On Pluto (23 page)

“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 at 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.

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.”