'How Do You Tell Your Kids That You've Got Alzheimer's?'

Jan 24, 2015
Originally published on October 4, 2015 2:47 pm

This is the first in a series, Inside Alzheimer's, about the experience of being diagnosed with early-onset Alzheimer's disease.

In 2009, 59-year-old Greg O'Brien was a successful journalist and writer living in Cape Cod. He was healthy and happy — he exercised every day, made a good living, spent time with his three children and wife.

But he had also started to notice changes in himself. He was forgetting things, and his judgment sometimes seemed to fail him. Meanwhile, his own mother was dying of Alzheimer's disease.

And that year, he was diagnosed as well.

In the five years since his diagnosis, O'Brien has turned his writer's focus on himself and published a memoir, On Pluto: Inside the Mind of Alzheimer's.

For as long as he's able, O'Brien says, he'll continue to talk about what he's going through.

"There are millions more [people] out there who are suffering through the stages of early-onset Alzheimer's who are afraid to seek help. They're afraid to talk to people," he says. "If I could help give them that voice so maybe things get a little better for them, then that's good."


Interview Highlights

On being diagnosed with early-onset Alzheimer's disease

I was diagnosed in 2009. It was scary, and I remember sitting in my neurologist's office. He had all the test results and the clinical tests that I failed and the brain scan and all that, and he's sitting next to my wife. He said, "You have Alzheimer's."

So, the doctor looked at me, and he said, "Are you getting this? You have a battle on your hands. I'm talking to you as if you're terminal."

Now, I have a strong faith and I know I'm going to a better place, but I started thinking of my wife and kids. And I could feel water running down the side of my face. And they were my tears.

On telling his three children he has the disease

How do you tell your kids that you've got Alzheimer's? It sucks.

I had planned this family meeting, so all the kids were home and we're going to go out to dinner. I knew I had to talk beforehand.

So I'm in the bathroom, you know I felt a little bit like Luca Brasi in The Godfather, practicing my speech. "On the day of your daughter's wedding ...."

I could hear, "Daddy, where are you?" So I came out and I went over the fact that their great-grandfather, my grandfather, had died of Alzheimer's and my mother, which they knew. And now it's come for me.

They were stunned, they didn't quite know what to say. And then [my son] Conor cut through it and said, "so Dad, you're losing your mind." And everyone laughed; and I laughed, and I said, "You know what, that's enough talk for today. Let's go to dinner."

And that's what we did. We started talking about the Boston Red Sox and the Patriots and the Celtics, and I felt more comfortable in that.

On speaking publicly about having Alzheimer's disease

It's difficult doing interviews like this. It's like getting up for a big sporting event. You know, I say my mind is like my prized iPhone: still a very sophisticated device, but one with a short-term battery; one that breaks down easily, pocket-dials, and gets lost. So in writing, and in communicating, and in doing an interview like this, it beats the crap out of me. But I'm feeling like, in doing it, I'm beating the crap out of Alzheimer's.

There is a stereotype that Alzheimer's is just the end stage when you're in a nursing home and you're getting ready to die. And the point is no, that's not true.


Next week, on Weekend All Things Considered, Greg O'Brien will explain how his life has changed since his diagnosis.

Copyright 2015 NPR. To see more, visit http://www.npr.org/.

Transcript

ARUN RATH, HOST:

It's ALL THINGS CONSIDERED from NPR News. I'm Arun Rath. Today we hear from a man who's chronicling his own experience with Alzheimer's disease. Greg O'Brien is a writer and journalist.

O'BRIEN: You ask me the question of who I am, there are days when I'm not quite sure. But in reality, my name is Greg O'Brien. I'm 64 years old. I've been married 34 years. We have three beautiful children. At age 59, I was diagnosed with early onset Alzheimer's. The disease stole my maternal grandfather, my mother, and now it's coming for me.

I was diagnosed in 2009. It was scary. I remember sitting in my neurologist's office. He had all the tests results and the clinical tests that I failed and all that. And he's sitting next to my wife. And he said that you have Alzheimer's. The doctor looked at me, and he said, are you getting this? You have a battle on your hands. I'm talking to you - excuse me, this is hard to talk about -as if you're terminal.

Now I have a strong faith, and I know I'm going to a better place, but I started thinking of my wife and kids. And I could feel water running down the side of my face, and they were my tears. How do you tell your kids that you got Alzheimer's? It sucks. I had planned this family meeting so all the kids were home, and we were going to go out to dinner. I'm in the bathroom, you know, I felt a little bit like Luca Brasi in "The Godfather" practicing my speech, you know, on the day of your daughter's wedding. And so I could hear, Daddy, where are you? So I came out and, you know, went over the fact that their great-grandfather, my grandfather had died of Alzheimer's and my mother, which they knew, and now it's come for me. And they were stunned. They didn't quite know what to say. And Conor kind of cut through it, and he says, so, Dad, you're losing your mind. And everyone laughed, and I laughed. And I said, you know what? That's enough talk for today. Let's go to dinner. And that's what we did. And we started talking about the Boston Red Sox and the patriots and the Celtics. And I felt more comfortable in that.

So about a week later, we had a family outing in Coronado Island. And I had just basically assigned my son to be my guardian should something happen to Mary Catherine, and made him power of attorney. So I said we need to talk about this, and he didn't want to. He wanted nothing to do with the discussion. So I said, OK, I'll be right back. And I went inside, and I got 80 pages of medical notes that talked about my diagnosis. And I said, Brendan, you need to read it. I don't want to read it, he said. So I started reading it. And he started yelling and screaming. I don't know what words I can use here. He started saying bull [bleep], bull [bleep], bull [bleep]. And then he said, expletive, bull [bleep]. And I said, Brendan, you need to get this. He grabbed my medical records, tore them up and threw them off the balcony. And then turned to me and said, Dad, it's bull [bleep] 'cause I know it's true. Excuse me. He put his head in my chest. Here's this guy now in his late 20s, and he cried like a little boy.

It's difficult doing interviews like this. It's like getting up for a big sporting event. You know, I say my mind is like my prized iPhone - still a very sophisticated device, but one with a short-term battery, one that breaks down easily, pocket dials and gets lost. So in writing and in doing an interview like this, it beats the crap out of me. But I'm feeling and doing it. I'm beating the crap out of Alzheimer's. And there is a stereotype that Alzheimer's is just the end stage when, you know, you're in a nursing home, and you're getting ready to die. And the point is no, that's not true. There are millions more out there suffering through the stages of early onset Alzheimer's who are afraid to seek help; they're afraid to talk to people. And if I can help give them that voice so maybe things get a little better for them, then that's good.

RATH: Greg O'Brien is a writer on Cape Cod. His memoir is "On Pluto: Inside The Mind of A Alzheimer's." We'll be following Greg as he chronicles his experience with the disease. Next week, he tells us about how his life changed since his diagnosis five years ago.

O'BRIEN: More and more, I don't recognize people. And now people understand that, and God bless them, they come up and they introduce themselves to me. These are people I've known since childhood.

RATH: That's next week. And you can read more about Greg O'Brien at our website, npr.org. Transcript provided by NPR, Copyright NPR.