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This Is What It's Like To Watch Someone You Love Die From ALS

In May 2009, my mom came to visit me just before I graduated from law school. My dad and sisters were scheduled to arrive a couple of days later. The day after she arrived, I met her for lunch.

My mom had been undergoing medical tests for several months because her speech had started to be slurred and several other mysterious symptoms had presented themselves over the past few years. When I asked her if the doctors had discovered the cause of her symptoms, she blurted out, “The neurologist thinks that I have ALS [amyotrophic lateral sclerosis]. I’m scared to die this way. Eventually, I will be unable to speak and eat on my own. … I will never make it to your wedding.”

I froze in my chair. The words were barely sinking in. The way she looked that day ― her shocking weight loss and the visible despair on her face ― is still etched into my brain.

To understand how devastating it was for my family when my mom was diagnosed with ALS — a “progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord,” according to the ALS Association — you need to understand my mom, Sarah. For my whole life, for better or worse, she was not like any of the other mothers I knew. She was one of the few female partners in her D.C. law firm and one of the few moms in a senior position. She embarrassed me by yelling out the chorus of Salt-N-Pepa’s “Let’s Talk About Sex” in front of my friends in elementary school, always arrived late and sometimes demonstrated her New York roots by flipping off cab drivers when taking me to school. She was short but athletic and tough. I can count on one hand the number of times that I saw her cry in my life, and I distinctly remember when I was finally old enough to beat her in a running or swimming contest. The most common expression that we heard from her was, “Reilly, you are so full of shit,” which was directed at my dad, typically during a debate about politics. I simply could not believe that someone as seemingly invincible and full of life as my mom was now facing a disease that would kill her in just a matter of years, if not sooner.

My dad painfully recalled how a callous neurologist gleefully exclaimed, ‘She has ALS!’ to my parents after he finally determined what was wrong with her.

When I found out about my mom’s diagnosis, like most people, I knew virtually nothing about ALS. Weeks before my graduation weekend, my dad had badgered me to let him drive me from my law school in Indiana back to D.C., which seemed ridiculous, given my age. But as he drove my car home, I sobbed the whole way. “Katie, please breathe,” he sporadically reminded me as I read every article I could find on Google about ALS. He explained the details of the agonizing process of elimination they underwent to arrive at the diagnosis. He painfully recalled how a callous neurologist gleefully exclaimed, “She has ALS!” to my parents after he finally determined what was wrong with her. Dad promised we would figure it out. “These people clearly don’t know my mom. She will beat this,” I declared.  

The timing of my mom’s diagnosis was lucky, in that I had been recently deferred as an associate at a law firm in New York, which enabled me to move in with my parents. Before I learned about my mom’s ALS, a bad breakup was the most intense heartbreak I had experienced in my life. I was not personally familiar with death at all, as all my grandparents had passed before I was even a year old and I never had a close relationship with anyone who had died.

Initially, my mom didn’t want to share the diagnosis with anyone outside our immediate family and a couple of close family friends. We desperately hoped that it was a mistake. So we kept the news tight, leaking it only to select individuals when my mom felt comfortable. It felt like a weighted blanket of shame. For months, although I understood it wasn’t logical, I firmly believed that she would somehow defeat this terminal illness. We would just hunker down as a family and research, fight and win.

Months later, when we could no longer hide mom’s symptoms, I strategically began to share her diagnosis with friends. Frequently, the person I told was unaware of what exactly ALS was or what it did to its victims, so I would then detail the way that she was going to die ― losing the ability to speak, eat and eventually breathe as all her muscles slowly atrophied while her cognition remained intact. While I said each word out loud, I felt more and more alone as I realized that no one knew or could really understand what we were facing. Each word physically hurt to say. The conversation would usually end with me saying, “No, there is no cure,” as friends inquired about our treatment plan.

Reilly with her parents a few years after she was born.

Courtesy of Katie. C. Reilly

Reilly with her parents a few years after she was born.

As time passed, my mom’s voice became more impaired. Initially, as other people had more and more difficulty understanding her, I became her interpreter. It was a duty I carried out with pride. Despite the overwhelming sadness I was experiencing, I felt that my mom and I were more intimately connected when she was sick than we ever had been before, and to me, my ability to understand her slurred speech and make it clear to others exemplified that. When she finally lost her voice and I was unable to fulfill that role anymore, I felt like a failure. Her despondency at being unable to communicate weighed heavily on me. Her inability to speak isolated her even further. I started to hate the sound of the voice from the machine that she was forced to use to talk for her.

My mom had bulbar ALS, a type of ALS that affects the muscles in the face, neck and chest and usually progresses faster than limb-onset ALS. After losing her voice, my mom’s ability to breathe and then to swallow were the next casualties of the disease’s continued onslaught. She became increasingly dependent on a breathing machine. There were so many nights when my dad, mom and I sat at the dinner table and my mom would randomly choke or spit up water and it soon became clear that she would need a feeding tube to survive. She continued to lose weight, had trouble breathing and spit uncontrollably.

Despite what was happening to her, she remained the woman I knew and loved, and her personality and spirit continued to shine. One day when a friend came to visit, Mom wrote in a note, “It’s considered polite in China to spit,” and handed it to her friend shortly after she arrived. At another point during her illness, I went to visit a friend who had rented a house in Nicaragua, where I met an Irishman who I was interested in (and is now my husband). Months later, I decided to return to Nicaragua to see him. I was certain that my parents were clueless about the true intentions of my trip, but before I left for the airport, I saw a note from my mom on my suitcase that read, “Who’s the guy?” with a smiley face. She drove her car until just before she died (which I now recognize was quite dangerous), demonstrating her determination to fight for her independence despite her devastating circumstances.

My family at my sister's wedding in June 2010. The fact that my mom is in the middle of the family is not surprising, given t

Courtesy of Matt Mendelsohn

My family at my sister’s wedding in June 2010. The fact that my mom is in the middle of the family is not surprising, given the matriarch she was.

My mom’s battle against ALS pervaded and consumed my family’s collective life, particularly for my dad and me, who were her primary caretakers. Our house gradually filled with different foods, nutritional products, dietary supplements and medical equipment related to her disease. We tirelessly consulted doctors and advisers regarding new medications or alternative treatments that might offer her some hope or at least a little relief from her symptoms. Still, every time we adjusted to a new unwanted change, another, larger one followed, and as hopeful as we tried to remain, we gradually began to feel completely beaten down by the disease.

Before long, my mom’s mood began to change too. The woman who once filled the house with the world’s greatest head-thrown-back laugh was now unrecognizably sullen, depressed and quiet. The silence was ominous.

In June 2010, approximately a year after I found out about her ALS diagnosis, my mom, now physically unrecognizable from her prior self, attended my sister’s wedding. The following month, she had such difficulty breathing that she ended up in the emergency room, where we learned that she had contracted pneumonia. During her first few days in the ER, we planned to take her home, but we were told by hospital staff that we couldn’t, although I was never given any specific reason. My whole family longed to have her discharged so that she could die surrounded by family in a place that she loved, but tragically, that didn’t happen.

When we were given the ultimatum by the doctors at the hospital to authorize a tracheotomy on her or watch her die, we knew the decision had already been made. My mom did not want to live dependent on a tracheostomy tube or a wheelchair until her death finally arrived. And because she had been a healthy and active woman, her death was not quick. Days passed, and though we knew she was going to die, there was nothing we could do but watch her as she slowly ― too slowly ― moved toward the end of her life. At one point we pleaded with members of her palliative care team to give her more morphine, and they eventually did, which eased her pain.

Because she had been a healthy and active woman, her death was not quick. Days passed, and though we knew she was going to die, there was nothing we could do but watch her as she slowly ― too slowly ― moved toward the end of her life.

After my mom had been at the hospital for almost two weeks, my sisters decided to go back to our house for the night, so it was just my dad and me in my mom’s hospital room. At one point I took a nap on the floor. I still remember the black bandeau floor-length summer dress that I was wearing and tried to use as a blanket in the excessively air-conditioned hospital room. Around 2 a.m., I randomly woke up and saw my dad, visibly upset, by my mom’s bed. “We don’t have long,” he told me. I moved to sit next to her bed so he could take a break, and I held her hand. I watched her face for what I think was an hour until her breaths slowed and then stopped. Sixteen months after she was diagnosed, we lost my mom to ALS.  

Because of the particular brutality of ALS, I have fought to remember my mom as she was before the disease and not what it did to her or how it ultimately took her from our lives. After she died, my dad reminded me, “ALS did not define her life, Katie.” He was right. She lived a full life with great professional success and family and friends who adored her. But ALS dictated when and how she died. It ransacked her brain, atrophied her muscles and ravaged her happiness, and it has been difficult for me to remember the good times that existed before the disease changed everything.

ALS also took a grave toll on my dad. He was diagnosed with cancer a year and a half after my mom died, and his oncologist explained that the disease was likely hastened by how run-down he was from the emotional and physical demands of caring for her. He completed one round of chemotherapy, but when the cancer returned less than two years later, he died within months ― on my mom’s birthday.

The combination of my dad’s illness and subsequent death and my approach to how I handled my grief stunted my ability to process my experience with ALS. I grappled with the guilt that accompanied the feeling that I should have done more to help my mom ― even though I know there was nothing else I could have done. I was constantly filled with anger and sadness, and I often felt there wasn’t the space to share the ALS memories that haunted me. I felt pressured to accept my mom’s death, to grieve her less and to move on. So I put my head down, worked longer hours and tried to push through. Over time, I felt that my ALS story was not even worthy of being told.

Reilly's mom doing her famous head-thrown-back laugh on a family vacation in the late 1980s.

Courtesy of Katie C. Reilly

Reilly’s mom doing her famous head-thrown-back laugh on a family vacation in the late 1980s.

More recently, particularly after the birth of my daughter a year and a half ago, I started to share my experience with my mom and her ALS more frequently. With time, I am learning to not hide from those difficult memories and to slowly accept the changes in me that occurred because I was an ALS caretaker. My grief continues to be a part of my life, but for the first time in many years, moments from my family’s life before ALS are slowly resurfacing. On rare occasions, I can almost hear my mom’s laugh, which was so powerful, it filled any room she was in.

About 30,000 Americans are currently battling ALS — about 0.009 percent of the country’s population. The extreme rarity of ALS and the lack of public knowledge about it isolated my family during my mom’s illness and contributed to my social retreat in its aftermath. I hope that sharing my ALS story will bring awareness to the cruelty of this disease that took my mom’s life and perhaps help others who are serving or have served as caretakers to feel less alone on their ALS journey.

Katie C. Reilly is a writer, attorney, mama and griever. She grew up in D.C. and now lives in Oakland, California, with her husband and daughter. She loves to travel (or did, pre-baby), loves women’s sports and exclamation points! Say hi to her on Twitter @KatieCReilly1.

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