Alzheimer’s: the cross of forgetting

Forgetting Whose We Are: Alzheimer’s Disease and the Love of God David Keck. Abingdon Press, 1996.

I’m neither an Alzheimer’s patient nor a primary caregiver, but the adult daughter of both. From that perspective I’m familiar with the loss, frustration, questions, and weariness this disease leaves in its wake.

For that reason, I put off reading David Keck’s Forgetting Whose We Are: Alzheimer’s Disease and the Love of God. I dreaded being reminded on every page of something that’s hard enough already. Keck says it well: “Alzheimer’s certainly does chasten the human ego.”

Dementia and related conditions such as stroke confront us with “a sustained dying” but one that “defies any hope of dying well.” They reduce life to “a perpetual present,” forcing the caregiver(s) to “forget what the patient forgets” and thus “shelving” relationships.

The book took slogging, then, because of the personal situation I kept reading into it. And, it’s quite academic. But it’s a solid piece of theological remembering and was worth the effort to read.

Memory is foundational to our existence, Keck reminds us. Biblically, it’s at the heart of our relationship with God. All of us are fundamentally prone to “forgetfulness,” and warned of it. Scripture and the Spirit (who brings to remembrance) also reassure us that God’s memory and mercy are inseparable. God is faithful, for God remembers.

Keck calls the church to a vigorous proclamation of the life of the soul. Soul, he says, is “the locus of God’s work in us,” and the patient’s soul “retains the fullness of his life” even when “constrained by a decaying brain.” Alzheimer’s disease simply doesn’t fit with our modern understanding of self as locus of our identity and existence, or with notions of soul as mental functions. With this in mind, Keck also issues a challenge to what he calls current “underbelief” in the resurrection and its implications for our bodiliness.

An “Alzheimer’s hermeneutic,” as presented in Romans 8, acknowledges our “ultimate helplessness before sin and death” but sets our narratives “into the narrative of Christ’s suffering, death, and resurrection.”

Caregiving

The author’s mother has Alzheimer’s. Keck is aware, therefore, of how heavy the burden of caregiving can be. Since we are limited in knowing what Alzheimer’s is like from the inside (especially in its later stages), much of this book’s theological work, in fact, is for caregivers – and their supporting church. “The love which caregivers feel for their patients,” he says honestly, “undergoes great trials.”

Caregivers are called to believe on behalf of patients and to “die well” for them. They are poets, helping both patient and church “to see.” They are historians, tending to that which must not be forgotten.

They struggle at these tasks, of course, and face particular temptations: weariness in well-doing, guilt, and what Keck calls the “Alzheimer’s apocalyptic.” While apocalypticism can be positive in its vision of the future, it can foster impatience, hardening, and the refusal to experience joy.

The church must help, not only practically in caregiving, but by strengthening theological memory and nurturing Christological beauty. “The fortification of memory,” Keck says, “is preparation for each day’s grasp of the Kingdom.”

In our culture

It seems to me that the task Keck describes for the church will only increase in urgency. Signs of our culture’s dilemma with memory are everywhere.

The aging Boomer generation, facing a “demographic time bomb” in relation to dementia-type diseases, anxiously eats more spinach and blueberries, does Sudokus, and practices tasks such as brushing teeth with the weaker hand to exercise the brain. Historians lament the widespread loss of historical knowledge. Scholars of technology, on the other hand, contemplate burgeoning amounts of preserved data, and ask if, for the first time in history, “we need to find ways to forget.”

Books, movies, and television address themes of memory in a variety of ways (though not always accurately). Characters may have Alzheimer’s, as in The Notebook or Away from Her, or amnesia, as in 50 First Dates, The Bourne Identity, or the new TV show, Samantha Who?

Could it be that within the humiliation and suffering of Alzheimer’s, we are given opportunities to see anew the cross of Christ and present it to our culture?

Humanly speaking, the prospect isn’t welcome. However, if we help each other look at dementia’s “ugliness” closely and theologically, as Keck’s book does, we will see the love of God, beautiful and unending.

Dora Dueck is a Winnipeg writer and former associate editor of the MB Herald. she attends Jubilee Mennonite Church.