Dementia and Death

The first version of this paper was composed to satisfy the requirements of The Theology of Death and Martyrdom, a Duke Divinity School course taught by Philip Porter and Stanley Hauerwas in the Fall Semester of 2018.

“Bye, Pop,” I wave on my way out of my grandparents’ condo. Once safely out the door and into the timelessly bland and tastelessly corporate hallway which connects the few rooms where my mother’s parents have resided with the dwellings of hundreds of others gathered to spend their last years in a modicum of luxury — to assemble for bridge, to dine together under the glow of the gauche chandelier dangled above the token, white baby grand piano, to watch vacantly out the window as those a generation below come through on immaculately manicured fairways playing the game they once played — I try to shake off the perennially nagging questions: What is it like to live in the isolation of late dementia coupled with hearing loss? For your wife of seventy years to be so solely the only steady person in your world that when she’s down the hall with friends you feel too lost not to go wander after her? For your three, precious daughters you loved and raised to be fragmentary, unnamed presences? For your newly widowed sister now living right downstairs to be slipping even faster than you did into the same degradation? What is like to be the wife of such a person? For the strong, steady, solemn presence upon whom you could rely to go now to the bathroom for the once thoughtlessly simple task of bathing and emerge an hour later in the same clothes in which he entered? For the death of your beloved spouse to seem no longer a great tragedy but a mercy you await?

I remember my “Pop” being somewhat aloof already when I was in elementary school, removed from us by decades — seven, to be precise — and distance and difficulty hearing, his eardrums finally surrendering from the assault of target practice on the destroyer during the Second World War and a lifetime of operating all manner of small internal combustion engines. By the time I reached middle school, the auditory confusion was sufficiently compounded with forgetfulness that it was clear my Nana and Pop could live alone no longer. By high school I had become a stranger to him. For him to be sufficiently prepared by my Nana that he could greet me by name was a shock for which I was not sufficiently prepared and was reduced to tears. When his family is gathered around him — for Christmas, a wedding, a reunion — he is a quiet, docile presence, sometimes seeming present, but mostly appearing absent. And, from the outside, the absence of dementia is not the absence of Tennyson’s Ulysses: home at last but dreaming of faraway adventures waiting to be had. No, this absence is altogether eerier: as he sits on the couch in the community parlor in which his family is conducting the rituals of Christmas, it seems not that he is somewhere else bur that he is not. This peculiar vacancy has driven me despite my attempts to think and speak like a Christian to tired, secular clichés like “The lights are on, but nobody’s home” and “He’s just a husk of a man.”

What other paradigm is on offer? This “defectological” account is dominant: my Pop and a myriad of others afflicted are generally described in terms of what they cannot do, of what capacities are missing. He no longer remembers names or facts or much of his story, he can’t take care of himself or my Nana, he doesn’t converse much and what little he says is frequently confused, and so on and so forth. This litany of deficits — with the implication that the etiology is neurological deterioration — is the de facto starting place for any further reflection, and this is probably to be expected: the church gave birth to the hospital, so the hospital had to challenge its mother for primacy as it came of age. Thus, the usual order, John Swinton says in his magisterial Dementia: Living in the Memories of God, is that “Theology is brought in to reflect on a context that has already been defined by powerful defectological stories which presume they can know what dementia is without knowing persons with dementia.”[1] That is, you need not know my Pop and his biography — his career in real estate, his love of sailing and golf and history, his tenacity, his indefatigable quest to fix everything around his home himself — to know him now if you know that he is an “advanced dementia patient,” a label under which everything else is rendered extraneous and his essence is a psychiatrically recognized constellation of lacks. The person is refracted through this medical lens, and theological analysis takes as its reference point not the person, but the image of the person produced by the medical lens.

Yet that the priority is given to medical knowledge does not entail that priority ought to be given to medical knowledge. Though usurper after usurper has attempted coup after coup, theology is still the queen of the sciences.[2] It is either timidity or a failure of the imagination which causes the theologian to accept the standard paradigm and attempt only to add a few nominally theological flourishes on the margin, prettying up what is essentially bleak with some sentimentality here, invocation of the divine there. Rather, Swinton rightly takes the task of the Christian theologian to articulate a counter-story to the dominant defectological story which is to tell not the story of decline from personhood into non-personhood but of the redemption of broken creation, and thereby “to retake territory that rightly belongs to the story of God and the practices of the church.”[3] This is the Christian prerogative and obligation because “the world has no reality of its own independent from the revelation of God in Christ.”[4] Dementia must be seen sub specie aeternitas and therefore no longer narrated as zombification and depersonalization but as an affliction which is necessarily incapable of separating my Pop from the love of God, of denying him his truest identity.

Accompanying the competing scientistic and theological stories are corresponding definitions of personhood. That losing memories, autonomy, and language constitutes the negation of personhood implies a very particular notion of personhood, one which has come to prominence in Western, liberal societies but is hardly the sole way by which it may be defined. This individualist account emphasizes self-awareness, self-control, and self-valuation[5]; a person by this metric must be able relate to others but does not have to be meaningfully yoked to any other persons. This person is fully realized, her potential fully actualized, when she is Neonatologist and ethicist John Wyatt observes a close correspondence between the traits most prized by those academics constructing definitions of personhood — rationality, curiosity, self-determination — and their definitions of what is and what is not a person.[6] The argument is developed inductively — my academic colleagues and I are persons; we are rational, curious, and autonomous; ergo, persons are rational, curious, and autonomous, so conversely those beings which are neither rational, curious, nor autonomous are not persons — but is presented in academic papers, books, and talks as though it were deductive. Thus, this account is centered on capacities, predominantly those capacities required to win tenure.

Describing personhood in this way functions primarily for the purposes of exclusion. I know of no one advocating for the termination of Peter Singer on the grounds that he is a nonperson residing outside the realm of moral concern. But Singer’s attempts to exclude the severely disabled, whether from birth or by neurological degeneration in adulthood, from the status of person lead directly, for him as for others, to the rationalization if not moral obligation for euthanasia.[7] The amnesia required not to see the facsimile between this philosophical move and those marshalled to exterminate the occupants of North America prior to colonization, to count slaves of African descent as only three-fifths of a person, and to withhold the franchise from women and the landless is characteristic only of academics in the wake of the Enlightenment.

It is no wonder that Christians can be led to profoundly unchristian conclusions when they attempt to think theologically with the individual-with-capacities model of personhood nor is particularly difficult to recognize some theological missteps as following from thinking of God’s person in these terms as well. To re-narrate a counter-story against these prevailing assumptions is hard work! In part, this challenge arises because the liberal story of autonomous, atomistic selves would very much like to be perceived as no story at all except the story that such a self might choose to tell of itself. But the Christian must remind himself that “The story that says we should have no story except the story we chose when we had no story is a lie.”[8] When a Christian can no longer do this remembrance for himself, those who love him, his brothers and sisters in Christ, must take up the mantle of this remembrance on his behalf.

Pace the individual-with-capacities definition, Swinton constructs a theocentric, relational account of personhood. He argues that humans do not move parabolically from nonpersons as infants to persons as adults back to nonpersons in senility; rather, humans are intrinsically persons in their humanness. This is because humans collectively and individually are personally addressed by a personal God. Swinton readily follows Martin Buber and uses his I-Thou language. Humans are met by God the “Absolute Person” in a “direct relation.”[9] Such an encounter is immediate “experiencing without conceptualizing, of being without knowing”[10] and is constitutive of I-Thou relations. Persons are this intersubjective “way of being.”[11] Any capacity for abstraction, communication, or dissertation is possibly entailed but nonessential.

By being resolutely theocentric, Swinton evades the possibility which plagues anthropocentric versions of relational personhood: what happens when no one is willing or interested in engaging the person in the last throes of Alzheimer’s in the authentic relations whereby person is constituted? If the late-stage dementia patient is abandoned, receiving perhaps the requisite hygienic and medical attention by those paid to look after her but otherwise neglected, there is, on this account, no one telling her story, no one to hold the biography and personality, and the sufferer moves from a Thou to an It (to continue using Buber’s language). Swinton recognizes that it is in fact unlikely that:

contemporary, Western liberal societies have the moral focus, desire, or strength required to create and maintain meaningful personal relationships with people who have significant cognitive and intellectual disabilities. Loving relationships and relational personhood require that people choose to be with people who have dementia. But why would they? In a social context marked by freedom, autonomy, and choice, the chances of anyone actually caring — other than those who feel obliged to care or who are paid to care — are not high.[12]

The excellent[13] Pixar film Coco illustrates this point quite nicely. Set in Mexico on the Día de los Muertos, the film imagines this to be the day when those in the land of the dead are free to travel to the land of the living, provided that their familia has placed a depiction of the loved one on their ofrenda. This act of remembrance is their ticket to see their living relatives and is essential to a happy life among the dead. Should the dead person be omitted from the ofrenda, he might still freely move about in the land of the dead: the death after death only comes when no one left among the living remembers him anymore. The slip out of personhood is similarly possible apart from other humans choosing to continue relating to the afflicted who is no longer capable of relating in the active fashion he once was.

Rather, for Swinton, the first and primary relation in which personhood is created is with God. Thus, the person is born not out of independent capacity and self-creation, but out of the responsively loving dependence upon God first and upon family, church, and society second. This is the first of Swinton’s aspects of humanness most pertinent to the questions raised by dementia. Because “our essential state as human beings is one of radical dependence,”[14] always illusory independence becoming ever more elusive in dementia

in no way diminishes a person’s humanness or moves someone away from personhood. Quite the opposite. The radical dependence and emerging recognition of contingency that people with dementia experience comprise a poignant and revelatory instance of what it means to be a human being, of what it means to be a creature.[15]

Though it is certainly difficult to relinquish the idol of autonomy, the dementia patient witnesses to the world-upside-down mystery of the gospel and can say with Paul, “I will boast all the more gladly of my weaknesses, so that the power of Christ may dwell in me” (2 Cor. 12:9b). In dementia, the sufferer learns the paradoxical blessedness of being a burden, to borrow a phrase from Will Willimon.[16]

The second marker upon which Swinton reflects is embodiment. While it has long been a good idea to remind Western folks after Descartes that their body and soul are far more one than they are two, the mainline Protestant zeitgeist is overly saturated with talk of embodiment and incarnationality. This kind of language is so often presented in such a cloying and sentimental fashion as to make me skeptical of much reliance on embodiment in theological discourse, particularly when accompanied by reference to the Hebrew nephesh as preferable to the Germanic “soul.” I would argue that such a preference reflects not that soul is an inherently inapt term but the utter failure of the church in catechizing orthodox theological anthropology.

Where Swinton redeems his emphasis on the body is his discussion of bodily memory. He notes, “Our bodies cannot be separated from our minds even when our memories and intellectual abilities appear to be abandoning us. Our bodies remember things, and that memory is not without meaning.”[17] Though I am suspicious that the story he tells of a woman with advanced dementia attempting to make her pearls visible is innocently about her showing their beauty[18] — I have read too much Flannery O’Connor not to see this as a simulacrum of a sacrament symbolizing solely social superiority — it is nevertheless indicative of this kind of bodily memory. Our bodies are engraved with our experiences, and liturgical actions like kneeling and receiving the body and blood of our Lord can hold bodily significance long after the mind is able to integrate the action at a reflective level.

The Christian story can sustain the person falling into dementia at every step of the way. Having been loved into being by God, the Christian need not fear that senescence is a foretaste of nonbeing: his persistence is grounded in God, not his own sense of self. His self, his personality, need not be sustained by sheer force of his will because those around him who care for him can tell it for him, and regardless of their faithfulness, he is alive both now and forever in the active memories of God. That those afflicted with dementia (along with all the rest of God’s creatures) are living in the memories of God means that “God is with and for them and that God is acting with and for them in the present as they move towards God’s future.”[19] Neither neurological disorder nor social isolation can dislocate anyone from their loved identity in God. Whereas human memory is fallible, God remembers truly and gives humanity an opportunity to participate in that true memory in the anamnesis of the Eucharist.

The importance of being situated in God’s narrative arc of redemption might be illustrated by way of analogy to martyrdom. To the eyes of the average Roman centurion, Perpetua and Felicity were foolish girls despising the truly valuable things in life like family for a nascent cult of a humiliated founder. Yet to them, their sufferings in the amphitheater are a witness to the goodness of God and the glory of their savior. Their brutal executions are not disgrace as the crown of folly, but an honor, being counted worthy to serve their Lord. For it is not up to them and their families to tell their stories: they are sustained in God and the church forever. Perpetua need not fear the torment of the beast because “then another will be inside me who will suffer for me, just as I shall be suffering for him.”[20] This is what Servais Pinckaers calls the “internal aspect”[21] of martyrdom: God is at work within them witnessing to their spirits in ways that those on the outside can scarcely find intelligible. Where their gruesome deaths would be expected to abase and humiliate them, instead

they marched from the prison to the amphitheater joyfully as though they were going to heaven, with calm faces, trembling, if at all, with joy rather than fear. Perpetua went along with shining countenance and calm step, as the beloved of God, as a wife of Christ, putting down everyone’s stare by her own intense gaze. With them also was Felicitas, glad that she had safely given birth so that now she could fight the beasts, going from one blood bath to another, from the midwife to the gladiator, ready to wash after childbirth in a second baptism.[22]

Stanley Hauerwas has said, “You can kill Christians, but you can’t determine the meaning of their deaths.” Perpetua and Felicity’s story is proof of this: whereas every aspect of their martyrdom had been designed for their abnegation and that of the movement to which they belonged, the counter-story of God’s redemptive work through the martyrs upends the Roman narrative, and the light of the Gospel cast the hollowness of Roman brutality in chiaroscuro relief. Instead of being rendered patients by the calloused violence of the state, the Spirit enabled them to participate in divine apatheia, agents of love, not overcome but overcoming.

Something akin to this spirituality of martyrdom is at work in the spirituality of dementia. Who can say how the spirit of God ministers to the spirits of the afflicted? It is likely the case that “in those who are experiencing dementia, spirituality may take a different form than it had before, but it does not disappear along with their vanishing neurons.”[23] Practices like reading of scripture and recitation may grow difficult and then impossible, but “dementia cannot de-spiritualize people because God is Spirit, and unless God withdraws God’s spirit from us, spirituality remains.”[24] Spirituality is not psychotherapeutic self-actualization: it is that “the Holy Spirit comes to us in the midst…and acts to sustain our spiritual existence quite apart from our ability to articulate that experience.”[25] Being united to God in the Spirit begins and ends in God, not in our effort.

Moreover, martyrdom is not defined principally by what the martyr does but by what is accomplished in and through the martyr by the Lord. Pinckaers writes, “the most fundamental element of Christian martyrdom is the action of Christ in those who suffer for him: that which must be recognized and explained in order to understand and explain their actions.”[26] The martyrs know not the values of autonomy and freedom as self-determination: the story of their lives is determined instead by the story of the Son who gave himself up, of the freedom in perfect obedience. It is fixed in the martyrs not solely in the propositional assent of cogitation but throughout: in mind but also in heart, in hands and feet, in gut. There is a connection here with the Eucharist which Pinckaers draws out as best exemplified in the letters and example of St. Ignatius of Antioch: “Just as Christ truly suffered in his body, so Ignatius suffers in his own body to the point of shedding blood, and it is also the body and blood of Jesus that Christians receive in the Eucharist as fortifying nourishment.”[27] The fleshiness of martyrdom, of the Passion, are of the Eucharist are all inseparable.

Likewise, dementia ought to shred implicitly docetic anthropologies. If my Pop is really his mind and his body is only an accidental substrate — only useful for acquiring calories to feed the insatiable brain sustaining the mind — then when his mental activity is no longer expressed as transparently, what is left must not really be my Pop anymore. If the marriage of Christ’s divinity and humanity is only one of convenience in his person, then when the going gets rough on the cross, the divinity — never really one with the humanity, mind you — can be released, and this passion need not be remembered in the fleshy material of bread and wine. Sed contra, my Pop bears not only a physical resemblance but really is the same person, his identity contained not in his self-expression but in his Lord. Christ’s full humanity given him by the Blessed Virgin Mary — flesh and all — was united fully, personally, to the Logos of the Father. And the bread and wine are really the body and blood of Christ pro nobis, for the forgiveness of my sins, for the redemption of the cosmos.

Still, to be with someone like my Pop is difficult. It is hard to feel immortal (the proper state when you’re twenty-four years old) while sitting with a nonagenarian. I have spent much of my life honing the very capacities which have now left my Pop: sharpening my wit, working to become more articulate, to read better and write better and speak better. These skills in which I am comfortable and which I value in myself and others are useless in his presence. What good is talking about the eschatological implications of ontological nonsubsistence of evil when the only of those words which is real for him is evil as his brain, his skin, and his bones bear witness to the privatio boni? Being with him is humbling as unwelcome thoughts come slithering past my mental guardrails: does this have a genetic component? Will my wife someday have to care for me as my Nana now cares for him? Is there anything I can do to stop my brain from deteriorating?

Thusly stripped of all to which I cling for support, being with my Pop can become instead a crash course in how to partake of the sacrament of the present moment. Not an unpleasant filial obligation but a lesson in how to relinquish my schedule, how to narrow my wandering attention, and how to read the language of the body. Per Swinton, “To be with someone in the moment is to be open to surprise, new possibilities, and the kind of hidden experiences that we earlier suggested were vital to understanding the experiences of dementia.”[28] It’s breaking out of the “tragedy of clock time”[29] and sitting in a different rhythm, a rhythm in which time moves slowly. All of the forces which push me to relate in I-It fashion have to be stilled so that for a moment we can meet in I-Thou. That is, that moment becomes a means of grace. “God is in the moment…is in the meeting, in the moment that God has created, and in the Spirit that brings into life and sustains two creatures as they wordlessly encounter one another.”[30] This presence is “holding, naming, remembering, and companioning,”[31] ministering in the name and the form of the Lord to each other, my Pop to me as much as I to him.

But the need for this kind of rich presence is not limited to relating to those for whom there is not another option available. Far more often than I would like to count I approach those I hold most dear and those to whom I have more accidental ties as objects, relating in the I-It mode. I fail to rise to that sacred intersubjective space, remaining inside instead. It is for lack of this sort of space that a spouse can feel that it’s been a while since talking despite living in the same domicile. To approach others as objects not subjects is more convenient and easier: partaking of the present moment requires letting future concerns remain in the future and leaving behind the clinging past in the past. It cannot coexist with clock time, with places to be and things to do. It usually takes time to build up the trust that allows the other person to meet in this intersubjective space, to risk being present.

When it does though, it is the fount of life. It is into this space that music flows not from technique alone but from the depths of the human spirit. It is when this kind of space is created between preacher and congregation, often by making the sermon a partially dialogical exercise, that the preached word becomes the Living Word, when the Holy Spirit lifts up the sentences of the preacher and makes of them a consecrated offering. In this sacred intersubjective space, a classroom becomes a sanctuary, a hospital bed an altar, an office a confessional booth, a path the road to Emmaus. In this sacred intersubjective space, persons can realize that they are terra animate, formed out of clay to receive the breath of God.[32] It is in witnessing to the possibility of Christ meeting us where all else fails that dementia’s patients can become dementia’s martyrs: the God they serve requires not heady conceptual frameworks, but humble contrite hearts. It is in being a living witness that there is nothing that can be taken away from us that can separate us from the love of God, that somehow, mystery of mysteries, all things work together for good. It is this sacred space of witness and gift that blessings can come from something as terrible as Alzheimer’s Disease. What a good and merciful God who can accomplish such marvelous things.

[1] John Swinton, Dementia: Living in the Memories of God. (Grand Rapids: Eerdmans, 2012), 44.

[2] Thomas Aquinas, Summa Theologica, Part One, Question I, Articles 5.

[3] Swinton, Dementia, 25.

[4] Dietrich Bonhoeffer, Dietrich Bonhoeffer Works. Vol. 6 (Minneapolis: Fortress Press), 58 quoted in Swinton, Dementia, 163.

[5] Swinton, Dementia, 126.

[6] Quoted in Swinton, Dementia, 129.

[7] Swinton, Dementia, 126.

[8] Stanley Hauerwas, in Living Gently in a Violent World: The Prophetic Witness of Weakness, ed. Stanley Hauerwas, Jean Vanier, and John Swinton (Downers Grove, Ill: InterVarsity Press, 2008), 70 quoted in Swinton, Dementia, 164.

[9] Martin Buber, I and Thou, (Edinburgh: T&T Clark, 1958), 136 quoted in Swinton, Dementia, 146.

[10] Swinton, Dementia, 147.

[11] Swinton, Dementia, 155.

[12] Swinton, Dementia, 136.

[13] Coco stands head and shoulders above Pixar’s other work in recent years.

[14] Swinton, Dementia, 162.

[15] Swinton, Dementia, 163.

[16] From a sermon he preached in Duke University Chapel on December 3, 2000.

[17] Swinton, Dementia, 244.

[18] Swinton, Dementia, 247.

[19] Swinton, Dementia, 217.

[20] Martyrdom of Perpetua and Felicitas, trans. Herbert Musurillo (Oxford: Oxford University Press, 1972), 4.

[21] Servais Pinckaers, The Spirituality of Martyrdom … to the Limits of Love, trans. Patrick M. Clark and Annie Hounsokou (Washington, D.C.: Catholic University of America Press, 2016), 55.

[22] Martyrdom of Perpetua and Felicitas, 5.

[23] Swinton, Dementia, 174.

[24] Swinton, Dementia, 173–174.

[25] Swinton, Dementia, 174.

[26] Pinckaers, The Spirituality of Martyrdom, 60.

[27] Pinckaers, The Spirituality of Martyrdom, 75–76.

[28] Swinton, Dementia, 255.

[29] Swinton, Dementia, 232.

[30] Swinton, Dementia, 255.

[31] Swinton, Dementia, 242.

[32] Swinton, Dementia, 162.