Death is never a single end, but a collection of terminations ordinarily bound so tightly together in time that they coalesce, as single and colourless as light, into a unified experience. Alzheimer’s disease undoes that unity by extending death, by drawing it backwards into life from its final closure. This dying process may take several years to reach its conclusion and, in this time, we can observe death’s interlocking components and follow its immaculate, pitiless logic.
What if I said death was the removal of a person from the flow of time? Then we might see how a death is never just one death, but many. A person stalls in death, and the rest of the world flows past them, leaving them behind. The ability of the living to go on separates us from the dead, and the dying too, who go on so much more slowly than the rest of us. The dying, or those who are aware of it at least, get to watch the world slipping away from them, to feel themselves being left behind as one by one the people they know desert them. Not out of cruelty, not out of ignorance, but out of pure necessity – to live at death’s pace is itself a kind of death, and nothing but the most sincere concern for another can sustain the living through it.
A person who dies suddenly – in an accident, or in their sleep – is lost first to themselves, and then to those who knew them best, the first to be notified. From there the word will spread, and they are lost more or less quickly to everyone who knew them. Their death echoes outward from a single point. The dying are lost over and over again, in the opposite direction. First to the world of acquaintances, colleagues, peers, who may or may not notice that they’re no longer around; then to friends, distant and then close; then to family, distant and then close; and finally to themselves. And each time it is a death, each time it is the removal of a particular person from a particular flow of time. The order of one’s disappearance may vary, but each time the conclusion is the same. The dying collapse inward.
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For an Alzheimer’s patient, the traditional difficulties and indignities of age are accelerated. They may, like anyone else, suffer a minor stroke or develop arthritis. They may no longer be able to drive, or to eat certain foods, or to climb to an upstairs bedroom. Their friends may die, or become otherwise incapacitated, leaving them isolated, bored, or lonely. In time, the slow extinguishing of memory unscrews the connections between brain, body and world. They no longer know the people closest to them. They feel embarrassed by their lapses. They need help dressing and undressing. They retreat.
Lying in bed on the threshold of death, the core instruments of the body – heart, lungs, demented brain – struggle on even as everything surrounding those vital forces ceases to function. The extremities are unconsciously neglected, and the warmth of life leaves them. Cold feet twitch. Eyes close. Fluids accumulate in the throat as the level of oxygen flowing through the body drops. After some time – a day, several days at most – the breathing stops and, a few minutes later, so does the heart. The living cells still left in the brain are smothered, starved, and their innumerable connections lapse, and the possibility of life is dissolved.
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Life lived in the company of someone with Alzheimer’s is life shot through with death, as if life were the shutters on a window, and death the light leaking through. Those nearest the light – friends, carers, family – are models of patience; reduced to passing the time within the walls of a ruin, waiting for the day when, as if by its own power, the light finally breaks through. They prepare for an ending that may be, for them, a new beginning – an ending that makes a mockery of desire, of progress, of clean breaks. Closure is waited upon, but it is not, except in the most desperate moments, hoped for; the end may be the best thing that can happen now, but experience tells us that not so long ago even the most ordinary and unremarkable existence was infinitely better than this.
Watching the end unfold, living with it as you prepare for it, alienation and intimacy exist in an unpredictable counterpoint; love and apathy, fear and joy, pride and regret – each woven into a single pattern. Life and death are no longer distinct territories, and the division we may have imagined between them is revealed as an illusion. Lines we may once have understood as borders separating emotions and mental states as clearly as nations on a map are seen instead as lines of action, of becoming; we pass with them through every conceivable station between sense and its opposite. We become – like the edges of a shadow, or a distant horizon – soft, blurred, and sometimes broken.
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The experience of Alzheimer’s is first and foremost a loss of temporal familiarity. It is the fatal disruption of an internal cohesion which we normally take for granted. Our sense of ourselves as a person in the world is accumulative and narrativised, based on our ability to join the dots between different experiences we have undergone, different people we have known. Our personal history is our account of these actions in time. When we lose our memory, we lose our sense of time. We are forced to live without that most constitutive element of our existence – our sense of duration, our succession. Without time, there can be no plot. As Denise Riley writes, ‘A life of no time can’t be recounted. Your very condition militates against narrative.’
The effect of this is something like a loss of significance. An action or an event, severed from the history that led to it, is void and without consequence. It leads to nothing. ‘The whole notion of directedness has gone,’ Riley says. The event floats without any weight. It doesn’t mean anything, either as an inflection of past events or an indicator of events to follow.
To be informed of an action of our own that we have forgotten is to be forced to take up a position in relation to that action; not ownership, in the usual way of saying I did that, but in something more like moral judgement: I wouldn’t do that, I can’t believe I did that. The subjective experience is drained away, and the brutish objectivity of a fact in isolation is all that remains. Motivation is irrelevant. The Alzheimer’s patient cannot say where they were; steps cannot be retraced. They take on the air of a convict. They have no alibi.
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As soon as we are ill, John Berger says, we fear that our illness is unique. Undefined, illimitable, the newly arrived sickness is a threat to our very being. It ‘shares in our own uniqueness’, he says. This is particularly true of Alzheimer’s, which attacks and undermines our very being – our sense of who we are and what we’re doing in the world. Every case of Alzheimer’s is experienced as completely unique because it is a disease that operates on the bedrock of our uniqueness.
Patients, Berger notes, are typically quite relieved when their illness is named. Whether the name means anything to them is unimportant; it is the name that allows them to have their complaint recognised – they’re not making this up, this is a real thing; this is how it works and this is how other people have dealt with it. Armed with a diagnosis, the patient is protected from the ambiguity of their disease. The disease is with them, but not of them. It is depersonalised.
Alzheimer’s is not so easily cordoned off. Because it is still incurable, because it is so terribly unique, naming the disease does little to strengthen the patient’s position against it. It serves only to confirm their uniqueness, and to make explicit the distinction that from now on will separate them from everyone else. Worse again, their uniqueness is an erasure. Alzheimer’s is not an acquisition, like a typical illness – it is not a cancer, or an infection – but a loss barely visible on the surface of the body, a wound that seems to grow from the inside out. A loss that cannot be repaired, only observed, and that has at its end a total blank nothingness.
The naming of Alzheimer’s disease is not a positive defence against its effects; it is a wall behind which the struggle of the self to be recognised as more than its disease must take place. The frustration and bitterness of this struggle for recognition is unbearable, because the struggle itself is, in some sense, the disease. The pain is rooted in our diminishing sense of ourselves and our place in the world, a sense that we are being erased. ‘All frustration magnifies its own dissimilarity,’ Berger says, ‘and so nourishes itself.’ The Alzheimer’s patient is unique in the erasure of their own uniqueness; a vicious feedback loop of frustration, a great dialectical joke.
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Christmas Day – his last. The family, some cousins included, are gathered in my grandparents’ kitchen around mid-morning, as we have been every other year of my life. This is when the children – and I am a child on that day – give Nana and John Joe their Christmas presents. The gifts themselves are inconsequential; it’s the ceremony that’s important. This year was different because I don’t think we got him anything. There would have been no point; it had been a long time since he’d recognised any of his grandchildren, and he would have immediately forgotten any gift we gave him. He could remember Nana, my father, and usually my father’s sister. His world had shrunk to those three people, and that kitchen, which he left only to sleep.
Nana always makes an oversized fuss about the small gifts she receives. She paws at the wrapping paper, not wanting to tear it. Once she has been cajoled into action and torn open the package, she will hold the soft lining of a new dressing gown against her face, or bend close to savour the aroma of yet another scented candle. She will beam with happiness, and the sincerity of her appreciation only deepens our sense of embarrassment at having chosen such pedestrian presents. It doesn’t matter: she has been brought almost to tears by a jumbo book of wordsearch puzzles. Strangely, when my father and his siblings were young, it was John Joe who would buy their Christmas presents.
When we had finished with the gift-giving that year, we sat around the kitchen chatting. John Joe was quiet in the corner by the fire, smiling sometimes, but mostly unengaged; a little worried and withdrawn, possibly overwhelmed. Someone would occasionally try to tell him what was going on but by then he could barely speak, much less take part in a conversation. If he responded at all, it was usually with one of the stock phrases he would use to deflect questions and gloss over his inability to contribute.
I remember we were about to leave. Everyone was standing up. Clean midwinter light poured through the window at the front of the house; the fire was low in the range. Nana was probably getting anxious about starting to prepare their simple Christmas dinner. We fetched our coats, and began to say our goodbyes. John Joe was holding my mother’s hand, I think, when he asked her who she was.
She told him her name. She said she was married to my father.
God help you, he replied.
I am serious when I say the laughter lasted for a minute solid. I looked at my brothers and my cousins scattered around the kitchen and they were bent double, crying laughing. My father was laughing, as much in disbelief as anything – he was being mocked by his demented 82-year old father. Nana didn’t know where to look. It was an incredible moment of pure comedic instinct, sharper and sweeter for having come from the very depths of his soul. And it was his soul the line displayed – that warm, joking soul, with a little edge in every dig; piercing, mordant, kind, sincere. It was totally unexpected, and it floored us all.
This was the last moment when I thought to myself, Yes, that’s him. It was the last time I recognised him as himself and not his disease.
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A person with dementia will typically become isolated from the existing structures and communities of their lives. They will no longer be able to engage with them. Having lost the capacity to blend in with a crowd, they are set in relief against their traditional environments. To this extent, the disease individualises them, it marks them out. They become, in some sense, more specific; a figure in need of special attention and consideration. They become someone to whom everything must be explained, around whom events must be planned. Their presence, their equanimity, their ability to cope – none of this can be taken for granted any longer. Extra efforts must be made in order for them to follow whatever is happening around them, and in this way they shape what is happening. They may become the most visible and most powerful person in a room, or in one’s thoughts. The world may very well begin to revolve around them.
But dementia also dis-individualises people; it destroys the memories, the gestures, the knots that, in the practice of daily life, constitute their sense of themselves and the senses others have of them. Their ability to access the experiences and actions that distinguish them as individuals is gradually erased. They become a person losing by degrees what others would once have recognised as their personality or their character. They sit in the corner of the room, untethered from the people and the conversations happening around them. They can no longer respond in a way that others recognise as emotionally suitable. The usual process of reciprocation is interrupted, becoming jagged and painful. They may begin to opt out of conversations, choosing wilful disconnection over the increasing likelihood of embarrassment or confusion. The world may very well begin to pass them by.
I guess this is something like a dialectic of dementia. A person with dementia becomes an ever-expanding absence that must be cared for, monitored, attended to; a lengthening silence that must be listened to. They become a person disappearing before eyes more conscious and watchful than ever before. We act as if the effort of observation might slow the fade – as if we were watching the sun go down, or waiting for a kettle to boil. The familiar, distinguishing features of a person in this condition become, for us on the outside, signs that the observation is effective. We recognise a tone of voice, a light in the eyes; we say, That’s him. Even if every day is constructed around the presence of this disappearing person, we celebrate any moment in which we can recognise the person as they were, when we could love them truly without thought of their finitude, without the abscesses that have hollowed out our relationship with them. When they were not set against the sad ongoingness of our lives. When we marked them as special, not different.
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Judith Butler, in Giving An Account of Oneself, writes about the violence of an idea or an ethos that ignores the existing social conditions in which it appears. ‘It insists itself into the present as an anachronism,’ she says. Despite the antipathy or resistance of those who are forced to live with it, this kind of force refuses to disappear, to fade into the past. It makes a violent claim for its continuing universality, for its ongoing collectivity. It denies the realities of the people on whom it acts, and seeks to replace those realities with one of its own making. ‘It not only imposes itself upon the present,’ Butler says, ‘but also seeks to eclipse the present – and this is precisely one of its violent effects.’
The violence of Alzheimer’s is that it substitutes its reality for our own. The experience of the disease is predictable and persistent enough to be transcendent; its violence is a universal violence, which takes no account of the individual suffering under its weight. The particularity of the patient is swallowed up by the collectivity of the diseased, the universality of oblivion. The violence of the disease is not only in how it destroys the patient’s perception of their past, but in how it imposes itself on their present. It seeks to define, to overwhelm.
For Butler, a violent universality is that of which no living appropriation can be made. You can’t do anything with it, make anything of it. One is simply subject to it. It is, she says, a deathly thing. There is no hope of acknowledgement, no reciprocation – it is one-way traffic. A disease like Alzheimer’s, a disease of just such violent universality, is set in stone – unbending, dispassionate – and quickly weighs like one too. Butler could easily have been talking about dementia when she described a ‘suffering imposed from an indifferent outside at the expense of freedom and particularity’. But I guess it only appears that way: dementia isn’t imposed from an indifferent outside, it comes from within.
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Self-formation is like storytelling: it is a process of delimitation. The storyteller takes responsibility for what happens in the story; they concern themselves with the words on the page. We do the same when we think of ourselves. We block off a part of the world – our body, our mind – and say, this is what I’m responsible for, this is the object I’ll work on and refine. ‘This work on the self, this act of delimiting,’ Butler says, ‘takes place within the context of a set of norms that precede and exceed the subject.’
Our single site of responsibility interacts with others, and it develops meaning and consequences outside itself. Really it can never be understood in isolation. The process of accounting for ourselves is shaped by outside forces, even initiated by them. ‘I begin my story of myself only in the face of a “you” who asks me to give an account,’ says Butler.
But an Alzheimer’s patient, almost by definition, loses their self-narrating ability. Their ongoing formation of themselves is impeded by their inability to be recognised, impacted, and changed by other people in the world. In never being transformed by what is outside of them, that which corresponds and inquires, the patient is stopped from growing and becoming positively other than what they were. Their experience is entirely one of decay and stasis, which are two sides of the same time-weathered coin.
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‘The question of ethics,’ Butler writes, ‘emerges precisely at the limits of our schemes of intelligibility, the site where we ask ourselves what it might mean to continue in a dialogue where no common ground can be assumed.’
Lacking a cure, Alzheimer’s can only be mitigated. The primary method is recognition. Beyond physical necessities, the task of the carer is to limit, as best they can, the patient’s spiralling disintegration into unrecognisable uniqueness. This is an ethical demand, and it is not simple to meet. As the usual bonds of recognition and connection are broken – as memories fall away, as activities become impossible, as conversation is reduced to silence – there remains the burden and duty of saying: I see you. Against the creeping tide of the disease, we are asked to find the previously invisible, unacknowledged commonalities, the slivers of life and being which, too faint and unimportant for everyday notice, nonetheless persist after the louder noises of living have faded away. As if, sitting by the fire with a friend in the evening of his life, we should strain to hear the waves on the distant shore – present all along, underneath the busy hum of the everyday, but only now emerging through the murky quiet.
What Judith Butler said: Reason’s limit is the sign of our humanity.