The plot of “Still Alice” instills terror, especially among aging academics. Dr. Alice Howland, a brilliant cognitive psychology professor begins to have memory lapses in lectures and personal life. Slowly but surely she falls victim to Alzheimer’s disease. Julianne Moore has won a well-deserved Oscar for her portrayal of the degenerating mental capacities that rob Alice of her career and personal independence. A dreadful message is conveyed: No matter how much brain power and intellectual achievement you possess, Alzheimer’s disease can take them away.
For 10 years I watched the decline of my lively and lovely stepmother, “Lady.” She ended in completely helpless and passive silence. Despite receiving kindly, expert care in a beautiful facility, the sorrow and pity of her disappearing self could not be ignored. Only feeding and physical care remained with but minimal response. Earlier stages of descent into self-loss can be painful because enough consciousness exists to be able to suffer and protest. Yet some positive emotions also persist through the loving use of simple language, touch, music, art, nature and movement.
The challenge and sufferings for caretakers and families of those degenerating with Alzheimer’s can be grievous. Many heartrending memoirs and dramatic accounts have appeared before Alice’s. By now also, many guides, books, programs and groups are available to help caretakers. The practical decisions to be confronted are legion, but the psychological and spiritual trials are more searing. How can the patient respond to the disease, and spiritually prepare? I have seen less treatment or writing aimed at helping the individual facing progressive and certain mental degeneration. How can a Christian respond in such a life crisis? It is not the same as an imminent death or accepted Christian martyrdom. The intentional self who chooses to love and serve God faces losing the self-consciousness that makes self-offering worship possible. If initially diagnosed with Alzheimer’s disease tomorrow, what spiritual preparation would I seek? Practicing the sacrament of the present moment perhaps.
In the early stages of the descent surely all the nonverbal resources of music, ritual, touch, beauty and nature could come into play in interpersonal communal actions. At Lady’s Alzheimer’s residence one day, the visiting Catholic priest said prayers, gave blessings and distributed Communion to all of us assembled in the library, with no questions asked or responses required. Perhaps this is like when infants in their parents’ arms receive the Eucharist as members of the larger body. But did our beloved residents know what they were doing? More crucially, what earlier preparation did they have for their time in selfless mindlessness?
One early strategy that occurs to me is to recruit a trusted friend, or two, to “see you through,” as Henry James described it. Alice felt this need. Friends, who really approve of and appreciate you, can complement the caretaking of family and professionals. The friends jobs would be to tell you what you don’t know you don’t know about your self —as in, “you shouldn’t be doing that (lecturing, driving, traveling, etc.) anymore. Or, you can still do it, so keep going. The other mission would be to keep social communication going as long as possible at whatever level. The quality of every life depends on the kinds of personal interactions you have, at home or in institutions.
Friends could also help back up your do-not-resuscitate decision for a good peaceful death: No breaking up the chest, no tubes, no ventilators and no aide to suicide, or euthanasia either. As one priest remarked about a saintly priest friend with Alzheimer’s: “We’re all hoping Henry’s cancer kills him first.” Clearly those medieval bestsellers on “The Art of Holy Dying,” are ready for revision.
