by Greg O'Brien
But reality has its day and it was clear to me, over time, that my mother could no longer stay in the cottage. Alea iacta est. A die had been cast.
A compromise family decision was made—Mom would go to Epoch in Brewster, a caring nursing home about two miles from my house. My brother Tim was on hand for the move. But I had to deliver the news first—a one-on-one discussion with my mother, who had fought her disease to the point of submission. The exchange between us was wrenching, immediate. When I arrived at the cottage, Mom was at her usual post—sitting at the dining room table, staring deep into the woods. I’ve had to deliver bad news many times in my life, all of which paled in comparison to this discussion.
“Mom,” I began. “Today is the day you have to leave. We’re going to a new home in Brewster,” I said.
She didn’t budge. She was shaking. Violently. And turned away.
“Mom, do you hear me?” I said, reconnecting eye to eye. “I’m going to take you to a place closer to me. Dad wants you there. I want you there. All the kids want you there.”
She kept shaking.
“Mom, look at me, please look at me.”
Slowly, she turned her eyes toward me.
“Mom, I would never do anything to hurt you. I know this is difficult. We love you, but this is best for you. I promise.”
She turned away.
“Mom, look at me. Do you love me? Do you trust me?”
She sighed, exhaled as if letting the air out of a balloon, releasing emotion in an exhale that seemed like an eternity.
“Yes,” she said. “Yes.”
She stopped shaking.
Minutes later, as I was in the back yard, speaking on the cell phone with an old friend and colleague, Mike Saint, she walked out the back door and headed to my yellow Jeep. Gabriel, the caregiver, was behind her, signaling the moment at hand. She was ready to go. We left without her bags.
On the drive to Epoch Mom noticed yellow cars in front of us and behind us.
“Look at that,” she said. “I can’t believe it!”
“Believe it, Mom,” I blurted in faith.
I called Tim at the cottage; he had been gathering Mom’s things, given our hasty departure. “Tim, you’re not going to believe this. There are two yellow cars in front of us and two behind us. Impressive, but freaking me out!”
Within a few miles, the yellow cars peeled off, only to be replaced shortly by another escort of yellow cars. The exchange occurred, on and off, all the way to Epoch.
At the nursing home, Tim and I tried to make Mom’s new room as homey as possible, hanging family photos on the walls, and bringing a few small furniture items that, hopefully, would jog her memory. We both felt sick that day, the kind of emotional pain that starts in the feet, hits the stomach in nausea, then races to the head. Purposefully, I hung a sepia tone photo of her father, “Daddy George,” at the foot of her bed. He stared down in comfort right at her. The photo now hangs in my office today over my desk.
Tim’s departure to Connecticut was particularly upsetting for me. My mother and I were now both alone. I returned to Epoch with my son Conor to visit with Mom and brought along a glass of Chardonnay for her and a beer for Conor and me. Within minutes, an elderly woman in a wheelchair, far into the depths dementia, raced into the room, as if she had just jump started a NASCAR race. I dubbed the woman “Mad Martha,” and she was deep into Mom’s personal space, and speaking nonsense. Mom, near her end, could still recognize nonsense when confronted with it.
“Get out of my house,” she yelled yelled at the woman. “GET OUT OF MY HOUSE!”
Martha departed in an instant.
“Dad,” Conor said, “I think I’ll have that beer now!”
****
Mom’s stay at Epoch was brief. She had come here to die. Often, the two of us watched old black-and-white movies together in the facility’s common room, filled with other men and women in late stages of dementia. The staff was incredibly caring, but the setting had all the ambiance of Ken Kesey’s One Flew Over the Cuckoo’s Nest. I was getting a first-hand look at what lay ahead.
“That’s right, Mr. Martini, there is an Easter Bunny,” I recalled from the movie.
Sitting with my mother one day in the common room, watching black-and-white reruns of It’s A Wonderful Life, I whispered to her that I had to visit the men’s room.
“I’ll be right back,” I told her quietly, worried that she would wonder where I went. “I’ll be right back.”
“I CAN’T BELIEVE YOU JUST SAID THAT!” Mom replied in a loud, clear voice that resonated throughout the room, and reinforced in me that she was still my mother, I was still her son, and she was still in charge. But she was connecting dots that had no relevant tangent.
“I can’t believe you just told the entire room that you had to pee!”
Her reprimand was greeted with universal applause—men and women in their 80s, all fighting Alzheimer’s and all regaling in an opportunity to be in charge again. Dementia cannot rob an inner spirit. I was thankful to be part of this palace revolt, hearts crying out for relevance.
Weeks later, Mom was overcome with pneumonia and carted around an oxygen tank, as my father had before her. She was frightened; her frail body was breaking down. I told her not to worry, that we’d all stick by her side. She turned to me, looked me right in the eye, and said: “Like glue! We stick together like glue.”
There would be no Easter Bunny today, Mr. Martini; the following morning when I arrived, I found my mother sitting at a table staring intently at a photo of her children, taken many years ago on the back deck of the Eastham cottage. She was about done at this point, I could tell.
“Mom,” I said. “You don’t have to stay here. You can go home.”
She stared at me.
“You can go home to Dad, to your parents, and to sons Gerard and Martin. You can go home any time you want. You’re the boss! You don’t have to stay here and talk to knuckleheads like me!”
My brother Tim had delivered a similar message earlier.
Mom smiled, the forgotten glance of a young mother. She sighed again, closed her eyes, and slid wistfully back into her chair.
Later that week, I got the call about 10 pm.
“You mother is not doing well,” the nurse said. “She’s scared. She needs you.”
I raced to Epoch, about a two-mile drive on a dirt road through the woods, hitting all the potholes in my yellow Jeep from the trot of horses on this country road, rear wheels sliding left, then right as I pressed ahead. When I arrived minutes later, my mother was deep asleep. I woke her to let her know she was not alone.
“Mom, I’m here. Sorry to wake you up, but wanted you to know I’m here.”
She smiled again. There was a countenance about her that said something was about to happen. She seemed more alert, more at peace. Her father, Daddy George, glancing down tenderly from the framed photo on a wall at the foot of her bed, was staring right at her. I felt his presence in the room.
I put my left hand over my mother’s left hand as she lay in bed. She was so sweet at the end, much like a compliant grade school child, like the ones she had taught in school. Slowly, she put her right hand on top of my hand, as she had done four months ago on my father’s deathbed. We talked, as one can on the steps of death. I waited until she fell back to sleep, then kissed her on the forehead as I prepared to leave.
Her green eyes opened wide. “Greg, where are you going?” she said in a soft voice.
Knowing in my soul what was about to happen, I sat back down, held her hand, looked into her eyes, and said, “Mom, I’m not going anywhere. We’re riding this one out together …”
The time was now. As I sat there, I recalled that she had told me just weeks earlier in what were to be her last instructions: “We all have a purpose in life. Go find it!”
I had trouble in the moment finding the purpose of death. But I stayed by her side until she fell back to sleep again. Then, I kissed her on the forehead, know
ing the long kiss goodbye was over.
She died hours later.
14
GROUNDHOG DAY
DEATH OBSERVED UP CLOSE IS A MUSCLE MEMORY THAT one never forgets. Memories of my mother and the reality that Alzheimer’s had conquered once again washed over me, as we prepared at Nickerson Funeral Home for Mom’s final trip to church. As the siblings queued up behind the black stretch limo, I told my brother Tim to pull his yellow Jeep in front of Mom’s hearse, and that I’d pull my Jeep behind it.
“Mom’s going to go home surrounded by angels,” I said.
The funeral mass was held at Our Lady of the Cape in Brewster on primal Stony Brook Road in the old historic district, a portion of which is listed on the National Register of Historic Places. Mom would have liked that. The church, with tongue-in-groove oak ceilings bowed like the hull of a boat, is an eight-minute jog from my house. The church was filled with extended family and friends. Older sister Maureen was the first to speak:
“How did Mom do it? She did it as many other women from her generation… with a great support system that they had among themselves. So, in the end, we thought she would stay with us a little longer, but she had other plans and kept to them. Mom, in all ways, was Dad’s anchor. She was the glue that held him and us together through good and bad times … What a job!”
And it was.
“But we have to stop meeting like this.” I said from the pulpit. “Two lives. Two deaths. Two funerals. Four months.”
****
My mom defined motherhood in an age when worldly accomplishment was all too often the mark of achievement. Ever petite, she could bowl the siblings over—knock us right off our feet like ten pins—with the largesse of her impressive intellect, wisdom, and ceaseless love. Good love and tough love, always justified and in abundant measure, as provided by most mothers of the Greatest Generation. She could burn our corneas with a polar stare, one that penetrated deep into the soul. There were many times I was convicted by her swift, rational judgments, but redemption is a wonderful thing. You have to give redemption to get it, and my mother had infinite capacity to forgive and to teach.
In death, she was still teaching.
My mother knew that I hated flying, primarily because the airlines always lost my bags. It was a regular occurrence. Two days after her death, I was in North Carolina for my daughter’s graduation from Elon, flying back hastily for the funeral. Sure enough, one of my bags was missing at T.F. Green Airport in Providence upon arrival. After a computer check, US Airways determined that the bag, tagged under another name, had been sent to Akron, Ohio. Someone at the counter had put the wrong sticker on it.
So, I had to spring for a new suit for the funeral. Mom always liked picking out my clothes; apparently, nothing in my closet had suited her taste. Still, she was calling the shots. And she knew I liked a good ending to a story.
“Now wipe that smile off your face, Mom, and please find my bag!” I challenged her from the pulpit at the end of my eulogy, hoping she would engage St. Anthony, the patron saint of the lost and found. Apparently, she had.
Hours later, when I returned from the cemetery, there was something waiting at the front door—my bag with the mislabeled sticker.
The sticker read “Brown,” my mother’s maiden name.
****
My dad was home. My mom was now home. And I was starting to wonder when the hourglass would be drained for me. I can’t get sick, I kept telling myself in Mom’s mantra. I can’t stop thinking, processing; I must stay wholly engaged; I can’t let go. So, just look as good as possible, my mother had told me earlier, and don’t let them see you sweat.
Letting go is surrender, Mom always said, yet freeing from the numbness of stress, fear, anxiety, and the fatigue of a fight. Pluto was looking pretty damn good to me now. But I knew better; at least I thought so. The progression of this disease is unnerving, cutting, and guileful. This monster will be slayed only when we collectively understand its extensive reach, not just at the end stage of the disease, but at the start of this chaos. As the sadistic Joker, Batman’s supervillain archenemy—the archetype of Alzheimer’s—observed in the 2008 movie, The Dark Night, “Introduce a little anarchy. Upset the established order, and everything becomes chaos. I’m an agent of chaos. Oh, and you know the thing about chaos? It’s fair!”
No, it’s not fair. No purpose in that. C’est la vie.
There is purpose in a driven life, but when the purpose ends, one must reset the timer. Death has a way of liberating one from duty. I had been honorably discharged. But, what now? When my folks passed away, my son Brendan—having witnessed the toll front-line caregiving had taken on me and the family—promptly declared, “Now we have our dad back!”
The toll had been extreme on Mary Catherine and the kids. I was missing in action as a husband and father, but saw no way around it. Mary Catherine bountifully carried water for me as mother and surrogate father, buckets of it; still does, as she had for my mother. I felt conflicting obligation and guilt as resident family caregiver for my parents. I reasoned at the time that it’s easier to ask for forgiveness than for permission. I asked for forgiveness.
I was back as a father, but would never be the same. I couldn’t reset the timer. I couldn’t even find the damn thing. The events of the past five years and a progression of symptoms had me several quarts down. I had been on high alert, and it wasn’t until my discharge from service that I began to discern my present state of mind. I had awoken from a nightmare, only to find myself in the middle of one. Like wandering Pittsburgh TV weatherman Phil Connors, adeptly played by Bill Murray in the movie Groundhog Day, I was in a Punxsutawney time loop, trying to get it just right, walking day in and day out in the footsteps of my mother, who had cut a trail for me. I began scribbling down more notes before the thoughts escaped, emailing and texting myself often 30 or 40 times a day, as short-term memory began to disintegrate. One day after scribbling for hours in an Orleans coffee shop, a woman came up to me and asked if I was Stephen King; apparently she thought there was some resemblance.
“No,” I replied, “but I’m writing about a horror story.”
The plot unfolded weeks later in a car wash. My Jeep was awash in mud on a day the neurons weren’t firing properly. Entering the automated car wash, those rubber slats slapping against the windshield became, in my mind, a platoon of horrifying creatures from the movie Alien. I panicked and drove off the guardrails, hanging up my yellow Jeep sideways inside the car wash rails. The attendants had to swing it around. I knew the manager, who quickly sized up the situation, accepting my loss of synapse. Redemption.
“Not a problem, Mr. O’Brien,” he said quietly, with disquieting realization of what had just transpired.
Those with Alzheimer’s need acceptance where they are, even in the flush of a car wash gone awry. So it is with cutting a lawn. I’m just a consummate lawn guy who enjoys riding my lawn tractor, as much as my Jeep. Weeks later, while on my lawn tractor when the synapse was failing again, I got this random idea as I began cutting my lawn—an acre of overgrown blue-grass and creeping red fescue: Why not cut my neighbor’s lawn—Brewster’s town administrator, Charlie Sumner, the “mayor” of the town—just across the street? Seemed like the right thing to do. As I headed down the steep hill on Stony Hill Road into heavy traffic on Stony Brook Road, whizzing by, often at close to 50 mph, something in the deep recesses of my brain told me this was a bad idea, a very bad idea. My attention was then drawn to a neighbor’s lawn through the back woods behind our house where a delicate man in his 70s was placidly cutting with a push mower. The old way. Without rational thought, I took a hard right into the scrub pines, blades aglow, cutting through the underbrush—saplings of oaks, pine, and a few maple trees. The piercing grinding echoed throughout the neighborhood. Sounded like screams of mercy. My neighbor must have thought I was Freddy Krueger from Elm Street. I never made eye contact with my elder neighbor, just trimmed his lawn in perfect parallel lines, then sharpl
y hung a left back through the woods, the grinding of the underbush again intense. The poor man fled into his house, probably scared shitless. Four days later, he discretely delivered a hand scribbled “thank you” letter to the house, presenting it to my son Conor; hopefully, not after seeing a shrink. Got a Christmas card from him that year, as well.
Long-time friend and watchful eye, Brewster Police Chief Dick Koch, a brother to me, commanded later that he never wanted to see me driving down Stony Brook Road on my lawn tractor. His boys would pull me over. Ultimatum accepted!
****
The nights were getting longer as 2008 faded to 2009. I couldn’t sleep. More and more, I was seeing frightful images, knowing intuitively that they weren’t real, yet terrifying. I chose not to discuss this, mostly out of embarrassment, for fear I was losing my mind. I didn’t want Mary Catherine to worry; also didn’t want—out of foolish Mick Irish pride—any pity, judgment, or sympathy. And the thought of telling my children about this was anathema. Try this one on: “Hey kids, I’m losing my mind! But don’t worry, your dad can still find the fly on his jeans when he goes to the bathroom.”
Such discussion in this earlier stage would have been de-meaning for me and hurtful. I was beginning to comprehend how others with Alzheimer’s cope, looking inward in loneliness, rather than seeking help from others. Who could ever understand? My self-esteem was, and is, at the low-water mark.
More and more, I was not recognizing familiar faces, the rage was intensifying, short-term memory on the wane, judgment deteriorating further with an ever slowing breakdown of mind and body, personal finances in greater disarray, and I now began engaging in random emailing, calling, and texting the wrong people in a breakdown of synapse. The experts call this “confabulation,” a memory disturbance, defined as the production of fabricated, distorted, or misinterpreted memories about oneself or the world, without a conscious intention to deceive. I call it Alzheimer’s, a place where the brain is searching for meaning with wrong data and randomly connecting dots.