MORRISVILLE, Pa. – A cornhusk doll falls to the floor as my mom scurries around my grandmother’s memory care room in search of a missing sneaker.

“Someone must’ve taken it,” my mom says.

The room smells faintly of urine, although I know by the overwhelming whiff of bleach that it was cleaned not long ago. I sit in a wooden chair and lean my head against the dusty quilt draped over the back.

It is the first time I’ve been in the same room with my grandmother for almost a year and a half.

This room is filled with photographs that capture a lifetime of memories: My grandfather with his granddaughters in a Christmas party conga line. My aunt and uncle holding their newborn son. My mom, playing guitar and singing, on the porch of our beach house on the Jersey Shore, a gathering spot for anyone who wanted a cold beer and a hearty laugh.

These are my memories. My mom’s memories. My family’s memories. They aren’t my grandmother’s memories. Not anymore.

They’ve been slowly, silently, surreptitiously stolen by an uncatchable, incurable culprit.

Alzheimer’s disease.

A devastating type of dementia, it affects short- and long-term memory, thinking patterns and behavior. As it progresses, the disease can disrupt daily life and make it difficult, or eventually impossible, to function independently.

More than 6 million people in the U.S. live with the disease, according to the Alzheimer’s Association, and by 2025, Arizona is projected to experience a 33% increase in seniors with Alzheimer’s – the largest of any state.

The burdens of this disease are immense in ordinary times, for patients and the relatives who care for them. The COVID-19 pandemic brought far more challenges: higher risk of illness for those living in care facilities, where the disease often ran rampant, and limited social interaction – something especially important to the well-being of people with memory disorders.

The toll of these past two years has been considerable: Although updated statistics are hard to come by, staff and residents at long-term care facilities accounted for 31% of all COVID-19 deaths in the U.S. through June, according to the Kaiser Family Foundation.

But the virus itself wasn’t the only culprit here. Far more people died of Alzheimer’s and dementia during the pandemic than expected based on previous years – more than 62,000 additional people since Feb. 1, 2020, the Centers for Disease Control and Prevention reports.

Kinsey McManus, program director of the Alzheimer’s Association Desert Southwest Chapter, said patients and caregivers have faced innumerable consequences during the pandemic.

From wearing masks and washing hands to staying inside rooms and social distancing from others, Alzheimer’s patients had difficulties adjusting to new routines and regulations. All the while, McManus said, some patients couldn’t comprehend or remember that they were living through a pandemic or understand why their loved ones couldn’t come to visit.

“Dealing with COVID added layers upon layers of crisis, of anxiety, of disorientation, of discomfort,” she said.

My family – and my grandmother, in particular – endured every one of those emotions.

‘Patty Ann’ – Grandmom to me

Patricia Ann McBrien Rush was born in Philadelphia during the thick of World War II. A natural entertainer from the time she learned to tap her toes and snap her fingers, “Patty Ann” dreamed of performing on Broadway.

Although she never achieved stardom beyond school musicals, my Grandmom, as I call her, shone brightly to those who knew and loved her. She married Edward Rush Sr. in 1965 and shortly after had a daughter and three sons, who tested her devout Catholic faith every day.

Grandmom was a woman of impeccable fashion. Partial to red lipstick and patent leather shoes, she’d only set foot outside her home in Doylestown, Pennsylvania, looking her best, sometimes rivaling former first lady Jackie Kennedy. She wrote thank you notes for thank you notes – in elegant script larger than John Hancock’s – and always danced “The Patsy” after more than one glass of wine.

She put as much care and effort into helping others as she did her hair and wardrobe.

My grandmother worked as a special education teaching assistant in Bucks County for 23 years. From singing show tunes from “Hello, Dolly!” to dressing up as a clown every Halloween, she loved her students and inspired her daughter – my mother, Bridget Schmidt – to become a special education teacher.

Ann Godiksen, 69, taught with my grandmother in the same classroom for 17 years at Willow Dale Elementary School in Warminster, Pennsylvania. Their close friendship transcended teaching. Godiksen swears my grandmother was Martha Stewart reincarnated, the “type of woman who could do it all.”

Over the years they taught together, Godiksen never noticed any trouble with my grandmother’s memory. But even 15 years before she started showing signs of memory loss, she’d sometimes crack jokes about it.

“When we were in the classroom and she would forget something … she’d say, ‘Oh, I forgot. You know, I suffer from halfzheimer’s. … I’m halfway to Alzheimer’s,’” Godiksen recalled.

Doctors diagnosed my grandmother with Alzheimer’s in 2016, although she had noticeable symptoms as early as 2010. At times, she couldn’t find her car in a parking lot or would put utensils away in the wrong kitchen drawer. She showed up to some of the grandkids’ school functions on the wrong dates.

My grandfather often denied the severity of her disease, but before he died in October 2019, he had planned for her to enter memory care at the large retirement community where they already lived.

She remained at that facility for months after his death, until my mother, in search of more stringent care, found space at Sunrise of Lower Makefield, a senior care community with a small memory care wing.

Grandmom, then 77, moved in on Feb. 8, 2020, just as a deadly new virus began circling the globe.

My mom and her brothers brought some of her furniture and spent hours hanging photos and arranging decorations on the bureau and nightstand, including a few cornhusk dolls from my grandmother’s collection of dozens.

“Are you going to be OK?” my mom asked when it was time to say goodbye.

“I just want to go home,” Grandmom said.

Three weeks later, the first major outbreak of COVID-19 was reported in the U.S. – in an elder care facility in Kirkland, Washington. Eleven days after that, on March 11, 2020, the World Health Organization declared COVID-19 a pandemic.

‘There was no best practice’

March 13, 2020: “We are continuing to closely monitor the global spread of COVID-19,” began the national update from Sunrise Senior Living’s corporate headquarters in McLean, Virginia, announcing such protocols as limited visitation, resident health evaluations and screening of staff members for illness.

“Our team is working to maintain normalcy for our residents and families despite this situation,” concluded the website message for all 268 Sunrise centers across the U.S.

At Sunrise of Lower Makefield, executive director Shanna Garland and her staff scrambled to communicate the new protocols to residents and visitors.

“There was no best practice,” she said, “because nobody was prepared for this pandemic.”

By March 2020, Garland had been at the facility for three years and had always worked to ensure it maintained a family-oriented feel – even bringing her rescue dog, Mecca, to work. The 10-year-old pointer mix would roam freely, visiting residents and collecting treats.

“Some of the residents … think that she is their dog. They’ll be like, ‘Where’s my dog? Have you seen my dog?’ So it’s really sweet,” Garland said.

Tucked away in quiet and historic Morrisville, Pennsylvania, Sunrise of Lower Makefield resembles a Victorian manor, with wraparound porches full of rocking chairs and a quaint garden out back.

It has operated since 2008, with a capacity for 95 residents, and is well-known in the community. The number of staff constantly changes with the needs of the residents. Whether it’s early onset dementia, Lou Gehrig’s disease or cancer, residents face a variety of ailments.

Reminiscence, the memory care wing, houses 17 people, meaning residents like my grandmother receive more personalized care.

Before the pandemic, Sunrise buzzed with activity: visitors coming and going, and activities from morning to evening, including yoga, bingo, church services for all different faiths, outings to restaurants.

My mom felt that sense of community when she visited before moving Grandmom in.

“It’s just so homey. It was obvious that the staff was very dedicated to the highest level of care.”

In her first few weeks, my grandmother quickly adjusted to life at Sunrise. But the routine she’d grown accustomed to disappeared when the pandemic hit.

In-person visits were put on hold. Daily screenings and temperature checks were implemented. Instead of dining with others at communal tables, residents ate in their rooms. And those daily group activities morphed into “in-suite programming” that included puzzles, word games and scrapbooking.

Grandmom was directed to stay in her room for weeks, eating her delivered meals or sitting alone in the dining room, spaced out from others. Care aides came to shower and dress her, and checked on her throughout the day, although those visits were as brief as possible to avoid prolonged contact.

The activities director tried to individually engage with residents in their rooms with painting and coloring projects. Staff also took residents outside to get fresh air as much as possible. But most of the time, Grandmom watched TV in an armchair for hours. Over those first few months, she grew less and less mobile.

At the beginning of the pandemic, there were weeks where my mother had no contact at all with my grandmother. Instead, she relied on weekly updates from Garland. And though my mom told Grandmom about the coronavirus, using the simplest words possible, we know she didn’t fully understand what was happening or why her family could no longer visit.

My mom took the precautions at Sunrise seriously. The last in-person visit she had with Grandmom was a few days before the pandemic was declared. But not all relatives stayed away.

On April 8, 2020, Garland sent an email to residents’ families imploring them not to visit. Some were skirting the rules by meeting with loved ones in the parking lot.

“We are one of the very few local communities who currently does not have any COVID-19 cases. And it is our full intention to keep it that way,” she wrote. “All it takes is one person to spread this. Just one. Please don’t be that one person.”

My mom wrote back to thank Garland for putting safety above all else. Our family felt confident that Grandmom was OK, at least for the time being.

But then shortly after that April email, COVID-19 found Sunrise. Several residents contracted the disease. Eventually, my family learned, two died.

For Garland and her staff, it was a turning point.

“I think for everybody,” she said, “it was a moment of, ‘How are we going to keep everybody safe?’”

Staying connected

April 23, 2020: “As the COVID-19 pandemic continues to evolve, the Sunrise team remains committed to prioritizing the safety and well-being of our residents and team members,” read the latest update from headquarters, announcing expanded “virtual visit capability through FaceTime and Skype on iPads.”

The first time an unfamiliar phone number appeared on my mom’s iPad screen, I was bewildered. No one ever called her iPad.

“Who’s trying to FaceTime us?” I asked, handing her the device.

Mom answered and there was Grandmom, a Hallmark Channel movie playing in the background. A health care aide pointed to the camera.

I’d been living back home since spring break in March, working to finish my senior year at Stanford University via Zoom.

Amid attempting to write papers about 20th century literature and watching endless news stories about spiking COVID-19 infections and deaths, I added a new item to my weekly routine that spring: talking to my grandmother on FaceTime every Tuesday and Friday afternoon.

“Miss Pat, look who it is!” the aide said on this occasion.

Grandmom squinted at us, confused. My sister, Tara, walked in holding Ozzie, our terrier, and sat down in front of the camera.

“Mom, it’s Bridget and Emily and Tara and Ozzie!”

She started laughing as the aide moved the screen closer to her face. Ozzie whined with the sound of Grandmom’s voice. He missed her, as we all did.

“Is that –”

Tara moved Ozzie front and center in frame. “Ozzie’s just talking,” she said.

“I – him – the –” Grandmom gave up and broke into laughter.

“He’s quite the pip!” I said.

It was like a funhouse mirror on her end, an echo chamber on ours. Although the words she struggled to speak were empty, her contagious laughter and red-lipped smile were full.

As the world learned to rely on FaceTime and Skype and Zoom to connect, residential care facilities also turned to video chat to uphold relationships between residents and their families.

Staying connected is especially important for those with dementia, but it’s also vital in helping to prevent dementia in the first place.

Social isolation and loneliness are associated with a 50% increased risk of dementia in older adults, according to federal research, and once someone is diagnosed with dementia, experts say that social connectedness can help maintain cognitive function and quality of life.

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Before the pandemic, my mom made a point of visiting Grandmom at least once a week, usually on Sundays. She’d stay for an hour, just talking or singing to her.

Once family and friends could no longer visit, Sunrise staff members did what they could to maintain a structured, day-to-day life for residents and bring some semblance of joy, especially for those who couldn’t understand what was happening.

Taylor Johnson, care coordinator for Reminiscence, joined Sunrise in 2014 after working as an activities director at another memory care center. His passion stems from the power of engaging with residents. For him, the pandemic reinforced the importance of his work and that of his staff.

“In a world where we had to be apart from everyone and serve a population that needs that family so badly, I am very blessed to have a team that put a lot of effort into occupying some of that space in one’s heart,” Johnson said.

“Everyone is part of our family. Team members, residents, visiting family members – we all are part of something bigger.”

Although Garland and Johnson kept my mom regularly informed about COVID-19 protocols and my grandmother’s health, she still worried every day about the unpredictable progression of Alzheimer’s and the negative impacts of physical isolation.

“My biggest fear was missing out on time,” she said, “and not knowing what she would be like when we’d finally be able to get back in there.”

As the days and weeks passed, and as reports of more nursing home outbreaks cropped up, the more anxious I became, too. I hadn’t seen my grandmother in person since December 2019 – before she lived at Sunrise, before grocery store shelves emptied and the world shut down.

Would Grandmom be OK the next time we talked? Would she be healthy, or at least as healthy as someone with Alzheimer’s could be?

And when we could finally visit in person again, would she even remember me by then?

Waving through a window

June 1, 2020: “While we remain vigilant in our response to the COVID-19 pandemic, we are also looking for new ways to reintroduce more variety into residents’ daily routines,” another Sunrise update stated. “Things we’re exploring include slowly and carefully introducing socially distant small group programming and limited out-of-suite dining.

“Our policy of restricting all but medically necessary visitors will remain in place in all of our communities for the time being.”

By May 31, more than 100,000 people in the U.S. had died of COVID-19, including at least 26,000 in nursing homes, according to federal data that does not include thousands of other long-term residential care facilities, like Sunrise.

It quickly became clear that long-term care facilities were a breeding ground for the disease. Outbreaks were documented in centers across the country, as elderly residents – many with underlying conditions that made the virus far deadlier – fell ill.

Reports also circulated of lax protocols and lack of protective equipment at some care facilities, prompting the federal government to implement a number of new requirements – including demanding that nursing homes report all COVID-19 cases to families and to the CDC. An independent commission was brought in to assess the nursing home response to the pandemic.

Despite the ongoing crisis, states began lifting lockdowns ahead of Memorial Day in the hope that life somehow could return to “normal.”

Normal for us became visiting Grandmom through the window of her first-floor room at Sunrise.

The day after my June 14 graduation from Stanford, my mom pointed to a mud puddle beneath Grandmom’s window.

“It’s fine,” she said. “Put the chair here.”

It was the third time we’d visited that week, only this time I was a fresh college graduate dressed in my cap and gown. Scooping up the bottom of the gown, I sat in the folding chair and waved at Grandmom sitting on the corner of her bed. She picked at the quilt, not minding us in the least.

“Mom, it’s Bridget!”

Grandmom looked up, her face contorted like a gargoyle’s.

“Bridget?”

The masked care aide beside her clarified: “Bridget is your daughter.”

Seeming to recognize the word “daughter,” her expression softened into a curious frown.

“Look at Emily in her cap and gown! She just graduated yesterday,” my mom said, pointing at the swinging “2020” tassel.

Her frown was at a tipping point. Just one more joke would do the trick.

“Grandmom, guess what?” I asked, almost putting my nose to the window.

Alarmed, she repeated, “Guess what?”

“I’m getting old!”

All traces of confusion dissipated into laughter. She motioned for us to come inside.

Mom shook her head. “We can’t come inside because there’s a virus.”

The curious frown returned. “A virus?”

“Yeah, there’s a virus, so we can’t come inside.”

Grandmom nodded slowly, mimicking comprehension.

We repeated the entire conversation three more times before storm clouds chased us back to the car.

And so it went for the next several months – COVID-19 cases fell and rose, and clinical trials for a possible vaccine got underway. My mom continued these through-the-window visits with my grandmother. And I started graduate school – virtually, of course – at Arizona State University’s Cronkite School of Journalism and Mass Communication.

Emily Schmidt stands with her parents, Bridget and Howard Schmidt, in front of their family home after she graduated virtually from Stanford University on June 14, 2020. (Photo courtesy of Emily Schmidt)

The window was where we celebrated milestones with Grandmom – her 78th birthday that September, my mom’s birthday in November, Thanksgiving.

As Christmas approached, COVID-19 cases started surging again. By the third week of December, weekly confirmed cases among nursing home residents peaked at more than 33,000, with 6,000 deaths, according to the Centers for Medicare and Medicaid Services.

In past years, Garland and her staff would throw big indoor holiday celebrations, complete with caroling, but that wasn’t an option. So they got creative.

A few days before Christmas, I stood outside my grandmother’s frosted window, the warm breath behind my cloth mask fogging up my glasses. My family surrounded me, singing “Jingle Bells” and clapping gloved hands.

Mom led our terrible choir into the fourth verse of the carol, relying on the packet of sheet music Sunrise provided. Uncle Brian swayed side-to-side trying to keep warm in the 20-degree air. Tara and Dad laughed at Mom’s animated pronunciation of “jingle,” while Aunt Sue and cousin Liz stamped on the snow-covered grass.

Amid the familial choral chaos, I just watched Grandmom. I forgot about my numb fingers and toes seeing her seated on her bed next to three other Reminiscence residents, laughing her laugh and smiling her smile, like she knew Christmas was coming. I almost expected her to break out into “Celtic Alleluia” and waltz around with her friends. But she didn’t. She couldn’t.

When Mom finally concluded her 10-minute rendition of “Jingle Bells,” the most lucid resident clapped her hands like a giddy child opening her first present on Christmas morning.

“What church did you come from?” she asked.

“We’re Pat’s family,” Aunt Sue said.

“Do you want to come inside?”

My mother shook her head. “We can’t because there’s a virus.”

“Did you come from a nearby church?”

“No, we’re Pat’s family.”

“Pat’s family?”

“Yes, Pat Rush.”

The woman turned to Grandmom. “You’re so very lucky, Pat. Your family has come to sing carols for us.”

Grandmom looked at her friend with surprise in her eyes, then glanced back at us, eyes still wide.

“I sure am,” she said, even though most of us felt sure by then that she didn’t know who we were.

New year, renewed hope

Jan. 11, 2021: “We start 2021 continuing our excitement about the COVID-19 vaccine, which brings great promise that one day we can all put this worldwide pandemic behind us,” read the first Sunrise update of the new year.

The COVID-19 vaccine was like a golden ticket to opening up care facilities to visitors again. Vaccine rollouts to nursing homes began in mid- to late-December, and at my Grandmom’s center, both residents and staff received vaccines as quickly as possible. She got her second shot on Feb. 12, an early Valentine’s gift.

When Johnson, the memory care manager for Reminiscence, received the vaccine in early January, he called it the light at the end of the tunnel. The existence of a solution, a stop to the exhausting cycle of working and surviving in lockdown, brought him relief but also hope that the isolation of residents could end.

“This sort of separation, it’s not what memory care is,” he said. “Memory care is for being together.”

By early April, I was fully vaccinated and able to join Mom and Tara confidently for outdoor, in-person visits with Grandmom. But the joy of being reunited was diminished by the obvious ways my grandmother had changed.

Before the pandemic, she could remember my name without a prompt. Now, she didn’t know my name at all. Before, she walked without much assistance. Now, she used a wheelchair.

Before, she hugged me and I felt the warmth spread through my bones. Now, she waved goodbye through the window – just one more socially distanced precaution in the pandemic era.

But over the spring and into the summer, we did what we could to regain what had been lost.

Music became a big part of that. Scientific studies have linked music with memory retrieval in those with Alzheimer’s and dementia. And my mom says music has always been a part of our family, so playing guitar to connect with Grandmom was natural when they couldn’t hold a conversation anymore.

One late afternoon in May, once inside visits had resumed, my mom strummed her Martin six-string acoustic guitar and laid out the sheet music for “Bill Bailey, Won’t You Please Come Home?” inside Grandmom’s room. My sister and I sat next to our grandmother, who was in her wheelchair.

“Em, get an egg shaker and put it in Grandmom’s hand.”

Grandmom didn’t know what to make of the egg shaker. She just held it still, so I shook it for her and began keeping the beat.

G chord. D7 chord. Singing, humming, laughing, bouncing knees, shaking hands, nodding heads. We were all jamming – Grandmom spitting words here and there when she could remember lyrics or sound out the syllables. I tried to record what I could for Mom.

First verse, chorus, second verse, chorus. Just as I had forgotten about my numb fingers and toes at Christmas, I forgot about my worry and sadness while looking at Grandmom being herself as best as she could.

Her laugh grounded me in the moment. I forgot that she couldn’t remember.

For the next half hour, we sang like all those years ago on the porch of our beloved beach house. The only thing missing was the rest of the family, now scattered along the East and West coasts. And beer, of course.

A last visit with Grandmom, for now

Aug. 12, 2021: “To date, the significant majority of our residents and team members are now fully vaccinated – an important milestone,” the latest Sunrise update reported. “While vaccines are critical, we know we cannot rely on them alone. … That is why we will continue to follow the safety and infection control protocols that we have in place.”

In August, I left Grandmom and traveled to Arizona to attend my last semester of graduate school in person. But in October, I was able to return home for a few days during fall break.

With a short list of people to see, my grandmother was priority No. 1.

On my last full day in Pennsylvania, I was at Sunrise all morning and afternoon, looking after Grandmom as she ate, listened to music and watched other residents play cornhole in the courtyard. I cheered her on when she rolled a strike in backyard bowling.

It was the most time I’d spent with her since before the pandemic, and I was exhausted. Reminding her who I was, trying to understand her jumbled sentences, keeping her attention – it was all emotionally draining. Late in the afternoon, I pushed her out to a community room and left her to watch TV. I needed a moment to myself.

“I’ll be back, Grandmom. I’m going to clean up your room.”

Then 3-year-old Emily Schmidt poses on Halloween with her grandmother, who’s holding her beloved Yorkshire terrier, Seamus. (Photo courtesy of Bridget Schmidt)

She just nodded.

Inside her room, I sat on the bed next to thick photo albums. I paged through them, smiling at happy moments frozen in time. I glanced up at the framed photos on the wall. Where would these hang after she’s gone?

I shook my head. I couldn’t think about that now. Grandmom was still here with us – physically at least, unlike so many others who had passed away in the previous 18 months. She could have been among the tens of thousands of nursing home residents who died of COVID-19 – many of them alone.

I looked out at the residents in the hallway. With a larger outbreak, it’s possible none of them, including Grandmom, would be alive today. I wouldn’t have danced to Frank Sinatra or sung “Edelweiss” with them that morning.

Sunrise was lucky and so was my family, in some ways. We still had a piece of Grandmom. Even if she didn’t remember us, she was still smiling and laughing.

My stomach grumbled. I hadn’t eaten since breakfast, and it was almost 5 o’clock. It was time to go home.

I gathered the photos I had pulled from the albums and slipped them into my backpack. I put away the albums in the love chest next to the door. Walking out to the community room again, my grandmother looked the same as I had left her. She squinted at Lucy Ricardo and Ethel Mertz gobbling candies off an ever-quickening conveyor belt.

Careful not to scare Grandmom, I tapped her on the shoulder. She jumped anyway.

“Grandmom, I’m going to take you back to your room.”

She wanted to say something but couldn’t find the words.

I wheeled her in to face the TV and put on “Friends,” a show that keeps her laughing. I grabbed her favorite baby doll and placed him in her hands. She played with the tiny buttons on his plaid shirt and ran her fingers through his curls.

“He’s a good boy, isn’t he?” I asked.

“He is a very good boy,” she replied.

I took a deep breath, trembling ever so slightly.

“It’s time for me to go, Grandmom. But I’ll see you tomorrow, OK?”

She started laughing, cradling the doll. I bent over and kissed her on the cheek.

“I love you, Grandmom.”

“Love you, too,” she said.

Somehow, I felt her words to be true. She didn’t know who I was or why I’d spent all day with her. She didn’t know that I wouldn’t come visit again the next day. But for reasons I couldn’t explain, I knew her words weren’t empty. Alzheimer’s could take her memories, but it couldn’t take away the feeling of loving someone.

And I promised to remember this moment for her.