I danced around my mother all weekend, but finally we sat together on two stools over a last cup of tea. I was about to leave. The caregiver was coming — a kindly, white-haired man named Martin who brought her gourmet coffee and knew how to help without condescension when she tried to heat it up in the microwave.
But for now, we were alone in a quiet house. My daughters were off somewhere on the iPad — I’d given up enforcing the screen-time limit today. Instead I studied my mother’s creased face and saw the flicker of a shadow cross it.
“How are you feeling, Mom?”
She laughed shortly, shook her head. “I don’t… Don’t want to get into it.”
“Please,” I said, “We really want to know.” It was safer to use the royal we here, to claim to be speaking for my three siblings and not just myself, which would have implied we still had an independent relationship, some remnant of our former intimacy.
“I feel…” she began, hesitating. Her eyes were shiny and strange, green irises gleaming amid the papery folds of skin. Impossible to tell who was gazing out.
“Mom,” I asked again, “how do you feel?”
“I feel like I want to go to sleep and never wake up,” she said, one full, smooth sentence articulated perfectly, a waterfall of words cascading. She looked at me in defiance.
I didn’t look away. “I know,” I said. “I understand. I think I’d feel the same way. It’s a terrible illness.”
But now I’d lost her. Whenever I mentioned the actual disease, she tended to drift away from the conversation on a powerful current of denial. As if the symptoms of Alzheimer’s had nothing to do with her.
“It’s just this… I read things, you know, in the mail. This dementia or whatever they call it. And now these people, coming to the house every day. You know, Sarah and… and… that man…” she trailed off, her eyes beseeching me.
“Martin?” I suggested.
“Yes!” She seemed uplifted by the completion of the thought, but relief quickly dissipated.
“If you don’t like the caregivers, Mom, we can talk about you moving somewhere else,” I said.
“Where?” Her tone was suspicious.
“Maybe Sweetwood, or Kimball Farms—you know, where Deedee lived?” Years ago Mom had moved her own widowed mother into an upscale assisted living community, then into the attached nursing facility. Now she looked at me blankly, not recognizing the name. Faced with her silence, I kept babbling.
“Remember how Deedee liked Kimball Farms? She had that friend across the hall, and she could play bridge every day and get her hair done in the salon downstairs?”
I couldn’t bear my own duplicity, trying to sell the move to my mother. I remembered with clarity our phone conversation after Deedee was relocated into her hospital-style room in the nursing care center, where the overheated halls had upholstered armchairs but smelled of Lysol, urine and cafeteria food. Mom had admitted how scared she was, how she didn’t want that future. And I had promised: “Oh no, we’ll do it differently. We’ll build an apartment for you, or a little house on the property. You have options.”
But that was in 2008, before any of us could imagine Alzheimer’s. Now the term “options” feels like deceit. If I were more generous and she had less money, we might be talking about her moving in with my family, but that scenario is not on the table.
In the kitchen, the tea had cooled and Mom started to ramble again. “It’s just this… two miles down the road… The cold weather coming on… And the hills up and down on the way to that place, you know…?”
I raised my eyebrows in a helpless question. She was struggling with word-finding, but I couldn’t follow her line of thought, couldn’t pull a thread of meaning through the oblique fragments. My expressive mother, once a world traveler, who’d proofread every English paper her four children wrote, was losing her semantic memory. She bowed her head over her teacup. I took her hand.
Then the back door opened and Martin the Sunday caregiver walked in, carrying two cardboard cups of French roast. A peace offering. Mom distrusted Martin since he’d started the job two months ago. No matter how many times we tried to tell her he was gay, she was convinced he wanted to marry her. Now she got up from her stool and walked over to the counter, turning her back on us.
From the living room, I could hear my girls’ voices mount in angry frustration. I was eager to get home. I needed to bring my attention back to my own family, to drive away from the sadness of leaving my mother in her big rambling house with a paid caregiver as the November afternoon bled into a lilac dusk.
“I’ll see you in a few weeks,” I promised her, although I knew this was small consolation in the moment of abandonment. Martin needed to be there — for her safety, so she didn’t wander off, so she could eat a healthy dinner and take her p.m. medications and be reminded to get ready for bed. He was warm and attentive with twinkling blue eyes — a volunteer firefighter from Maine. She was in good hands, or as good as they’d get now that she was a widow with rapidly progressing dementia.
“Because they live longer?” asked my husband.
“Maybe,” I said, although I had my own hypothesis. Scientists believe the slowly progressive brain disease begins well before any clinical symptoms emerge. How far back is the point of origin? What causes the first sticky plaques to form in the brain, tangling the nerve cells that malfunction and die, eroding the faculties of memory and language? I know of one other early Alzheimer’s story — Ginny, the beloved mother of my sister’s husband, who’d birthed and raised 12 children and been diagnosed at age 62. Why do women get this illness at twice the rate of men? Could it have anything to do with the cellular depletion caused by motherhood, the decades of self-abnegation?
“I feel like I want to go to sleep and never wake up.” This dark confession filled me with sorrow but also seemed a legitimate longing, one I might have if my mind were unraveling and I could no longer bathe myself or take out my dentures at night.
We believed we needed to keep Mom going at all costs, keep her in her home with a rotating staff of caregivers, rummaging through three decades of family clutter. She slept in the center of the king-sized bed she’d once shared with my father. Asleep, she looked small and childlike beneath the enormous duvet. I’d checked on her at 9:30 p.m., after I’d read to my children and fed the cats.
“I love you, Mom,” I’d whispered, then switched off the bedside lamp she always left on. In the dark I saw the green light of the security camera blinking in the corner, the device that would ping my sister in California if Mom got up and wandered in the night. In an emergency, Julia could text my brother, who lived next door with his family and shouldered most of Mom’s daily care.
How much we all loved her! How hard we were trying! But I could not imagine her loneliness, waking to the empty house each morning, confusion flooding back after the bliss of unconsciousness, not knowing which stranger would arrive to make her breakfast, or how she would spend the day.
Diana Whitney’s first book, “Wanting It,” became an indie bestseller and won the Rubery International Book Award in poetry. She is the poetry critic for The San Francisco Chronicle and blogs about the darker side of motherhood for The Huffington Post. A yoga teacher by trade, Diana runs a small studio attached to her Vermont farmhouse. Find her at www.diana-whitney.com.
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