by Greg O'Brien
My mother in her bruising 15- to 20-year progression of Alzheimer’s, refused to lie down. She carried us at times, like a soldier in Patton’s army, when she wasn’t quite sure what planet she was on. I watched in awe, as did my sisters and brothers. Mom’s role had changed, and would change again. Yet, none of us wanted to concede the obvious: our mother was slowly sliding off the face of the Earth, pulled into the metaphorical orbits of Pluto and Sedna.
The nursing of my father took its toll on Mom’s health. Her memory continued to fade, like cedar shingles bleached by the sun; her rage intensified; she didn’t recognize family members and friends at times; she wandered and drifted; she was scared. But she cared, as best she could, for my father and for the rest of us. The ancient Greeks called it Agape, the purest form of unconditional love, far purer than Eros (physical passion), Philia (brotherly love), and Storge (affection). Mom wanted to hold to her role as wife and mother, but roles were changing. She was fighting demons, forever pushing back against monsters in the shadows.
In 2007, my dad was back in Cape Cod Hospital for a second, life-threatening circulation bypass surgery, and she stood with him again against all odds. It was her final stand. She was about done. Over lunch at a restaurant on Hyannis Harbor, walking distance from the hospital, she took my wife, Mary Catherine, aside in an emotional breakdown, and within my earshot, she growled with venom, “I hate him. I hate him. I hate him. I just haaaaate him!”
She wasn’t referring to my father, but venting rage against me, perceived in the moment as the surrogate husband. She was reluctant to confront my father in his suffering, dutiful to the end. The elephant was under the tent. It consumed the space, and it just blew me away.
The tent flaps opened wide and led to Epoch nursing home in Brewster where my father was sent for rehabilitation, and Mom followed because she could no longer safely be alone and because she wanted to be with Dad. They were side-by-side in separate beds in an antiseptic, sterile first-floor room. It was difficult to tell which one was the patient. Mom was somnolent, and when she spoke, made little sense—a chilling contrast of a little child, then a raging adult. The brain wasn’t firing. Signals were crossed. The scene was an awakening, a cold shower, for the siblings who had visited; they were appalled at Mom’s plummet. Dad was ever distrustful, fearing in his advancing paranoia that we were attempting to commit him to the nursing home. The irony was that Mom needed to be cared for far more than he; she was out of sorts to the point of insentience, yet laser sharp with long-term memory about the particulars of her life and family. The following day when the devoted Epoch staff took her by the hand to the library filled with four walls of books, they asked her what she wanted to read. The nurses told me later that she scanned the shelves for 15 minutes, and then pulled out two books.
“I think I’ll read these,” she finally said, not grasping the title or author.
The books she chose were Secrets in the Sand and A Guide to Nature on Cape Cod and the Islands—two books of mine published many years ago, and two books that she had kept in her living room in Eastham.
“They just felt comfortable in her hands,” the nurse told me later.
At Epoch, it was clear to presiding physician Dr. Robert Harmon that my mother was on tilt, moving from mid-stage Alzheimer’s to end-stage, still she wanted to be the wife and mother. Dr. Harmon called for family intervention, a conference at Epoch that looped in siblings over the phone who could not attend. It was a disaster of a family conference, as it might be with other large families. Many of the siblings, in this College of Cardinals, were at different end points—from positions of denial, to circumspection, to anger, as Dr. Robert Harmon sought to bring us to a place of irrefutable reality: Alzheimer’s was consuming Virginia Brown O’Brien, and there was nothing that any of us could do about it. Nothing.
In the weeks to come, I sought, as my parents’ designated Power of Attorney and Healthcare Proxy—a position of impotence in a large family—to find common ground among the siblings, something similar to striking peace on the Gaza Strip. The warring factions, with all good intentions, were split. The girls justifiably wanted Mom protected in a nursing home, and the boys sought to keep my parents together at home. We were split in a moment of crisis, and the crevasse was widening. Deep into confusion myself and privately questioning my logic, I cast the defining vote. Mom and Dad would stay at home, here on Cestaro Way, the dead-end street.
My parents returned to Eastham the following week with the commander-in-chief, holding tight to the concept of hunkering down in the cottage below the tracer bullets. My dad’s survival instinct, motivated by fear, was to ride out the storm with my mother. And so, at his unrelenting direction, we hired 24/7 in-home healthcare to be paid out of his Pan Am pension fund at a nosebleed rate of $25,000-a-month for both parents. These were well-meaning, dedicated professional caregivers, but do the math.
It was a free fall, medically and financially, two Black Hawks down! Clear the decks. “Only the dead have seen the end of war,” Plato once said; a declaration that opened Ridley Scott’s classic 1991 movie. We all sat back in horror, as if observing in slow motion a horrific air-show crash—my father in a wheelchair, with internal bleeding and no use of his legs; Mom, in short circuit, with little use of her intellect. Regularly, I called them at night, just to check in, and when no one answered, I would race in a fire drill to Eastham, sometimes at 11 pm, thinking I would find them dead, only to realize my mom forgot to hang up the phone.
The reality was debilitating for my brothers and sisters who lived off-Cape, as it would be for any family with such a commute. Over time, Mom’s rage and Dad’s incessant crusade for survival accelerated, for various and incongruous reasons. I tried to underscore the point one night over the Sunday dinner table, but Dad wasn’t getting the fact that his wife of 60 years was slowly drifting out, that I was drifting as well, and both of us were getting angry.
Regrettably, my father, once my hero, never read Ernest Hemingway’s The Sun Also Rises: “You can’t get away from yourself by moving from one place to another.” The trip from Epoch back to Eastham changed nothing. The thoughts of collateral damage stunned me, as I confronted my own demons. I started shifting fidelities. I had no choice. Mom was alone and vulnerable.
****
October is a special time on Cape Cod and the Islands. The sun rises later in the morning and sets lower on the horizon, yet high enough to light up the emerald salt-marsh grass. Indian summer is in play, a period of unseasonably warm, dry weather, a bonus for the locals. The Cape in fall is heated by the warmth of water surrounding this narrow spit of sand; consequently, summer is longer here, and spring generally arrives for a day in early June.
As the sun set over Cape Cod Bay on Sunday, October 14, 2007, Columbus Day weekend, I headed to Eastham after restarting my brain at the gym, an exercise much like pulling the chord on a chainsaw. You gotta prime it first. The brain usually fires after a second mile on the treadmill. I was in full flush on the way to Eastham, reflecting on my parents, their fading health, and my conflicting instinct about keeping them together at the cottage, for better or for worse.
****
My father—months from dying and he knew it—was particularly prickly that night with incessant pain, internal bleeding, and a continued breakdown of the body and mind. Dad clearly was on tilt; my mom couldn’t think at all; and the professional caregiver at the house, God bless him, had trouble with the English language. Mom, that night, had served pickles sprinkled on Cheerios for dinner; last time I had that was in college after smoking some recreational dope. All the ingredients were in place for a blow-up of denial when I arrived. My father, fully paranoid, had assumed I had come to take him and my mother to a nursing home. He was itching for a fight. We were at the anger and bargaining stage of grief.
“Tell your brothers and sisters that we’re doing fine here, and that we don’t need your damn help!” he bellowed. “You can leave now, son! We don’t need you!”
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“Dad, I’m just here to see Mom,” I said quietly.
“Well, your mother doesn’t want to see you either.”
Immediately, my mother moved to a seat next to me, putting her right arm over my shoulders. She never said a word. Perhaps a sign she was switching allegiances.
My dad persisted. “The bodies are still warm here, Greg. Go home. You haven’t done a damn thing for us. So, just go away, go A-W-A-Y!”
“Dad,” I said. “I get it; you’re scared of dying; I get that, but Mom is very sick, and she needs our help.”
“You’ve done nothing for us, Greg. Ever! Nothing!”
The words cut to my heart. They were delivered in my father’s fear, but I was done with it.
“Dad,” I screamed in a spray of expletives. “Do you think you’re the first person in the world to die? Dying sucks, Dad. I imagine, it freakin’ sucks, but we all die some day.”
I paused for a second, which seemed like minutes, fully aware of what I was about to shout: “SO WHY DON’T YOU TRY NOW TO DIE WITH SOME DIGNITY, DAD, AND TAKE CARE OF MOM ALONG THE WAY!”
There was deafening silence; you could count heartbeats. We were all crying, and the elephant in the room had consumed the oxygen. We were emotionally gasping. Gabriel, my parent’s faithful caregiver, intervened as a messenger angel. He stepped in and separated me from my father, directing me to a back room. Still traumatized by what I had just said, I followed Gabriel, and Mom followed me. The torch had been passed. Gabriel brought me a glass of water, an act of kindness still imbedded in my memory. He made no judgments, and then returned to my father, as any caregiver should.
Mom and I then sat quietly in the back room, surrounded by the memories of family photographs—her mother growing up on a horse farm in Brooklyn, my dad as a handsome Navy lieutenant, her children as young kids on Nauset Beach. She was still crying.
“I’m scared, she said. “What’s happening to me?”
“Mom,” I said, looking into her eyes. “I know the pain. I feel some of it. You’re not alone. We are all here for you.”
I pointed with my right index finger to her forehead. “Do you remember that little girl who grew up on the West Side of Manhattan, do you remember the little girl who went to the French convent school, then grew up, got married, and had ten children?”
“Yes,” she said, intently staring at me.
“Well that little girl, Mom, that wonderful mother, hasn’t left yet; she’s still inside you. Believe that!”
“REALLY?” she asked drawing out the word, sobbing now, perhaps the first time she admitted she was lost in space and not coming back.
“Yes,” I affirmed. “And that little girl will never leave you as long as you fight until you can’t fight anymore. You understand that, Mom? Do you understand that?”
“I do,” she said definitively.
That’s all I needed to hear.
We walked back hand-in-hand into the living room. Dad had calmed down, and Gabriel was hovering next to him.
“I love you, Dad,” I said as I walked out the door. “But you really pissed me off tonight. You’re better than that! Much better than that.”
The following day at 7 am, Dad called me.
“I’m sorry,” he said. The contrition was short, to the point, deeply sincere, and duly noted.
It was behind us now. Finally, we were all on the same page.
The roles clearly had changed, but it was a downhill slope, reminding me of the Outer Limits run at Killington, Vt. I was hitting red marker poles along the way, collectively in the depression, reflection, and the loneliness of grief, a changing of the guard for a fate that lay ahead. I never confided in Mary Catherine about this; wasn’t sure she could or would go there. Still not sure. And who would blame her? I was looking inward, trying to protect what I could, a matter of duty as a husband and father for as long as I could.
13
ANGELS UNAWARES
MY MOTHER LOVED YELLOW, THE COLOR OF THE MIND and the intellect, the third chakra of the solar plexus, representing personal power and spark. Yellow is the hue, most visible of all, of memory, hope, happiness, and enlightenment. Yellow inspires the dreamer; encourages the seeker. My mom’s rapture with yellow was an upward, heavenly turn in the stages of grief.
Yellow is a color of angels, and in scripture it symbolizes a change for the better. Mom believed in angels. So do I. The word, derived from the ancient Latin “Angelus” translated “messenger” or “envoys,” resonates with peace. And in the throes of Alzheimer’s, that’s pure gold; if you scratch below the surface of life, messengers may abound, as Hebrews 13:2 counsels: “Be not forgetful to entertain strangers for thereby some have entertained angels unawares.”
My mother, I believe, entertained angels unawares. Seven months before her death, in late fall 2007, she became obsessed with the color yellow. She saw yellow everywhere, mostly yellow cars. All she talked about was yellow. I dismissed the thought outright. Weeks later, driving my mother to Brown’s Superette, across from Eastham Windmill, the oldest working gristmill on the Cape, she exclaimed, “Greg, do you see that yellow car? Look, there’s another one, and another one!”
Holy snikes, I was seeing yellow now, myself. In time, so was my brother Tim, who lives in Guilford, Conn., and faithfully visited my parents frequently. So, Tim opted to buy a yellow Jeep Wrangler. My mother was thrilled every time he drove into the driveway, somewhat of a second coming. Taking a cue from my younger brother, I also bought a yellow Jeep. We were heaven on wheels—Mom’s angels-at-arms. She loved driving in our Jeeps, like a kid on an amusement ride at Playland in Rye. My brother still has his yellow Jeep. So do I. And I’m taking mine to the grave.
As a New England November gave way to December, the days were tersely shorter—a sundowner effect for all. The sun, lower in the sky at the vernal equinox, now dipped into Cape Cod Bay at 4:09 pm, as the hourglass sand of my parents’ lives were slipping through our fingers. Alzheimer’s was bearing down on my mother in the final stage of the disease; Dad was succumbing to his circulation disorders, the progressing effects of prostate cancer, and advancing dementia; and I was adrift on days, off my mooring, tethered to a lifeline, a loving family. We were all living on the edge of faith, with a bit of attitude from Alfred E. Neuman, the red-headed urchin of iconic Mad Magazine; the kid with the blissful grin: “What, me worry?”
My mother was worried, but endured the disease resolutely as it moved to full bout. The progression was much like watching paint dry on a moist day, ever steady and slow, but the results were unassailable. Still, she functioned as a dutiful military nurse, endeavoring to care for her husband, as other wives of this generation had selflessly done with spouses. Somehow, these women were lost in the headlines. They prevailed against all odds. But where were the medals and headlines for them?
There were yet more crisis runs to Cape Cod Hospital in December. Responding to my father’s critical internal bleeding and the unrelenting strain of holding a thought wore my mother to a nub. I followed in tow. We were at the tipping point—an irreversible moment in time, like a glass of fine Bordeaux Cabernet Sauvignon spilling over onto a white-linen table cloth. Standing up the glass will not retrieve the wine, nor will it remove the crimson stain. My mom was packing for Pluto, and Dad, forever the Navy man, was setting up deck chairs on his Titanic, awaiting a rescue that would never come. The siblings were apoplectic.
My father, meanwhile, kept his humor. After one of his many Lazarus-like resurrections, he barked when the phone rang at home, “If that’s Nickerson Funeral Home, tell them I’m not ready yet!”
Mom was ready, but didn’t know it. Rudderless and adrift, she fought alongside my father—perhaps fearing being left behind, maybe out of instinct. Dad was her rock; we were her kids. She wanted it that way, never ignoring the chain of command. While Alzheimer’s can ravage a mind, it cannot erase instinct, the capacity to acquire knowledge without interference or reason. Instinct has history in the Latin v
erb, intueri, “to look inside.” My mother taught me to look inside, to turn over the rocks, particularly when one cannot fathom the reality, the certainty, of what is happening on the surface.
Certainty was served up bedside to my parents at Cape Cod Hospital on November 11, 2007, a month before my father’s 85th birthday and about eight weeks before his death. Dr. Alice Daley, a skilled internist and compassionate woman who had closely studied my parents’ medical records, discerned it was time for a come-to-Jesus talk. Damn the denial, Dr. Daley knew life was short for both. With my dad in the prone position, my mom seated by his side and insisting she stay, anticipating the worst, and with me, a stunned observer, at the foot of the bed feeling like a voyeur, Dr. Daley gently asked my father if he was prolonging life or death: “If life is a desire to live in some quality, real or imagined, then one is prolonging life,” she said. “But if life is fear of death, then one is prolonging death.”
Dad, deep in the throes of his own dementia, was prolonging his death. So was my mom.
Dr. Daley, in one of the most remarkable, powerful exchanges I’ve ever witnessed, then asked my parents to give each other permission to die—the “working through” stage of grief.
“Virginia,” she began softly, “how do you feel about Frank dying?”
In instinct, Mom rose to the occasion.
“I will miss him terribly,” she said. “And that frightens me.”
Sensing the moment, fully aware of my mom’s state of mind, yet knowing my mother might later regret a moment lost, Dr. Daley asked her point blank, “Do you give your husband permission to die?”
The words pounded through my brain.