Until Then, I’ll Take the Calls-4

    Part 4 : How We Talk About Alzheimer’s

My younger brother called me today.

His aphasia is severe. He knows what he wants to say. The words are there—but they won’t come out. He struggles, pauses, circles back, and gets frustrated. Still, he wants to talk. And I want to listen.

Even when he can’t get the words out, we still try to talk.

When he gets stuck, I tell him, “It’s okay. You have aphasia.”

Aphasia is when the words get tangled in your brain. They’re in there—but they won’t make it to your mouth.

Sometimes he repeats the word after me.

“Aphasia. Aphasia. Aphasia.”

After repeating it, he said, “I’ll forget the word.”

And I said, “You most certainly will—because in addition to aphasia, you have dementia.”

And we laughed.

It isn’t funny. Not really. But what do you do? Sometimes you laugh because the alternative is unbearable. And at least we were laughing together.

What matters is that we can talk about it.

He can tell me how much he hates it.He can tell me what scares him.He can say the things that are hard to carry alone.

And I can hear him.I can name it.I can acknowledge it.

We never talked about Alzheimer’s with my father—about how he felt, or what it was like for him. One thing we’ve learned since then is to talk about it. I learned with my dad’s Alzheimer’s that not saying it does not make it go away; it just makes it lonelier.

I was physically with my father until the end, but my emotions were buried deep.

My brother lives two thousand miles away. One day, he won’t remember how to call me. Eventually, we won’t be able to communicate at all.

Until then, I’ll take the phone calls—as long as he remembers to call or answer, and as long as he keeps trying to talk.