In December 2019, my mom began her stay at the Barnes-Jewish Extended Care facility in Clayton, Missouri. The place is close to my stepfather, who decided at last to put her into a care home. He has been my mother’s primary and dutiful caregiver for years. The decision was entirely his alone to make.
He felt good about the facility and its staff. It is partially owned and managed by the most respected medical system in metro St. Louis — Barnes and Jewish Hospital.
I first arrived at my mom’s new and likely final home on the first night of my four-day trip in late January 2020. I had flown out from my current home on the West Coast, in Portland. My plan was simple: spend as much time as I could with my ailing mother.
From the outside, the place looked remarkably plain, testifying to its focus on function. The three-story brick building has a gated courtyard and no fancy design features. It mostly resembles thousands of other care homes, where families, loved ones, and our society place our sickest, frailest, and oldest residents to live out their final days and die, hidden from public view.
My trip here also marked the final arc of my family’s life, not far from where we spent our early years together. Over the course of four days, I visited my mom daily, spending a couple hours each day with her.
My mom turned 83 last fall. When I came, she was at the end of her long, seven-year odyssey since she was first diagnosed with early onset Alzheimer’s in 2013. That diagnosis changed everything. Those who care for patients with Alzheimer’s, like my stepdad and my mother’s husband of more 35 years, travel in the deep and dark valley of this horrible disease for intolerably long periods, with few moments of joy.
Though I lived nearly 2,000 miles away, my life also changed completely. I stopped taking vacations. Nearly all the free time I could pull from my work schedule went to trips two or three times a year to see her. I ceased to care about petty squabbles at my job, wanting to conserve my energy and health to focus on my family. It probably allowed unhelpful situations at my job to get worse because I refused to waste time on inconsequential issues and people who were not important to my life.
Every time I saw my mom, her conditions had deteriorated more. By time I came out this January 2020, my mom had already had two emergency room visits the previous month. She first stayed at another care facility nearly 30 miles from her and my stepdad’s cozy home, where her offered loving care for years. He found the Barnes-Jewish facility after lots of rejections and queries. It offered extended care, and he immediately liked it.
Over my four days in St. Louis, I visited my mom’s room on the third floor, where I got to slightly know some of the patients. Most of them were mentally sharp. Some had severe cognitive disabilities. Many were old and friendly to me. I had several conversations with mom’s neighbors during two lunches.
For those lunchtime meals, I spoon fed my mom what little amounts of nourishment she could swallow. When she did, she would smile at me, but not really see me because of her eyesight had long since failed.
I also befriended some nurses and nurses aides. All were cheerful and caring. They lovingly helped my mom with her basic functions: showering, eating, being wheeled in and out of the recreation and dining room. They were pros at moving her around. They also did the diaper changes and clothes changes. I couldn’t do that. Most were African American.
I particularly liked a day nurse, a man with tattoos covering his arms and about my age. I also liked another nurse, a South Asian woman who helped me get my mom out of bed and ready for lunch one day.
Since I last saw my mom in September 2019, she appeared to have aged about five years. She now had nearly totally gray hair. She was so weak, she was unable to walk.
According to my stepdad, on most days, she slept. Sometimes the TV was left on. Other times my stepdad said he put on music, which she liked. He set up some pictures on her bureau of happier times for all of us and put one of my mom’s favorite posters, from the 1904 St. Louis World’s Fair, above her bed.
During each visit, I talked to her. I held her frail, withered hands. Sometimes she smiled. I liked that a lot.
The last morning of my final visit, a Sunday, began as a beautiful winter day in St. Louis. I awoke at 6:30 a.m. I took a brisk walk to clear my head. During those three miles I exchanged friendly hellos to friendly Midwesterners. I wondered to myself how many of them might have family members who were ill or experiencing dementia like my mother.
I arrived at my mom’s facility shortly after 10 a.m. It was quiet. As usual I signed in and walked to the elevator upstairs, through the institutional hallways.
I first went to my mom’s room and it was empty. I briefly panicked. I thought, she might have died the night earlier. I went back to the recreation and lunchroom. There she was, in her red sweat pants, a red sweater, and curled in a fetal position on the chair next the table below the blaring TV. I walked up to her and told her it was Rudy. I could see her smile, but I knew she did not see me.
That morning, a woman minister in her late 60s, wearing a blue turtleneck and blue pants, was leading a Protestant church service in the same room. About 10 of the mostly older patients participated.
I heard the minister speak the Lord’s Prayer, and half of the patients said it with her. She came up to me and asked if we wanted communion. I asked mom, and she agreed, likely not understanding what I asked. She ingested about one half of the wafer.
Mom began to curl up, wanting to sleep again. I ran to her room and grabbed a pillow to give her something more comfortable than a wooden chair arm to rest her head on. The minister, having finished her service, then sat at the piano and began to play hymns. She played and sang How Great Though Are, Go Tell it on the Mountain, Down by the Riverside, Amazing Grace, and other hymns I didn’t recognize immediately. At that moment I couldn’t think of a better thing to be doing for those here, and for visitors like me.
I started crying when the minister and an older African American patient sang Amazing Grace.
This was it, I realized. This was the end. I knew I would never see my mom alive again. My eyes were turning red and I wiped away the tears on my jacket.
I told my mom I was leaving. She smiled and asked where I was going. I said, I’m going to Portland. She smiled. I don’t know if she heard me. I blew her a kiss, not wanting to give her my minor throat illness. Then I got I got a nurse’s aide to punch in the security code to open the secure elevator to leave.
Alone, I started to cry. I mostly kept up my straight-faced appearance in the lobby as I signed out. Once in the small parking lot, I bent over and wept. It has been years since I cried like this. I must have been a pitiful sight to someone looking out a window.
I got in the car and continued to weep. I turned the ignition and began to leave the parking lot, still crying.
Enough of this, I told myself. I wanted to be strong. So I pulled out my stoic shell and put on my public mask. It is the face I show the world, even when things go very, very bad.
I turned my rental car onto Forest Park Parkway, turned north on Interstate 170, and headed to St. Louis International Airport to catch my flight home.