by Greg O'Brien
There was a pause, as affected as I’ve ever witnessed.
“Yes, I do,” my mother said, tears welling up. She knew where life and death was heading for the both of them.
“Did you hear that, Frank?” Dr. Daley asked.
“I do,” he replied.
“How do you feel about dying first?”
“I want to die first,” my father said quietly. “I don’t want to be alone. I don’t want to live without Virginia. I can’t handle it.”
Mom reached for his hand.
Denial in the moment had given way to soul-searching truth.
Another baton had been passed in the resurrection of their relationship.
****
“Do Not Resuscitate,” the forbidding acronym, DNR, is the kiss of death. We were all raised to cherish life, and this core belief was now being called into question. A DNR was in play for both parents, a “no code,” as nurses call it, a signed affidavit to respect the wishes of a natural death. And I, the Prodigal Son, “Lunchie,” the guy growing up who often was missing in action, was to make the final call. Not good. It wasn’t the position I had anticipated earlier in life; as a young man, I had squandered my parents’ moderate means on travel, good wine, and trying in vain to sway women far above my station in life. The DNR weighed heavily on me.
The fire drills continued. After Christmas, my sister Lauren, who lives north of Boston, came for a visit one afternoon and found my parents home alone. A substitute caregiver had run to the store to pick up the The New York Times and Daily News for my dad. When my sister arrived at the cottage, my father was sitting in his wheelchair facing the wall. A horrific chain smoker, he was puffing a cigarette queued up to his oxygen tank, behavior as rash as lighting a match in a nitroglycerin factory. My mother was wandering the house, insisting no one was home. KaBOOM! We were, as a family, at ground zero, a place many Boomers have been with parents, as their own children one day will be with them.
New Year’s 2008, I had hoped, would bring new promise, but faith was not of this world. My dad had made it clear to me that more ambulance runs to Cape Cod Hospital were verboten. He was done, and I instructed the caregivers as such. But on January 4, with Archangel Gabriel off duty, a replacement caregiver in a medical crunch freaked, and rushed my father to the hospital in an ambulance. A half hour later, Dr. Daley summoned me from a meeting in Boston. I flew down Route 3 to the Sagamore Bridge, like a seagull chasing an offshore dragger so laden with fish that the scuppers were taking on water.
Walking down the corridor of the intensive care unit, I immediately instructed the medical staff that my father was going home the next day. Got it, tomorrow! There would be no question about it. I then went to his room. In full horror as I walked through the door, he was even more a skeleton of himself, withered in days.
“Greg,” he demanded, “What the hell’s going on? I don’t want to be here. I told you that! I want to be home with Mom.”
“I know, Dad,” I apologized “You’re going home tomorrow. I have spoken with the doctors, and you’re going home.”
“Good!” he said.
“And you’re never coming back, Dad.”
“Good…”
“And you’re never coming back again.”
“Good.”
“Dad, you’re NEVER coming back here ever again!”
In one of my father’s last rational moments, he pulled his scrawny frame upright to a sitting position and addressed me as only a father could lecture a son who wasn’t getting it. His body language told me to stand the freak down.
“I get it,” he said as if addressing a third grader. “I … GET … IT!”
The exclamation point was a hand gesture, cupping his fingers at the middle of his breastplate, then ever so slowly, for emphasis, drawing his hand to the extremes of his shoulders.
I got it, too. They were the last words my father ever spoke to me.
The hospital dispatched my father to hospice care at home the following day. My mom, I believe, knew in her heart that we were on final watch; still not sure of time and place, frozen in the moment, but knowing the moment was at hand.
The doctors had prescribed morphine for my dad’s intense pain to allow him to let go, and die with some dignity, free of his fears. I was asked to pick up his final orders at the pharmacy, and bring the morphine up to the nurses in Eastham that night. The reality was chilling. I was bringing home my father’s death sentence.
****
The drive to Eastham was disorienting, unlike the Sunday rides from Willy’s Gym. Random images of my folks, childhood, my brothers and sisters, flashed through my head as I pondered the past, the present, and future. Only the past held hope for us that evening, and that was now on the brink.
Entering the house through the back door, fumbling with the screen that I had never fixed properly, the cottage felt as though it had the life sucked out of it. The quiet of imminent death filled my parents’ bedroom. My dad was lying motionlessly in bed, eyes open, unable to talk, still resisting. My mother, steadfast as ever in Alzheimer’s, was sitting by his side, not quite sure what was about to happen, but dreading horrific change in the air.
I gave the morphine to the nurse, the mother of my daughter Colleen’s close high school friend. I felt as though I was wearing the mask of an executioner.
“You need to say goodbye to your father,” the nurse counseled.
“What do you mean?”
“It’s time, Greg.”
“Time? Time for what?” I said anxiously, “I have to call my brothers and sisters; I need to get them here.”
My head was throbbing.
“There is no time left. You need to say goodbye. Your dad is ready to go home.”
She stared intently at me, like the Sisters of Charity at Resurrection.
Instincts locked in. I grabbed my father’s hand. My mother, without prompting from me, put her hand gently on top of mine. It just seemed, for her, the right thing to do.
There is no training, no manual, for this.
“Dad,” I said looking closely into his dim brown eyes. “Shake your head if you can hear me.”
He nodded his head.
“I want you to know, Dad, that we will take care of Mom, all of us. I promise!”
He shook his head.
“Dad, you are very sick, and it’s time to go home.”
He shook his head.
“Can you see a light, Dad, a peaceful light?”
He shook his head.
“Dad, move to the light. Embrace it. We will take care of Mom. I promise you!”
He shook his head.
“Dad,” I then said, “I love you, and it’s been an honor to serve you.”
He shook his head.
Tears were slipping down his narrow, ashen face. Together, we were at the door of acceptance and hope, looking to infinity—my dad, my mom, and me—through facing mirrors of reality. I felt as though I was gazing through a kaleidoscope, a tunnel of reflected light and colors in patterns that both comfort and confuse. It brought me back to the innocence of childhood when all seemed right. But it wasn’t tonight.
Moments later my father closed his eyes. He never opened them again.
****
The following morning, Dad was pronounced dead. He passed in peace at home just where he wanted to be, lying in his bed and shielded by the unremitting love of my mother, who lay next to him, with her arms instinctively across his chest, unsure of her reality, frightened to be left alone, but dutiful to the end.
I got the call from caregivers at 6 am and raced to the cottage. When I arrived, my mom was sitting alone at the dining room table, staring blankly out into the scrub oak forest behind the house. A cold, piercing drizzle pelted the picture window; it might as well have been a rabbit hole into the fantasy world of the Queen of Hearts and the Mad Hatter, images she had faced before and would again, months later, in the nursing home. Mom was terrified. I took her by the hand to the bedroom for final
valediction. Dad was still—resting in his peace. Always the wife and mother, she sat next to him and brushed his hair back, as if preparing him for an appointment.
“Mom, Dad’s dead,” I said.
“I know,” she replied. “I’m alone. I don’t know how much longer I want to be here.”
Minutes later, the crew from Nickerson Funeral Home arrived. In a small Cape Cod town, everyone knows one another, and today was no exception. The crew expressed regrets, and then carefully wrapped my father’s body in a white bed linen, placing him in a long black plastic bag with a zipper. As the attendant slowly zipped the bag shut, I was overcome with the certainty of death. So was my mom. In the moment, yet knowing better, I zipped down the bag so my father could breathe. I thought my mother would want that. All in the room seemed to understand. I then instructed the funeral home crew that I would walk my father out to the hearse in the stretcher. It seemed like the right thing to do.
“Mom, don’t worry,” I said. “Dad’s not leaving here alone!”
Putting the stretcher, feet first, into the back of the hearse, I reached down and kissed my father on the forehead. I zipped up the bag. Dad was safely home now.
****
Mom was left behind and lost in the crushing wake of his death. My father was waked days later at the Nickerson Funeral Home in the center of the snug fishing village of Wellfleet where my parents, years ago, had walked hand-in-hand at the harbor. He would have been pleased, knowing that he lay in state wearing his Yankees cap, an act of respect, thanks to my brother Andy. My mom just kept staring all night, the vacant gaze of Alzheimer’s. Her children and grandchildren were consoling, but her spirit was far away; she was preparing for a trip to Pluto and beyond.
On the day of my dad’s funeral, the January weather was howling, emblematic of my parents’ blustery fight for survival. The shrill wailing of the Irish bagpipes split the stillness of St. Joan of Arc Church in Orleans, and resonated the isolation of County Clare. In my eulogy, I quoted Shakespeare, a depiction in Hamlet that captured my father in a universal way: “He was a man. Take him for all in all. We shall not look upon his like again.”
At Evergreen Cemetery in Eastham, he was buried with military honors, as my mother slipped deeper into an abyss. She never left the car, just stared out the window at us. In the weeks and months to come, her plummet was precipitous. Confusion intensified, the filter was shot, the rage intensified, and more and more, she was seeing and hearing things imagined. The hallucinations in her final stage of Alzheimer’s increased far beyond the crawling spider and insect-like creatures I’ve witnessed; demonic figures were reaching up at her from the floor, as if to pull her to hell.
“They are scaring me!” she often cried.
We tried to calm her. All siblings stepped up. My brother Paul in California called regularly to talk to her about the early years, the long-term memories of life. Tim, Maureen, Lauren, Justine, Bernadette, and Andy visited as often as possible. Deceased brothers Gerard and Martin, I had imagined, were preparing a mansion for Mom in Heaven. And my dad, I had assumed, was stocking the celestial pantry, making sure there was a Black Dog Chardonnay on ice for mom, and a six pack of Heineken and a bottle J&B scotch for himself.
The disease marched on—a steady, almost methodical gait from the time my mother let go, finally acknowledging she was terribly sick. That’s the curse of Alzheimer’s in concession; no redemption from here. The terror of reality: once you know you have something, a friend once told me, you have to live up to it. It was a teaching moment. In months to come, there were many alarming incidents with my mother. My sister Bernadette was horrified on a visit in the spring of 2008 to witness my mom brushing her teeth with tanning lotion. Lauren earlier had given the lotion to her because she had remarked that my sister’s legs looked so tan. Mom’s teeth were gritty brown after brushing with Coppertone. Bernadette gently told her to stop it.
“But the instructions say it’s for fair skinned people,” Mom replied.
The disconnects worsened; my mother wasn’t recognizing her children. I was braced one Saturday night with the dread of the disease. Walking into the living room, she screamed as if I were an interloper: “Who are you? Who… are… you? Get out of my house!” Her voice rose with each syllable.
“Mom, it’s me.”
“Get out of my house. GET OUT OF MY HOUSE!”
I was in shock and went immediately to the back deck to calm down, then returned minutes later to reassure her. She understood—realization in Alzheimer’s that perception is ever shifting. She hugged me. I let it go.
The following week, Bernadette visited again and asked Mom if she’d like to go to the cemetery to visit my father’s burial plot. Mom was reluctant at first, conflicted over Dad’s innate fear of death, then she finally gave in.
“Ok, I’ll go,” she told Bernadette in the haze, “but please don’t tell Dad!”
No one did.
A cemetery is the dividing line between life and death. And like my mother, I also had been putting off a visit, having difficulty confronting the reality of end of life. I awoke that Easter Sunday to a glorious early spring day, determined that I would make the trip. I stopped off first in Eastham to visit my mother. We had a good talk on the couch, an Easter blessing for me. Minutes later, my brother Andy called, and caregiver Gabriel gave the phone to my mom. They talked for a few minutes; my mother was general and rambling, but I could tell Andy was feeling pretty good about the conversation. Then Mom, without notice, asked him point blank: “Do you want to talk to Dad?”
There was a nervous pause. Mom handed me the phone; she had been calling me “Frank” and “Dad” on occasion for some time.
“You sound pretty good for a dead guy,” Andy told me.
“Andrew,” I replied, “today is the day of the resurrection!”
****
Cemeteries are spooky places. I hate them. But Easter seemed to take the edge off. The sky was deep blue, and a gentle breeze drifted in from the Atlantic. Salt was in the air. I had much to tell my father, regrettably things I never took the opportunity to say. I always thought there would be another day. Today was the day.
The unmarked gravesite was barren, no headstone yet, and the plot was still dirt. I was alone, so I got down on my hands and knees and started running my fingers through the dirt, deeper and deeper, from finger tips up to the wrists. I let my heart out, telling my father how much I missed him, that we were taking good care of Mom, that I was scared, and that I never had any sense of the finality of death until now. I was sobbing.
But I didn’t feel the love. Something was radically wrong.
I reached for my cellphone to call Tim.
“Where’s Dad buried?” I asked.
“Next to a guy named O’Rourke,” Tim said.
“Right next to him?” I replied. “Sure?”
“Yeah, why do you ask?”
“Just wanted to know.”
I had forgotten the location of Dad’s gravesite. Slowly, I stood up, brushed the dirt off my hands and knees, and moved tentatively one step to the left, to my father’s proper grave.
“Dad, as I was saying,” I began.
I can imagine my father and O’Rourke belly laughing up in heaven watching the fiasco, my dad telling O’Rourke, “That’s my dumbass son. He doesn’t even know where I’m buried. He’s blubbering over some dead guy that he doesn’t even know.”
****
Death has a way of swaying truth from secular life. The truth is found in a soft, honest voice inside all of us, if only we listened more. “Death where is thy sting,” to quote Apostle Paul. But close to the end of my mother’s life, I lost my inner ear, and began listening to others, like a wave tossed by the sea. Mom finally set me dead straight.
The siblings were at odds over whether she should stay at home in Eastham or move to a nursing home, a similar wrangle in scores of families. My sisters, yet again, wanted Mom in a nursing home, and the boys were pushing to keep her a
t the cottage with full-time caregiving. A nursing home, the boys felt, was a place to die. In retrospect, perhaps my sisters were right. Maureen, Lauren, Justine, and Bernadette advocated strongly for Mom to be placed in a Greenwich, Ct. facility, not far from Rye. I was finally listening and agreed to visit the facility in late April of 2008. It was a nice place, as nursing homes go—friendly, well-kept, and professional. Greenwich is a fine stately town for a woman raised on Manhattan’s elite side.
“Mom would be safe here,” I thought, still feeling in my gut that it wasn’t right, but emotionally spent and wanting to accommodate my sisters. I was emptied of emotion, giving in, verified that Mom was heading to Greenwich.
After I returned from Connecticut, my wife and I went to the cottage to visit my mother. Again, she was in a haze for most of the time, just gazing out the window into a dense patch of scrub oak and pine. I spoke with Mary Catherine within earshot of my mother about plans to relocate her to the Greenwich nursing home. I was still ambivalent about it, searching for the courage to pull the cord. I was speaking as if my mother wasn’t in the room; I had assumed she was on Pluto. We talked on.
“Greg,” my mother interrupted, breaking 15 minutes of staring silence. “GREG,” she shouted. “THAT’S NOT A GOOD IDEA. IT’S JUST NOT A GOOD IDEA!”
She looked straight at me like a mother disciplining a son. I signed on.
Mary Catherine was stunned. I was dumbfounded. But I had my answer. There would be no trip to Greenwich. Mom had spoken from deep within her soul, as those with Alzheimer’s often can, if we would listen to them. She had set me straight and I was following orders from my mother.
Whether with Alzheimer’s, other forms of dementia, autism, or some other brain default, the inner spirit, I believe, communicates at some level. I saw it with my mom and I saw it in my grandfather. Today, I see it with my nephew, Kenny McGeorge, a 24-year-old in Scottsdale, Ariz. who battles severe autism, with the help of selfless, loving parents, Tom and Barb. Kenny never gives up and always looks for the upside in life. Kenny and I text all the time, as he does with others, sometimes in the middle of the night. Often, I get a text from Kenny when I can’t sleep and feel isolated. I realize then that I’m not alone. Kenny gets it. He’s one of my best friends. He is not stupid either; he just has a disease. Brain defect and disease is not a mark of intellectual bankruptcy, but often a marker for courage and perseverance. Kenny is all of that; so was my mother.