Greg O’Brien is an award-winning journalist with more than 35 years of experience reporting for dozens of outlets. He’s contributed to the Associated Press, USA Today, the Boston Herald, and the Providence Journal, among many others. He’s also authored, and published more than a dozen books, and that’s just a small part of a miles-long resume.
In addition, he’s a husband and a father of three, and about six years ago, he was diagnosed with early-onset Alzheimer’s. Now, he’s chronicling his life with that diagnoses in his latest book, "On Pluto: Inside the Mind of Alzheimer’s." It’s an exceptionally candid and sometimes raw account of his struggle with this devastating disease.
Adam Reilly sat down with O'Brien to talk more about the book and what made him decide to be open about a struggle that's so personal.
GREG O'BRIEN: I had a front-row seat for my grandfather’s death [from] Alzheimer’s, and I was the family caregiver for my mother, and I was there when she died. And people have a misperception of the stereotypes of Alzheimer’s. They think it’s the end stage, when you’re in a hospital, and you’re two months away from dying. There are millions of people walking around, like me. You just saw the movie, “Still Alice,” Alice Howland, the fictional character, but she’s wholly accurate. She’s a professor at Harvard, and they’re trying to struggle through life.
In my case, 60 percent of my short-term memory can be gone in 30 seconds. There are times when I don’t recognize familiar people, including my wife on two occasions. There are times when I don’t recognize where I am. I pick up a phone up and don’t remember how to dial, and I get so angry I throw it across the room. Or in the summertime, should summer ever come again, I pick my lawn sprinkler up, and not know what it does, or I go into tremendous rage. And then there are what people call the misperceptions, which are the hallucinations, seeing things that aren’t there.
And it’s very difficult to talk about it because I decided to strip myself naked. I was there with my mother when she died, and I said, you know what, this is going to stop. We’re going to start talking about this in more personal terms. As I journalist, I felt that I had no choice. It was—you know—I’ve covered a lot of big stories in my life, and yet this was the biggest story I may write about.
ADAM REILLY: Let me ask you about how you deal with those moments of off-centeredness. That phrase doesn’t do it justice, but the sort of moments you were talking about a minute ago. If you, say, pick up a phone, and can’t remember how to dial it, or if you happen to wake up next to your wife, and for a moment you can’t place her as your wife, how do you respond in the moment?
You respond in the moment in anger because there’s something inside you that tells you you should know better, and you can’t get at it. And you’re angry, because you should know better. And you don’t know what else to do but to strike out in rage. And sometimes you cry. And it’s a total loss of self. It’s a death in slow motion. It’s like having a sliver of your brain shaved every day. You get up in the morning, and you’re not quite sure who’s going to show up, but you have to keep pressing on. God has given us all different levels of fight, and shame on me for not fighting at the level that I can fight at.
How do you strike the right balance between fighting against what you’re going through and accepting it as something you’re not going to be able, ultimately, to beat?
Well I’m a runner. And I run outside, I run on the treadmill. And I’ve drawn the analogy in this disease as running a race against Alzheimer’s. And on the treadmill at one point—I’m 64 years old—and when I was 62, I got my mile down to five minutes and 30 seconds, and that was out of clear rage and running against Alzheimer’s. To answer your question, I know there’s a time when it’s going to overtake me. So I don’t look back; I look forward. But it’s being chased by the bogeyman, and I can see the progression. I know, in a few years in the future, that I won’t be who I am. And in many ways, I’m not today who I was.
I wanted to ask you about that. That’s another question that’s posed in the book, which seems to me like a huge question, and that’s the extent to which the self, or the soul—whichever term you want to use—remains when someone is, as you put it, having a sliver of their brain sliced away again and again and again. Do you feel like you’re the same person you were 10 years ago?
No. In some ways I’m a better person. I’ve lost something and I’ve gained something. I’m not here to proselytize with you. I was raised Irish Catholic, third-generation Irish American, sometimes I go to an evangelical church, but don’t tell my relatives in Dublin, because they’d stone me. I have a strong faith in God, and anything I do right now is because of that. I believe there’s a journey from the mind to the heart—that when we die, what is left behind is the soul, and that doesn’t change. And I would tell my mother, in her Alzheimer’s, I would point to her heart and say, “Mom, that little girl who grew up in the East Side of Manhattan, who was the mother of 10 children, that women is still alive in your heart. She hasn’t gone.”
When we leave this world, we leave behind our soul. And there is a journey, I believe, that you take from the cradle to the grave, and you reach the place of that heart. And often, in Alzheimer’s, it forces you to find that place in the heart because you can’t find it in the mind.
What is the most important thing you can people who do not have Alzheimer’s about interacting with people who do? What should we know?
First of all, the most important thing are love and touch. Try to reach someone in the heart. Try to tell them that you love them, unconditionally. Don’t correct them. There may be times when you have to guide them, but don’t correct them in a way like a teacher would correct a second-grade student. Because what happens is, there’s a total loss of self-esteem with people with Alzheimer’s from the early stage to the end stage. Often we know better. And when someone is correcting us, it just reinforces the fact that we’re losing our identity, losing our self. And we get angry. So do it in love, and have that relationship, and talk to people.
And touch is so important, whether it’s a touch on the shoulder or a touch on a hand. It’s just that energy, from one person to the next, that tells you that that person loves you, and that person is there for you. That reinforcement is so import in Alzheimer’s.
And I got the impression, reading your book, that you think it’s important for society as a whole to not shy away from talking openly about Alzheimer’s.
We need to make Alzheimer’s popular. Alzheimer’s, the umbrella world for Alzheimer’s is dementia. It has the Latin root of a demon screaming in the woods. “Still Alice,” the wonderful novel written by Lisa Genova, she’s a good friend, she wrote the forward to my book. Julianne Moore just won the Academy Award for best actress, did a tremendous job in bring that to the point of having people understand what real Alzheimer’s is. And—I just lost my place.
You were telling me before—
It’s OK if you want to stay on camera with that. A million times, when I’m talking, I lose my place. What it is, Alzheimer’s is like a loose plug in a socket. And maybe this is a good thing that this happened. You ever want to read a book, and you put the plug in the socket, and the light blinks? And then you push the plug back in, and it blinks again; you push the plug back in; over time, the plug falls out it’s so loose. You put it back in, falls out, put it back in. Pretty soon, it’s so loose, it can’t stay in the plug, the light goes out forever. And it’s that signal. And—I just lost it.
But then it’ll come back, right? Because now I’m going to tell you that, you were making the point before the camera was rolling that that movie was great, but you don’t want it to create a sense of complacency. You don’t want it to make people think, OK, we’re on top of this.
Right. I think it’s extraordinary—I was cheering as loud as anyone else when Julianne won the Oscar. I was cheering for Lisa, I was cheering for Julianne, I was cheering for Maria Shriver. The discussion on Alzheimer’s needs to go well beyond a worthy Academy Award. This was an extraordinary film. It opened the door worldwide to a conversation. Now we have to continue that conversation. We have to make Alzheimer’s popular. There are millions of people who are “Still Alice”s who are walking around with the day-to-day symptoms. I am an Alice without a dress. And every day we have to fight against these symptoms. We need to push the Congress to take this seriously. We need to get people worldwide to start to talk about this because nobody wants to talk about dementia. It’s a scary, scary, scary word.
Read an excerpt of "On Pluto":
My wife finally broke the silence.
“Do you know where you are going?” she asked.
I wasn’t sure on a number of fronts. So, I just kept driving.
The exit for Plymouth came up quickly, an anesthetizing ride north on Route 3 past miles of scrub oaks and pines. I had to call several times to the office of neurologist Dr. Donald Marks to get the directions straight. I was a bit on edge, awaiting results of a SPECT scan brain image test.
On the third floor of a boxy red brick building, Dr. Marks’ office had all the ambiance and accoutrements of a hospital waiting room. Opening the door, I felt as though I were slipping into Lewis Carroll’s Alice in Wonderland where “nothing would be what it is, because everything would be what it isn’t.”
I was dizzy with delusions of what could lie ahead. The office was filled with decent individuals, mostly in their 80s, all with cognitive impairments picking their way through the perplexities of age and a maze of cruel games the mind can play.
At 61, I was the only “young” man in the room (yikes!), and saw myself outside the box of dementia, yet felt trapped within it. I glanced at my wife. Like most couples, we’ve had our ups and downs in marriage, more ups, hopefully, than downs. I felt badly for her. Today was a trip down.
I was told earlier that Dr. Marks, an expert in the study of the mind, gets right to the point. “He’s precisely what you need; a skilled neurologist who will speak directly, no bullshit,” Dr. Conant had advised me earlier, sounding a bit like my dad, who delighted in telling others that he customarily had to drill a piece of granite between my ears just to get my attention.
Dr. Marks lived up to the billing. Knowledgeable, cerebral, and caring in a clinical way, he put me through the paces of more clinical tests: word recall, various supplementary checks on short-term and long-term memory, category naming, visuospatial skills, and other evaluations. I flunked them all. Bottom line: the clinical tests reinforced Elovitz’s forthright assessments, and the SPECT scan identified a brain in progressive decline. His formal diagnosis: “EOAD,” as he wrote in his report. I glanced at it quickly, inverting the first letter, dealing with some related dyslexia, and thought for a moment that he had written, “TOAD.”
“No,” he said, “Early-Onset Alzheimer’s Disease.”
The words cut into me like a drill press.
“I can deal with this,” I said defensively. “This is not a surprise. I can fight it.”
My reporter instincts kicked in. I showed little emotion, just digested the diagnosis on a self-imposed deadline. Facts, get the facts straight. I first thought about my mom, about my grandfather; I knew the deal. I wanted more facts. This was no time for emotion. The vital questions of who, what, when, where, why, and how flashed through my head, which felt little sensation at the moment. I was afraid now to look at my wife, so I stared at Dr. Marks, trying to remain in a state of control that I had just realized was beyond me. After all, I’m a Baby Boomer and we’re all in control. At least, we suppose.
Finally, I gave into the emotion.
I felt Mary Catherine staring at me. I think she must have known all along.
“What do we tell the kids?” I asked her. My voice splintered.
When you’re married to someone for close to four decades—when you’ve been through all the “for better and for worse” throes of marriage, when you have a partner who knows you almost as well as you know yourself, when you’ve been in love, fallen out of love, fallen back into love, and drifted, then at a time like this, little needs to be said. We both knew what the future held. No one had to sky write. We were all about the kids.
Mary Catherine grabbed my hand, we nodded, and then listened to the doctor. The moment is embedded in my mind in a freeze frame.
Dr. Marks, a man of great compassion and incredible intellect, offered support, but got right to the point.
“You need to take the diagnosis seriously,” he counseled me in front of my wife, having been prepped in advance on my aversion to reality. “You have a battle ahead of you. I’m speaking to you as if you were terminal. Are you getting this?”
I was. There was hardly a tone of political correctness in his voice; I needed the reality check. You must know your enemy—study with military precision—to fight your enemy.
Alzheimer’s is a death sentence. The words resonated throughout my mind. I stared at Dr. Marks with the same vacant expression of looking out from the Sagamore. I felt the tears running down the sides of my face. My eyes didn’t blink.
“A most unusual situation of a bright man who had the opportunity to witness dementia in a parent … with self-awareness of early symptoms within himself,” Marks wrote in his initial report, dictated on voice recognition software as if the report were being written in slow motion before me. Marks also observed that a previous brain MRI revealed some “frontal Flair/ T2 changes, consistent with a previous head injury.”
“This may have ‘unmasked’ Alzheimer’s pathology,” he added, “but his genetic loading is striking … The brain SPECT scan is most compelling in clinical context for Alzheimer’s.”
Marks encouraged me to remain as physically fit as possible “as he is to keep his cerebral blood flow out … I suspect he is exhibiting the phenomenon of ‘cognitive reserve’ in which case he may tolerate on a functional basis impairments further into the baseline underlying pathophysiology of the disease longer than one who does not have the same cognitive reserve.”
“The diagnosis has been made, in my opinion,” he concluded in his report, “… I am not sure how much longer he has in terms of being able to reliably and meaningfully provide the quality of work he has put out in the past. The general point is there needs to be balance between a healthy desire to overcome obstacles and yet acknowledge fundamental reality.”
A final word of advice, Marks urged me to meet as quickly as possible with an estate attorney to protect family assets, given the statutory five-year “look back” during which a nursing home can attach personal properties and bank accounts. He also recommended that I designate a healthcare proxy, future caregivers, and assign power of attorney.
In the space of a bleak afternoon, my identity in the real world—my mind, along with the cherished red cedar shingle home that I had built for the family about 30 years ago, the one with the high-pitched, red cedar wood roof on about two acres of farmland off a winding country road that was now a part of a National Register of Historic Places—was on hold.
There wasn’t much more to hear or to say. We left the office and drove home in silence most of the way. The stillness spoke legions. I couldn’t wait to get back over the bridge, my Linus security blanket. Lots to digest quietly in a 45-minute ride home. The assimilation of urgency was choking—bucket lists of cleaning up relationships, end-time planning that we all like to put off, and the strategies of surviving financially, physically, and emotionally. Many before me and many today, I thought, have been captive in such a contorting state of affairs with a range of disabilities, health issues, and timelines. I wasn’t alone. Yet, I felt so isolated.
I felt sad for my Mary Catherine. This wasn’t fair to her. And I couldn’t fix it.
Dammit, I couldn’t fix it!
The tool box was empty. I couldn’t repair my brain. Ever. Not even with duct tape. All my adult life, I had relied on duct tape to fix leaks from the upstairs bathroom in the kitchen ceiling, “repair” broken appliances, hang posters, fix a tail light, repair a garden hose, act as a big Band-Aid, steady a cabinet door, fix a hole in the wall, hold a car door shut or a car window in place, fix a toilet seat cover, hold a choke in place on an outboard engine for the boat, as a wiffle ball, a tool belt, and once, as a last resort, as an ace bandage for a pulled groin to get through the 5K Brew Run one hot August day in Brewster.
“How are you doing,” I finally asked, as if from Mars.
My wife, as author John Gray might put it, is from Venus. I love Mary Catherine, but often she doesn’t want to be confused with the facts; she seeks a safe harbor, as any good sailor does. I fly by the seat of my pants. I find reality far below the surface, bottom fishing for answers. My wife, to the contrary, is more comfortable at sea level. You say “tomato,” I say “to-mado.” A fixture in our marriage, but we ain’t calling the whole thing off!
Well, we have a lot to consider,” she said; an understatement that could fill the Grand Canyon.
I knew. Like me, she felt alone.
Then we came upon the Sagamore Bridge. That’s when the faith kicked in—a bridge to a new reality, a new hope for me. I was going home, sanguine about the fact that I had some answers in hand. But for MC, it was new isolation this side of the Mississippi. Maybe her father was right. As we coasted to the crest of the Sagamore, “the seventh bridge of Dublin,” as it’s called Eire, given the number of emerald transplants on the Cape, I thought of John Belushi in the classic movie Animal House.
“What? Over? Did you say ‘over’?” the unrelenting Bluto Blukarsky declared at the Delta House, urging his brothers to fight on. “Nothing is over until we decide it is! Was it over when the Germans bombed Pearl Harbor? Hell no!”
Germans?
Hey, I was on a roll. So I charged over the Sagamore Bridge with a satchel of denial.
Life goes on, doesn’t it?
