Story by Laurel Kathleen Loustau
Illustrations by Avalon Nuovo
As a doctor, Dad was very specific in his wishes for end-of-life care. I agreed wholeheartedly…back when it was purely theoretical.
My father’s whiskers were healthy to the end. After scraping away the stiff scruff from my dad’s face in the morning, he looked handsome – dignified. The next day, the whiskers returned. As if a sea captain had blown a whistle, facial stubble popped out and stood at attention on deck. The silver crew bristled, ready for orders to save the slow-sinking vessel that was his body. I emerged too, each day, ready to save, save, save. But I now realize that in my zeal to care for my father – shave, reposition, feed, provide skin care, brace his broken hip and treat his bladder infections, I almost forgot to let him die.
I was born when my father was 48 years old, so I was on the younger end of the caregiver spectrum, still in my thirties, when he came to live with me the last four years of his life. During his final year, he was diagnosed with a broken hip, which didn’t sound terminal. But four months, three failed hip revision surgeries and two sepsis cures later, he was back home in a strangely mangled state, on a trek from unusually skinny to emaciated, with a catheter draining his bladder. I realized at this point that he was terminal, but I was scared. Was it too late to provide death with dignity?
The route to a dignified death had seemed so theoretically clear on the map my father had laid out for us in his sixties, twenty-some years earlier, when he wrote advanced directives and named health care surrogates. So how had I let the person I loved so much end up exactly where he never wanted to be?
During my childhood, my father, Robert Paul Hudson, was at the pinnacle of his career as a physician and history of medicine professor. He was quick with self-effacing jokes, saying, when he departed the house to give a lecture, that he was off to “deliver the anesthesia.” In a similar vein, he once quoted W.H. Auden’s definition of a professor as “one who talks in someone else’s sleep.” But this was modesty. He regularly won teaching awards.
Among other topics, my dad pushed students to consider various historical philosophies about death and dying. I remember waking up one Saturday morning in high school and he was on public radio as the expert consultant clarifying the philosophy underlying Dr. Jack Kevorkian’s controversial methods of physician assisted suicide.
My dad enjoyed the idea of an earlier death being the trump card for a later death preceded by a span of fruitless suffering. When his beloved hunting dog could no longer walk and looked up at him from the blur of her cataract-filled eyes, he wrapped a handkerchief around her head and shot her.
When my mom had come to a place with her neurological disorder that left her speech blurred beyond understanding and her limbs too weak to move to her wheelchair, she asked my father to provide her some pills. He hesitated, and we had family conversations about her wish to take her own life for more than a year. She worsened daily but, with the help of my grandparents, was still able to live at home. Finally, my father and the town pharmacist, who was a family friend, made the pills available to her. The summer after my senior year in high school, she took them. She died when she was 52. My father was devastated, and went into a depression that lasted the rest of his life, but even after this, he didn’t back away from his stance. It was important to him that his students think about whether a human being should be forced to live longer if that extra time living would only be filled with pain.
He also asked his classrooms of future doctors to ponder the wisdom of pushing to keep someone alive who was terminally ill. He described the case of Karen Ann Quinlan, whose parents went all the way to the Supreme Court for the right to take their daughter off a respirator when her doctors refused. In an article on the subject, titled, “After Quinlan,” published in the 1982 Journal of the Kansas Medical Society, he acknowledged that restraint from medical intervention could cause a doctor anxiety. “There is human comfort in action,” he reflected, “even if the action solves nothing, or even if it makes matters worse.” He advocated for doctors to have the strength to withhold such actions as surgeries or hospitalizations in a terminal situation. “The alternative” he wrote, “is a medical-ethical Alice-in-Wonderland.”
Such a wonderland is where I found myself when my father, the great death and dying professor for whom a fairytale death should have been provided, was in my care.
Having worked as a labor and delivery nurse for the last five years, I was certainly confident about helping with life’s entrances. But it was time to play a new role as my dad approached his exit. Although I did decline a feeding tube and a surgery to install a supra-pubic catheter at the end of his life, I had signed the consents for repeated hip surgeries and had recruited my boyfriend, children and neighbors to help me lift him from his wheelchair to the car for multiple emergency trips to the hospital. As a nurse, I sometimes became consumed with fixing his immediate problems. I now have a nagging feeling that if and when my father ever takes me out to lunch in an afterlife cafeteria and analyzes my handling of his death, he might find me guilty of not helping him begin his plan for a pleasant way to die – a terminal fast – earlier. I was unsure how my “But I’m not a murderer” and my “But I loved you” defenses would hold up in his court. Had I let him suffer when he had explicitly requested not to?
In retrospect, I realize that one of my problems in providing a death with dignity is that dementia lost us dignity points long before death was near. The first sign of my father’s mental decline came ten years earlier, with the appearance of Post-It notes. “Mail this!” he wrote in thick black Sharpie on a yellow square stuck to a bill that was then strategically placed in the dog food container so that he would remember to put it in the mailbox while walking his dogs. Performing things in a sequence was difficult, he told my brother and me one day in 2007. He had an extensive email correspondence with friends and colleagues, but suddenly couldn’t remember the steps to open his email. Still, he was as clever as ever. He pointed to his head and smiled, “Before I can get onto the Internet, I have some work to do on the ‘Inner-net.’” Although he was struggling, at this point, he was still dignified. The litter of sticky notes proved that for the time being, he was still smart enough to outwit his dementia.
However, on May 16, 2009, he made a journal entry in a book he kept at his bedside: “Something really bad happened last night, but worse this morning. Some natural bastard passed a hot check on my memory bank. This was no small amount.” This was the last entry he made in that book. The rest of the book fluttered by under my thumb – nothing but white pages.
Although he somehow had the composure to realize on that morning the catastrophic impact of this particular chunk of memory loss, I never had the composure to foresee how dementia’s damage would affect his character and behavior.
Soon after this, my father came to live with me. While he was no longer able to drive, he was able to walk and talk, eat, read, and enjoy movies and outings. The next year, he stopped reading, unable to remember a sentence from its beginning to its end. The year after that, movies failed to interest him. He still liked dinners together, car rides, and sitting in a chair at the front window, waiting for the mail. Sometimes, his rude or brash comments surprised me. It was like he was some other self, disguised as my dad. But then we all got accustomed to this version of him and loved that too. My children giggled at his comments. Once, from the passenger seat of my car, we passed a jogger wearing orange. “Oh, there’s the orange one again,” he shouted, although we had never seen her before. Once, he became anxious, demanding ketchup at a Mexican restaurant where there was none. In the last year, he began to wander into neighbor’s houses, urinate in my potted flowers and use his cane as a weapon.
The definition of dignity, according to the Oxford tome, is, “having or showing a composed or serious manner that is worthy of respect.” The old Dad would not have accepted this new version of himself. But at that time, I failed to stand by the old Dad’s principles because I was busy helping the new Dad. Plus, the new Dad, incapable of advocating for what he used to want, seemed to still enjoy hugs from my four children, car rides, a shoulder rub, and Dove ice cream bars coated in dark chocolate. Maybe I shouldn’t have, but I accepted the new Dad just like everybody else. Dad made sweet and loving contributions in our home, even with his dementia. Once, he walked all the way upstairs step by step with his cane to where my dramatic youngest daughter was crying in her room about some injustice imposed on her by her siblings. The physical effort he underwent to check on her and make sure she stopped crying touched us all.
In May of 2013, the year before he died, he gave me a note on Mother’s Day. He hadn’t written anything for months. I didn’t even know he still could. It was written on a small notepad. It read:
I AM MORE THAN PROUD
THIS SPLENDID MOTHER
WHO HAS WORKED SO DIFFICULT
AS THIS NOTE, I HOPE, INDICATES.
I CANNOT SAY MORE
OR BIGGER. SORRY, BUT
THERE ARE IDEAS AND
NOTIONS. FAR BEYOND MY
CAPACITY WITH MY FEEBLE
HERETOFORE IF THIS MAY
NOT ACCOUNT FOR MY REMAIN-
DER SO FAR AVAILABLE.
The letter was like gold. I had received a coded message from the old Dad. Even though it didn’t follow the rules of Strunk and White’s style book, it was such eloquent nonsense that I burst into tears. It was a painful insight for me into his mind, what it must be like to be him. Each day, having something to say one second, but lacking the neurons to finish thoughts in the next second. The confusion involved in expressing myself would scare me. I wondered how maddening it would be to have had so deep a vocabulary well and no longer be able to fish out even the word for “mind.” How fitting its omission, though.
On my last trip to the hospital, a urologist who wore a plaid bowtie and a silver moustache looked at me. “There are different ways to honor your father,” he said. “A bladder infection is a benevolent way to die.” He explained that an infection, like the one he had just cured by blasting my father with IV antibiotics, has the power to take you into a coma that allows you to die in your sleep. I looked at the doctor, who stood staring at my father from beneath protruding gray eyebrows. I saw he had the same kind awareness that my dad did. He was overlooking his own opportunity to make a few dollars on final procedures for this human being. He was showing me a way that didn’t involve a fatal dose of a painkiller or starvation. He was telling me that this bacteria we had just fought off for the second time might return. All I had to do was not act. If I did not drag him to the hospital and infuse him with antibiotics, this bacteria might build me the boat I needed to row my dad across the River Styx. It was time to play the endgame right.
I looked across the hospital room at my dad, who was fiddling with his IV line. “Get me out of here!” he shouted at the line. It was a phrase he shouted a lot, no matter where we were. I suddenly realized how far past all of his original quality-of-life lines we had traveled. I took him home, resolved never to come back to the hospital to fix anything else.
It was awkward at the end, with his body eating muscle until every last calorie was leeched. With my children to assist, we used a sheet to move his now lightweight frame out of bed to the couch each day to join the family in whatever way he could. His urine again grew cloudy in the catheter tube. One time, I was surprised that he ate a plate of banana pieces that I gave him. That night, when I peeled off his socks, it turned out that he had stuffed them into his left sock. I wondered if the banana mush in his ankle hair was evidence of a demented act or if perhaps it was his sane choice. In his case, it was hard to tell. Although his dementia worsened, he also had lucid moments.
A few days before my father died, it was raining. He had always loved a thunderstorm. I remembered stories he told about his childhood in Harper, Texas, on the sleeping porch, listening to rain on the tin roof — a sound, which, according to him, was heaven on earth. Not wanting to miss the opportunity, I pushed the reclining couch over to the French patio doors and opened them. I held his hand. “I love you, Dad,” I said. He replied, “I love you too.” Instead of warning beeps on a hospital IV pump, we had raindrops. Instead of others, we had each other.