by John Swinton
Eerdmanns, Grand Rapids, Mich. 298 pages
REVIEWED BY WILLIAM F. MAY
John Swinton’s book dares to re-describe the headlong wipeout of dementia theologically. Conventionally, we reckon with Alzheimer’s disease as a terrifying, unopposable disease. The patient’s sense of identity founders with memory loss. Eventually, the afflicted may not recall themselves or recognize others, even those with whom they have exchanged life-time vows. In such cases, a kind of extinction has preceded their biological death.
Stricken family members (or other caregivers) also undergo their own deprivations. They can find themselves supplying care without relief or respite and without the gladdening signals of conscious reception. Outsiders shun contact beyond the minimal tokens of sympathy. Thus the social world of caregivers dwindles. Life seems airless. There are higher rates of depression and suicide for those who give care.
Swinton describes the demented simply as God knows and remembers them. Our identities as humans (and theirs) are “envisioned, created and held by God.” The subtitle, “Living in the Memories of God,” reflects a meditation on God’s omniscience and omnipotence. God’s omniscient remembering is not simply a looking back into a fathomless database upon which God may or may not draw; and God’s omnipotence is not simply a looking forward into a future with a to-do list, as God patches up later what has not yet been done. God’s remembering is also a “making present” of the reality that God eternally is and is in the now, both for those suffering memory loss and their caregivers. This counter-narrative does not romanticize the affliction or eliminate the natural sorrow. However, it opens up a way for caregivers to be present to those who increasingly cannot remember or care for themselves.
So founded, caregivers can begin to live and breathe in the capacious time and space of God’s remembering daily. They can begin to recognize the abiding holiness of the other whose memory loss has not extinguished his or her being before God.
Swinton highlights words and phrases that do not receive much attention in the usual vocabulary of medical ethics — the importance of attentiveness, the rites of visitation, the extended mercies of hospitality, the welcoming of those who have become strangers and the interpretation of caregivers as “God’s proxies.” He reminds us that “caring for the bodily needs of another is a deep expression of love … . ” It may not be “the same as sharing in … the emotional life [of another], planning together for the future, or sharing dreams.” But it is love, nonetheless, in the breathing space that is ours.
While Swinton’s book opens up a rich vein of literature on the protocols of care, it does not offer explicit advice on some familiar quandaries facing caregivers. With the best of intentions, neither the mate of a patient nor other family members may be able to serve directly as “God’s proxy” in the delivery of care. When and how can they engage in calling on others to offer proximate care? What institutional supports need to be more fully in place so that such entrusting to others need not humanly entail abandonment?
This very fine book, by a man whom Stanley Hauerwas has legitimately called a “premier pastoral theologian,” prompts such further questions.
WILLIAM F. MAY is a PC(USA) teaching elder and the author of “The Patient’s Ordeal” and “Testing the National Covenant.” He was also a member of the President’s Council on Bioethics and the Clinton Task Force on Health Care Reform.
