The Conversations We Never Had -1

Part 1: How We Talk About Alzheimer’s

My father was diagnosed with Alzheimer’s disease in 1990.

I had just become a nurse.

Shortly after his diagnosis, my parents moved across the country to live with my family. They lived with us for years, and yet I cannot remember a single meaningful or serious conversation any of us ever had with my father about having Alzheimer’s.

It was a different time.

My father knew he had Alzheimer’s. He went to the doctor, and he heard the diagnosis. I know he was scared—I saw him cry.

We didn’t talk about diagnoses the way we do now. We didn’t say the word out loud or sit down and ask, How does this feel to you? We carried on, hoping for the best.

My dad participated in an Alzheimer’s study. I don’t remember the details of the study—only that I drove him and my mom there, and afterward we would eat at Red Lobster. I do remember how anxious the study made him. The testing upset him so much that we eventually stopped going.

Looking back, that may have been the only time my father truly showed us how Alzheimer’s felt to him.

My father’s reaction was entirely typical.

People with dementia hate those tests—the ones that ask you to do things you can no longer remember how to do, while someone watches and takes notes. The frustration. The stress. The fear. Sitting next to people in the waiting room with more advanced dementia. But we still didn’t talk about it.

At home, my mother would get angry when my dad put his shoes in the refrigerator or forgot something obvious. She’d yell at him for doing something “stupid.” I’d yell at her for yelling at him. Then she’d yell at me, insisting he could remember and was doing it to make her mad.

Then I would sing a verse of “There is beauty all around when there’s love at home,” and we would all go back to pretending nothing had happened.

That was how we lived with Alzheimer’s.

It was the biggest elephant in the room. And now, decades later, that silence is what breaks my heart. My father never got to say how it felt to lose his memory or say what was important to him.

Even when we placed him in a VA memory care unit, we didn’t talk about why.

We lived in the same house, and I don’t know whether my mother ever discussed moving to the care facility with him. I didn’t ask.

I took two Xanax before we went to the nursing home. I made my brother come; he drove.

We didn’t ask my father’s opinion.

We didn’t prepare him.

We didn’t talk about it.

When we were leaving the care center, I told my dad he was going to stay there. I still remember the sadness and fear in his eyes.

By then, he was so confused that I don’t know how much he would have understood even if we had talked about it. But I know this now: we should have always been talking about it.

Today, with decades of hindsight—and years spent advocating for residents’ rights—I grieve how little autonomy people with Alzheimer’s were given, and how little guidance families had. Alzheimer’s was treated as something too frightening, too hopeless, or too complicated to be discussed.

And the conversations we never had may be what I grieve the most.