by Greg O'Brien
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.”
“No,” he said, “E
arly-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?
5
“DENIAL AIN’T A RIVER IN EGYPT”
SIGMUND FREUD HAD MUCH TO SAY ABOUT DENIAL. Among the most influential and controversial thinkers of the 20th century, his work and theories helped shape our views of childhood, personality, memory, sexuality, and therapy. Denial (Freud called it abnegation) is a defense mechanism for one faced with a fact too uncomfortable or overwhelming, which one rejects—insisting reality is not true, in spite of crushing evidence. There are three fundamental types of denial, Freud suggests: simple denial, denying the reality of an unpleasant fact or situation; minimization, admitting a fact, but denying its seriousness; and projection, admission of both a fact and its seriousness, but denial of any responsibility in it.
Denial is a Rosetta Stone of modern life. When in doubt: deny, deny, deny. We see it in politics, in business, at home, and then in the confessional. To précis Mark Twain in a Bronx tounge: Da Nile ain’t just a river in Egypt.
So was mine.
****
I hate suits. They make me uncomfortable, the corporate image, as well as the clothing. Particularly on a stuffy summer morning in June 2010 at the law firm of La Tanzi, Spaulding & Landreth in Orleans on the Cape. The building was filled with suits, a striking contrast just up the street from postcard perfect Rock Harbor in Orleans where charter fishing boats spill out into Cape Cod Bay to ply the rich fishing grounds of Eastham, Wellfleet, and Provincetown. As the lawyers plied their trade in designer attire, fishing boat captains minutes away, clad in bulky sweatshirts and faded jeans stained with fish guts and seagull poop, picked their way out of a narrow channel at dead low tide, searching for stripers and schools of blues on the horizon. The contrast in cultures of the Outer Cape, one that gives definition to eclectic, was not lost on me. Nor was the moment.
In a small, lawyerly-appointed conference room on the west side of the building, the kind of gathering space that makes one imagine they are queued up for a fiscal colostomy, I sat next to my wife with a pile of legal documents awaiting my signature. I was here to sign my life away, a hand-off of assets—everything I owned, everything in the secular world that makes a male whole. In short, my identity—my material umbilical cord, as short as it is.