There were only seven stages of Alzheimer’s and my mother was already in Stage 5 when she moved herself out of our house. Half a year later she had progressed to Stage 6b.
“How did she get that far without anyone noticing?”
That was one of the first questions the Life Care Committee asked me. A reasonable one too. How did most people end up in a doctor’s office talking about Alzheimer’s? Because someone close to them had observed any one or more of the following:
Trouble paying bills on time.
Wearing the same clothes day after day.
Trouble making meals for guests.
Difficulty going grocery shopping.
Difficulty remembering the right date when writing checks.
Difficulty recalling current address.
Difficulty recalling recent major events.
They had leveled their gazes at me, as if to size me up, the daughter who hadn’t noticed her mother’s decline. But they didn’t know the particulars of my mother’s life. The house had been paid up long ago, the electric bill came automatically out of her bank account, there was no gas or oil bill because she heated the place with wood. There were almost no checks to write because there were few bills to pay; she was a cash woman for the most part. As for clothes, she had always worn the same clothes anyway: jeans and a T-shirt and a sweatshirt or her lumber jacket or a parka, depending on the time of year. Keds or winter boots, again depending. She didn’t make meals to begin with, for either herself or guests. She didn’t have any guests, beyond Annabelle Lee once in a while. As for current address, Sterns, New York, was good enough. No house numbers, no street names, no apartment or condo unit or suite to remember.
As for recent major events, what would qualify? Putting the orange juice away in the cupboard instead of the refrigerator? Getting pulled over for erratic driving on Starr Hill?
Yes. Those events were, in fact, the major events that precipitated the slow topple of all the dominoes that followed.
My mother was a woman of simplicity. It took the disease a long time to complicate that simplicity. Now the complications were evident every time I looked at her. An aide helped her in the bathroom, for example. And she didn’t go on the field trips anymore. No more museum. No more mall. No more library. No more Erie Canal Village, no more Dairy Queen, no more strolls around the campus of Utica College.
The day came when she looked at me and asked how she knew me.
The minute she asked me that question I tried to banish it from my mind, tried to shoo it away, because How do I know you again? was not a question you expected ever to hear from your mother. But too late, it was already burned into my brain. I stood there frozen in the doorway of her room, my book offering of the week in my hands.
That was the first but there had been many more since. “Daphne,” she had called me, and “Mama,” she had called me, and once she had called me by her grandmother’s name: “Helena.” By the time she called me Helena I was not surprised. I did not laugh or startle or ask who Helena was. What I did was smile and say, “Hi, Ma.” Because that was what you did when you were riding the wave with your mother. You followed her.
Everything progressed. Everything kept moving on down the highway, including my mother. She fidgeted, she paced, she wandered the endless hallways.
Early-onset.
Alzheimer’s disease.
Fifty-percent chance of genetic mutation.
Frontotemporal dementia.
Memory care.
Assisted living.
Independent ambulation.
Increased rigidity.
Neurological reflex changes.
Power of attorney.
AD.
eFAD.
FTD.
DH.
DW.
LO.
All the medical terminology on the official websites. All the shorthand on the caregiver forums, all the uppercase abbreviations that stood in for dear husband, dear wife, loved one. Every one of them an acronym that masked the face of a loved someone. Sometimes, in the middle of the night, when sleep eluded me, the acronyms came calling. They gathered together like bees to the hive, and I was the hive and they crawled on top of me and inside me and burrowed deep, humming and buzzing. You, they hummed, you, you, you, you too? You too? You too? Maybe the day would come when I found myself behind the wheel of an unfamiliar car, driving around a bend I couldn’t recall, on my way to see someone I didn’t remember. Fifty-fifty. Five-oh. Maybe the bees were already living within me.
* * *
Follow her.
That was what the doctor and the Life Care specialist told me to do. Follow your mother wherever she goes. Meet her where she is, not where you think she should be. She was unsteady these days, her balance off. They had given her a walker but she was “not fond of using it.” She had entered a stage, “not unusual, apparently, in our experience,” where she kept wandering the halls looking for something. “In your mother’s case, her daughter. You, apparently.”
There was that word again, their favorite word: apparently.
“Her daughter?” I had said, at the last Life Care meeting. “But it used to be keys. Remember? It was always keys.”
They nodded. They were patient. Keys, daughter—what was the difference?
“We know it’s unsettling,” they said, “those times when you’re sitting right next to her on the couch but she doesn’t recognize you as her daughter. We get that”—which was another thing they kept saying, we get that—“but it doesn’t mean that she doesn’t appreciate your presence.”
“Okay,” I said. We were in this together, all of us: the doctor, the Life Care specialist, Sylvia and the aide and me and even the director, who liked to drop in once in a while to keep her “finger on the pulse.”
“You’re a writer,” the doctor said, encouragingly. He pointed at the book I had brought for her that week, Little House in the Big Woods, as if to prove his point. “This assignment might not be as hard for you as it is for other people, to follow your mother wherever she goes. Writers have good imaginations, right? Isn’t it part of the job description?”
The aide, Sylvia, the Life Care specialist and the director all pursed their lips and nodded. They sat in a row, all four of them, pursing and nodding as if this were community theater and they were the Greek chorus.
“It is,” I said. “It’s part of the job description.”
At that, they nodded and pursed even harder, quickening their pace. Wind-up Greek chorus dolls that someone had just snuck up behind and cranked up a notch.
“Oh, yes,” Sylvia said. “You’ll be great at that, Clara.”
She smiled at me. It was a real smile, a smile that said she knew I was worried about not doing a good job. As if I were a child getting ready to head to Syracuse to the state spelling bee, a child who had practiced for weeks, asking anyone—meaning Tamar—to read out the words from the practice book and use each in a sentence if necessary. As if I were my former self, Sterns Elementary spelling champ, and my mother were her former self too, Tamar Winter, the tough-as-nails mother of the champ.
* * *
“Autochthonous.”