Part One: The Self
Alzheimer’s: Illness and the Self
By Sophia Li
The Institute for the Insane and Epileptic on the outskirts of Frankfurt am Main, Germany was a neo-Gothic styled manor topped with light blue-ridged rooves on a white façade complete with flower gardens, lush courtyards, and wings split up by gender and type of illness. Designed by Heinrich Hoffmann, a doctor who campaigned for humane treatment of mentally ill patients and believed that their ailments stemmed from physical origins, ordered the construction of a sanctuary — treating patients who were deemed unfit to function within society. Little did Hoffmann know 37 years after the “Mad Castle” was constructed, one of the most important neuropathological discoveries was observed within its marble walls. A neurodegenerative disease that would be known as one of the most devastating and invisible to humankind.
I supposed that all the objects (presentations) that had ever entered into my mind when awake, had in them no more truth than the illusions of my dreams. But immediately upon this I observed that, whilst I thus wished to think that all was false, it was absolutely necessary that I, who thus thought, should be something; And as I observed that this truth, Cogito, ergo sum — I think, therefore I am.
— Réne Descartes “Discourse on the Method” (1637)
November 26, 1901 was a gloomy afternoon; the large windows of the asylum, instead of letting in the bright rays of autumn, filtered in only weak gray light.
“What is your name?”
“Auguste.” A woman with wispy black hair and hard-set wrinkles lining her forehead sat next to a German physician, six feet tall with round glasses and a thick moustache. A thin scar running down the length of his left cheek was exposed as he scribbled her response down on a piece of blank paper in narrow cursive.
“What is your husband’s name?”
“I believe Auguste.”
“Oh, my husband…”
“Are you married?”
“Yes, to Auguste D.”
Ms. Auguste D.’s incoherent and repetitive responses were not unfamiliar to Alois Alzheimer. As a doctor who worked at the asylum since 1888, first as an intern, he had interacted with his fair share of patients who suffered from disorientation, forgetfulness, and general mental decline, but what puzzled him was her age. At only 51 years old, Alzheimer was struck by Auguste’s early, rapid intellectual deterioration.
He observed Auguste D. further: During lunchtime, he asks: “What are you eating?”
Alzheimer looked at the pork and cauliflower she chewed in her mouth. “What are you eating now?”
“First I eat the potatoes and then the horseradish.”
A little later he handed her a pen and paper. “Write ‘Mrs. August D’.” he says. Auguste scribbles in shaky cursive: “Mrs.’ If told word for word, she was able to write her name, except writing “Auguse” instead of “Auguste.” Alzheimer had never encountered a patient who forgot her own name while writing it down, noting “amnesic writing disorder.”
On March 18th, Auguste Deter accused her husband of 28 years, Carl Deter, of having “gone on a walk with a female neighbor” among other jealous delusions directed at him. In the following months, Auguste would frequent memory loss, particularly during food preparation, neglected housework, and demonstrated deteriorating mental health. She hid household objects, rung her neighbor’s doorbells, and became paranoid — talking frequently of death. Overwhelmed by his wife’s ailments and psychosis, on November 26, 1901, Carl transferred her to the Asylum for the Insane and Epileptic.
“I have, so to speak, lost myself”
Auguste would disturb other patients by grabbing at their faces; she ran around aimlessly through the halls, and when on her bed, she would fiddle with her bedding, grabbing at her blankets and bedsheets. Auguste was treated with warm baths in hopes to soothe her agitation in addition to regular check-ups and conversations with Dr. Alzheimer. She was not allowed coffee or tea and followed regular bedtimes. 2–3 grams of chloral hydrate, a sedative, were administered to induce longer periods of rest.
She was given regular physical examinations which checked the beating of her heart, her breathing, and common neurological responses. Dr. Alzheimer shone a light into her eyes and watched her pupils shrink — a normal, autonomous physiological response. He told her to stick out her tongue and observed no tremors — indicative of regular motor function. Dr. Alzheimer asked her to write out her name again. Auguste wrote “Mrs.” before forgetting what she was writing. Alzheimer prompted her again.
“I have, so to speak, lost myself.” Auguste repeated, tracing out the same letters over and over, “I have, so to speak, lost myself.”
Alois Alzheimer was born in the middle of summer on June 14, 1864 in Marktbreit, Germany, a small town situated at the southernmost bend of the River Main. Coming from a family of public servants (his father was a notary and his uncle a priest) and as the second eldest of six siblings, Alzheimer showed a predisposition to be a caring and empathetic person. In secondary school, his teachers remarked on his “outstanding knowledge of the natural sciences,” prompting him, in 1883, to travel to Berlin with his older brother Karl and study medicine at the Royal Friedrich Wilhelm University.
There, he took a myriad of classes from zoology to plant physiology but was the most fascinated by his anatomy class taught by Professor Heinrich Wilhelm Gottfried von Waldeyer.
Waldeyer was a Professor of Anatomy and the Director of the Anatomical Institute at Wilhelm. Not only a prolific and renowned author of pathology, anatomy, and embryology, Waldeyer was even more beloved as a teacher. He was also the first person to coin the use of the word “neuron” in 1891 to describe the nervous system as a collection of individual cells instead of the previously thought reticulum, or singular neuronal body that made up the nervous system. This idea, commonly known as “neuron theory,” provided the basis upon which modern neuroscience was built.
In addition to Waldeyer, Alzheimer’s studies the following semester with Professor Alfred von Kolliker in histology, the study of tissues on a cellular level, solidified Alzheimer’s interest in microscopy and the pursuit of physical origins for mental illness. Three years later, Alzheimer would complete his doctoral thesis “On the Earwax Glands” under the mentorship of Professor Kolliker. He focused on a secreted matter of the body, its composition, and origins before turning to the internal: the practice of clinical psychiatry — analyzing patient’s thoughts, perceptions, and motivations.
Dubito, ergo cogito, ergo sum.
I doubt, therefore I think, therefore I am.
— Antoine Léonard Thomas (1765)
Alzheimer passed the Wurzburg medical examination in May of 1888, becoming a professional doctor. Before applying to become an intern at the Frankfurt Asylum for the Insane and Epileptic, he took a position as the personal doctor for a mentally ill woman for five months, solidifying his interest in psychiatry. The Frankfurt asylum, now under the leadership of Emil Sioli, Hoffman’s successor, was in dire need of help. Sioli, who took upon the position at the beginning of November, was the only physician with 254 patients under his care. He viewed Alzheimer’s intern application as a godsend, immediately asking for his position to be approved. And on December 19th, Alzheimer walked past the pavilions and gardens and through the long halls of the castle where he would spend the next 15 years of his life.
Alzheimer was a humble, kind, and conscientious doctor. In the following years, he worked to develop “non-restraining” techniques to treat patients. He was a strong proponent and developer of “bathing treatment” where patients would relax in warm water, rendering the inhumane nature of “tight gloves, indestructible suits, and, above all, isolation… almost completely unnecessary.” In addition to remodeling the asylum to have larger, open rooms, moving the morbid mortuary room from the center of the facility, and implementing rigorous hygiene procedures Alzheimer also focused on the pathology of his patients. Three months after Alzheimer entered the facility, Dr. Franz Nissl, a senior physician and trained psychologist, joined Alzheimer. During his time at the asylum, Nissl discovered a staining technique that highlights the soma — the flat bodies of neurons that contain the cells’ nuclei — in dark blue. Using this novel technology, the two performed many autopsies together on patients over the years and quickly became friends.
Dr. Alzheimer had spent years differentiating various types of brain atrophy in hopes of identifying the physiological underpinnings of various illnesses. In 1895, he had published a piece on arteriosclerotic brain atrophy, brain deterioration as a result of a lack of blood flow, as a subset of general paresis observed in many mentally ill patients. General paresis describes brain shrinkage and damage as a result of severe syphilis infection. Alzheimer took it one step further, describing a specific type of brain atrophy: arteriosclerotic or the hardening of arterial walls. This specific damage on blood vessels in both the brain and kidney was significant enough for Alzheimer to characterize it as a separate disease, differentiating it from some of the general disease descriptions attributed to mental illness at the time. It was with this heightened level of detail that he approached Auguste Deter.
We can never really know if people with Alzheimer’s are aware of their mental decline
Just three months into Auguste’s stay at Frankfurt, Alzheimer was unable to carry out the conversations and questions that he had previously conducted. Auguste’s paranoia, after being admitted to the asylum, became, at times, almost unmanageable. She spent most of her days in a bath and slept in isolation as she would disturb other patients, wander around aimlessly, and shout garbled and unintelligible phrases. She was afraid of her doctors, convinced they were going to sexually harm her and other patients. He wrote in his medical notes:
“Auguste D. continues to be hostile, screams, and lashes out when one wants to examine her. She also screams spontaneously, often for hours, so that she has to be kept in bed. As far as food is concerned, she no longer keeps to the regular mealtimes. A boil has formed on her back.”
One wonders if Auguste was conscious of her mental decline. We can never really know if people with Alzheimer’s are aware of their mental decline, and even if so, whether or not they can process the significance or the implications as we do. Yet, documentation of her conversations with Alzheimer has Auguste at times seemingly lucid of the state of her illness:
“Where are you?”
“At the moment; I have temporarily, as said, I don’t have means. One has to just — I don’t know myself — I don’t know at all — oh, goodness gracious, what is it all?”
(November 29th, 1901)
“Where do you live?”
“Of course, you have already been to our house. Oh, I was only so nervous, please, please.”
“Where do you live?”
“Right! What year is it now?”
“One moment, I’m so nervous. So, how old am I? Fifty-one.”
“What month is it?”
“The sixth — no — so, fifty-one. Yes, doctor, what have I don’t then, just tell me.”
“What is today’s date?”
“Fifty-one — no, I — am a bit nervous. Is that so bad, doctor? I don’t know about anything.”
(Early December, 1901)
Because of his wife’s death in 1901, Alzheimer felt no need to stay in Frankfurt. His friend Nissl had moved to Heidelberg, joining a research team led by Emil Kraepelin, one of the most prominent psychiatrists at the time, and Alzheimer wanted to focus on pathological research endeavors that would not be possible at the asylum. Sioli was hesitant about letting Alzheimer go, describing: “Dr. Alzheimer has shown himself in every respect — in the training and supervision of a large staff as well as in the careful, humane treatment of his patients, for whom he goes to endless trouble, as well as in every aspect of medical knowledge and higher scientific effort — to be an exquisitely talented doctor imbued with the highest love for his profession and of a proven diligence in all his professional activities.”
Alzheimer’s last conversation in June 1902 with Auguste reads:
“Good day, Mrs. D”
“Oh, begone; I — cannot say — that.”
This is the first part of a column that explores illness and the self. Belonging to the field of narrative medicine, here, I want to explore the stories behind diagnoses, the humanity behind scientific discovery, and the interiority of the individual afflicted by disease.
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