Tears in God's Bottle

Alzheimer’s disease, thief of time and personality, abducted Ann from the full journey of her life. Each of us Alzheimer’s caregivers has experienced this slow but steady diminishment of a loved one; they leave us prematurely, often in the fullness of life, while we remain by their side.

I had been by Ann’s side most of my life. We met in the ninth grade at Mechanicsburg High School, where we would go each weekday from our outlying Pennsylvania homes. Ann, the oldest of six children, lived with her family on a lovely farm; I was an only child who lived with working parents in the village of Shiremanstown. Ann initiated our first date with an invitation to the Sadie Hawkin’s Day Dance in the school gym. Off we went-me shy Li’l Abner and Ann a feisty Sadie Hawkins.

We married a year after graduating from Pennsylvania colleges thirty miles apart, I from Gettysburg and Ann from Wilson, and nurtured each other through doctoral programs, mine in theological studies and Ann’s in women’s issues and feminist therapy. In the late 1960’s, after birthing three sons, we moved our young family to Singapore for five years. There I taught theology at Trinity Theological College, and Ann confounded and operated a day-care program for adults newly discharged from mental health facilities. Retuning to the United States in 1971, we became leaders in the gender equality movement, helped establish a free school for adolescents, practiced together as psychotherapists, and became great friends.

Ann went on to become a well-known feminist therapist in Denver, the culmination of a professional life built with wit, wisdom, you, and commitment to health and wholeness. Although small in stature, she was seen as expansive in soul-one of the life’s lovers and co-creators.

The diagnosis of Alzheimer’s disease came as a double jolt. Not only did I see the illness threatening Ann’s exquisite well being but also a major part of my own life was about to be ripped away. Soon Ann, lost in space and time, was both gone and still there; was well yet very ill; saw yet had no vision; heard yet had little understanding. I was terrified about being too ill-equipped as a caregiver to cope lovingly with such a hideously debilitating illness.

Alzheimer’s disease was originally described in 1906, by the Swiss physician Alois Alzheimer. He had carefully charted the degeneration of a patient whose profile was uncannily like Ann’s-a bright, engaged woman in her early fifties. The cause of such degeneration, unknown to him, remained unknown at the time of Ann’s illness. Medical science was beginning to progress, however, from simply observing and managing the affliction to discovering and prescribing medications that slowed its advance in some people. I collaborated with medical research and medication trials with a curious combination of hope and despair, but pursuing a variety of medical advances did not help me cope as a caregiver.

Grappling with the fallout left week by week in a wake of this illness was equally ill-fated, for Alzheimer’s savage attacks seemed to threaten the very soul of my loved one. As Charlie, a dear friend, said to me toward the end of Ann’s time at home, "It’s not like cancer of the belly or of the bone, where you have something to fight and someone to fight with; Alzheimer’s is a disease of the soul." For a long time it seemed that Charlie was right.

Behaviorally, cognitively, and spiritually, Alzheimer’s does attack those faculties traditionally associated with the soul: memory, knowledge, and intention. So when the memory, thoughts, and will of our loved ones disappear before our eyes, it is as if their soul were under siege. Moreover, the soul is conceived of as the place where human beings touch the infinite; graced with a sense of past, present, and future, the soul anticipates eternity. Thus when our loved ones’ minds go awry with Alzheimer’s dementia, it seems that the soul is in some way ill. After entertaining such perceptions, I began to appreciate how the soul is so much more than the body housing it, and decided to no longer think of the human soul in the limited terms of disease.

Defying this deadly disease though either research or denial was not helping me remain attentive to the minute-to-minute struggles of caregiving. On the contrary, accumulating information and listening to my internal voice of resistance often distracted me from the task at hand. Then a curious dynamic came to my attention: I noticed that as Ann diminished, I increased. Little by little, I was becoming for her a source of memory, a problem solver, a decision maker, a compass, and clock. And, as in the tradition of the Jewish Sabbath, I was experiencing an enhancement of soul each time the activities of my loved one’s soul were added to my own.

Yes, I realized, resources are available to me as a caregiver. What I needed to learn to trust was not necessarily new scientific information or contemporary interpretations of illness, but rather a very old knowledge-a soul knowledge. Soon afterward I immersed myself in the realm of biblically informed spirituality. Even though formal theology in which I was well-schooled, was not of much help, the wisdom of the Bible, on which that theology was based, opened a door to unexpected spiritual growth. At the time of Ann’s diagnosis I was a deacon in the Episcopal church, and during her illness I was ordained a priest. Although I have since resigned my offices in this church, the daily practice of prayer and scripture reading helped me assuage my fears and become more present and supportive in my round-the-clock ministrations with Ann.

Faith grows in the besieged environment of caregiving. For me, daily Bible readings fostered wondrous growth, all the while easing wrenching situations, putting me in touch with the mystery of creation, and joining my tears with those of others who were conversing with God. I could not understand this horrid disease, but I could begin to use my power of the soul and devote myself to expanding that energy. I could also accept the invitation that had come wrapped in the trappings of Alzheimer’s care-giving-namely, to enter anew the family of God and be made whole once again.

Oddly, our culture mistakes curing for healing, and our religious traditions confuse perfection with wholeness. The measure of human beings, Ann used to say, is not perfection, but fullness and wholeness; perfection is a measure of objects, for which we have a federal Bureau of Standards overseen by the Department of Commerce. "Stop trying to be perfect," she would chide, "and just try being whole." Wholeness, for her, was the behavioral and spiritual measure of a human life lived well.