreaking in a way very few things are.

We do what we can, we love them, we honor them, and we revel in the memories they can no longer recall themselves. And we try to remind ourselves that those moments are no less meaningful even when forgotten.

UPDATE: On Thursday, February 18th at 7:28pm, after an incredibly courageous fight, my father David passed from this world surrounded by his family at home. He is loved and missed beyond measure.

I’m a Developer, Activist, Husband & Father. Romani-American. On Twitter @Ryan_Nehring or at nehring.ryan@gmail.com. Top writer in Politics, Design & Tech.

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