by Greg O'Brien
My grandfather, whom we affectionately called “Daddy George,” had close ties to Magherafelt, Ireland in the Northern Ireland County of Derry where family members were baptized and married in the Little Chapel of Woods, which still stands today, framed by a family burial marker.
Once or twice a week, my mother used to take me and two of my sisters, Maureen and Lauren, to see my grandmother and Daddy George. Grandma was petite, short, and thin, a woman of incalculable resolve—perseverance that she clearly passed down to my mother. Daddy George was handsome, gentle, and erudite, an intellectual in his day—small in stature, large in bounty. He didn’t talk much, as we observed as kids; Grandma did all the chatting, distracting us with sandwiches and desserts, piping hot chocolate in winter in a tall steaming glass, and in summer, fresh lemonade and blackberries from the back yard. I spent much time with her in the kitchen, snooping around and playing with her dog, a Mexican Chihuahua named Poncho, appropriate in dimension for the household. Mom, meanwhile, sat on the couch visiting with her dad, trying to make conversation. The moment seemed awkward.
In time, I began to realize that something was terribly wrong with my grandfather. His sentences were becoming shorter as his voice trailed off. He didn’t recognize us on occasion, and he stared a lot in withdrawal. Often, he just shook his head, in an acknowledgment when asked a question. I thought he was hard of hearing.
There were times, my mother told me later, when Daddy George in great confusion would walk to the Rye train station without telling anyone, taking an express to Grand Central so he could stroll the streets of the Upper East Side—a place that made him feel whole. He was trying to go home to his office on 28th Street. The local New York cops knew him and would phone my grandmother, then make sure he returned safely. No one seemed to grasp what was happening.
Daddy George, doctors said, had “hardening of the arteries,” the cipher in those days for dementia. “Your grandfather is very sick,” Mom would tell us.
I’ll never forget the day we came for a visit, and all the dining room furniture, including the mahogany table on which I had done my grammar school homework, was gone—replaced with a stark hospital bed. Daddy George could no longer walk up the steep oak stairs and was confined to the bed.
The deterioration had a solemn impact on me. My grandfather, who had been slowly waning before us, was now in a deep slide—in the rear-view mirror of Grandma, who cared for him like a trained nurse; my mother, who adored him for all he was; and my siblings and me, who felt the pull of a family tree. We loved him. A photograph of Daddy George, sepia in tone, in a suit and tie in his professional Manhattan days, hangs in my office today; it’s the same photograph that I hung on a wall at the foot of my mom’s bed at EPOCH Senior Living in Brewster, months before she succumbed to Alzheimer’s. The night before she passed away, I pointed at the photo, and my mother recognized him. With his wire-rimmed glasses and the shape of his face, I look a bit like him.
Weeks before my grandfather died, Grandma on her loving rounds, was stunned one day to see Daddy George sitting up in bed. He spoke for the first time in months, and said in muted tones that he was aware of all she had done for him; he thanked her, and told her that he loved her. It was a last expression of love—testimony that those suffering from dementia and other mental handicaps, still observe and can retain far more than one might imagine. My mom rushed over to the house to speak with her dad. Doctors counseled that the enlightenment was fleeting, a last flow of blood to the brain or a remnant brain cell flashing a final distress signal. Daddy George quickly fell back into the abyss.
I will never forget the day he died. Still haunts me. When I returned to the red brick house, the hospital bed was gone and the dining room furniture was back in place, as if nothing had happened, yet I knew that nothing would ever be the same.
****
Nothing ever is the same, beyond history that repeats itself. “No man ever steps in the same river twice,” the Greek philosopher Heraclitus of Ephesus wrote in 500 BC, “for it’s not the same river, and he’s not the same man … Other waters are forever flowing on to you.”
In Alzheimer’s, the currents of the disease rise slowly. Those with early-onset, with an acuity of what’s to come, hold a collective breath, awaiting progressions of the loss. “Oh waste of loss,” Thomas Wolfe, one of my favorite writers, observed in his 1929 novel, Look Homeward Angel, “Remembering speechlessly we seek the great forgotten language, the lost lane into Heaven, a stone, a leaf, a door. Where? When?”
The where and when is always front of mind with me. When my grandfather chased the forgotten language in Alzheimer’s, he was lost cerebrally in a back alley; he never found it. Grandfather was never the same again, yet my mother rarely spoke of his illness, other than to say that he had suffered greatly, but with inspiring dignity. That’s the way one should suffer, she told me. Always suffer with great dignity. Later, when my mother was diagnosed with Alzheimer’s, family members were equally voiceless about the illness, in sync with denial, reacting to a stigma—a common antiphon to Alzheimer’s and other life-changing diseases. Myself included.
“It’s not denial,” once observed cartoonist Bill Watterson, creator of the precocious, at times sardonic, comic strip Calvin and Hobbes. “I’m just selective about the reality I accept.”
Aren’t we all…
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More than one in three today (far more in years to come) are touched in some way by the disease—either fighting it, or knowing a family member, colleague, or friend with Alzheimer’s—and yet, the disease rarely gets attention in an obituary or in a death certificate. Family members often decline even to acknowledge Alzheimer’s, or call it by name. This collective denial has been the subject of scores of newspaper, magazine, and medical journal commentaries. “Scientists say that when they try to trace the inheritance of Alzheimer’s disease in family members, or to learn the age of onset, they come up against family members who will not admit that a parent or close relative had anything seriously wrong with them,” noted The New York Times years ago in a report. “Adult children frequently try to protect their parents by not telling them that they have Alzheimer’s disease, a situation reminiscent of the days when no one would tell cancer patients that they had cancer … The stigma, experts say, is because of the disturbing symptoms and the fears of family members that they could inherit a gene that will give them the disease.”
And so, family members across the board often reach, explicably, for a shallow, “drive-by” diagnosis after a brief encounter or a hasty phone conversation. It’s fully human to deny what we find unpleasant or chilling, but when the drive-by precludes one from the facts, from facing real-life implications, then it’s wholly unproductive, a dead end.
Such observations are akin to saying to one who cannot hear: “But you don’t look like you’re deaf.”
****
You can’t hear much on Pluto. It’s a dark icy place, dense with denial, isolated to the point of impenetrable peace. What’s in a name? Plenty, in this case. In 1930, Walt Disney introduced an obtuse canine companion for Mickey Mouse named Pluto, an apparent callout to a planet with a thin atmosphere of nitrogen, methane, and carbon monoxide gases, the kind of place in deep space of suspended animation where not much cohesive thought occurs. Beyond Pluto, three times farther from Earth and 900 times Earth’s distance from the Sun, is Sedna, a surface composition of 60 percent of methane ice and 70 percent of water ice; it is capable of supporting a subsurface ocean of liquid water, scientists say. This dwarf planet will become closer and brighter over the next 72 years before it begins its 10,500-year trip to the far reaches of the solar system and back again, making it much easier for some to hop on a ride from Pluto, a sling shot. You can hear God from here.
The trip to Pluto, a metaphor of survival instinct for my flight from reality, can be a comfort, a release from the angst, fear, sadness, and rage—a surrender to numbness, those unfathomable blank stares, to feel peaceful again, a
void the pain of losing control. Daily, I fight against the impulse to let go, a welcome release, even just for minutes. There are days I have to prompt myself to come back. Often, my wife, children, or friends summon me with a snap of a finger.
The drifting is similar to sailing in a slack wind. In Alzheimer’s, one doesn’t move fast, but the journey is soporific—respite from the interruptions of a brain gone awry, a flickering light whose plug is loose in the socket. On Pluto, the mind and body are at peace, no longer on high alert. The metaphoric gravitational pull of Pluto, for me and others with the disease, draws deep. It’s soothing at this stage just to let go. At some point, the light goes dark forever.
Often, I look, with soulful flashlight in hand, for my mother on Pluto, but I know she’s not there. She’s with God. Many months ago, one evening when I couldn’t sleep, typical of my journey, I was lying late at night on the couch in the family room, watching reruns of “Planet Earth.” I sensed a woman sitting next to me. I wasn’t sure if I had drifted off, was in-between sleep, or was just dreaming. Still not sure. At first, I thought it was my wife, Mary Catherine; her back was to me. Then the woman turned and looked at me. It was my mother. She stared straight at me.
“Mom,” I said. “I can’t sleep!”
“It’s ok. I can’t sleep either,” she replied in a calming tone.
From what I recall from the encounter, she then rubbed the back of my head, and within seconds, I fell into a deep slumber. It was the most restful, peaceful sleep of a lifetime.
My mother in time would make her presence known elsewhere, once in the form, I suspect, of a flowering hibiscus. My sister Lauren had received a hibiscus from a friend, but the plant would only flower on rare occasions, remarkably rare occurrences and in yellow: on my mom’s birthday and when family gathered at Lauren’s outside Boston. As if to reinforce like the elementary teacher she was, my mother’s presence was felt again. Driving down to the Cape on a summer day shortly after my mom’s death, Lauren spotted a yellow jeep as she queued up for gas along Pilgrims Highway. Her attention was fixed on the license plate, surrounded by a sea of yellow. It read: “RIP Mom.”
Rest in peace, always.
These types of happenstance are daring to attest; one opens themselves up to all sorts of second-guessing. I get that. So analyze away.
Yet, on a cold January night a year later, I was sleeping on the couch again, my wife was in the throes of a horrific sinus infection. I got up, as I do every two hours, just to walk around the house, often aimlessly. This time, I had to take another pee, and on the way back to the couch, I checked the digital clock on the stove. It was 4:12 am, still dark, black as night. As I walked to the couch, I noticed something moving slowly to port side of the wood stove where embers were alight. It was an image of sorts, but instinctively, I was serene with it. At first, I thought it was just another visual misperception, or as we scribes might correctly call it, another hallucination. I was wide awake at the time, focusing intensely on the image. I saw the outline of a woman. She had blonde hair, dressed in clothing familiar to me. The image moved slowly toward me, then backward, then toward me again. The woman was beckoning me with her right hand to follow. She kept summoning. I realized then it was my mother, or a likeness of her. The shadows of a man stood behind. Slowly, she summoned to him, as she had with me, to move forward. I wondered if it was my father. The image in the shadow hesitated, and I thought in the moment that if any of this were real, my father was probably saying to Mom, “Ginny, let’s not scare the shit out of Greg!”
I was at peace, but it wasn’t my time to move forward. So, I turned on a light. Saw nothing. I turned it off. Saw nothing. Then I went back to bed in great calm, intuitively feeling that I wasn’t alone. I told my wife about the experience the following day. I joked with her that my mother was looking for one of her recipes. I want to believe it was my mother, but what if it wasn’t? What terrifies me is yet another manifestation of this disease.
7
SMART PILLS
SLEEP IS GOOD FOR THE SOUL, BUT WAKING HOURS are when work gets done, with the brain in the “on” position. Whatever one’s aspiration in life, an engaged brain is fully focused with vigorous mentoring. Among great tutors in my life, I had exceptional coaches in high school at Archbishop Stepinac High School (class of 1968) on Mamaroneck Avenue in White Plains, five exits up Route 95 from the Bronx. I had a passion for sports, but enjoyed the expression of theater and turned to the stage. Drama coaches Father James Cashman and Father Bernie McMahon were particularly inspiring, instructing to express, yet stay within, to never show fear, to ad lib in a manner that always built confidence. They were lifelong teachers. Two of their prized students went on to far greater successes—Academy Award winning actor Jon Voight, class of 1956, and Alan Alda, class of 1952, of “MASH” fame and other generational movies. But the actor I seem to emulate most these days is the late Lenny Montana, who played Luca Brasi, the dim hitman in The Godfather. My favorite scene is Luca Brasi’s reprised, slow slur, preparing himself for a wedding salutation to Don Corleone, just to get it right.
“Don Corleone, I am honored and grateful that you have invited me to your home on the wedding day of your daughter. And may their first child be a masculine child,” Brasi kept practicing in a slow, deliberate, and discomfited pace.
Before business meetings these days, before every family gathering, every outreach, every salutation, I rehearse my lines, just to get them straight. I prep for the quips, the thoughtful commentaries, and salutations. I study the lines. Sometimes, I keep crib notes. Nothing is ever left to chance these days. Then, it’s showtime! I’m pretty good at it; damn good, in fact. Fathers Cashman and McMahon taught me well—teachers who trained me with great insight, humility, and faith in one’s ability to row harder.
You have to row harder with dementia, or you drift. In the sport of crew, with roots dating back to ancient Egyptian times, you must work as a team, propelling the racing shell through churning waters. But in Alzheimer’s, one must pull an oar with the strength of a strokeman, only there is no one else in the shell for the “catch” and “recovery.” At the catch, a rower’s hips are aligned with the oarlock for maximum thrust of the blade in the water. The rower then applies pressure to the oar by pushing the seat toward the bow by extension of the legs. As the legs approach a full extension, the rower pivots the torso toward the bow, and then finally pulls the arms toward the chest. The hands meet the chest right above the diaphragm, and then drop enough to take the blade out of the water. At the very end of the stroke, with the blade still in the water, the hands drop slightly to unload the oar so that spring energy stored in the bend of the oar gets transferred to the boat. This eases removing the oar from the water and minimizes energy wasted on lifting water above the surface in splashing.
The recovery phase follows the drive—removing the oar from the water and coordinating the body movement to move the oar to the catch again.
And so it is with Alzheimer’s—a catch and recovery to engage a brain on its way to deluge.
Sure, there are many who encourage from the shoreline: family, friends, doctors, and colleagues, many of them not fully understanding why they are waving. In Alzheimer’s, one is in the boat alone. So, you row a little harder!
****
Dementia today comes in many flavors, a cornucopia of medical terms. Old-style labels like “hardening of the arteries” have given way to a more technical lexicon. Now there are more than 80 types of dementias identified. Alzheimer’s is the most prevalent; others include: Lewy body dementia, Creutzfeldt-Jakob disease, Huntington disease, frontal or temporal lobe dementias (including Pick’s disease and Primary progressive aphasia), HIV-associated dementia, Dementia pugilistica (Boxer’s Syndrome), Corticobasal degeneration, and other genetically related dementias.
The progression of Alzheimer’s can be slowed, to some extent, with state-of-the art prescriptions used to diffuse symptoms, producing “decoy” chemicals that trick enzyme
s that break down the transmitter chemical (acetylcholine), allowing it to perform as well as it can. I take a daily cocktail of drugs. The combination dosage helps slow the rate of decline on good days. The Aricept (donepezil) works to improve the function of the nerve cells by slowing a breakdown of the transmitter chemical acetylcholine. Namenda (memantine hcl) assists in blocking transmission of chemicals in the brain that kills nerve cells.
Close friends call them my “smart pills!”
Consider the 1982 movie Tron where a computer programmer is transported inside the software world of a computer mainframe and engages terrifying sequencers in an effort to get back. That’s my world today, and the destiny of millions of others, unless something is done to subdue the insidious intruder.
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The mornings for me are always the same. In disarray. At first light, I must focus on the five Ws: the who, what, where, when, why, and how of life, as if rebooting my faithful MacBook Pro before tossing the covers and organizing the scattered files of my mind. I do it out of instinct, but there’s always the depression, fear, and angst to walk through, and that’s just on the way to the bathroom where, on doctors’ advice, I’ve begun labeling the toothpaste, liquid soap, and rubbing alcohol. I have attempted often to brush my teeth with liquid soap, and on two occasions gargled briefly with rubbing alcohol. Scope is far better!