“I was sitting here reading my book and everyone left, and I can’t find the baby!” Panic permeated my eighty-eight-year-old mother’s words when she called one Sunday evening in July 2020.

“They’re gone.” A fierce burn seized my belly as I imagined my mother, alone in her independent living apartment, one hundred twenty miles away.

“They were there last week,” I reminded her, referencing my sister and her family, including the newest great grandson Mom had met in a parked car days earlier.

“No, they were here! I was holding him, and I put him nice on the bed and I can’t find him.” Her words were urgent, tremulous. “Everybody’s gone and I can’t find him,” she repeated. “No one I talked to knows where he is.”

“Who did you talk to?” I asked, stalling.

“The girl at the desk. She said she didn’t know anything about a baby.” She paused for a quick breath. “Maybe I’m going crazy…”

“No—”

“Somebody should take me out and shoot me,” she interrupted.

“No, Mom—” My attempts to reorient and reassure her did nothing to rid her panic nor convince her there was no baby, no anybody, due to COVID-19 visitor restrictions.

“Yes, they should just shoot me…” Her voice trailed off.

My mother’s senior living community had been on pandemic lockdown for four months. Thus, family and friends were not allowed inside. She resided in independent living which meant no one was stopping by on a Sunday evening to provide comfort or console her. I listened to her frantic words and my heart ached.

#

Three weeks earlier, I called Nancy, the retirement counselor who had facilitated my mother’s transition into senior living two years prior.

“I’m coming over to take my mom to the doctor on Friday,” I said. I shared my concerns about her increased confusion, then asked if they had any assisted living openings.

“We expect two apartments to open up mid-July,” Nancy said. “They’re on the second floor in a good location near places your mom likes to go, like the Hobby Room. Her name came up at our weekly staff meeting yesterday.” She waited a beat, then added, “She’s been at the front desk more often to clarify things. Some of that is due to COVID isolation. Kerri worked last Thursday and said your mom really struggled with word finding, more so than we’ve previously seen. I saw her this morning though, and she seemed real clear.”

“Yeah, sometimes she’s great which is why my seven siblings don’t all agree we should move her.” I sighed. “I’m glad to hear you’re expecting some assisted-living openings though,” I said. “I’ll keep you posted.”

#

I chased sleep the entire night after my mother’s panicked call, then phoned Nancy again the following morning.

“I’ve seen residents turn on a dime with urinary tract infections,” she said. “Why don’t you call her doctor and get an order for a UA or schedule an appointment if he wants to see her. If he does order a UA, you can come in and help collect the urine specimen.”

A warm flush coursed through me. I could see my mom! My stomachache dampened my thrill though. I wanted to believe a urinary tract infection was the cause of my mother’s angst. But her intermittent word-finding difficulties and periodic episodes of agitation pointed to a condition no antibiotic could cure.

“Her confusion could be sundowning though,” Nancy said, a softness in her voice.

“I know.” Sundowning had consumed my thoughts since hearing my mother’s frantic words the evening before. The Mayo Clinic describes sundowning as “a state of confusion occurring in the late afternoon and lasting into the night,” and I had experienced this with a patient forty-two years earlier. Months out of nursing school, I knelt beside my elderly patient’s bed to check his catheter bag. His kick was sudden and fierce.

That vivid memory heightened my concern, and I told Nancy I’d be in touch after I talked to my mother and called the doctor’s office.

The phone rang five times before my mother answered. “Good morning!” she said, sounding upbeat. I hoped it was because she recognized my name on caller ID. During our brief conversation, she was oriented and calm. There was no mention of her terror the night before.

When I phoned her doctor’s office, I learned he was working as a hospitalist that day. His nurse advised we go to a non-COVID urgent care center for lab work and an exam.

“I’m going to surprise my mom,” I told Nancy when I called with an update. I didn’t want my mother to fret about the reason for my visit. And I wasn’t ready to spin a lie of omission.

#

When Nancy escorted my mother to the retirement community’s lobby three hours later, Mom’s blue eyes sparkled above her mask when she met my gaze. On our way to the car, she said, “I was really scared last night.”

“You were.” Relief washed over me at the organic unfolding of her words. “You thought there was a baby.”

“I did…”

Half an hour later, she repeated the story to the urgent care doctor. Her exam and lab work—a urinalysis, blood count, and electrolytes—were normal. Her Visit Summary Report noted, “You were seen today for sundowning.” Though I had recognized the symptoms the night before, the diagnosis delivered a visceral blow.

#

“You can take her to her apartment,” Nancy said when my mother and I returned to the senior living community.

“I can?” I asked, adding a breathy “Thank you,” without waiting for a reply.

Throughout the previous year, a pharmacist had packaged my mother’s prescription medications in color-coded, dated bubble packs—yellow for AM and blue for PM. A retired nurse, my mom had been hesitant to have the pharmacy pre-package her meds. But she acclimated to the change and continued arranging her acetaminophen—which she took for chronic back pain—and vitamins in a weekly pill organizer.

During my visits before the pandemic lockdown, I occasionally found pills on the floor. There were missed bubble packs too, evidenced by unopened packs stamped with dates and times that had come and gone.

When we entered the apartment, I noticed my mother’s medications were in their usual place between the sink and the stove. As I surveyed the array, my heart pounded. She had intact bubble packs from July 4th on, even though it was already July 6th. Off to the side, an AM bubble pack from July 2nd was taped shut. I turned it over, and three PM meds winked behind the plastic bubble. Mom’s weekly pill organizer was empty. But a nearby shot glass held acetaminophen and prescription meds.

I emptied the shot glass into my hand. The colorful assortment of an entire day’s worth of prescription meds—eleven pills—plus three acetaminophen filled my palm.

Mom waved a hand in the air. “Oh, I was going to throw those away,” she said.

“I’ve got them.” I forced the words past the lump in my throat.

#

Home health staff were permitted in the building, so we hired an agency to check on our mother and administer her medications twice each day. My siblings and I agreed the isolation imposed by COVID-19 lockdowns had worsened her confusion. Certain the pandemic had an endpoint—albeit an unknown one—we disagreed about what living arrangement was best for her. Some of us wanted to transfer her to assisted living, on the opposite side of the building. The rest wanted to leave her in her two-bedroom, independent-living apartment, hopeful we could resume frequent visits and overnight stays soon.

In-person and virtual meetings with staff and an assortment of siblings followed. Mom saw her primary care doctor for a checkup and a Saint Lewis University Mental Status exam (SLUMS)  to assess her cognition. Thirty was a perfect score. Based on our mother’s education, a SLUMS score less than twenty-one indicated “dementia.” My siblings and I had batted around that word. But hearing Mom’s SLUMS score—six—delivered a gut punch.

Nancy emailed a video about the facility’s memory care units prior to another virtual meeting. “It can be less disruptive to move once rather than twice,” she explained in the Zoom call.

“But our mom loves to walk around and visit her friends.” The words echoed among us as we recalled her joy in her daily hikes inside the three-story building. We agreed a single move into memory care might be better than moving her to assisted living first. But none of us felt comfortable transferring our mom into a locked unit and depriving her of her lengthy, independent walks. We hoped, too, that before a move to memory care became necessary, COVID-19 restrictions would lift and we would be able to visit at will.

#

Six weeks after our mother moved into assisted living, she went to the dentist for a cleaning. Sitting in the reception area, she felt dizzy and stood up for reasons unknown she later explained to us. Up one moment, down the next; then hip pain prevented her from getting up off the floor.

An ambulance transported her to the local hospital. COVID-19 restrictions permitted only one family member to stay with Mom throughout her three-hour evaluation in the Emergency Department (ED).

Images and lab work ruled out head and chest trauma but diagnosed a pair of pelvic fractures. Though neither fracture required surgery, Mom was admitted for therapy, pain management, and discharge planning. During her ED stay, staff determined she was lucid enough to be hospitalized without family in attendance. She was admitted into a room near a nurses’ station with a mobile camera monitored by a video technician and a bed alarm to facilitate her safety.

#

Our mother needed rehabilitation following her discharge. Emboldened by words from a friend, I called the hospital’s case management department and the senior living community’s administration the day after Mom’s admission. It would be safer and less cognitively disruptive for my mother to return to her home for rehab. I’m a nurse and could quarantine in assisted living with her and be her essential caregiver. I’d get tested for COVID beforehand, then we’d hunker down in her apartment.

My proposal was convincing. The day before my mother’s discharge, she and I were swabbed for COVID-19 one hundred twenty miles apart. The following afternoon, I was permitted into the hospital to receive discharge instructions. Then, that familiar, fierce burning seized my belly while three of us hoisted my mother into my van. Snowflakes swirled as I drove her home on the cusp of a raging snowstorm.

#

Other than a quick doctor visit, we quarantined inside my mother’s apartment for two weeks. A physical therapist visited three times a week. All of us celebrated the day when quarantine would lift and Mom and I could mask up and stroll around the building—inside and out as the weather permitted.

Mom’s pain lessened. Her strength increased, but sadly, so did her dementia. Sometimes I was “Karen.” Other times I was “Shirley,” her ninety-something nurse friend. Mom worried about “the baby” or “the kids.” In addition to hearing the worry in her voice, now I witnessed it in her eyes. Sorrow wove itself around my soul as I watched my mother’s vibrancy and mind slowly slip away.

As the weeks marched on my family asked, “Aren’t you bored?”

“No.” I smiled, then added, “I’m pretending I’m on a cruise ship or at a writers’ retreat.”

Mom and I were able to go for drives, so every week we swung through a coffeeshop drive-through on our way to the cemetery. On the fourth anniversary of my father’s death, we parked steps from his grave as we had for weeks.

“I haven’t seen your dad in a long time,” Mom said, her voice thick with sadness.

“He’s in heaven,” I said.

“He died?” Her eyes filled with tears. “Oh, Dan, what did I do to you? I’m so sorry!”

“You didn’t do anything, Mom. He fell and broke his hip…” My chest tightened when I repeated the entire story—New Year’s Eve, a half-beer and sloppy joes, five days in the hospital, a peaceful death; then the beautiful wake, rosary, mass, burial and celebration afterward. Nothing jogged her memory.

“Was I there?” she asked, again and again, adding, “I don’t remember.”

When we parked outside her home, fear flashed across her face. “I don’t want to go in there; they’ll all be looking at me. And what am I going to wear to the church?” she asked, my father’s death seeming fresh and a work in progress.

“No one will be looking at you,” I said, explaining again about the funeral four years earlier.

A while later, she talked on the phone to two of my brothers. “I didn’t know Dad died,” she said.

Talking loudly enough for me to hear them, they too told her about the beauty of our dad’s services. Still, it was as though she were hearing the story for the first time.

For three days, Mom continued to talk about my dad’s death. I wanted a do-over and struggled to give myself grace. We had journeyed to the cemetery numerous times, and Dad’s death had always been a given. Several times a week we talked to the large, foam-backed picture of him that once rested inside his open casket, and now balanced on Mom’s dresser. Often, she would say, “Pray for us, Papa.”

I had recently learned about therapeutic fibbing and redirection—techniques to minimize anguish or nip challenging behaviors for people with Alzheimer’s or dementia. But that day in the cemetery, I hadn’t anticipated needing either one.

I reflected on the times I had supported Mom’s current reality and used therapeutic fibbing with success.

“I want to call my mom,” she said when we strolled around her community one afternoon.

“We’ll call her when we get back to your apartment.”

“Okay,” she replied, and never mentioned her mother the rest of the day.

Minutes after I helped her tuck into bed one night, she called from the bedroom. “Shirley?”

I could see the creases in her brow as I approached the bed.

“Do you think we’re going to get canned?” She rushed the words.

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

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

Redirection—shifting her focus—had worked too.

“Where’s the casserole I made?” Wild-eyed, Mom gestured toward the kitchen counter.

“You’re such a good cook,” I said. “What’s your favorite recipe?”

“Oh…” She smiled and tipped her head. “Lots of them.” She didn’t talk about the casserole again.

Reflecting on those little victories helped to ease my angst, and I vowed to use therapeutic fibbing and redirection when needed.

#

Three weeks later, we moved our mother into memory care. For days prior and during the two nights I spent with her in her new studio apartment, every cell in my body ached at the thoughts of saying goodbye.

When the time came to leave, words scratched at my throat. “I’m going home to Missoula,” I said. “I have to go back to work.”

“You do?” Mom’s eyes puddled as she grabbed my hands.

“I do.” I kissed the top of her head. “I’ll call you when I get home,” I said, repeating words from our years-old routine. Loosening my hands, I blew her a kiss. My voice cracked when I said, “I love you,” and I turned before tears streaked my cheeks.

#

Nineteen months have passed since my heart broke that January afternoon. Last month, we celebrated our mother’s ninety-first birthday. She’s been wheelchair bound for nearly a year, and tomorrow she’s being admitted into hospice.

Most of her speech is gibberish now, but at times, her words are soft and clear.

A few weeks ago on a visit, her forehead furrowed. “I haven’t seen your dad…” Her voice trailed off.

I paused, then reached for her hand. “Oh, I think you saw him last Wednesday,” I said.

She studied my face. “Oh yeah.” Her blue eyes twinkled.

Karen Buley (she/her) is the author of the novel Perimenopausal Women with Power Tools. Her collection of nurses’ stories, Nurses on the Run: Why They Come, Why They Stay, was chosen a “Best Books 2010” Awards finalist by USA Book News. Her work has appeared in The New York Times; American Nurse Today; A Cup of Comfort for Nurses: Stories of Caring and Compassion; Inside and Out: Women’s Truths, Women’s Stories; and more. After years of obstetrical nursing, Karen is a high school library assistant in her hometown of Missoula, Montana. Find her at www.karenbuley.com.