CONTENTS HAVE SHIFTED | Kristin Graziano
I shifted in my chair as I talked into the computer to my mother two states away, my hands holding onto the keyboard like a life raft. Something was different about her. Her eyes were strange, barely recognizable. They looked distant, fearful, out of focus. Gazing into, or onto, who knows what. Memories? The outside world she hadn’t set foot in in over two years? Something beyond this earthly dimension? Over time, I witnessed her memory dwindle, slowly, stepwise. She had withdrawn into her nursing home bed that has been her home for seven years now. But until this day – until this conversation – my mother had mostly known where she was, what was going on around her and could at least tell herself she was “in the hospital until she got well.”
Until this day, she seemed mostly in touch with reality during our weekly Zoom calls. Surprisingly, my mother had managed quite well with this new form of communication, now part of her life. It filled the gaps between the times when I could fly from my home in New Mexico to see her in California. Occasionally the calls did cause her trouble – sometimes she would knock over the laptop with an unintended wave of her arm and the device would go flying. I often wondered what she thought when I suddenly disappeared. Poof.
Today was different. Her nurse Felicia saw the concern in my eyes. She adjusted my mom’s pillow and said softly, “I know, she seems ‘off’ this morning. Thinks we’re out for breakfast.” Then she added, “but, as you know, this is all part of the natural course of dementia.” She pressed the button that raised the head of the bed, and the mechanical whirring of moving parts brought my mother’s face closer to the screen. Felicia was right, I knew this “natural course.” It was the exact course I had seen in my own patients. My stomach tightened as I thought I’d probably said these same words to their families. I made a mental note to avoid such phrases in the future.
Once Felicia left the room, my mom shook her head and spoke in hushed tones through the borrowed laptop. “Kristin, something’s not right,” she muttered. She looked around the room as if someone could hear us, as if that would be dangerous. I wondered if she had placed us in one of her favorite spy novels.
“I don’t know, honey, something’s not right,” she repeated. “Here I am in this restaurant, and I don’t know how I got here. And I am in my night gown, look at me! And my hair!” She made an attempt to smooth the unruly tangles of curls jutting coarsely from her head in all directions like shooting stars. “I ate a real good breakfast. Pancakes. They brought it right here. But I don’t have any money to pay the bill. I don’t know how I’ll get home.”
Her face grew large as she drew closer to the screen, anxious. She looked at me for guidance, for answers. I had neither. My mother, a single parent, who raised me, her only child, who had been loving and capable and strong throughout my life was hurting in a way I did not know how to fix.
“I’ll need to tell you more when you are here,” she whispered. “I don’t think we can talk about it now.” She looked around nervously and mouthed to the screen, I think they’re listening.
My mother wiped dried syrup from her lips and spoke, her voice low and quivering. “When are you coming?”
I tell her I don’t know, informing her again about the pandemic. I explain once more they can’t let family in because they are keeping the virus out. I remind her she is in her room at the Care Center and there are people there to help her. I tell her not to worry about paying for breakfast, it is included. My voice cracks as I speak these facts.
Her bluish-gray fingers, crinkled and shaking, reach out towards me, her eyes imploring. I see her grab at the computer. The image on the screen wobbles and topples, then goes black.
***
My mother was never supposed to end up in a nursing home. Thirty years ago, when I was a medical student ambling down halls of long-term care facilities smelling of bleach and urine and deal-of-the-day air freshener, I convinced myself my mother would not live out her last days in one of these places. As I passed patients in wheelchairs strewn willy-nilly around dining halls and activity rooms and nursing stations, I would try to make eye contact and smile. Some patients perceived this, some did not. If time allowed, I’d stop and chat with those who acknowledged me, often captivated by what came out of these interactions. I heard stories of wartime, of civil rights struggles, of the loss of children or spouses, of musical accomplishments. I saw wrinkled faces transform into young vibrant ones, eyes sparkling, diving without hesitation into the opportunity to share moments of their life with a visitor, especially one in a white coat.
In these places, I noticed there were two different experiences of time. For patients, time moved slowly, stretched out before them to endless horizons. For the staff and caregivers, there was never enough time. An underlying sense of rush and unmet needs was palpable. Nurses responded to call lights, delivered medications, took vitals, changed dressings and phoned family members and attending physicians. Social workers wrestled with insurance companies, ordered medical devices, and spoke to chaplains. Therapists used supporting belts as they monitored slow and awkward steps. Life Enrichment Specialists set up puzzles, helped with craft projects and led afternoon bingo. Invariably, music from a bygone era played over the sound system as toes tapped upon wheelchair footrests. But even during the infancy of my medical training, despite the best intentions of those dedicated workers, I knew there was not enough time, not enough staff, not enough care. Not enough.
I couldn’t help but feel these were not places of healing but rather places of storage. Storage of loved ones. I felt the pain of the patients who lived there as well as the pain of those who decided this was necessary. And I am ashamed to admit, I judged those decision-makers, questioning why they didn’t make other choices. In my ignorance, I was sure there must have been other solutions. In this young stage of my medical education, and before anyone in my own family had reached such a critical amount of need, it was easy for me to say, “never my mother.”
***
By the fall of 2021, nursing home policies allowed me to visit my mom in person again. However, COVID restrictions were often abruptly reinstated based on state surveillance data and routine sampling of staff and residents. In October, my mom’s favorite baseball team, the San Francisco Giants, were in the play-offs. My mom held an indefatigable passion for the Giants and loved to talk baseball with anyone who’d listen. She knew stats, history, strategy. She was not shy about questioning coaching calls or yelling at the umpire on her TV. Indeed, my mom’s brain chugged along like a well-oiled engine when it came to baseball. Felicia, my mother’s favorite nurse – because she too was a Giants fan – would shake her head and tell me, “She’s razor-sharp today, must be a ballgame on later.”
Although it was challenging to plan visits around potential lockdowns, I bought a plane ticket to California hoping we could watch some of the games together. The Giants were going up against the Los Angeles Dodgers, my mother’s nemesis.
My mother had been doing better, her extreme episodes of confusion and lapses from reality were less frequent. Although she continued to tell me that some of the staff were stealing her things, that people in her life who had already died were calling her on the phone, that soon she would be going home. For years I felt compelled to refute her falsehoods. I felt that by correcting her, I could yank her back to The Truth, to the real world. Whenever I did this, sharp words spoken with resentful tones followed, leaving us both frustrated and silent.
But lately, during our weekly Zoom calls, she was in good spirits and, as always, curious and thrilled about the goings on in my life. The nursing staff often told me that she talked about me all the time, proud of her “Daughter the Doctor.” Tele-visiting was a blessing, especially during the darkest hours of the pandemic, but it was no substitute for sitting by her side surrounded by her humor and warmth. When I did visit, I saw how she bantered with the staff, how there was mutual fondness among them, how easily they moved through their routines. It helped me realize she was being well cared for and that my mother was happy, even though she missed seeing me and frequently asked when she was going home.
***
My flight to California that October was uneventful.
“Honey, you made it!” — my mother’s face bright as a garden box of peonies as I strode into her room.
Behind a secured N95 mask and face shield, I said, “I sure did, I wouldn’t miss a chance to watch a Giants playoff game with you!” By the time the words finally gained access to the air, they were muffled mumbles. And even though I had just come in from a brisk autumn afternoon, I was already sweating in my pale yellow, non-breathable, Personal Protective Equipment gown handed to me when I arrived. I leaned over in my sterile garb meant to provide distance and held my mother close. It had been over a year since we’d hugged.
My mother, who couldn’t hear much of anything and who was too proud to wear her hearing aids yelled, “Speak up, honey, I can’t hear you over the TV.” Unbeknownst to her, the TV was on mute. What was really happening was that my mom’s subtle expertise of reading lips, which she relied on to hide that she was nearly deaf, was being foiled by two layers of infection control devices. The required accessories, meant to protect patients and visitors alike, interfered with our communication. Indeed, with them in place, we could not communicate at all. I had tested negative for COVID five days in a row before flying and had worn my N95 during my travel. Weighing the lesser of two evils, I ditched the shield, lowered the mask a bit, moved 6 feet away and pulled up a chair.
“I’m so happy you’re here,” my mother exclaimed, clapping her hands.
“Me too, Mom,” I said, grinning.
***
It took me a long time to grasp that going along with my mom’s stories, implausible to me but indisputable to her, was much better than confronting and correcting her. Slowly, I learned to listen intently instead of interrupting. Like the time she told me how she and her sister just got back from shopping at Penny’s for new outfits. The same sister who my mom hadn’t spoken to in years. They had had a vicious argument, and although later neither of them could remember what it was about, it kept them apart for decades, even up until the time her sister was struggling with a long illness that ultimately took her life. Or another time, when I leaned forward in my chair as she bubbled over about seeing her father the previous week. I didn’t remind her that her father passed away when I was in high school. Once, I caught myself and offered encouragement instead of a rebuke when she told me she was going out on a job interview, “I think I’ll get back into real estate, honey. I was always good at that.” I didn’t flinch when she suggested we take her mother, my grandmother Nana, to the Kentucky Derby. “You know she will just be enchanted by all those hats! Nana always dresses to the nines, never going outside without her hat and gloves!” She had forgotten that Nana passed away several years previously. And then there was the time I assured her that Jake, the stray dog she took home from the corner gas station, hungry and flea-infested, who lived out his second-chance life with her until she had to put him down, was being well taken care of while she was in the hospital.
***
In her room, sipping her favorite gourmet coffee I picked up on my way in and watching the Giants-Dodger playoff series on the television, I remind her I’m headed back home to New Mexico in the morning. I see her eyes fill with sadness. I quickly add, “But you know mom, I love you, and I’ve already booked a flight back in a couple of months.”
She sighs, “oh honey, I love you more! I’ll miss you, I hate when you leave!” Then with a twinkle: “I have an idea! Maybe when you come back, you and Nana and I can go to that breakfast place I went to the other day. Or was it last month? No matter, you know — the one where I ate those scrumptious pancakes in my nightgown?” She throws her head back letting out a boisterous laugh, both in self-mockery and at the incredulousness of the situation she found herself in that morning.
I choose to giggle along with her, “Yeah mom, let’s do that.”
As I nod my head in agreement, I realize I’m no different than those families of nursing home patients I silently scolded decades ago. I’m remorseful for my past judgements and offer a silent apology to the universe. Just like them, I want the best for my mother. Just like them, she needs help, and so do I, a truth I’m beginning to accept. I’ve learned to be gentler with my mom, and gentler with myself, although guilt still follows me, hovering about the shadows, waiting for a chance to get in.
Looking out my mom’s window, I admire a robin scuffing in the grass, intense in its search for grub, and I am thankful I have learned some things. I’ve come to understand that disputing what my mother says, essentially trying to argue her out of her dementia, is unproductive and upsetting. Instead, by sitting myself down in the armchair of her reality — whatever that may be — our visits are enjoyable and our relationship continues to be a tender one.
I turn back to the television just as the Dodgers hit a 2-run homer in the fourth inning.
“Ugh,” my mom hangs her head and groans. I take a sip of coffee and smile, grateful for this time together.
Kristin Graziano, DO, MPH, FAAFP is a family physician who spent most of her career living and working on the Navajo and Jicarilla Apache Nations where she gained an intense appreciation for the strength and stories of her patients and the beauty of their landscapes. Recently retired from clinical practice, she is exploring the right side of her brain by dabbling in writing. She spends the rest of her time hiking, cycling, and advocating for wilderness and mitigating climate change. She lives in Northern New Mexico with her lovely wife Joan and their impossibly brilliant Blue Heeler, Macy.