Words

You might think words live in your mouth. But you would be wrong. Your lips, your tongue, your cheeks, your teeth are just a vessel language moves through. The headwaters of language rest deep inside your brain where image, sound, and memory curl into meaning, flow into words, and cascade into sentences. It can dry up or slow to a trickle.

“Names are gone now,” my mother announced. She said it casually. Conversations got a little mysterious. The characters were nameless. I was left to wonder, leaning in to glean insight from context, to determine who exactly had said or done or failed to do whatever action was the topic of the story.

Some people with aphasia create piles of language, spoken with earnest intonation, but without order or reason. Professionals refer to this casually as “word salad,” which I find too benign a metaphor. “Word prison” seems more appropriate.

Aphasia is the loss of production or comprehension of speech and the ability to read or write. Most people with dementia lose language later in the course of disease, as all functions recede. But my mother, the woman with a life-long love affair with words, the late-in-life poet, the teacher who’d filled my life with books, had won some mean-spirited lottery. She told me once that losing the ability to read was the worst part of having Alzheimer’s Disease. Except she couldn’t remember the words “Alzheimer’s Disease,” so she said, “this thing that is wrong with me.”

Some people with aphasia create piles of language, spoken with earnest intonation, but without order or reason. Professionals refer to this casually as “word salad,” which I find too benign a metaphor. “Word prison” seems more appropriate.

My mother made meaning with her language, though her words would slip and slide out of order or sink beneath the surface just as she reached for them. Her understanding of language might collapse if a spoken sentence had more than one clause. But sometimes in her determination, her words would come out extra concentrated and potent, like the poetry she had to give up writing.

I sat at her wooden dining room table. The room was bathed in sunlight shining through wide windows, filtered gently through the leaves of the maple tree that towered in the center of the yard of my childhood home.

I was picking my way carefully through a murky conversation about her future.

“You are in a tricky situation.” I said.

She doubled over in incongruous laughter and exclaimed, “I want that on my tombstone!” Except she couldn’t remember the word “tombstone,” so she said, “I want that on the spot where I die.”

Truth

Later that same visit, or perhaps it was another, time runs amok, my brother and I waded cautiously into questions of the future once again. Perhaps, she said, she would be the first Alzheimer’s patient to recover. I was interested in nailing down some details and a plan. She preferred to keep the expanse of possibility open.

My mother looked across the room at my brother.

“She always insists on the truth, doesn’t she?” she commented as she stood up from her chair.

“It’s not very cheery,” she added over her shoulder as she turned and walked toward the kitchen.

I thought it was funny, her casting me as the truth-teller. I was thinking of myself as something else. The truth was clogging my throat. I was metering out bits of truth like an IV drip, calibrated to what I imagined was a tolerable level. I preferred her version of me.

23 years earlier, I told an unacceptable truth.

I was nineteen when I came out to my mother. She said, “I will always love you, but, there is nothing worse you could have told me, barring fatal illness.”

I told the truth about myself mostly because I loved her and didn’t want to fill the space between us with lies. But a smaller, less noble part of me took immature pleasure in knowing it would cause some trouble.

Perhaps ten years later, long before she was sick, I reminded her of her hurtful words.

“Oh, I don’t think I would have said that!” she replied, aghast.

But I have it on paper. It’s in the first letter she wrote back to me. After her disbelief that she could have said such a thing, I climbed into my attic and dug to the bottom of a box to find the letter. It was terrible to read it again. I’d allowed myself the possibility that I had remembered it wrong. Sitting cross-legged in my musty attic, letter in my lap, I felt reassured in the solidity of my memory, but abandoned again looking at the words on the page.

Despite all the loveliness we found, there remained, for a very long time, a space between us. A space of questions unasked. A space of joy and heartache unshared. A space defined by my differentness and her discomfort.

We had more letters in the months and years that followed that difficult beginning. She came around. She read a blessing at my wedding to my wife. She fell in love with our son so deeply that she bloomed into a poet. She wrote 51 poems in his first year of life, each titled by the number of days he had been in the world. Years later, sleeping in a childhood bedroom in my mother’s house, I would find my letters to her. They were folded into a book I had sent her called “Mothers of Different Daughters.”

Despite all the loveliness we found, there remained, for a very long time, a space between us. A space of questions unasked. A space of joy and heartache unshared. A space defined by my differentness and her discomfort.

Lost.

The unraveling of a mind from Alzheimer’s Disease is a long and complicated process. You don’t know which bits have been cast off until you are waiting by the car after the church bell rings, without your mother.

She was in Seattle for a long visit. It was probably three years after her diagnosis. Since my son was born a decade earlier, she had come for long stays. She learned the local bus routes. Made friends at the bookstore. Spent hours grandmothering, instilling in my sweet kid the love of all the right things: books, beauty, bodies of water. This visit was her first time back to Seattle in almost a year. A year when letters stopped sliding into words. A year when her favorite food became a delicious surprise each time it was placed in front of her. A year of letting many things go, or at least, watching them leave.

The visit was sodden with the anticipation of loss. Unable to navigate the demands of an airport security line, family friends had shepherded her across the country to me. We were pushing the envelope of possibility, and we knew this visit would be her last. She was still holding on to living at home, with hours of help and emergency visits from my brother. We worried about the risks of disrupting her delicately managed routine. But she wanted to come. My brother and I wanted to make her happy.

On the first Sunday at our house, my mom wanted to walk to church. She was unreasonably confident. She had gone to Mass at that same church dozens of times during past visits, but her estimation of her capacities was always optimistic.

I insisted on driving. I gave simple instructions when I dropped her off. Return to this car, in this spot, in view of the church door. I waited in the car on the corner of Spring Street, across a parking lot and a green field. When the church bell rang, I squinted to see the small crowd pour out the doors of the chapel. As it dwindled, I felt a tightness spread from my stomach to my chest.

She told me afterwards that instead of coming back to the car, she’d headed “toward a place where I thought you might be. It’s a place where you can eat food.” She’d remembered the Starbucks two blocks south. In years past, I used to often meet her there. I had thought it was too risky this time to ask her to find it.

The baby-faced security officer who found her wandering down 12th Avenue was smiling and chatting with her as they walked back toward me on the sidewalk. She developed that ability to put people at ease, even, maybe especially, when they had just rescued her. She knew that other people’s panic was a threat to her independence. She was a remarkably gracious lost person. I was pacing next to the car. When she got to me, I hugged her tight. She looked at my tear-streaked face and laughed and said, “I knew I was fine.”

She was clutching a note she had scrawled on a scrap of paper as I dropped her off on the corner of 12th Avenue and Spring Street.

“Sbrinkst” the scrap of paper said.

Later that same visit we sat at the kitchen table chatting after dinner. It was nice sitting there, empty plates in front of us, pretending no one had Alzheimer’s disease. She asked questions. She praised my parenting and cooking. I felt mothered.

I can’t say now how we came around to the topic of my coming out, but when we did something must have shown on my face. She looked at me, perplexed. “We didn’t have (long pause looking for words) trouble, did we?” she asked, searching my face for an answer.

Much of Alzheimer’s disease is torturous. Some moments and losses are so painful I can’t put words to them, even though I know that I am lucky to still have my words. But there is an expansiveness and strange freedom that can sometimes be found in forgetting.

My mother developed an ease with me she didn’t often have in the years before she was ill. In the window of months, when she had forgotten her homophobia but could still remember the who and where of my life, she would end our daily calls with a sweet and easy “Give my love to your wife.”

The space between us eased and narrowed.

Lies.

There is a concept in the world of dementia: therapeutic lying. Its ethics are debated in journals and families. The proposition of therapeutic lying is that it’s acceptable, possibly wise, to lie to a person with dementia to protect them from emotional distress.

I was initially horrified at the concept.

But one day, perhaps a year after that last time she came to stay with us, I found myself walking in the cold Seattle rain telling my mother over the phone that her beloved grandson was sick. His body filled with pain that no pill relieved. His brain, the target of an immune system in revolt, derailed, careening off track. His life and ours, our little family, interrupted. We did not go to work. He did not go to school. Doctors stabbed at solutions. Up was down.

Amid it all, I called my mother every day. Alzheimer’s disease was making her own mind shifty and unreliable. The calls were intended to anchor her. It was difficult to be an anchor when I had become unmoored.

I walked a lot during those days. I walked when I cried, when I raged, and when I called my mother. It was winter, and it rained every day. The sky stayed unrelentingly gray. Three thousand miles away, she was still living at home, Alzheimer’s be damned.

The house, where I’d spent a good portion of my childhood, was built into the side of a sharply sloping hillside in the rolling foothills of the Adirondack mountains. Everything about it was impractical. It was too big. The stairs, too steep. The walls, in need of paint. The roof, in need of replacement. The landscape abounded with ticks that carried myriad terrible illnesses including Lyme Disease, which she had more than once, and which probably accelerated her decline. The winters brought temperatures in which a lost person could freeze to death. The closest grocery store was a 5-mile drive, the closest neurologist an hour-long trip each way.

But the beauty of the place was nourishment. She drank it in, day after day. She could watch the light fade over the trees for hours. She’d made it clear she wanted happiness more than safety, and for a while my brother and I were willing to go along. We tried to run one step ahead of her, stringing up a net just before she might fall. That precariousness combined with the capriciousness of the disease meant that I never knew what would greet me at the other end of the phone on my daily call: a crisis of something lost or broken (real or imaginary), a joyous report of the sunlight shining outside her window, or her voice heavy and sad, the sharp edge of a brutal disease wearing down her determined joy.

The day in question, she was fine. But I was unable to quickly conjure any diversion from her simple inquiry: “How is your day?” My mind and heart aching for my sick child, I just…answered.

She was upset. She was confused. She was motherly. “That sounds hard,” she said, and, “I will pray for him.”

“Hold on. I better write that down. I need a pen,” she said. Except she couldn’t remember the word “pen,” so she said, “I need a thing you make words with.” I marveled at her perfect, potent, irony.

I waited.

“Pray,” she said tentatively, “Is that a B?”

“P.” I overemphasized the “Puh” sound. “Then an R.”

“Right there, by the other one?”

She asked where to place the next letter as if I could see over her shoulder, through the phone, from three thousand miles away. And I could. I saw her standing next to the wooden desk, perched against the wall of the living room. A pool of light shining from the antique lamp. There is a pen in her right-hand, which is a bit knobbed by arthritis but mostly smooth and beautiful. The pen hovers over the back of an envelope. It’s probably an unopened urgent solicitation from the ACLU. After she moves to memory care, many months in the future, I will find miniature copies of the United States Constitution tucked in the piano bench, in a basket in the kitchen, stuck at the back of the drawer of this desk. All sent as either incentive or thank you gift for her $25 contributions to save our democracy.

We went on, letter by letter.

After the final letter of my son’s name I said, “That’s it, mom.”

“Now what does it say?” She asked, “I’m not sure I have it right.”

“It says ‘Pray for him,’” I said, although I was sure that it did not.

“Ok, got that!”

From the brightness in her voice, flush from accomplishment, I knew she no longer remembered why she was reminding herself to pray for him. Her struggle to write it down seemed prayer enough. But through no fault of her own, she was killing me with her unknowing.

In the days that followed, I began to narrate an imaginary life. Everything real was a story I could barely believe. Instead of reporting my day, I fabricated mundane details out of my past, interrupted, life. My lies, small individually, became enormous in their sum.

From the brightness in her voice, flush from accomplishment, I knew she no longer remembered why she was reminding herself to pray for him. Her struggle to write it down seemed prayer enough. But through no fault of her own, she was killing me with her unknowing.

I walked, phone pressed to my ear, and I told her I had a good day at work, although I had not been to work. I walked, and I told her that I was just leaving now to pick my son up from school, although he had not been to school. I walked, and I told her we had a nice time at the park. On a good day, a fraction of it was true.

One of the principles presented in the therapeutic lying debate is that lying is permissible to reduce the pain or suffering of the patient.

But I lied to my mother not as much for her, as for me.

In the strange new calculus of my upside-down life, the distance created by the lies hurt less than the pain that cut through me when I told her my heartbreak, knowing that she couldn’t fully understand or contain it. After a time, I lied so often and so freely I found myself enjoying the story along with her. If she were judging my choice, I think she’d approve. My mother, afflicted, still wanted to ease my pain. Sometimes amid some new swirling eddy inside her mind she would pause and say quietly, “I’m sorry I am so much trouble.”

“No,” I replied, “You are not trouble. The disease is trouble. You are wonderful.”

But, of course, she was trouble. So, I suppose that was a lie too. But what I meant was “you are more than your trouble,” or maybe, “you are worth the trouble.” Just as some fierce, emerging part of myself believed that I was worth the trouble when I came out to her so many years before.

Remembering

All my life my mother told me that I am beautiful.

“You look beautiful” she would say when I came in from outside. Or when I came downstairs with a wet head after a shower. Or when I woke up with sleep in my eyes.

“I am glad you are so pretty,” she would often say…and then after a pause, “I was never pretty.”

The epilogue added a bitter aftertaste to her sweet appraisal. I would often argue that she was, in fact, pretty, even beautiful. But I don’t believe I ever gained even a small crack in the wall of her certainty.

She never saw the irony. Any mirror or passerby in the grocery store could tell we were mother and daughter. Everywhere we went people remarked on how much we looked alike. “Oh no,” she’d say, “She is so beautiful!”

I learned mid-way through my own childhood that her own mother told her more than once that it was too bad she was so plain.

I leaned my head on her shoulder as we sat in the community room at her memory care facility. We sat in rows. Parked walkers gazed back at us like soldiers at attention. The hard edge of the plastic chair poked my shoulder, and my neck ached from being bent awkwardly to the side. But I didn’t move. I was in love with her soft shoulder and the way she stroked my hair. She sighed contentedly.

“You can tell you are mother and daughter!” remarked a staff person, a little too brightly, as she passed by.

In her freedom from memory, my mother responded with a smile and a simple “Oh thank you!” But then we got up and began to walk out of the room, and as we entered the hallway she paused and turned back, “She’s so much more beautiful than me!”

Except she couldn’t remember the word “beautiful.”

“She’s so much more… more…” The pause was long, and she looked at me searchingly.

“Beautiful?” I asked, reflexively. She turned around. “Yes that—she’s much more that than me!” My chest hurt and I felt a flush of shame as I repeated, reflected, the lie she’d been told and internalized all those years before—that she was less than beautiful, less than just right.

Three months later, on my next visit, we walked down the same hall. Her hand rested in mine, dry, cool, and reassuring. She stopped and turned toward me purposefully. “Do you think we look alike?” she asked. Except she couldn’t remember the word “alike,” so she asked, “Do you think we look….do we look together?”

“Yes mama,” I said. “We do look together. We look just the same, you and me, mother and daughter.” She gave me a skeptical, sideways look.

There were times over years of illness when she misplaced me, put me in a different time, or made me someone else for a while. There were months and months during the COVID-19 pandemic when she only saw me on a screen flickering in 2-dimensions. “Oh, it’s you!” she would say, and reach out and touch the screen gently with her fingers. A tenuous, straining thread held us together across time, distance, and disease.

A year after she looked at me sideways in that hallway, a skeptic of my reassurances that we “looked together,” we had a short chaotic visit. She was in the hospital with an infection. Her confusion prompted the nurses to relax the COVID visitor prohibition. I flew across the country and spent a day with her. At the end of that day she took my face in her hands and looked straight into my eyes with determined intensity.

“I’m almost your face,” she said. And then, “I’ll always have you.” Three weeks later a stroke took the rest of her words.

My mother said those words to me, promise, poem, or incantation, and in my story they are true. I make a story I can live with from the words that she left me. Somewhere in her depths she always had me.