10/08/2026 Monday Nones. My 61-year-old father is dying, faster with each passing day, by way of a disease called Lewy Body Dementia. In the popular imagination, dementia tends to be treated as the most horrifying possible (organic) way to go, and the prospect of watching as it slowly claims your loved ones can seem even worse. The situation, as you may be able to surmise, is not a pleasant one. Lewy Body Dementia in particular has the reputation of being one of the most unpleasant forms of dementia (no small feat), including, on top of the usual forms of cognitive decay, the additional characteristics of hallucination, paranoia, Capgras Syndrome (Google it) and an accompanying Parkinsonian physical decline. Over the past several years as the disease has slowly progressed in my father, I have talked to the point of exhaustion with friends, family, and therapists about my own emotional state and the toll his illness has taken on myself and my loved ones. I have done plenty of mental preparation for the inevitable, and I have some idea of what life will look like for those of us left behind in the aftermath. But one thing that I have made a meticulous and concerted effort to avoid thinking about too hard is the steady erosion and final disappearance of self that can precede the last-drawn breath by a period of years. That’s what everyone is really thinking about when they think about the horrors of dementia: the “long goodbye,” the slow disappearance of everything that makes up identity. Fully-formed personhood ceding first to helpless invalidity and finally leaving behind only a mindless husk of autonomic bodily function.

This summer, as I undertook my bi-yearly parental visit, seeing the disease significantly progressed from when I saw him at Christmas, I felt it might be time to start giving some thought to this process that was already underway, to try to make some sense of it, rather than continuing to beat it back with stiff-lipped platitudes — “Well, that’s just how it is.” And as though sensing my mental readiness to begin tackling this topic, fate deposited me gently before a shop window display prominently featuring Julian Barnes’ newly-released book, Departure(s), on the very last day before that bookstore closed for its three-week summer break.

“It is the story of how the body fails us, whether through age, illness, accident, or intent. And it is the story of how experiences fade into anecdotes, and then into memory… It begins at the end of life – but it doesn’t end there. Ultimately, it’s about the only things that ever really mattered: how we find happiness in this life, and when it is time to say goodbye.”

Thus read the book jacket on the English novelist-essayist’s swan song, a final farewell to the written word as he gracefully takes his retirement. As Barnes himself notes in the book, this isn’t his first “last;” on one occasion already, he gave his “last” interview, only to return voluntarily to journalistic interrogation within a matter of months to advertise his latest book. I wouldn’t be surprised if this latest dramatic farewell were to be somewhat unceremoniously undercut by a few more little publications, but for now, it stands as a dignified capstone to a long and distinguished literary career. The book is a long and winding meditation on a range of different subjects pertaining to age, identity, memory, and mortality, but I would like to hone in on one particular recurring topic that crops up across the book: the relationship between memory and identity, and in particular, the question of whether identity is the sum total of memory. He relays accounts of the deaths of various authors by dementia, and asks the question of whether, after memory is gone, some amount of identity does remain. But the way that he approaches all of this rests heavily on the culturally dominant understanding of the long goodbye: one where, long before the heart stops beating and the breath ceases to be drawn, the “person” – in this case a metonym for self, personality, identity – can be gone, leaving only an empty husk.

On some level we all seem to buy into this idea that the inner self can die while the physical form still persists. But as I watch my own father’s sickness unfold in tandem over both the cognitive and the physical terrain, I wonder why we draw such a sharp distinction between the decline of mind and body. The mind decays together with the body: protein deposits called Lewy Bodies are accumulating inside his neural pathways, eroding his mental functionality by the exact same mechanism as is causing his physical decline. His body is slowly but surely closing up shop; his posture is rigid, the grip of his hands weak and wracked with tremor. He is incontinent, and he can no longer stand up from a chair without help. Meanwhile, his cognitive processes are seizing up in much the same way, becoming slower, stiffer, stilted, ineffective. Coming apart at the seams. “You see him slowly slipping away,” says my therapist. “It’s barely him anymore, he’s already gone,” says my mother. In hushed tones when his back is turned, we talk about his personhood (itself ultimately nothing more than a metonym for the cognitive processes that make up memory and personality) as something that can disappear entirely and be supplanted by something else, long before his heart stops beating. And yet the very same people – myself included – talk about his physical decline in terms of, well, just that, a decline, not an erasure. Not until he's dead and in the ground.

When the old get frail, it would be strange to say that their body “isn’t them anymore.” Of course it’s still the same body. Perhaps aged according to its natural progression into a new, frail state, but still the same one. The physical form, in all the decrepitude of its years, is permitted the dignity of keeping its selfhood, even as the brain has its own symbolically confiscated. “His body is still alive but he’s not there anymore” is another common refrain, as though the body were some kind of fleshy domicile, a container inhabited by a separate presence that is the person; once that presence goes out to pasture, the lights remain on, with nobody home.

“They’re still there underneath it all,” says Julian Barnes on the way personality can continue to show through even after memory, supposedly the substance of identity, is gone. Where is “underneath?” What is with this stratification of personhood? What makes the demented and senile any less of an authentic representation of the person than who they were in the prime of their life, or in their childhood before their adult personalities were fully formed? At what point was the “true” person supplanted by the flawed version? I think all of this folk metaphysics rests heavily on the idea – which, incidentally, I do not buy – that the “self” is a coherent, cohesive, intransigent unity, something that comes into the world incomplete or missing, eventually reaches a zenith of maturity and completeness, and then, painstakingly, slowly, comes undone. Why should one of these phases of life be taken as the definitive, authoritative copy, the measure against which all others are to be judged? Don’t people change day to day, year to year, including drastically over periods of turbulence or upheaval in their lives? What makes one day more real than the other? Can we really talk about a single fully-formed adult self that persists across the entirety of adulthood? Conversely, when a child dies, is that the death of a larval, incomplete person? Is the identity memorialised by the bereaved parents an inferior product, a simple precursor with no value or purpose beyond its potential to one day be elaborated into someone complete? Is that death, comparatively, a smaller loss?

When I was young, my father was more of a macho man. Caring, but strict, strong, uptight. As he entered middle age, he began to mellow out, as many do, slowing down, prioritising small pleasures, relaxing more deeply and more often. And now, he has changed again. His capacity for thoughtful, careful contemplation, his cerebral pragmatism and its foil, his disarming sense of humour, have all faded to dark. He has once again entered a new phase of his life. Why should this transition, another natural stage of existence, suddenly be taken as erasure, when all others were neutral evolution, simply an inevitable function of the forward march of time? When I say that "he" is gone, am I mourning the loss of the dynamic macho man of my childhood, or the mellow patriarch of his middle age? The sun rises, and eventually it sets again. The sun-lit day isn’t lost, destroyed, erased, supplanted with a “false” night; the natural cycle is simply coming to its inevitable rounded close. From dust, and to dust. Barnes quotes Henry James on remembering the dead: “The figure contained by the memory is compressed and intensified; accidents have dropped away from it and shades have ceased to count; it stands, sharply, for a few estimated and cherished things, rather than nebulously, for a swarm of possibilities.” This last phrase is, to me, a most succinct summary of the nature of identity and self: a nebulous swarm of possibilities. By saying that "he" is gone, we reduce "him" to an image, a static, lifeless snapshot with clearly delineated edges that contains no possibilities, since its limits are already defined. The slow decline of dementia, rather than standing in opposition to the "integrity" of self, is just another one of the manifold possibilities that make up the shifting sands of a person's selfhood.

In some ways, this kind of thinking feels foreign to me. The idea that the “self” is nothing more than a stand-in for certain underlying brain structures and cognitive processes, in particular, is something very incongruous with the rest of my worldview. I used to be – and in most ways remain – staunchly anti-cognitivist, in the way I understand music theory, gender and sexuality, personality, everything. My friend (now emeritus) Z. and I used to say to each other: how depressing would that be, if it’s all just structures and chemicals and signals? We staunchly refused to live in a world where all the mysteries of art and self and perception and human existence could be mapped out and explained away with an MRI (possibly a position ultimately borne of an anxiety that the roles of musicologist and music theorist, disciplines he and I were studying, respectively, could thus be rendered obsolete by a sufficiently advanced brain scan).

But now as I try to find ways to navigate this difficult period in my family life, the simple, almost mechanical logic of it all brings me some comfort. It seems more concrete, more holistic, a way of narrativising and finding peace with both his mental and his physical decline, and it helps me to internalise that he isn’t truly gone until he’s truly gone. The moths have begun to eat away at the fabric, but it will retain some amount of integrity, if threadbare, until the very last of it is consumed. It also helps me to understand this phase of his life as something natural, simply the next stage in his story, an organic, final winding down rather than a cruel, sudden, premature short-cutting of his existence. The sun rises, and eventually it sets again.

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One morning as he was getting ready to do his daily Lewy Body Dementia exercise video, intended to help slow the progression of the physical symptoms, he couldn't remember how to tie his shoes. I found him panicking in his chair, stuck, immobile, leaning down toward the ground, fingers dangling uselessly around his laces. His mouth, screwed up in concentration, painfully squeezed out involuntary noises of wordless distress. His hands shook and strained. The rigidity made him unable to control his forward lean, and I caught him by his shoulders just as he started to keel head-first off the chair with a feeble wail. Now his whole body was shaking. I gently eased him back up into a seated position and kneeled down on the hardwood in front of him. He seemed like an anxious child. I tied his shoes for him, looping, threading, pulling, repeating from well-practised memory the same steps he taught me when we were both much younger.

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Why do we feel compelled to make this distinction between the self and the not-self? Is it, maybe, a last-ditch effort at the preservation of the dignity of the afflicted? A way of saying that they, in the full bloom of their personhood (or the plenitude of their existence to steal Mr. Barnes' luxurious turn of phrase) were above this sort of thing: the weakness, the vulnerability, brain and bowels wracked with incontinence, unable to feed themselves or get out of bed on their own? In my many morbid conversations with friends and loved ones over the years, the loss of self brought on by the crumbling of the mental faculties is consistently held up as worst case scenario, the most horrifying end we could possibly conceive of. The idea that our inner personhood could dissolve and leave the body we pilot persisting numbly, unthinkingly, as an empty husk, is the most perverse and disturbing thing we can imagine. So maybe that's why we try to make a clean break: he’s not there anymore, he’s gone, checked out, the building is under new management. If he’s not with us anymore, he’s not really suffering this wretched indignity. Or maybe it’s for our own benefit: maybe it provides relatives, friends, and caregivers with some amount of absolution for the various feelings of resentment, disdain, and disgust that can crop up for the sick person as we watch them decline. It’s a lot easier to rationalise praying for the end to come when we tell ourselves that the person we knew is gone, and only a hollow mechanical vessel remains.

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For the first time, Papa didn’t cry saying goodbye.

With advancing age and health’s decline bringing him a growing awareness of his candlestick running short, I saw him become more and more emotional and sentimental with the passing years. With each visit the tears flowed more freely, the emotionality deepened, and the farewell stretched longer and longer. But now, for the first time, even as Mama and I sobbed on each other’s shoulders, harder than ever before, he remained hunched and blank-faced. I hugged his rigid body as tightly as I could without hurting him. I kissed him on the cheek and he ushered me out of the door.

Maybe there’s a downside to my holistic, selfhood-preserving, body decline-analogous understanding of his dementia. My own father’s sudden, total indifference to my departure was a heartbreak for which I was entirely unprepared. “It’s not him, it’s the disease” would be a seductively soothing explanation, a convenient and enticing balm to calm an unexpectedly angry wound.

At 24 years of age, and having lost, all things considered, remarkably few of the people I have cared for over the course of my life, I feel very small and lamentably underqualified standing in contemplation before the topic of mortality. And I begin to question whether that feeling ever goes away. In the furthest reaches of my childhood, I remember having a strong sense that the old people in my life had come to a peaceful understanding with the blank provinces that lie beyond, a wisdom slowly built up and shaped and refined painstakingly over the course of decades of life experience, and that, if I’m lucky and take care not to drink excessively or smoke cigarettes, so too will I one day find this final serenity and enlightenment in the face of the slow-coming march of death.

But 80-year-old Julian Barnes’ tone in Departure(s) is not one of calm wisdom and acceptance. In the gradual decline of his advancing age, his reckoning with mortality seems all the more vulnerable and alone. After a great many years of life experience and the loss of many loved ones, his questions continue to go unanswered. In fact, they seem only to beget more questions. Maybe the right questions. Maybe therein lies death’s understanding, and not in impossible certainties sought beyond the grave. In the end, Barnes stands alone and vulnerable in all his authorial solipsism before his mortality. In a brief digression he lets us know in no uncertain terms that he has never believed in “the myth of the serenity of the elderly.”

In the case of my father, it’s all the more pronounced. Not only alone in facing the approach of death, he’s locked alone in the prison of his sickness, a hallucinatory world of confusion and paranoia no one of us can access. Does he even have the capacity to meaningfully reckon with his mortality anymore? Is that capability a function of higher thought, something advanced and human? Is the contemplation of death the mind thinking beyond itself, a meta-thought precluded by the immediacy and impermanence of animal cognition? Or is it something instinctual, programmed in the deepest parts of our brain, the ones that whirr unthinkingly like so much machinery, electrical signals firing like pistons to keep the lungs pumping, the heart beating, the bodily processes intact? When the time comes, will he know he is dying? Does he know now?

Henry Purcell’s 1691 semi-opera King Arthur contains, in keeping with the lineage of his other operas such as the famous Dido and his adaptation of Shakespeare’s Tempest, a play within a play, a masque acted by spirits, perceived as a ghostly vision by the characters on stage. Within this masque lies one of Purcell’s famous arias, the Cold Genius Song ("What power art thou, who from below"). The Cold Genius, a spiritual personification of Winter, is awoken by Cupidon from his slumber, and shivering with the cold, complains at being stirred, and bemoaning the stiffness of his joints and the shallowness of his breath, asks to be left alone.

See'st thou not how stiff and wondrous old,
Far unfit to bear the bitter cold,
I can scarcely move or draw my breath?
Let me, let me freeze again to death.

On the lips of silver-haired French countertenor Gérard Lesne (you can find it on YouTube), the words of Dryden, animated by the music of Purcell, become an old man’s lonely, plaintive, vulnerable lament, pleading not for deliverance, but simply to be left to the numb, unthinking comfort of sleep. If true serenity in the face of death should prove to be an unrealistic hope for most of us, maybe at least such an acceptance — pain-stricken, nervous, but ultimately resigned to the inevitable — will find us in the end.

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Edit: Several hours after posting

One of my Twitter mutuals who took the time to read this post (something that means a great deal to me) messaged me to tell me that while she appreciated my perspective, she also feels that the loss-of-identity narrative I interrogate here is, at its core, a way of coming to terms with a loss of reciprocity in a relationship that has suddenly also become much more intimate, and in which the roles as they once were may have become reversed or disintegrated. I admire how elegantly she articulated these thoughts. It's a perspective I share and one that I think is important to mention. Fundamentally, we understand other people through the moments we share with them, and so as those interactions change form into something unrecognisable through the drastic upheaval of cognitive decline, it makes sense that we would feel as though the person themself is lost. To be clear, I have no intention of totally categorically rejecting this way of looking at things. It remains useful if for no other reason than the way it has become culturally engrained and legible to us as a rhetorical trope, allowing us to narrativise what's going on when we begin to lose a loved one. I still feel like I'm losing or have already lost my dad, and I'm still going to feel that way to some extent going forward. But the kind of change in perspective I wrote about reminds me that there are many ways of looking at these things and that sometimes, in absence of a clear answer, holding multiple perspectives and interrogating the right preconceptions can help give us a broadened understanding of our situation, and hopefully impart some clarity and some peace.

-A