If evil is a privation of the good, as held by many in the history of Christian theology, that does not imply it is passive. An all too active force, evil might be akin to an insatiable blackhole, sweeping every last ray of light into its merciless and annihilating current, dragging everything down into a dark, cold abyss. While grace has broken into this age, and the final triumph and new creation of God has been revealed by, and hidden in, the crucified and risen Messiah, nonetheless, we yet live and die under Sin and Death. We inhabit a place at once charged with the grandeur of God and pervaded by anti-God powers, requiring watchfulness and wonder.
Dementia might represent one such instance of privation, where we are pulled under by a disease whose descent ends in death. Caution – even, tenderness – is required before proceeding further. To lament the great suffering caused by dementia, and locate its many losses within a broader account of God’s good creation having been ruined by sin, is by no means to describe persons with dementia as having a less valuable existence than more neurotypical persons. The common practice of describing those who develop significant memory problems as “not really there,” or not being “themselves,” unhelpfully denies that such persons very much so are still here, and indeed continue to be who they are amidst new challenges. Furthermore, if persons with intellectual disabilities such as dementia are just as fully human as you and I, perhaps our notions of human normativity or human value will require significant reconsideration. But proximity to the suffering and sorrow of dementia, and embracing the infinite worth of those suffering under it who bear the image of God, should prompt us to cry out with the psalmists that things are not as they should be.
Born during the Great Depression and growing up through the end of the Dust Bowl, my grandmother Alice lived a life of faithful endurance and courage. One of the first to enroll in a nursing certification school at Northwest Texas Hospital in Amarillo, Texas, she worked the night shift in a psychiatric ward for more than three decades. My grandmother spent many days covering the shades at her house with blackout curtains, hiding away that sun’s rays to sleep at midday, so that at night she could work at the hospital, caring for some of the most vulnerable people in the Texas Panhandle and surrounding areas of New Mexico and Oklahoma.
Many lived in and out of homelessness. Occasionally, some were violent and out of control. All were troubled, in need of advocates and friends, and marginalized in many ways. People suffering from schizophrenia, severe bipolar disorder, drug addictions, suicidal thoughts and actions, and many kinds of intellectual disabilities were cared for by grandmother at every hour of the night and morning.
While I was in high school, she began to have more than typical memory lapses and developed the symptoms of dementia, like her father had before her. At that time her long-term memory was in-tact. But creating new short-term memories proved increasingly difficult or an impossibility for her, so I strove to spend as much time as I could with her in those years. Though I have sweet memories of Christmastime and Thanksgiving and spending the night at my grandmother’s house as a child, some of my most precious memories with her are those afternoons as a teenager when we would bake bread and drink coffee, play dominos, and I would ask her as many questions as I could about times long ago. I could expect to inevitably discuss the same recent matters on every visit, and often discuss them several times over, but with exquisite detail she recounted dust storms as a child, or as a nurse secretly giving Bibles to a few patients over the years, much to the chagrin of her secular colleagues.
For several years her long-term memory held steady without much capacity for short-term memory, raising interesting questions and possibilities about the self and memory. Joyful news was experienced with the full wonder and exuberance of hearing it for the very first time, many times over: an engagement, a new pregnancy, the birth of a great-grandchild, beholding the smiling face of a great-grandchild. Conversely, sad news or frustrations were felt keenly, many times over. But, sadly, that slow decline rapidly progressed over the last year, such that her own family gradually became more and more unknown to her.
Memory and the Self
In many ways we are the sum of the memories accrued across a lifetime, from our personal life experiences to memories cultivated through study, plus our interpersonal ecosystem of shared and social memory. But if we cease to remember, do we cease to exist? Who is the I who gradually, and then suddenly, can no longer remember my own self, or others, or much else? Not a few today are convinced that such an existence is not one worth having. Persons with dementia are not infrequently neglected or abused in decrepit care facilities or among relatives. Consequently, Congress recently passed the “Promoting Alzheimer’s Awareness to Prevent Elder Abuse Act” because, while a tenth of persons over the age of 60 suffer some form of elder abuse, elder abuse afflicts over half of those with dementia, according to Sen. Susan Collins.
Ordinarily out of sight and out mind in our society, many nursing homes and memory care facilities have especially been devastated by the COVID-19 pandemic. Not only has the virus itself wreaked havoc, but it has so taxed care facilities as to cause an extraordinarily disturbing and morally unacceptable spike in severe neglect. This more common and subtle contempt for the weak, and especially the elderly and those with intellectual disabilities, is occasionally made explicit by advocates for the euthanasia of persons who are no longer ripe for the sacral exploitation of productivity that the gods of mammon, convenience, and efficient technique call “quality of life.” Hopefully followers of a crucified Messiah recoil at dehumanization and contempt for the weak.
Consider every memory that we have – from our first to our last breath, moments beautiful and horrifying, in celebration and despondency, in wistful nostalgia and unbearable remorse – then still living after it all vanishes into a foggy mist and a shadow that subdues life itself. How very hard we work to cultivate ourselves and our lives, and how extraordinarily frail, fleeting, and fragile it all is. Who are we, now, and who might we be, then?
Such an exercise might prompt us to further consider that in only a few years’ time our entire happiness or ability to live may entirely depend on the compassion and generosity of those younger than us. Imagine becoming an octogenarian, cultivating a family, enduring brutally difficult years, serving in Sunday School, planting your own pumpkin seeds to grow homemade gourds that you roasted into pumpkin pies and served to your grandson – then suddenly no longer knowing yourself and those around you, or being able to care for yourself. What if I forget who I am and “lose” myself, or become something unrecognizable – perhaps, even, offensive – to my own self, let alone to others? What hope is there at such a point, and is life worth living now if that is our end?
Our Making and Un-Making in the Embrace of God in Christ
There is a move the apostle Paul makes in a few of his epistles that unsettles, even as it enlivens. In his searing epistle to the Galatians, Paul’s smoldering letter takes a shocking turn at a crucial moment in the argument. After contrasting a prior time, “formerly, when you did not know God” (Galatians 4:8), with “now that you have come to know God,” Paul urges his listeners to not revert back to their prior patterns when they didn’t know God. In a rhetorical move that cuts and heals, binding us up with its renewing tenderness, shattering the cosmos with its severity, Paul writes “But now that you have come to know God, or rather to be known by God, how can you turn back again to…?” (Galatians 4:9). Our life in Christ is not merely, or even primarily, about our knowing God, so much as our having come to be known by God in the crucified and risen Lord Jesus.
Paul does something similar in his much more personal epistle to the Philippians, while heralding the joy of union with Christ amidst suffering, imprisonment, and death. In ch. 3 Paul recounts for his listeners the surpassing worth of Christ, a treasure which calls into question all that we otherwise regard as precious or valuable, precisely because the surpassing worth of God is revealed in nothing more scandalous than a crucified Messiah. As such, Paul’s aim is “to know him [Christ] and the power of his resurrection and participate in his sufferings, becoming like him in his death, that by any means possible I may attain the resurrection from the dead” (Philippians 3:10–11). However, Paul then adds, “Not that I have already obtained this or have already been perfected, but I press on to make it my own, because Christ has made me his own” (Philippians 3:12). Paul not only presses on to apprehend the life of God in Christ; Paul has been apprehended by the life of God in Christ.
Hope Amidst Weakness
We are a mystery to ourselves. Our own thoughts and intentions are often fickle and hidden not only from others, but we deceive even ourselves sometimes about what or who it is that has truly won our heart’s loves and longings. Few agonies of the heart are more wrenching than feeling unknown, the unrelenting loneliness of feeling uninteresting, unwanted, or undesired by others.
Even amidst the healthiest and happiest of relationships, the occasional doldrums of nihilism, or a despair of meaninglessness, can haunt us. Unknown to ourselves, can we be truly known by another, or is there any experience or idea or feeling that is fully communicable with another?
Then, at our end, all desperate striving to make a name for ourselves worth remembering by others will return to dust with us. A kind of privation against all memory comes not only for those who develop dementia, but for us all: “for of the wise, as of the fool, there is no enduring remembrance, seeing that in the days to come all will have been long forgotten” (Ecclesiastes 2:16).
But the logic of the incarnation, namely, God’s participation in truly human life in Jesus Christ, and our union with the God-man in his life, sufferings, crucifixion, resurrection, and ascension, marks a new end and a new beginning for us and all of creation. Against the privation of all memory, we are now those remembered by the God who lives and loves in freedom, who is God with us in Jesus Christ. In Christ, God “knows our frame; he remembers that we are dust.” In Christ, we even pray “remember not the sins of my youth, nor my transgressions; according to your steadfast love remember me, for the sake of your goodness, O LORD” (Psa 103:14; 25:7).
Through union with Christ we are more known by God than we are to our own selves. The crushing burden of our striving to make ourselves, or even to know God, is torn away from us in the healing embrace of the crucified one who lives to intercede for us. Few have more beautifully expressed the depths of what it means to not only know, but to be known by, God than St. Augustine in his Confessions, I.5:
Why do you mean so much to me? Help me to find words to explain. Why do I mean so much to you, that you should command me to love you? And if I fail to love you, you are angry and threaten me with great sorrow, as if not to love you were not sorrow enough in itself. Have pity on me and help me, O Lord my God. Tell me why you mean so much to me. Whisper in my heart, I am here to save you. Speak so that I may hear your words. My heart has ears ready to listen to you, Lord. Open them wide and whisper in my heart, I am here to save you. I shall hear your voice and make haste to clasp you to myself. Do not hide your face away from me, for I would gladly meet my death to see it, since not to see it would be death indeed.
Moreover, that we mean so much to God should move us to tangibly remember others, and especially those with intellectual disabilities such as dementia. That God’s saving power and wisdom are most quintessentially revealed and enacted in the folly, weakness, agony, and contempt of a crucified Messiah must continually confront, unsettle, and reform our notions of human worth. As John Swinton writes in Dementia: Living in the Memories of God:
Remembering people with dementia requires a community of attentiveness. To be attentive is to pay close attention to the other. The church is called first of all to become a community that is attentive to God, the Remember and Bearer and Sustainer of our true identities. It is here that the church’s worship finds its focus and goal. But the members of Christ’s body are also called to become attentive to one another, and in particular to those among us who may be considered weak and vulnerable (1 Cor. 12:21-31). A Church that remembers well and is attentive to the needs of people with advanced dementia is a church that is remaining faithful” (226).
As much as we are, and can become, unknown to others and ourselves, through union with the crucified and risen Lord, we are known to the God who knows the depths of us, and inalienably so. Nothing can alienate or displace us from being those remembered by God in Christ – not even dementia. “It is God who justifies,” Paul wrote elsewhere, and “neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord” (Romans 8:34, 38–39).
As a retired board certified Palliative & Hospice Care chaplain,ministering within faith-based medical centers. I, through active listening journeyed with many residents/patients enduring the cross of dementia. I attempted to comfort their family members by telling them, they will be their loved ones “newest best friend” while I regularly assured my residents/patients of their Savior God’s everlasting love and forgiveness of all their sins. Sadly, even with dementia the feeling of sinful guilt tempts them to fear God. I also pointed them to their baptism–they are baptized into Jesus the Christ, thus all their sins were washed away, all of their sins forgotten by their Savior God. Thus we sing: “God’s own child, I gladly say it: I am baptized into Christ!…”