Lilian loved my red shoes. “They look so happy and bright,” she told me dozens of times.
They don’t feel very happy and bright today, in this room full of strangers, at her post-funeral brunch. The event is hosted by Tricia, her friend of thirty years. Looking at my shoes, I tried to answer the other mourners’ questions. As the caregiver, they expect me to have the answers.
“And you’re sure she didn’t pass from something preventable? You didn’t notice anything…off?” Tricia asks me this question for the fourth time, holding a glass of chardonnay. She had introduced me as “Maddy, The Aide Who Was With Lilian When She Died”, before asking me to tell the story of Lilian’s passing. Besides Lilian’s stories, this was our first meeting.
I want to scream back at her: Lilian had multiple sclerosis. Renal failure caused a disbalance in her chemical makeup. A UTI wreaked havoc on her mental and physical stability. The wound she’d battled for over a year contracted a nasty infection. Her kidneys, the infection, and the UTI couldn’t heal because her body had gone septic. These issues snowballed, ending in cardiac arrest.
I’d seen the charts: the doctor showed me the lethally low levels of blood-oxygen, electrolytes, and everything else keeping a person alive. Her body had finally failed after years of fighting a chronic disease. Nothing could have prevented the inevitable, but Lilian’s friends couldn’t believe this.
“I’ll be fine in the morning,” Lilian told me the last time we spoke. “I’m not going to the hospital.”
Earlier in the day she’d been vomiting. A night aide helped her to bed at 6pm, three hours earlier than her usual bedtime. Me, two of her other aides, and her nurse implored her to go to the hospital. She took too many laxatives that afternoon, we were concerned about dehydration. I showed up at her house at 11:00pm and begged her to drink more fluids or consider a hospital trip. She sent me home, promising to call if she needed anything.
The next morning she’d gone into cardiac arrest and an ambulance rushed her to the ER. Her morning aide had tried CPR, then called me panicking from the hospital. She asked if I could meet Lilian, because she needed to be at her other job.
I held Lilian’s hands as she struggled to breathe. Two other aides arrived and we manned her bed, informing the nurses of Lilian’s preferences. Comfort measures were called for, so we tucked blankets around her and dimmed the lights. We called her closest friends, warning them that she had maybe an hour of life left. After her hands turned cold, I shut her eyes.
Tricia, after receiving my call, went to the dog park.
My title was ‘formal caregiver’, meaning an aide who provides care in someone’s home or in another care setting. But to Lilian, caregiving meant more.
She laughed at me during breakfast when I dropped pills on the floor. “Always throwing stuff around,” she’d remark, shaking her head with a mischievous grin.
When my boyfriend broke up with me, she said, “You’ll feel better. You’re only 22, you’ve got lots ahead of you. When I was your age I was dating my professor who was twenty years older and still didn’t give me an A!”
We tried to convince her nurse that edibles were the best medication for her. Sarah never bought it.
Lilian had dozens of stories from her time as a music executive in Los Angeles. Throughout her morning routine, she would tell me about the Playboy mansion’s macadamia nuts, an almost romantic friendship with Shel Silverstein, her friend’s very romantic relationships with J.R. Salinger and Marcel Duchamp, her Pakistani cat, and so much more. I found her life fascinating, parties at Andy Warhol’s and collaborations with Bruce Springsteen, but she also found mine entertaining. She stayed current on who I was dating, my schoolwork, and what I was up to on Friday nights. We exchanged book recommendations and she urged me to write. She introduced me to “The Christian Life”, and taught me to laugh along with The Byrds at people who didn’t accept me.
Caregiver and client didn’t describe us, friends did.
Lilian had multiple sclerosis (MS). This degenerative motor disorder slowly eats away at the myelin sheath of nerve fibers, eventually inhibiting the brain’s ability to send signals to the rest of the body. The break down of the nervous system results in loss of muscle control, vision, and mobility. In the worst cases, a victim can become paralyzed, unable to move any limbs. Lilian had the worst case.
Lilian and I had tackled dozens of hurdles together. Six months before her passing, Lilian unexpectedly lost all of her aides, stranding her with no care — except me.
Until then, I’d worked three mornings a week for Lilian, helping her get out of bed, get dressed, and eat breakfast. After the other aides left, I picked up the extra shifts. From August through October I worked seven mornings and three nights a week. The other four nights I spent at another job with the local news station and during the day I took university classes.
When not working, I placed ads with the local university, Care.com, public notice boards, and spoke to every nursing assistant I knew, desperately trying to find more aides. Though relief came in early November with the hiring of two new aides, it didn’t last long.
The two new aides went home for Thanksgiving and Christmas and Lilian’s family couldn’t make the trek from Virginia to see her for either holiday. Instead, Lilian and I sat around her table with a warmed up turkey from the neighbor.
Soon a Christmas tree went up and we discussed our favorite holiday traditions. Lilian looked forward to the yearly self-portrait her granddaughter painted during her Christmas visit.
As it was my first Christmas away from home, I tried my best to make it merry. With no time, money, or ornaments for a real tree, I improvised by painting a bright pine tree with multi-colored gifts on an old refrigerator box. The makeshift tree even had tiny yellow dots that, if I squinted, resembled lights.
“It’s darling,” Lilian said of the tree as I proudly showed her a photo. Lilian’s praise of my cardboard Christmas made it seem less depressing.
However, as Christmas melted away, so did my ability to pretend I was okay. During the holiday season and into January, I had worked fifty straight days between my two jobs. Even with the help of the other aides, I could feel my body giving out and the negative mental toll of constant care. Burnout, compassion fatigue, anxiety, and depression set in, pushing me to a breaking point. I missed my family and friends. I hadn’t sat down for breakfast since August and the pressure of pouring everything into Lilian’s care had put a strain on my friendships, my academic success, and my relationship with my boyfriend.
According to The American Institute of Stress, a caregiver can’t see the harm she does to herself because her focus is solely on someone else’s needs. Her health begins to decline, just like the caree’s. Compassion fatigue, the emotional toll of supporting an individual enduring a traumatic experience, sets in. Burnout follows. This can cause sleep disturbances, mental exhaustion, depersonalization, physical fatigue, decreased self-efficacy, and eventual isolation. These factors eventually decrease an aide’s ability to care for her person and ultimately herself.
In an article published in The Globe and Mail, one family caregiver described an aide’s declining mental and physical health as “A frog in slowly boiling water.”
As Lillian’s health deteriorated and her needs grew, I became more consumed with her care. I worked every waking minute. While in class I created care sheets for future aides. During lunch breaks I ran to her house to make sure she had food. On my way home I picked up medication and groceries for her. Every night I cried over my inability to stop the chronic pain, the ever growing wound on her back, and the bouts of depression she struggled with. I cried because I was a poor substitute for her family, her friends, and the care she deserved. I cried from pure exhaustion.
My care was a splash of water on an unstoppable wildfire. I found myself caught in the flames of an ending life, but as self-appointed firefighter, I couldn’t see the frivolity of my efforts.
I missed my father, brother and best friend’s birthdays. I skipped Christmas, Thanksgiving, and New Years. I canceled plans to cover missed shifts. I had nightmares about waking up and finding Lilian dead. I stopped hanging out with friends, I had no time, and my boyfriend left me because he couldn’t understand my devotion to a dying woman. I didn’t understand devotion to anything else.
On February 20th 2019, I found myself in a waking nightmare. Lilian had gone into cardiac arrest. At the ER, I found out her son had called for comfort measures only — she wouldn’t be going home.
In disbelief I entered Room 12. The paramedics set up three chairs around the small bed Lilian laid in. Her face was waxy and yellow, she didn’t look good.
I couldn’t cry as I held her hand in mine, and watched her slowing heart monitor. I couldn’t cry as the other aides and I retold her stories over her flickering eyes. I couldn’t cry when she took her final breath. I couldn’t cry as I hugged her cold body.
For three hours, I sat in the hospital lobby waiting for Lilian’s son and still couldn’t cry. He’d driven all day only to see his mom’s body and even then, when I told the story of her death, I couldn’t cry.
At home I cried though. I lay in bed shaking and covered in tears. The scaffolding constructing my days buckled. I didn’t understand how the world kept turning. I couldn’t sleep. I couldn’t eat. At three in the morning, I found myself driving a dark and lonely highway trying to forget how empty the world seemed without Lilian.
And yet, at the memorial, Tricia asked the question again.
“Are you sure there was nothing you could’ve done?”
She turned away. Alone in the corner I watched Lilian’s friends reminisce, The Byrd’s playing from the Bluetooth speakers. I felt like an imposter.
To them, I was only an aide.
Madalyn Eglian is a United States based traveler and storyteller. Usually wandering, she is always on the lookout for interesting people, places, and things. Her dream is to one day own a boat plane business while living on an Australian beach.