In November 1901 a woman named Auguste Deter was admitted to the Municipal Asylum for Epileptics and Lunatics in Frankfurt. She was 51 years old. Paranoid delusions about her husband’s fidelity had given way to amnesia and disorientation; she failed to recognise old friends and forgot life’s daily occurrences the moment they were past. Soon she was unable to look after herself entirely. “I have lost myself,” she told her 36-year-old physician. His name was Dr Alois Alzheimer.
Alzheimer was that rare thing at the turn of the 20th century, a doctor with an interest in both psychiatry, the workings of the mind, and histology, the study of cell tissue and structure. When he examined Deter’s brain after her eventual death in 1906, he found it alarmingly atrophied, abnormally light. Then, looking at it under the microscope, he saw two things he had never seen before. First, the buildup of a brain protein named beta-amyloid into what are known as “senile plaques”; second, dense tangles of fibrils within the brain’s cells that had gone rogue, as it were, choking and ultimately destroying the cells themselves. The damage was greatest where the tangles and the plaques coincided. As many as a third of the cells in Deter’s cerebral cortex were destroyed or damaged.
If it seems paradoxical that one of the definitive diseases of old age should have been first identified in someone much younger, Alzheimer himself regarded his discovery as a disease of middle age and entirely distinct from senile dementia. It was a view that held until the 1970s, when it became clear that they were essentially the same phenomenon; the neurologist Robert Katzman showed that Alzheimer’s was one of the leading causes of death in the US, its presence in the deceased elided by a wide range of more immediately catastrophic health events recorded on the death certificate.
Somehow it seems apt for Alzheimer’s to be hiding in plain sight like that. It is after all a disease of deception, its presence masked in the patient by the general cognitive decline that we all experience once we pass the age of 50 or so. This can be compounded by the patient’s own unwillingness or inability to recognise or acknowledge the disease as it encroaches, and by the person’s stubborn, desperate retention of routine and behaviour – even while memory and, arguably, identity crumble around them.
My father died of Alzheimer’s three days after his 90th birthday in May 2016. He had been admitted with sepsis four days earlier, but his renal functions had been failing, resulting in repeated spells in hospital, since the previous autumn. There was one long spell of about a month in the spring from which he never really rallied. All semblance of independent life ended. There were four 15-minute visits from health workers spread across the empty plain of the day, and then soon a nurse staying overnight in case he accidentally pulled his catheter out – and, more generally, to comfort a newfound panic that overwhelmed him when he was alone, particularly at night.
It can’t have been much more than a week into this new restricted life that he stopped coming downstairs, or even getting out of bed. He ate less and less. By this time he was incontinent as well as cathetered and had lost any sense of the indignity of the experience, lost his sense of privacy, of decency, of inhibition. He would have been appalled, had he known. He was, I would have said, a proud man; he wanted to live in his home of 50 years on his own terms. The change was disorienting. A few weeks earlier, in hospital, he had to be physically restrained by two security guards to stop him discharging himself against medical advice. Deprivation of Liberty Safeguards were invoked. He was sedated. Most of that fight seemed to have drained away. It’s tempting to say that he gave up the ghost: it implies a degree of agency and choice on his part, and the dignity that goes with a sense of volition. It’s impossible to know if that is actually true; but it is comforting, in a small way, to think it might be.
The role of loneliness
Memory plays tricks on all of us. Or rather, we conspire with it in a process that psychologists call “coherence”, shaping memories to fit narratives we find more comfortable, or that accommodate our present sense of self better. My recollection is that Dad’s difficulties date to the last couple of years of his life, but going back through the emails between myself and my three siblings to research this piece, I see that we had serious concerns about his memory at least as far back as 2011. Perhaps I want to avoid thinking about ways in which those last years might have been better for him. Perhaps we should have pushed him harder to recognise his predicament. But would the emotional distress, never mind the potential of ruptured familial relationships, have been worth the cost? It is not as if it is a disease with a cure. Perhaps he was already, in some senses, unreachable.
Our mother had died of esophageal cancer early in 2009, and grief, loneliness and depression weighed heavily on my father. I don’t think it was a sorrow he ever had the wherewithal to adapt to, never mind overcome. He was prescribed citalopram, an anti-depressant, but we were never sure how reliably he took it. We were never sure how reliably he took any medication in those years. He bristled at the intrusion whenever we enquired; the irritation, touched with defensiveness, was entirely in character, but I wonder now how much that kind of sensitivity, possibly extending to resentment, was related to the Alzheimer’s. The hippocampus nestles beside the amygdala in the brain, and the amygdala regulates the great primal emotions.
Perhaps it was a function of the disease too, then, that he seemed to be more emotional about Mum’s loss the longer it receded into the past. When we all met on the anniversary of Mum’s death, or on her birthday, on the hillside where we had scattered her ashes, Dad took to throwing himself to the ground and kissing the earth where the ashes had fallen. Hitherto, he had been among the most reserved of people; the only time I ever saw him express intense physical affection for Mum was at her death, when he showered her cold face with kisses and sobbed.
Looking back now, I can see that Dad’s situation was fertile ground for Alzheimer’s to take root in.
Sandeep Jauhar’s new book, My Father’s Brain, is a moving account of his father’s illness and eventual death. Like my own father, Jauhar’s had lost his wife a few years earlier; like Dad, too, he had a successful career in which intellect played a key role. He cites a 2007 study which suggests there is a strong correlation between loneliness and the development of Alzheimer’s; and another, from 2020, which found that the recently widowed decline mentally three times as quickly as those who have not experienced such wrenching, disabling griefs.
I wish I had known about that correlation. But I don’t know how easy it would have been to make use of it. It’s sometimes said that Alzheimer’s destroys the self. Ultimately, perhaps, it does, if the patient lives long enough to reach the final stage where the disease attacks not just memory but motor function, the ability to undertake such fundamental tasks as swallowing. Dad died before he reached that extremity. I think we must be grateful for that. In one moment of clarity in those last weeks, he described the disease to me as a kind of hollowing out; he said he looked inside himself and found a blackness, as if what remained of memory and the self clung vertiginously to the outer limits of his identity. I think it terrified him. Looking back, though, what feels remarkable is not the loss of self, but its persistence.
Memory and the self
The relationship between memory and the self has long been argued over. Jauhar notes the 18th-century philosopher David Hume’s observation in his A Treatise of Human Nature that “Had we no memory, we never should have any notion of causation, nor consequently of that chain of causes and effects, which constitute our self or person.” Late in life the surrealist film maker Luis Buñuel wrote poignantly in his memoir My Last Breath: “You have to begin to lose your memory, if only in bits and pieces, to realise that memory is what makes our lives. Life without memory is no life… Our memory is our coherence, our reason, our feeling, even our action. Without it, we are nothing.” But are we only the sum of our own memories? Does the self only have meaning in terms of the interior life? “The conventional paradigm about what constitutes a person does not give adequate import to the richness of a human being outside of his cognitive capacities,” Jauhar writes. “Human beings exist not only in an inner world but also in a public space. It is that space that continues to give meaning to the lives of people living with severe dementia.”
It’s an idea also explored in another new book on the subject, Dasha Kiper’s Travellers to Unimaginable Lands, a psychologically acute and compelling series of case studies exploring the relationship between the carer and the dementia patient. “The notion that there is a part of ourselves that is entirely separate from others is most likely a fiction,” she writes. There is no “us” that is distinct from “how people see us”. “Neurologically speaking, there is no special place in the brain that is hermetically sealed from the influence of other people. Quite the contrary: the self is porous.”
A related theme in Kiper’s book resonated powerfully with me: the idea that Alzheimer’s is emotionally and mentally disabling for the carer, as well as the patient. “We simply have no cognitive framework that allows for [memory’s] absence in others,” she writes. “Human beings did not evolve to function in isolation, and in fact each person’s cognition is dependent on the cognitive faculties of those around them. So when one person’s memory is impaired, those close to him or her also become disoriented.” That is, Alzheimer’s bends the world to its rhythms and processes. It’s quite totalitarian in this regard. Alternate realities – narratives, perspectives, points of view – are not viable.
Extraordinary intimacies
To accompany a loved one into the horror of Alzheimer’s is to negotiate extraordinary intimacies at the limit of human experience to which you are the only witness. You have to keep privately reminding yourself what is occurring, what has occurred. Your memory of events becomes a kind of private resistance to the disease. But in the public space between you and the patient, Alzheimer’s obliterates you too. Faced, say, with endlessly repeated questions or statements, you can tell the truth and say, “We just talked about that”. But it won’t change the sequence of events. Or you can acquiesce, play the game as it were, and respond to each moment as if it is new to you too. Either way, Alzheimer’s wins. Its reality trumps your reality.
“In the end,” a neurologist tells Jauhar, “all dementias look alike. The whole brain is affected. Patients generally can’t speak.” But the journey to that end is surely unique – or as unique as the person for whom you are caring, as unique as your relationship with them. In the same way as my relationship with my dad was not the same as his with each of my siblings, however much common ground we shared, I am sure my experience of his Alzheimer’s was different, because it was grounded in the deep memory of our prior history. Alzheimer’s strips away almost everything that is individual. But even when language and memory failed Dad the most, there were still the bare, non-verbal, human things of touch and companionship, comfort and care which we gave him, each as we could: a kind of somatic continuity to counterbalance the strobing discontinuous struggle of surviving as each brief moment of existence flashed past unremarked to make way for the next. I don’t know if it mattered to him; it felt very much like it did. What does it matter if he didn’t remember afterwards?
Alzheimer’s, writes David Shenk in his classic study The Forgetting, “is not only a disease, but also a prism through which we can view life in a way not normally available to us… it forces us to experience death in a way it is rarely otherwise experienced… It is more painful than many people can even imagine, but it is also perhaps the most poignant of all reminders of why and how human life is so extraordinary. It is our best lens on the meaning of loss.” We are social animals. We need community, even if that is a community of two people. We need reciprocity, a sense of the shared moment. But reciprocity requires a mutual understanding. What happens then if there is only one person to understand, to remember?
As a historian, as a writer, I think a lot about memory and erasure, memory and loss. Absences in the record. The value of testimony. The sense of my father’s life – all those unshared, unwritten memories flaking away, falling into oblivion in those last months, perhaps years – was almost palpable. But if the self is not limited to the individual memory, if it is in some senses a shared construct, a shared endeavour, then it is important to rescue what can still be rescued, and not to write off the ends of life, to compound one erasure with another.
Towards the end of the 20th century there was a sometimes vituperative debate about the historiography of the Holocaust. Put very crudely, the argument was about whether it is possible even to write history about such a subject: narrative history is inevitably selective, cohering to an argument, and ultimately a kind of falsification, the thinking runs. Critics of this position saw it as an attack on the status of survivor testimony that opened the door to Holocaust revisionism and denial. The Italian historian Carlo Ginzburg’s contribution was an essay titled “Just One Witness”. He begins by citing the extermination of the entire Jewish community in a village in Provence in 1348, in the wake of the Black Death, for which the only evidence now is the written memory of a single survivor. We cannot, as historians, disregard such testimony, he argues, even if there is nothing reciprocal in the record to confirm it. It exists; we must make sense of it.
That essay, or its core sentiment, has been rattling around my head writing this. For all the grinding bewilderment and exhaustion of those months, there is a kind of privilege to care for someone in these straits. A privilege to travel with someone into such a bleak, strange part of human existence. To travel with them, and bring the last of them back with you. Two people, one supporting the other. One community of two. One witness. One love.
This piece is from the New Humanist summer 2023 edition. Subscribe here.
