On Pluto (8 page)

I began to think about the unsettling memory loss over the last few years: the loss of self and place; the piss-poor judgment; a wholesale loss of filter; the visual impairments; the incontinence, often after performing like a puppet genius before clients; the mental numbness; a complete loss of self-esteem; and the agitation of clinical depression that began as a boy. I thought about that horrifying dislocation months ago while Christmas shopping with my son, Conor, in a Providence mall, not knowing for a half hour where I was or who I was. I thought about a serious head injury years ago that doctors say likely accelerated
earlier dementia symptoms, and about my recent diagnosis of prostate cancer—another medical hand-me-down from my parents. I thought about the rage I felt within.

“So, what's next?” my wife asked, as if I knew.

I kept staring. We all deal differently with challenging times; not sure there is a correct way. Some exhale, some inhale, some just deflect and probe in more pragmatic ways. My wife is a goalie with her emotions. She can deflect, at least externally, the best slap shot drilled at her. It's a survival mechanism that she has passed down to some of our children. But all those emotional pucks, all that vulcanized rubber of denial, mount up and never decay. They just sit there, consuming space.

Mary Catherine was in the nets again this day.

In the back seat, there were some answers, but not the kind built on hope.

“Thanks for your kind referral of Mr. O'Brien,” Clinical Neuropsychologist Gerald Elovitz of The Memory Center wrote just days ago to my personal physician, Dr. Conant. “I know from him that you spent much time discussing his cognitive changes, and the test results here show that they are real.”

Elovitz, who years earlier had diagnosed my late mother, Virginia Loretta (née Brown), with Alzheimer's disease, went on to note, with reference to awaited test results of a brain SPECT scan, “I suspect an emerging frontotemporal dementia becoming more significant over the past 18 months and likely to progress … If there is no frontotemporal dementia, I would then suspect an early-onset Alzheimer's-type dementia.”

In a seven-page medical report, with terrifying cognitive test performance graphs, Elovitz described a person I would have never recognized, but yet had become—all results in analysis in the probable dementia range:

“Mr. O'Brien is younger than 98 percent of the mean norm group age [for dementia], so his below average performance is very problematic … [His] results fell within the range of cognitive
impairment … His seriously impaired score indicates a significant cognitive deficit in learning capacity for new information, and he needed cues on more than half of the test items to obtain the score … General function levels fell in the very poor general function consistent with dementia. Mr. O'Brien's very high agitation level merits concern … The findings here reveal short-term memory function within the first-stage dementia range.”

Some denouement, I thought. What a freakin' loser I am! I had always been an A-brain guy, a good provider, a decent husband, a caring father, and beyond that, a high-functioning, creative mind. For me, it was never about the money; it was all about succeeding in life—paying the bills, taking care of family, and the process of intense thought, problem solving, and inspiration. The Jesuit logic, as my father used to say. Doctors, in follow-up medical reports, noted a “superior intelligence,” a nice shout out, I suppose, but perhaps I could have done more with it. Shame on me for that, all the more, shame now that the dots were not connecting, a disconnect at intervals of alarming proportion. My prized possession was heading to a state of atrophy.

Shit, this sucks!

The pretext was over; strategies and disguises for overcompensating in recent years exposed. But I was aversely at peace with it. Someone was finally listening. Maybe I wasn't alone, home alone. Mary Catherine, meanwhile, wobbly on her emotional skates, stood as firm as she could in the crease of the net, awaiting the next shot. Her head was in the game; protective mask down and no time for small talk.

Elovitz had observed in his report, “I went over these [dementia] possibilities with both the patient and his wife, and he told me frankly, ‘I am not surprised,' and seems relieved that we at least are addressing them head-on.”

Head-on is the only way I've known since I slid down the birth canal. The prone position. The oldest boy in a family of ten,
I learned early on, for example, that if you don't grab for food, face-first, head-on at the dinner table, there will be nothing left. No one is going to feed you.

****

My mother was never a great cook. A second-generation Irish American with close ties to County Wexford, she boiled everything gray. We used salt, pounds of it, as seasoning, and ketchup, poured liberally for supplemental flavoring, just to kill the taste. In the cluttered kitchen of our family home at 25 Brookdale Place in Rye, N.Y.—not far from the Upper East Side of Manhattan where my mother grew up—the pot roast simmered on Sundays from morning Mass until early evening. The hoary smell that wafted through the three-story stucco home still makes me nauseous today; I'm sure the scent still emanates from the walls. You had to cut the pot roast with a chainsaw.

Mom used to call me a “lazy chewer,” but the meat was raw-hide-tough laced with fat. With all those mouths to feed, she knew how to stretch a dollar like it was Gumby.

As a teenager, I noticed her often standing at the kitchen window overlooking a corn patch with Rye Brook in the distance, meandering out to Long Island Sound. She was talking to herself, fully engaged in conversation. I wasn't sure with whom. At first, I thought it was a way of deflecting the stress of raising a brood of kids with a collective attention span of a young yellow lab. The disengaging increased: misplacing objects, loss of memory, poor judgment, and yes, the rage—warning signs years later that I began noticing in myself.

After my father, a small man with the heady name of Francis Xavier O'Brien, had retired as director of pensions for Pan Am, and my mom left her teaching job, my parents sold the house in Rye in the early 1990s and moved to the Cape. They settled into our Eastham summer home, not far from Coast Guard Beach on the Cape Cod National Seashore, where daring life-savers
once plied the stormy surf to rescue shipwrecked sailors. The lure of the sea is intoxicating for my father. He had always sought retirement to Cape Cod and my mom, the dutiful wife, came along for the ride, ultimately a body and mind thrashing against the surf. Those early retirement years on the Cape were blissful—an opportunity for me, living just two towns away in Brewster, to spend time with my folks. I felt privileged that I was the only sibling on the Cape, but with favor comes responsibility. My dad, in time, had severe circulation disorders requiring several life threatening operations, rendering him to a wheelchair. My mother progressively continued her cognitive decline, but fought off the symptoms like a champion to care for my father.

“I can't get sick,” she kept saying when all the siblings urged her to see a doctor. “I can't get sick,” as if saying the words made her whole.

Yet, she was sick, and she knew it.

The forewarning signs were textbook, but we were all in denial, as is often the case with dementia, for both the patient as well as the extended family. No one wanted to go there, particularly my dad, who feared a trip to the nursing home, a lights-out nightmare for him and my mom.

Over time, Mom began sticking knives into sockets, misplacing money, brushing her teeth with liquid soap, refusing to shower, not recognizing people she knew, hallucinating, and raging at others, often directly at me.

Unremittingly, she cared for my dad, always refusing to succumb to disability. She encouraged me in my own progression; she taught me how to fight, how to live with Alzheimer's, how never to give into it. At times, we even took our Aricept together. I worked diligently at rebonding with my mother, restoring a relationship that had gone sour earlier, perhaps because she saw too much of my father in me. She knew and I knew, but we didn't talk about it much. I was a father's son in every way; he was my idol. Yet, my mother became my role model in the
resolute life she lived. St. Francis of Assisi once said, “Preach the Gospel at all times, and when necessary, use words.” My mother preached with her courage.

Out of a gut necessity and an innate love for one another, my parents ultimately morphed into one. Mom became my father's legs, fetching for him what he needed while in his wheelchair; Dad became her intellect, her
raison d'être
. It was a
Love Story
of Erich Segal proportions. My siblings and I watched this slow-motion train wreck with bewilderment and with awe.

Then, one late Sunday afternoon in 2006 on a visit with my parents, I finally got it. Hit me like a dummy in a crash test. I brought my mother a photo of all her children from a recent family reception, and she couldn't name one of them, including me. She had no clue, and was still driving at the time. As I left my parents' home that night, I could only think of the jarring interjection in the movie
Jaws
when Chief Brody first encountered the mammoth shark:
“We're gonna need a bigger boat!”

We had a leaking dinghy at the time. Two weeks later, ironically Independence Day, 4th of July weekend—with my dad continuing to suffer from acute circulation disorders and internal bleeding after numerous fire drill ambulance runs to the hospital with Mom in tow—my mother took me aside and said she was about done.

“I don't know how much longer I can do this,” she told me. “I'm not sure how long I can hold on.”

Instinctively, I reassured her that the family had her back, all of us, but I felt this penetrating sinking feeling that we were at the precipice of a steep cliff and ground was giving way. Hours later, I got an emergency call that Dad once again had been rushed to Cape Cod Hospital in Hyannis. Mom was with him, yet another fire drill. The nurse told me to hurry.

I met my parents in the emergency room, filled to the brim with the walking wounded of summer. It took 36 hours to get my father into a hospital room. About 28 hours into the ordeal, I
noticed that my father, sitting in his wheelchair in an emergency room cubicle, was bleeding onto the floor. In a panic, I tried to divert my mom's attention from the pool of blood. It was too late. She was horrified. I could see it in her face; she was done.

“I'll get the doctor, Mom, don't worry,” I said as I raced for the door.

She grabbed my right elbow from behind.

“Greg, would you take over,” she asked quietly and in unusual peace.

“Yeah, Mom, I'm getting the doctor now,” I said. “I'm getting the doctor.”

“No,”
she replied as I continued for the door.
“Would you PLEASE take over?”

I stopped in my tracks.

Something inside me said that she was saying goodbye. I turned and looked into her eyes. It was as if someone had pulled down a curtain. As I watched her, I had the feeling of seeing a person, who had been holding on to a dock on an outgoing tide, let go.

I saw her drift. Within ten minutes, she curled up like a kitten in my dad's hospital bed, while he sat unconscious, bleeding in his chair.

Who are the parents now
, I thought?

****

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 down 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.”