The Moral Dilemmas of Dementia

Every marker of progress brings with it new problems; crossing the horizon is crossing into the unknown, which may contain as many perils as promises. Advancements in healthcare are real and have produced a real effect in lowering mortality and increasing longevity. However, as longevity leads to an ageing population, it becomes crucial for us to address the moral question of what our responsibilities to the elderly are – particularly as dementia becomes more widespread.

The numbers vary, but one recent figure from the United States puts the risk of developing dementia at forty-two per cent for people over the age of fifty-five.1 In Australia there are currently close to half a million people diagnosed with dementia. Current projections expect that number to reach over a million by 2065.2 We can personalise these statistics. My grandmother, who passed in 2021, suffered from dementia for almost a decade. My father-in-law was diagnosed with it in 2023. I suspect any reader here will at the very least know someone whose grandparents or parents suffer from it too. 

Alzheimer’s is the most common form of senile dementia and covers what most people understand by the term dementia: a slow decay of a person’s memory and ability, until they forget basic functions such as eating and, eventually, breathing. Any other disease that occurred half as much would be considered a national health crisis, but since we do not have a cure for dementia and it occurs at the end of life, there are barriers to us treating it as we would any other illness. After all, isn’t cognitive decline part of ageing anyway? Don’t we all, eventually, forget? Don’t we all, eventually, get sick?

Dementia presents us, the children of the suffering, with serious and difficult choices about how to care for our loved ones. This is all further complicated by the fact that these loved ones are often the very ones who cared for us, ones we have never had to learn to care for until now. It is no doubt psychologically taxing to see those whom we were dependent on become dependent on us. This crisis asks, fundamentally, what we owe to our elders, and how we want to live in light of any such debt.

These may be questions for bioethicists and moral philosophers, but dare I say Art also offers guidance on these questions. I think encounters with dementia in literature can be instructive because they tell us how to understand this crisis as a genuine crisis, and how we fail and fall short in our dealings with dementia. I want to focus on two authors who stage this for us. The first is Annie Ernaux in A Woman’s Story and I Remain in Darkness. Ernaux’s faithful autofictional reconstructions present to us the moral dilemmas that arise from her mother’s decline. Her attempt to care for her mother, and her mother’s difficulties with her illness provoke these questions. The second is J.M. Coetzee in four of the pieces collected in The Pole and Other Stories. In these, we return to his character of Elizabeth Costello, living alone in Spain, growing older, developing dementia and trying, in her stubborn way, to figure out what she should do. It is not a coincidence that Coetzee filters his exploration of dementia through Costello the moralist. We shall see why.

‘Clearly she could no longer be on her own.’ This is the close of the first paragraph of I Remain in Darkness. This ‘she’ is Ernaux’s mother, and the decision is made after she collapses in the street. When Ernaux visits her mother’s apartment, she finds the fridge is empty: her mother has forgotten to feed herself.

Ernaux initially tries to have her mother live with her, but it proves impossible. In I Remain in Darkness, Ernaux is reflective, saying that she hoped a familiar environment would slow her mother’s decline. In the earlier A Woman’s Story, she is more candid: her mother is irritable, confused, difficult to have in the house. There are nine years between these books. A Woman’s Story was written in 1988, only two years after her mother’s death. Perhaps the experience was rawer, closer to the wound. I Remain in Darkness is calmer, having drawn some distance from her mother’s passing.

The decline of the elderly into dementia and thus into regression presents us with a demand to care – Ernaux is consistent in noting the ways her mother becomes again, through her illness, a child. As with a child, this care is necessary: if it is not provided, some need of the person will not be met. In this sense, we must look after our elderly parent. There are simply things the demented cannot do. What transpires is a reversal of regimes of care, of the parent-child relationship. Yet the reversal is asymmetrical. A child learns to look after itself. A child, mostly, becomes less dependent, not more. In the case of children, daycare, schools, foster programs however flawed, have become part of the larger societal infrastructure. These programs are, in many parts of the world, largely state funded. In contrast, nursing homes, at least in Australia, are exorbitantly expensive, and state-based assistance only kicks in for those on an income of less than approximately thirty-five thousand dollars a year. Ernaux, in the French context, writes of the inequivalence: ‘the situation is reversed, now she is my little girl. I CANNOT be her mother.’ 

This care is demanding. Ernaux keeps her mother with her for two months in 1984, January and most of February. She comes across her mother talking to herself and having ‘no idea where she is’. Her mother soils her undergarments and her bed and throws up her coffee. The care required is not just physical, addressing the excess of bodily fluids, but also quotidian. Ernaux’s mother loses her ability to set a table, or to switch off a room light. All these small things add up, and soon the care requires an attentiveness bordering on hypervigilance; anything could go wrong or be forgotten.

Given the intensity of caring, the decision to move one’s loved one to a nursing home or medical facility appears clear and rational. Yet it also induces feelings of failure on the part of the children and resentment on the part of the cared for. Ernaux’s mother may be losing her faculties, but she is lucid enough to reprimand her daughter for moving her into a home: ‘“Having to end my days here” […] “If it had been Raymond’s mother (she probably means Phillippe, my husband), I’m sure you would have found room for her at home.”’ Ernaux’s mother, however demented, has a point. I, a single individual, may lack both the expertise and the time to provide the care my elderly mother needs, and yet, by placing her in care I may be doing her a wrong. A wrong not just because of the way nursing homes are run – profit over people, leading to awful nurse-to-resident ratios – but because of the problematic ethics of separation and confinement, which have become common practices in the realms of medicine and health.

Medical institutions treat the sick, but in order to do so they gather and confine them. This confinement is a process of separation most clearly seen in our treatment of the clinically insane. This is part of the impetus of Michel Foucault’s Madness and Civilization, which lays bare this separating function and its history. In their Anti-Oedipus, Gilles Deleuze and Félix Guattari (or technically speaking, their translators) use the term ‘segregative’ to highlight all separating functions. As Guattari goes on to write in a separate, solo essay:

It is true that from a strictly rational standpoint there are reasons for this segregative function in modern medicine. It helps prevent contagion and allows for a concentration of caregivers and the equipment and facilities necessary for care.  But it is also the case that this segregative function conflicts with other demands of care, both within and without these institutions. To care for a loved one, I must have access to them, and yet to place them into a medical institution of any kind is to limit my access to them and thus diminish my capacity to care for them. The institution is meant to care for them because I cannot. Yet, however well-intentioned, the institution always produces the same result, casually noted by Ernaux during visits to her mother: ‘the same few visitors return, though not often’. It cannot be avoided: to put someone into a nursing home is to enter them into a regime of care that is also segregative.

This is the dissonance underlying I Remain in Darkness. The book is presented as a series of notes taken during Ernaux’s visits to her mother. Whether this is just a literary device or the actual truth, it allows Ernaux to intersperse anecdotes about nursing home oddities throughout her account of her mother’s failing health. In an entry from December 1984, about six months after her mother has been committed, she writes, ‘[t]here are clocks all over the place – in the hall, the dining room and the bedrooms – but none of them gives the right time: six o’ clock instead of four o’ clock, etc. Do they do it on purpose?’ As I Remain in Darkness progresses, further detailing Ernaux’s mother’s time in the nursing home, the two horns of the dilemma of aged care become apparent. The imperative to care is overwhelming and the nursing home is the obvious step to overcome the shortcomings of individualised care. And yet, the nursing home can be an inhumane place. It is perhaps not surprising that in the film The Exorcist, the first scene of real horror is when Father Karras goes to visit his mother in the hospital in the elderly care ward, where the howls of the confined residents are themselves a version of hell.

Aged care: impossible to do on one’s own but without an actual morally acceptable solution. This same predicament permeates the aforementioned series of short stories by Coetzee. In these stories Elizabeth Costello returns, ageing and squaring up to a future of diminished capacities. When we readers first met Elizabeth Costello, in The Lives of Animals, Coetzee already drew attention to her white hair. By the time Coetzee transformed Costello’s story into her eponymous book, she was given an age: sixty-six, going on sixty-seven.

Age is a great theme of Coetzee’s novels. In Waiting for the Barbarians, the magistrate is old, approaching retirement. In Disgrace, David Lurie is fifty-two. Lurie’s age is not only announced immediately but turned into a joke (he has ‘solved the problem of sex rather well’). While Lurie is not elderly, his age is important as it signals that he is divorced from the world, from understanding the shifts and realities of a changing South Africa and his own place amongst his peers, students and colleagues. And as it turns out, he has not solved the problem of sex at all.

The Costello stories collected in The Pole and Other Stories return to the theme of age, but with a variation. Age is now not a marker of division from the world, but a mark of departing from this world entirely. Throughout these stories, Costello’s children, Helen and John, will attempt to offer her their care. She refuses repeatedly. In the first story, ‘As a Woman Grows Older’, we begin with Costello being obstinate and at odds with the world, classic motifs established in Elizabeth Costello. Costello complains to Helen that she is becoming like other old fogies, walking around alarmed by every attitude and action she doesn’t understand, constantly bemoaning the state of the world. As Costello ages, however, a chance to be folded back into the world of her children emerges. Her daughter suggests arranging her move to France, so she can live nearby. Helen tries to head off objections – ‘we would not be living together. You would be perfectly independent’ – but Costello has another concern. ‘[T]he question for me,’ she retorts, ‘is: why should I impose on my daughter the burden of caring for me?’

We should not be surprised that Coetzee puts into the mouth of Costello a keen awareness of the moral dilemmas of aged care. The related issue of animal rights and welfare animates a great deal of Elizabeth Costello. In one scene, whilst giving a lecture, Costello remarks that:

What is being alluded to here is the aforementioned segregative function. While this function occurs in medicine, the concentration camp is the most ethically egregious symbol of this logic, for the whole purpose of the concentration camp is to separate and concentrate. Here Costello is teasing out a relationship she sees between the Holocaust and the question of animal ethics. It is a question of the segregative function, a logic at work in the very town she is in for her lecture:

The Holocaust, animal slaughter, the elderly dying alone in crowded nursing homes: all awful things happen elsewhere. One can easily argue that these events differ in moral weight, but Costello’s comments are meant to provoke. Are they all not similarly segregative, indicating a wilful desire to forget our lack of care? As Costello’s remarks to her daughter suggest in ‘As a Woman Grows Older’, there is a sense that she has only two choices: to burden her family with caring for her, or be sent away to disappear, somewhere people choose to ignore.

Costello’s dementia diagnosis is revealed later, in a story entitled ‘Hope’, the penultimate one in The Pole and Other Stories. Costello lives now in Spain. On the phone with John, Costello reveals that her doctor has told her that she can no longer live alone: ‘I need someone to be with me, to take care of me. At the very least.’ This ‘at the very least’, Costello clarifies, means being moved to a nursing home, what she euphemistically calls ‘an institution’. She calls her son to tell him her response to this: she plans to kill herself. She is refusing the choices offered to her. Yet this refusal also creates moral predicaments of its own.

Faced with this announcement, John offers his mother, like Helen before him, a chance at family care. Costello can come and stay with John in America. She will not have it: ‘I am not going to inflict myself on you’, she tells John. Costello’s position is baffling to her children in these stories, and is baffling to us readers unless we have in mind some sense of the dilemma of aged care.

In the story ‘The Old Woman and the Cats’, Costello says to John, ‘take care of… Be careful, John. In some circles take care of means dispose of, means put down, means give a humane death.’ The immediate context is a discussion concerning animals, but the context of the stories and the fact Helen has already offered to take care of her mother in her old age suggest that Costello is not just talking about animal welfare. It is obviously not the intention of John or Helen to dispose of their mother, but by drawing attention to the ambiguity of this phrase, Costello is hinting that a similar ambiguity might be at play in how we talk about taking care of the elderly. It is only in the context of the other stories that this becomes clear; as the stories themselves draw together the logic of animal welfare and the dilemmas of elderly care, this offhand remark from Costello takes on a sinister importance.

Any dilemma can, technically, be solved by suicide. No matter how constrained we may be, we are always free to be or not to be, as Jean-Paul Sartre points out in Being and Nothingness. Despite Sartre’s keen awareness of this peculiar existential status of suicide, he does not give it an elevated place in his system. For him it is a poor way to try and think through the fact of freedom and the appearance of unfreedom. So while Costello’s solution to her dilemma comes from a certain degree of philosophical awareness, it lacks a certain depth. Suicide as the expression of freedom or control also requires us to foreclose all future exercises of freedom and terminate all our responsibilities to others.

John is unconvinced by his mother’s reasoning and hears behind her words a plea: ‘Save me! Save me, my son! A plea hidden in a cloud of obfuscation so that the fiction may be preserved that the two of them are rational beings discussing plans for the future.’  Yet, later, John is shown to be the irrational one, asking again and again if there really is no hope, if Costello’s dementia cannot be reversed. Dementia is, of course, irreversible, like death or chronic illness or ageing. It is John who has the last word in these pages which draw the curtain on Coetzee’s most compelling character, telling Costello it is he who knows what she wants: she wants him to be there to hold her hand, to tell her not to end her life even as she does, to say there is always hope. And John, so often intellectually outmanoeuvred by his mother in Elizabeth Costello and in these stories, finally gets the last word, recounting a parable of his dog named (perhaps too aptly) Demeter. Demeter develops cancer and lies in pain but:

Here ends the story of Elizabeth Costello.  Similar to the ending of Disgrace, where all the tension dissipates without meaningful plot resolution there is a great sense of diffusion. We have returned, in some way, to Bev’s dog shelter. John, however, is unlike Lurie, who has finally learned how to surrender things, including the life of a struggling stray. There is also the fact that John is also lying: he could have had Demeter put down, ‘taken care of her’ as it were. There is always a certain didactic instability in the works of Coetzee, although they also always carry an obvious moral valence.  Costello’s solution, her choice, is the refusal both of care and of the segregative nursing home, but it also elides much that is important about our decisions to be with our loved ones, to hold on to them. For she is denying to herself all future experiences and moments with John and Helen, even if she may not ultimately remember those moments.

One can, perhaps, affirm Costello’s view: after all, late-stage dementia results in a loss of self, and such a loss of self is equivalent to dying, so why wait? There are reasons to be suspicious of this logic. Costello’s given reasons for choosing suicide are the avoidance of institutions, but it is not unreasonable to infer that as a writer she cannot bear the thought of losing her mental capacities. Australian philosopher Mathew Abbott makes an interesting remark on this question (though it appears in a very different context), writing that: ‘[s]omeone in the late stages of Alzheimer’s, for instance, can lose his very subjectivity, but not his idiosyncrasy […] he remains (painfully) himself; he may lose his ability to speak, but he retains something of his characteristic manner, the small gestures that make him the singular being he is.’4 In no real sense is the sufferer of dementia dead; they remain in their sheer presence. Abbott’s invocation of the irremovable remainder of one’s self makes the comparison of late-stage dementia to death morally suspect. 

In Simone de Beauvoir’s A Very Easy Death she recounts her mother’s final month dying from cancer. The illness is difficult and painful, and Beauvoir knows early on that the chances of recovery are low. Over the course of four weeks her mother suffers in a hospital bed, sometimes doing better but, overall, declining. Would it have been better if she had perished earlier? Beauvoir is not so sure. The extension of her life seems to have done her mother good: a woman who cherished every day gained thirty more. It did Beauvoir’s sister good: she was brought back to her mother’s side by the illness. It gave both Beauvoir and her sister a chance to redeem themselves from the ‘carelessness, omission and abstention’ they had begun to show towards their mother in more recent years.5 Her mother’s suffering is horrible but not without meaning. Beauvoir understands this when she writes, in the closing lines of the book, that her mother, ‘crippled with arthritis and dying […] asserted the infinite value of each instant’.6 Suicide in the face of illness then does not provide an easy solution to the quandaries of care presented by dementia, for it forces us to ask the above question posed by Beauvoir. Costello does not know exactly when she will lose her faculties; Ernaux does not know at what point her mother will be gone completely. Ernaux’s penultimate visit to her mother, as she tells it in I Remain in Darkness, is on Easter Sunday, 1986. Her mother struggles to eat and to be fed, but she can still talk and as Ernaux gets up to go, her mother has the wherewithal to lean over and kiss her hair. This act overwhelms Ernaux: ‘How can I survive that kiss, such love, my mother, my mother.’

Costello’s choice to end her life can thus be seen as a poor one, as she would be cutting herself off from all future possibilities. Yet what she is trying to avoid, namely institutionalised mistreatment, is not something avoided by simply choosing a better nursing home. There are no good options. Likewise, in I Remain in Darkness, the supporting of Ernaux’s mother at home is not an option, but the nursing home has its own horrors. Costello’s situation underscores the inevitable moral dilemmas that accompany dementia. A dilemma is of course precisely a situation where every option comes at a high cost. The solution often requires rehauling the very situation which produced the dilemma in the first place. We can, of course, make better or worse decisions, comport ourselves with grace or in anguish, but a certain overturning of society’s fundamental attitudes and approaches towards care and dementia are necessary in order to achieve truly satisfactory resolutions. Until we are able to do so, we are stuck trading the dilemma of care for the dilemma of refusal, and our afflicted elders become symbols of a crisis yet to be resolved. Their existence becomes resistance to erasure. In this way they are much like Demeter living not with hope but as hope.