Awakening

“Everything exists because you exist.”
Swami Muktanada

I found my mother in the emergency room, sitting on a gurney, angry and confused, skinny to the bone. Her hair, dyed a purplish hue, was matted to her forehead, and a bloody red scar shone above her eyebrow. She looked like a witch. While we waited, I stroked her back; I could feel each sharp vertebra through her gown. She asked for her purse, but there was no purse. Within a few minutes, a geriatric intern came down from the psychiatric wing of the hospital ready to determine the state of my mother’s dementia.

I had thought the test would be extensive, an MRI and an EEG involving a battery of wires hooked up to her brain. But the young intern—a smear of pimples on his nose and a bored look in his eyes—merely stood beside my almost naked old mother, who was perched on a metal slab of a table, and asked her a series of questions: Could she name any four-legged animals? Did she know how much a quarter, nickel and dime added up to? What kinds of items did one buy in the grocery store? What time was it? He drew a clock face, and then another asking again, “What time is it now?” When she couldn’t answer, he went on. What had she done for a living?

Well, she was able to answer that one, “I’m a writer,” she said proudly, “a short story writer.” But when he asked, sadly, for the names of any stories she had written or where they had been published, she looked over at me, that narrow face of hers with her small, close-set eyes, squeezing, trying to pry the memory out of my brain. “Gaby,” she pleaded.  “You know.”

I did know. I could list for this intern the titles of her stories and their publications. I knew the names of animals, from antelopes to zebras. I could give him a grocery list that took him up and down each aisle of the store, recite the alphabet backwards, add money, tell time, give the correct date, April 8th 2005, and name the current President. But she could not. Gone too, was her magical gift for the recitation of poetry. Now, she could no longer even tell us where she lived. When my mother realized that I would not supply any of the answers—this was not a test that either one of us could cheat on—her already pale face went white in fear. I turned my head and looked away.

For that moment, perhaps even that hour, she knew. She saw him pull me aside and heard him say, “Your mother has Alzheimer’s dementia.”

“Gaby,” she called, sharply from her gurney.

“I hate it,” she told me later. And then speaking of the young, bored intern she spat, “I hate him.”

*

Six hours earlier, when the phone rang at 5:37 a.m. in my bedroom on Long Island, I had noticed as I picked up the receiver that the caller ID read Hartford Police, but I had not been surprised. I was only surprised that the story wasn’t worse. No fire, no death on the highway, no fall down a flight of stairs resulting in a broken hip or a busted back, just my mother driving alone, hallucinating that she was traveling with a car full of demonstrators. But she was not en route to any demonstration. She was lost. The policeman on the telephone told me that she had no purse, no driver’s license, that she was belligerent and confused and driving the wrong way on a one-way street in the middle of the night. When questioned by the officers in the patrol car, she could not tell them where she was going. People, she insisted, had been in the car directing her, though now they seemed to have flown the coop.

She knew her name, but not her address. At that moment she could not recall the name or phone number of any relative. She said she thought she had a mother. In 2005 my mother was 80 years old and she thought her mother still took care of her. When the police officer radioed into the Hartford Police Station he discovered that my mother had a file, and attached to that file was my name and phone number. As luck would have it, one month earlier, not being able to reach my mother by phone, and not being free to drive the four and a half hours it would take to get from my house on Long Island to her house in Connecticut, I had called the Hartford Police and asked them to drive by and check on her. That time, she had greeted the officer cheerily at the front door, as if nothing was amiss.

But inside things had been piling up. Not just the unopened mail heaped on the dining room table and spilling onto the floor, but her checks were bouncing, she was burning food to the bottoms of pans on the stove, leaving glasses and dishes scattered about the house. Most frightening of all, my mother had become a wanderer.  In the middle of the night she was seen trotting along the busy thoroughfare of Farmington Avenue towards the closed grocery store. She rode the ferry back and forth across the Long Island Sound, because she told the captain, “I cannot land; I have no country.” Then, only a week earlier she showed up at her friend Jill’s house—it was not even 7:00 a.m.—unaware of the bleeding cut on her forehead.

Yet even then, my mother would not see a doctor or consider a neurological exam. “I’m fine,” she told me when I called. “You’re the one with the problem.” I was nosy and cruel, a busy body who didn’t trust her.

In the initial onslaught of her dementia, my mother was as squirmy as a young cat, often hard to grab hold of and keep inside the house. Alzheimer’s is tricky and elusive, and not just for the patient, but for the witnesses and caretakers as well. You have to ask yourself, who of us really wants to know this sad truth?

For nearly a year I had been struggling with this cat. Her belief in her view of the world was stubborn and defiant, particularly since her diseased brain was the one challenging the authority of the facts. I reasoned that my mother was never good at accepting the truth. As a writer she had been a more comfortable inhabitant of the terrain of fantasy and fiction than nonfiction. Yet, my own truth was that it would have been easier for me to find a different set of explanations—it was the fault of her personality, she was too much a day dreamer, never a present parent—any behavior that allowed me to believe that it was not Alzheimer’s come knocking at the door.

My ex-husband once called me a dart, a sharp little object flying at its target. He was referring to my behavior in preparing for our divorce. Still, he was right. In carving out my personality against the backdrop of my mother the escapist, I’d become more sharp-eyed eagle than sneaky, skittish cat.

“My daughter the planner,” my mother used to praise.

A talent I’d always considered invaluable.

In anticipation of this moment, I had dragged my mother to a lawyer and extracted a Power of Attorney and Health Care Proxy.

It took three hours. “What does durable mean,” she’d kept asking.

“Lasting,” we both said, “Indestructible.”

“Like garbage?” My mother had asked.

Finally, pulling the lawyer out of the room, whose rate for this task was two hundred and fifty dollars an hour, I said, “She signs those paper or I can’t access her funds to pay you.” In the end she signed, granting me powers she would have easily relinquished had she not been scared and demented.

Now, when I put down the phone with the Harford Police, I flew towards my mother with these documents of my authority clasped tightly in my talons.

But the weather on the Long Island Sound that morning did not cooperate with my journey. The fog was so thick and dense it brought the ferry to a stand still. Just dead water outside the dirty windows, for the world had disappeared. The curtain had gone down on the show outside, and I sat there, frustrated, pulling my hair in front of my face, softly crying as the boat gently rocked back and forth and did not move. Staring out the window, I thought how much this weather of creamy white soup resembled my mother’s brain. It was not so much a blackout for her, as a whiteout. She was not asleep, she never slept anymore, but was perpetually awake, pacing from room to room and moment to moment, walking as if her footsteps would do what her brain no longer could—connect the dots. But the tangles were too thick, the relay racer could not hand off the baton, or find the next agent, and so the signal died, but the steps for now went on.

That was why she was wandering, I finally saw. Once the idea was lost, the thought was lost and there was nothing to do but search. Like the unmoving ferryboat, she was stranded in a murky landscape, unable to see her destination or set her course. Yet, out of habit, out of need, her brain still craved the appearance of an objective.

And so I found her in the hospital, marooned up on a bed, in the cold room, with the bored young intern and his list of unanswerable questions.

“What did he say?” she wanted to know after he left.

“He said you can’t live alone. He said you need help.”

“I heard him.” She cried.

“I know, Mom. Don’t be scared.”

“Ha,” she burst out with a fierce noise, scary and naked. And then in one of those moments of clarity that were frightening because during them she briefly realized what was happening to her, she said softly, “You’re kidding.”

*

Later that day a social worker assigned to my mother’s case at the hospital explained to me that the test she had been given was called the Mini Mental State Examination. “It may seem crude, but the test is extremely effective,” the social worker told me. We were sitting in her crammed office; the desk between us piled high with papers. She looked down at my mother’s chart and then told me that my mother could no longer tell time. She was disoriented, could no longer form abstract thoughts and her recall and recognition were greatly diminished. She was incontinent and rapidly losing verbal and written cognition skills. Already she was in mid-stage Alzheimer’s, sometimes aware, sometimes unaware.

That’s when I pulled out my file and waved my Power of Attorney and Health Care Proxy at this kind woman, over the high mountain of papers. I didn’t know what good I thought they’d do. Maybe just tell her that I had come prepared.

She nodded gently over my forms. “The best thing you can do now,” she said, “is accept her view of the world. Now let’s talk about where she needs to live.”

*

Shortly after her visit to the hospital I placed my mother in a nursing home. Thankfully, by then she had forgotten about her diagnosis. What she remembered was the excitement of driving her car, the sounds of the wind whooshing against the windows and the protesters chanting in loud voice. She remembered how important she had felt driving them towards their demonstration. “Why else would I have been out on the road?” she asked me. In the end, this seemed like the best explanation. The social worker was right, accept her view of the world. Perhaps her version of events was inaccurate, but its purpose was the same as if it had really happened. Like her endless footsteps, this story served to thread her from moment to moment so that she could make sense of her situation. Her mind had decided that a demonstration was in order, and who was I to argue with that? For a while, this story was as vivid to my mother as the scar on her forehead was to me. Now, both the scar and her memories of that night have faded.

In the face of this long-term disease, tests and documents and fixed objectives do only so much good. I used to claim I knew what my mother needed and what was good for her, but Alzheimer’s has a mind of its own. The key is to be flexible. Who of us really knows where reality resides? It’s not a place you can pin point. It’s not even a moment as it turns out, but a series of moments with a blank space in the middle—the blind spot, that view of white soup outside the ferry window—inside this frame, we do our best to fill in the picture based on our stored bank of images. We know how to tell time, name the presidents and recite the alphabet. We know the difference between the chime of a bell and the beat of a drum, because we once learned these things and now remember them. At best, reality comes down to a collective assumption. We are approximating, and the miracle is that we approximate so well. My mother was now adrift and cut off from this shared bank of knowledge, even her guesswork was faulty.

They say Alzheimer’s patients can teach us to live in the present and enjoy the moment. Frankly, I have a hard time understanding why a present, disconnected from memory or future hope is such a good thing. Yet, this is a point I am trying to concede. Right now my mother is happy. It’s been two years since her arrest and diagnoses and when I told her she was 82 years old, she merely laughed and laughed and played a game of peek-a-boo with me, giggling from behind her fingers. Her little eyes, not so bright anymore, crinkled in joy.