Punch Line: Delivering the Difficult News

I had to tell my children that I was just diagnosed with early-onset Alzheimer's disease, a demon of a disease that had taken their maternal grandfather and grandmother. I learned early on in journalism that if you don't tell your story, someone else will tell it for you.
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The flight to San Diego was peaceful. Departing Boston I tried to leave my baggage behind. It was heavy, lumpy, awkward baggage, the kind no handler wants to toss. Days earlier, I had to deal with difficult unfinished business. I had to tell my children that I was just diagnosed with early-onset Alzheimer's disease (EOAD), a demon of a disease that had taken their maternal grandfather and grandmother. I learned early on in journalism that if you don't tell your story, someone else will tell it for you.

All my adult life, I've made a living with words, but finding the right ones for this exchange was numbing. No parent wants to deliver this kind of message. I fumbled like a freshman English major.

I've always tried to pick my spots in life, and so I decided to break the news shortly before a Fourth of July trip to bucolic Coronado Island for an extended family reunion. I had thought the Pacific wonder of the upcoming trip would distract from this death in slow motion. It didn't.

My wife Mary Catherine dutifully assembled our children on a late summer afternoon a few yeas ago under the premise of a significant family dinner out. All answered the call: my son Brendan, a writer and producer in Boston; my daughter, Colleen, a dedicated teacher of disadvantaged children in inner city Baltimore; and my son Conor, who, at the time, was a sports management major at Johnson & Wales University in Providence, RI.

Consistently, I've been late for such engagements -- a character flaw -- and this was to be no exception. As the kids waited for me in the living room with predictable annoyance, I huddled in a nearby bathroom, reflecting on my talking points and feeling much like Luca Brasi in The Godfather, as the feared enforcer prepared to address Don Corleone on the day of his daughter's wedding. You could cut my angst with a knife.

Docilely, I entered the room.

"Sooooo, anyone want a drink?" I asked, deflecting the reality of the moment.

"Daaaaad, let's get going," Colleen said, with nodding assurance from Brendan and Conor. "It's getting late, Dad!"

"I'm having a glass of red wine first," I said in in yet another attempt to delay. "Who wants one?"

The kids, eyes rolling up to their cerebellums, obliged. My wife, knowing the script, had her Chardonnay in hand.

"Your father has something to tell you," she prompted me.

All eyes were focused in my direction. Stage fright had never been an issue for me, but the words were stuck in my throat. Get to the freakin' point, I thought.

It was a clumsy talk, one couched with broad language that explained the diagnosis, the need for the family to buckle up, and yet leaving room for some hope. The kids, in a sibling way, were stunned -- a kind of quiet shock that hastens the first responders. When you expect freshly caught cod and you get cold dementia, the appetite ebbs. There were questions, many of them, then tears and hugs. No one really wanted to go deep with this. Finally, Conor broke the ice, as the youngest of the family can often do.

"So, Dad," he said. "You're losing your mind!"

"You might say so," I replied.

We all laughed. There was no riposte. Enough said, I thought -- a pregnant pause that gave birth to quintuplets, followed by a collective quiet walk to the car, then on to dinner at Joe's Bar & Grille in East Orleans on the Outer Cape, and talk of sports, the dwarf planet Pluto, and the Milky Way. Perhaps poet Robert Frost said it best, "In three words I can sum up everything I've learned about life: it goes on."

Woody Allen even better: in a wry exchange in his celebrated movie Annie Hall, he put an exclamation point on survival instincts, an anecdote about a guy who goes to a psychiatrist, complaining about his brother who thinks he's a chicken. When the doctor suggests he turn his brother in, the man replies, "I would, but I need the eggs!"

My family needs the eggs.

Flying high above the Great Plains, looking out at the majestic Rockies with blankets of snow still on its peaks, and the palm-dotted hills of San Diego, I felt cleansed. But, as we banked right, over the Pacific, I recalled an ancient history quote from the great Roman Empire scribe Publius Flavius Vegetius Renatus, who cautioned centuries ago, "In time of peace, prepare for war!"

Coronado, Spanish for "the crowned one," is the antithesis of a war zone. Connected to San Diego by a 10-mile isthmus called the Silver Strand, it offers some of the nation's finest beaches and enough natural beauty and gawking potential to satisfy the most judicious traveler. Coronado is a jewel of an isle. I couldn't wait.

The first night on the island, Brendan and I stayed at the Coronado Island Marriott Resort, overlooking downtown and the pristine San Diego Bay. We awaited other family members arriving the following day. After a late afternoon swim, a fresh fish dinner, and a walk along the boardwalk, we headed over to a tavern on the bay for a beer. There was still some unfinished business. Brendan had no clue. I had brought with me all the signed legal documents naming him my power of attorney and my legal guardian, should something ever happen to my wife. All assets, if anything left, would pass to him, to be distributed to the kids. I was to have nothing, as the lawyers insisted, a five-year "look back" to insure a nursing home could never raid the estate, however lean. Brendan needed to know this, and now was the moment. Timing often sucks, even in paradise.

Once again, I couldn't find the right words even over a Blue Moon with a slice of orange locked on the lip of a chilled glass. So, we walked back to the hotel, and I engaged him in conversation on the second floor balcony outside our room -- above a plantation of lush palms and tropical flowers, sifting in the sultry ocean breeze.

I showed Brendan my legal documents. He wanted nothing to do with them. Nothing!

"I don't want to talk about it!" he shouted. "I don't want to (expletive) talk about it!"

"But you gotta," I said. "You have to know, Brendan. We have to talk. You're the oldest boy, and you have to start acting like it. I need you. Get it!"

It was the most powerful confrontation I've ever had with any of my children, one I hope never to repeat. I showed him the documents again. He pushed them away. "This is bullshit! It's (expletive) bullshit!" he screamed.

"Fine, then you need to see something else," I replied, opening the door to the hotel room to bring out another pile of papers. They were my medical records, a word picture of a swan song off a cliff.

"Read 'em," I said, waving the papers in front of his face. "Look at them. They're right here!"

We were both in full rage. Brendan grabbed my medical records, about 30 pages in all, and began to read. He stopped at a page that summarized the neurologist's finding. "The diagnosis has been made in my opinion," the doctor's report said. "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. It may also be helpful if his counselor would help in negotiating more open discussions of his growing limitations with other family members so he suffers less isolation."

Brendan was angry.

"This is bullshit! This is bullshit!" he yelled in a voice that pierced from within.

In primal anger, he ripped the documents into pieces, then tossed them off the balcony. Chunks of shredded paper -- my personal, naked and wrenching medical reports -- fell among the palms like a blanket of snow.

"This is bullshit! That's what I think. It's bullshit, Dad!" he yelled even louder, his eyes now tearing up.

He paused for a second to catch his breath. "It's bullshit, Dad. It's just (expletive) BULLSHIT!" He stopped again, sobbed, paused, then said in a lowered voice, "It's bullshit, because I know it's true!"

He then fell into my arms and cried like a baby. We hugged, talked some more, then went to bed.

I didn't sleep that night. I awoke at first light to the realization, to the horror, that my medical records -- documentation that I was losing my mind, as Conor had pointed out days earlier -- were strewn among the tropical plants and the indulgent pool.

I grabbed a plastic bag, sprinted to the pool area, and began picking up as much as I could -- the clinical reports, my test results, my diagnosis.

My past and my future were now in the trash.

Greg O'Brien's latest book, On Pluto: Inside the Mind of Alzheimer's, is available on Amazon.com and OnPluto.org. He is also the subject of the short film, directed by award-winning filmmaker Steve James, online at livingwithalz.org. In 2009, he was diagnosed with Early Onset Alzheimer's. His maternal grandfather and his mother died of the disease. O'Brien also carries a marker gene for Alzheimer's.

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