Tag Archives: dementia

Truth. Lies. Priceless Memories.

When I was young, I never dreamed that one day, fibbing to my mom would be better than telling her the truth. Instead, I strived to dodge that age-old, childhood taunt: Liar liar pants on fire.

I’d be lying now though if I said that fibs never crossed my lips. In fact, before I aged into double digits, I would silently breathe that insult to myself whenever a Catholic priest slid open the panel that separated us inside a confessional. Gazing through the shrouded window at the shadowy figure opposite me, I always spoke in a hushed tone, praying that whoever sat on the far side of the confessional could not hear my litany of sins, including my lies.

Karen Antonietti First Communion 1963
First Communion 1963

I recited the same list and assigned a corresponding number at every telling. I fought with my brothers and sisters nine times. I disobeyed my parents seven times. I lied eight times…Though I did not keep a tally, I was certain some of my infractions numbered ten or more. Hence, liar liar.

Fast forward fifty-some years.

I hunkered in assisted living with my eighty-nine-year-old mother after she broke her pelvis in October 2020. Her senior living community was on lockdown due to the COVID-19 pandemic, but I was allowed to be her essential caregiver during her rehabilitation period. Throughout my fourteen-plus week stay, her bones healed. Sadly, her dementia progressed.

Mom’s grasp of reality fluctuated. Sometimes she knew who I was. Other times, she thought I was her friend Shirley. One afternoon, my sister Laurie called while Mom and I were eating lunch. During their conversation, Mom said, “No, Karen’s not here.” She listened to Laurie for a moment, then turned to me with a quizzical look and asked, “What’s your name?”

“Karen,” I said.

Her face softened into a smile. “Oh, you little pup!” she replied, and her words and mirth made me laugh. 

"Shirley" Karen Buley and mom, Kay Antonietti in assisted living, January 2021.
“Shirley” and Kay January 2021

Most days, Mom remembered that our Papa had died. The large, foam-backed banner that sported his picture, birth and death dates, and the words, “Forever In Our Hearts,” was propped atop her dresser. When she made loops with her walker, she’d often smile and say, “Hi, Pops,” throwing in an occasional, “Pray for us.”

After she regained her strength, we made weekly outings to a coffee shop drive through on our way to visit Papa’s grave. On the fourth anniversary of his death, we were parked in our usual spot at the cemetery. “I haven’t seen your dad in a long time,” she said. Sorrow laced her voice.

I replied with the gentle words that had softened her sadness when I’d needed them before. “Papa’s in heaven.”

“He died?” she wailed. “Oh, Dan. What did I do to you? I’m so sorry…”

I longed to dial back my words.

I had recently learned about “therapeutic fibbing”—bending the truth to match her reality—and “redirection”—shifting her focus. In hindsight, I desperately wished I had used one of those techniques that day and struggled to give myself grace.

Two-and-a-half weeks later, the senior living community hosted a reading and author’s chat for my novel Perimenopausal Women With Power Tools. Mom sat in the front row, alternately beaming and dozing. Guilt haunted me, knowing that, like my protagonist, Beth, I too was harboring a lie of omission—“the worst [kind],” according to my eighteen-year-old character, Kate.

Unbeknownst to my mom, she would be moving into memory care the following week. I’d stay with her for two days, then return home. My heart was breaking.

I spent several fitful nights lying beside her in her queen-size bed, agonizing about leaving and wishing for clairvoyance. If I knew Mom’s days were numbered, I would power alongside her until the end.

But then moving day arrived. I chased sleep for two nights in memory care, tucked into a rollaway at the foot of her twin bed. Every cell in my body ached at the thoughts of saying goodbye.

I waited until the last minute to tell Mom I was leaving. She was in the living room, watching a musical with several of the ladies. I said quiet goodbyes to staff and some of the residents, then squatted in front of her chair. I still had vacation time, plus hadn’t dipped into the Family and Medical Leave Act, but I couldn’t admit that staying and watching her decline was so damn hard. Instead, I lied and said, “I have to go back to work.”

“You do?” Anguish filled her face, and her eyes puddled as she grabbed my hands.

“I do.” I straightened, then added “I’ll be back,” and kissed the top of her head through my mask. “I’ll call you when I get home,” I said, knowing my standard words were a fib now too. “I love you,” I managed, unable to stop the quiver, but turning before tears streaked my cheeks.

I did go back, including for a weeklong stay and some other overnights throughout the next twenty-six months. During that time, Mom graduated from hospice care twice, then was referred a third time the day before she died. I was blessed to be at her bedside when she exhaled a final, peaceful sigh.

In truth, I’m grateful for more than sixty years of memories.

Kay & Dan Antonietti 1995.
Kay & Dan Antonietti 1995

I’m also grateful that, whether my mom is somewhere over the rainbow or on the other side of the veil, her journey through dementia is over and she’s living her new, best life.

Baby Charley, Butte, Montana, 1954

I was a teenager when my mother told me about Baby Charley. He was found in the backseat of a car outside the all-boys Catholic high school in Butte, Montana in 1954. Boys rushed him to the nearby rectory, but a priest directed them to reroute to St. James Hospital, two-and-a-half blocks away.

The story was shared in newspapers around the state.

The Daily Missoulian news article about Baby Charlie, Friday, October 22, 1954.
The Daily Missoulian, Friday, October 22, 1954

My mom, newly married and unbeknownst at the time, newly pregnant, was preparing for the oncoming nurses when she heard pounding on the alleyway door. She asked a janitor to open it. “Petrified” boys passed the baby to the janitor, who quickly handed the baby to her.

“Baby Charley” as he was named, was at St. James for about two months, according to my mom. “Everybody loved him—the priests and nuns and doctors—and lots of boys would come in and talk to him and play with him. He was well taken care of.”

She dressed him the morning he was scheduled to leave with his adoptive parents. Mom had a meeting though, so was sad she did not meet the couple when they arrived to take Baby Charley home.

When I was eight, we relocated from Missoula to Butte and moved into my mom’s cousin’s home across from St. James Hospital. The hospital was boarded up by then, replaced by a new building a few blocks away. I traipsed past the old hospital’s alleyway door thousands of times in the ensuing years, walking to and from church and school. The all-boys’ high school became mine, having transitioned to coed in the 1960’s. After learning about Baby Charley, I often imagined the boys’ angst as they rushed to the rectory, then hurried to the nearest hospital door they could find.

Mom repeated the story throughout the years, the last time in early 2020 as we visited in her independent living apartment. “He was inside a paper bag, dressed and wrapped in a blanket. He had a sugar tit in his mouth, and he had beautiful red hair…” She paused. “I hope he’s doing okay.”

“I bet he is,” I said, studying the black and white photograph featuring Baby Charley and my twenty-three-year-old mother. Clad in her white cap and starched nurse’s uniform, she’s smiling at Charley, whose tiny fingers are curled around her finger.

Kay Antonietti & Baby Charlie, St. James Hospital; Butte, Montana; 1954
Kay Antonietti & Baby Charley; St. James Hospital; Butte, Montana; 1954

The photo, which Mom kept in her cedar chest, was taken for a follow-up news article. “Picture no. 3; 2 col Sun; bottom, pg. 4;” was scribbled across its back. But instead of publishing the photograph of Baby Charley and my mother, the newspaper published a photo of him and a nursing supervisor instead.

My mom passed away on March 18, 2023. Two days ago, I washed the linens that had cocooned her, and my sister and me, during Mom’s final hours. I also laundered a pair of plush throws. The blankets rushed memories of Mom and I snuggled under them during our fourteen weeks together after she broke her pelvis in October 2020. Swathed in comfort and warmth, we’d watch “Jeopardy” and “Wheel of Fortune.” We’d reminisce too, and sometimes when dementia took hold, she’d ask, “Where’s the baby?”

A childbirth educator and decades-long nurse, mother of eight, grandmother of fourteen and great-grandmother of twelve, Mom could have been referring to a number of babies. But during those weeks I hunkered in Assisted Living with her, she often lived in the past.

On this Mother’s Day I wonder, as I have before, if the infant Mom worried about was Baby Charley. My years of teaching Lamaze classes and working as an OB nurse, coupled with the creation of characters for my novel Perimenopausal Women with Power Tools, colored my emotions as I contemplated Baby Charley’s birth and his birth mother’s courage, strength, heartache and love.

Mom’s plush throws are washed and tucked away. I imagine gifting one blanket to Charley. If his birth mother is still alive, I imagine gifting her the other. Full circle from the young nurse who welcomed and loved Baby Charley nearly sixty-nine years ago.

Two-and-a-Half Years and Counting

I have written snippets about my mother’s journey through dementia and am proud to share “I Was Really Scared Last Night” which was recently published in Please See Me. An online literary journal, Please See Me’s mission is “to elevate the voices and stories of vulnerable populations, and those who care for them.”

When I visited my mom a couple of weeks ago, she greeted me with an “Oh my God,” as I bent to kiss her cheek.

My mother, Kay Antonietti.
Kay Antonietti, cuddled under an afghan from a hospice volunteer December 17, 2022

And this week, after demonstrating an upswing, she graduated from hospice care. Her heartrate has normalized, she is more awake, her appetite and ability to feed herself have improved, and she has more frequent episodes of coherent speech.

Her eyes still hold their sparkle, and every day with her is a gift.

Cancer Horoscope November 12, 2021

A Horoscope. A Muse. A Tiny Love Story.

I read my horoscope nearly every day. Sometimes, I run with its forecast. Other times, I ignore every word. And on occasion, I embrace the parts I like and disregard the rest.

Eleven days ago, my horoscope’s opening line, “You’re in touch with your muse today, which is why this is a productive day for those of you who work in the arts or creative projects,” nudged me to revisit my writing from the previous year.

An inspirational horoscope led to publication in The New York Times.
November 12, 2021

I focused on a 100-word story I had written about my mom and me for The New York Times Tiny Love Stories. After submitting the piece last November, I envisioned seeing it and an accompanying photo online and perhaps in print.

I did not.

Rereading my story, I resolved to try again. I scoured other Tiny Love Stories, certain their words were my muse. Then I plunged in, narrowing my story to a single moment.

Four days after that prophetic horoscope, I received an email from NYT editor Miya Lee. One week later, my amended Tiny Love Story was published online in The New York Times.

Oh. My. Heart.

Karen Buley and Kay Antonietti

Flexibility, Resilience and the Art of Friendship

The past eighteen months reinforced the notion that life doesn’t always go according to plan. As Perimenopausal Women with Power Tools neared its pub date in spring, 2020, I envisioned a book release party. In addition to a short reading, there would be food, drink and conversation—a tribute to the lively evenings my characters shared throughout the book. I pictured additional book readings to follow. Then COVID-19 reared its ugly head.

Montana Gov. Steve Bullock ordered a temporary shelter-in-place. As I wrote here, I had much to be thankful for. Thus, scrapping a book launch seemed a small price to pay. While I hunkered in, I scoured how-to guides on do-it-yourself book trailers. Both teacher and student, this was my result.

Five months after Perimenopausal Women with Power Tools made its quiet entrance into the world, I hunkered in again—this time in an assisted living neighborhood. My eighty-nine-year-old mother had broken her pelvis. Though Touchmark, her senior living community, was locked down, administration welcomed me in as her essential caregiver.

Karen and Kay October 27, 2020

Once our two-week cautionary quarantine ended, we walked in and around the community, both with and without her physical therapist. My mom’s pelvic fractures healed in the fourteen weeks she and I bunked together. Sadly, her dementia worsened.

The week before she moved into a memory care unit, Mom had a front-row seat at the inaugural reading of Perimenopausal Women with Power Tools. Touchmark’s COVID-19 precautions remained in place, so the group was limited to a small number of masked and socially distanced residents.

Wearing both mask and face shield, I gazed at the audience and contemplated my mom. Her sparkling blue eyes shone with pride. As I began to read, a rush of heat coursed through me. I was reading to two of my biggest fans—one in person and the other in spirit. Mom’s eyes flickered shut at times, but she beamed during the applause.

Nearly eight months have passed since, heavyhearted, I packed my bags and returned home. The weeks I spent with my mom, culminating with two nights in memory care, were priceless. I treasure our continued visits. But with the uptick in Montana’s COVID-19 cases, I pray her community will not have to endure another lockdown.

Next month, I will hold my mom and dad in my heart when I present Perimenopausal Women with Power Tools to a bigger audience. I’m thrilled to be joining Eileen Garvin for a Montana Book Festival event—With a Little Help From My Friends: Writing Fictional Friendships.

2021_MBF_Event-Image (Friendship-Fiction).jpg

This year’s festival pivoted from a hybrid in-person and online affair to an entirely virtual event. But again, as thousands continue to lose loved ones and struggle in innumerable ways, foregoing an in-person book event feels like a small price to pay.

My parents modeled flexibility and resilience. They also taught me the art of friendship. As a young girl, I didn’t realize the lessons I was gleaning when they hosted an array of friends in our cozy Missoula home. Three or four families would gather, assembling double-digit numbers of offspring. We kids would spill outside and engage in noisy games—the grown-ups settling occasional skirmishes—and some of those kids remain my lifelong friends.

A few years later in Butte, I remember watching with envy as my mom’s “Club” convened at our house. My father would scoot out before the first guest arrived. My siblings and I were allowed a bit of time with the ladies before they broke out the pinochle cards. Then, we would head upstairs to our bedrooms. Peals of laughter, the clink of ice cubes and wafts of cigarette smoke followed us up.

During our shared weeks at Touchmark, my mom didn’t always remember who I was. Sometimes she thought I was her friend Shirley. The name always made me smile. Two of the moms from those early Missoula years were named Shirley. But I was Shirley Reinig, a member of “The Church Ladies”—a newer group of Helena friends. My mom and Shirley were retired nurses and on occasion, Mom worried that we had to go to work. One night, she called from the bedroom minutes after I had helped her tuck into bed. “Shirley?”

Despite the dim light, I could see her furrowed brow as I approached the bed. She didn’t wait for me to respond before rushing, “Do you think we’re going to get canned?”

“No.” I stroked her cheek. “We have the night off.”

“Oh good.” She smiled, then closed her eyes.

Three of “The Church Ladies” celebrating Kay’s 90th birthday.
Kay Antonietti, Shirley Reinig and Joanne Anderson-July 25, 2021

Yes, life doesn’t always go according to plan. So we pivot or punt and, if we’re lucky, we have memories to hold dear. I will forever cherish the irreplaceable weeks I spent with my mom. Lines from the movie Airplane hold new meaning now. And discovering that Mom would be moving into a memory care unit with two other Shirleys felt serendipitous.

Perimenopausal Women with Power Tools is dedicated

To My Friends New, Old, and In-Between

On October 16 at 2:00 PM MDT, Eileen Garvin and I will chat about crafting fictional friendships. Registration is free. So whether you live in Grants Pass, New York City or places in between, I hope you’ll join us.