What Remains

An Alzheimer's Chronicle

At our regular lunch date, my friend N told me she has been diagnosed with early Alzheimer’s disease. Oh no, I cried inside, beset by pangs of grief—for N, for her family, and (quite selfishly) for myself. Our rare and precious thirty-year friendship will now be changed.

For decades we have delighted in sharing the latest gossip, but also in chewing over developments in literature (her academic field), and psychology (mine) and our religious differences (she’s Presbyterian and I’m Roman Catholic). We have a lot in common: a “Southern lady” heritage, long marriages, large families, and a zest-filled satisfaction in our late entry to academia by way of the same graduate schools. (Thank you, Sarah Lawrence and City University of New York.)

Our latest luncheon had been delayed by vague “health problems,” which N promised to explain when we got together. I had a sense of foreboding that a recently discovered blood condition might have developed into cancer—the scourge of our social circles. Over the last year, I had noticed small signs that N was beginning to slow down. Still, the news of Alzheimer’s stunned me. I found that I had no ready resources or strategies for survival to offer. My distress—covered over, I hope, by ongoing chatter—was increased by my own anxiety. If summa cum laude minds and virtuous hearts can be stricken, then who is safe? Doing everything right your whole life will not ensure your mind’s safe passage to the end. I was again confronted by this sad reality, which I’ve learned by spending time in an Alzheimer’s facility with my dear demented ninety-five-year-old stepmother. Now with N, the repressed question resurfaced: How could I stand up to this cruel disease?

Coping with the disaster of Alzheimer’s requires a complex array of resources—practical, emotional, and spiritual. And shouldn’t Christianity be able to muster a unique spiritual strategy? The general difficulty, however, is that the resources to be deployed in personal response demand just those powers of memory, will, and reasoning that are slowly crumbling before the enemy’s advance.

Accurate scientific diagnosis has far outstripped medicine’s ability to provide effective treatment for Alzheimer’s. At this point, some delay may be hoped for, but more scientific breakthroughs will be needed to cure or prevent the disease.

The first hurdle for everyone concerned is overcoming denial: No, we are not just absent-minded professors or normally forgetful seniors. Next is coming to terms with the fact that one’s opportunity for planning exists only at the onset of the disease, before the descent into confusion. Those diagnosed with Alzheimer’s have to get their affairs in order quickly, ideally with the help of a loving family and loyal advisers. They have to arrange their wills, as well as their residential and caretaking plans, complete with end-of-life directives. Though middle-class folk may not have to undergo the inheritance squabbles of Mrs. Astor’s family, they do have to make sure whatever money or insurance they possess is well organized.

Supportive emotional care and stimulation are the greatest weapons against an isolating disease. Friends and family can rally round and provide help to both caretakers and victim. Whenever it is still possible, favorite pastimes and visits with family and friends should be arranged. As a favorite cousin in Alabama jokes, “You all hurry up and get down here for a visit while I still remember who you are.” Soon enough, old friends will have to change their mode of communication.

Fortunately, in some cases the failing of abstract cognitive capacities does not completely impair other nonconscious dimensions of personhood. My stepmother’s severe dementia is mitigated by her sweet temperament, her stoicism, and her deeply engrained gracious Southern manners. She remains a gentle woman who wins the affection of her caretakers. Other truculent patients do not: they cannot remain their socialized selves as their illness and discomfort make them aggressive, stubborn, or hostile.

I do not think any case of dementia or mental illness can be less than dreadful. The distortions and disintegration of personality can end only in death. From a purely secular perspective, no hope exists. Can Christianity offer any solace for a believer facing this desolation?

While still self-aware, a Christian can pray for the courage to appropriate the hope that is given through faith. At a minimum, I can be grateful that God has called me into life and endowed me with rational self-consciousness and intense emotions—even though these gifts make my losses more grievous. No matter what, I do not envy the animals or the rock that never cries.

As a human being, I am created in God’s image and can never be separated from the love of Christ, even by Alzheimer’s. Pride resists, but our faith affirms that all life is a gift and has dignity, no matter how deformed or vulnerable. Receiving love and care unawares is also a calling, as babies demonstrate. I can aspire to receive love, and perhaps give love, to the bitter, bitter end. Love among the ruins is still love.

Finally, Christians possess the belief that a future light exists beyond all present darkness. In faith I can also hope that my sufferings (and joys) are taken up into Christ’s work of birthing the renewed creation that is groaning toward fulfillment. In traditional theological language, this is described as “offering up” one’s sufferings—in, with, and through Christ. To my mind, our present awareness of evolutionary processes makes faith’s hope in future transformations easier to understand.

But is our unique individuality also saved in the movement into God’s future? Recently I came upon some pertinent words written by the Christian martyr Dietrich Bonhoeffer. Sentenced to be executed by the Nazi regime, Bonhoeffer suffered through his miserable captivity with the knowledge that he would soon be forever cut off from his friends, his fiancée, his intellectual work, and his pastoral ministry. Would he be fully erased by the oppressive forces of evil?

In the midst of his ordeal, Bonhoeffer wrote to a friend that he believed “nothing that is past is lost, that God gathers up again with us our past, which belongs to us.” If and when all memory fails, can we not hope to have our life and self restored in God? In Christ who is the Alpha and the Omega, the beginning and the end, we find our Anchor.


Related: Sidney Callahan, My Mother's Keeper: Life in the Alzheimer's Ward

Published in the 2009-07-17 issue: 

Sidney Callahan is a psychologist and the author of Created for Joy: A Christian View of Suffering.

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