The mention of Alzheimer’s disease produces a depth of reaction that is difficult for some to understand.  The disease is not a condition that necessarily deserves more caring or grief than other chronic illnesses. But Alzheimer’s does bring the words dreadful, mournful, sinister, and dark to mind.  Most people turn away from the subject, and in moments of insight or interest ask themselves anxiously, “What if my loved one should acquire Alzheimer’s?”  The thought that I could be a victim is unthinkable.

Why do we deny the reality of this disease?  Beyond the losses and caregiving nightmare it produces, the dismal dread and fear come from a place deep inside us.  This place is on the other side of the curtain we close between our day-to-day reality and the awareness of our mortality and that of those we love. Until we can face this issue, both we and our suffering loved ones can spend months – even years—in an anxious, lonely struggle with their descent into darkness.

I first faced this vivid truth when we were in the early years of our mother’s dying with Alzheimer’s disease.  My pastor sent me an article written by Beldon C. Lane titled “Dragons of the Ordinary, The Discomfort of Common Grace” from Christian Century.  When I first read it I ignored its relevance to my experience.  Then, after months of reflection, its message struck a chord in my thinking that changed my outlook on our journey with Mother.

Lane wrote about two diverse tensions in our lives that characterize most of our experience – the dramatic and the ordinary.  He contrasted these as being either at the center of life where there is celebration and action (the dramatic), or on the other hand where monotony and maintenance prevail (the ordinary).  The contrasting modes do not emphasize more or less grief: they do focus on two distinctly different ways of dying and the way we deal with them.

I identified deeply with Lane’s thinking.  We rallied to deal with our father’s sudden death with action and the belief we could make it through because the dying rituals would soon be over.  When death comes quickly, grief is not lessened, but our sense of being in control of all that is left to do is ironically comforting.

In contrast, dealing with a loved one with Alzheimer’s takes us on a different journey.  Lane calls the experience “a teacher and a distant friend offering passage through the wide gray terrain of the mundane.”  We are powerless sentinels, watching the slow, tedious fading away of our loved one.

A teacher?  A friend?  In our culture we thrive on fixing things and moving on.  Alzheimer’s is stubbornly resistant to this idea, so the search must begin for what we can learn and for a friend in the most unlikely places.  Lane describes these places as being “neither exhilaratingly high nor dismally low.”  They are just repetitive and wearying.

How could we find a learning and friendly environment when the patience this would require is a lost commodity in our culture?  How could we face an uncertain future – perhaps years – of moving experientially, with the wisest woman we knew, through periods of monosyllabic dialogue, only body language and disconnected words, then silence and smiles, and finally into a zone where only touch connected us?  From a broad range of interactions to a narrow path connecting her world to ours? How could we bear to surrender initiatives toward our future to the predictable rhythms of joy and grief, feeding and cleaning, hope and acquiescence as the decade took its toll?

Our journey was not easy nor without impatience, weariness, and grief.  But we were able to complete the walk with Mother by eventually committing to these ideas:

1.   Stopping frenetic effort to fix the irreparable;

2.   Accepting the notion that great value, even joy, is inherent in doing ordinary things well – offering a spoonful of food she loved, or applying a balm to a developing bed sore;

3.   Moving, albeit unbidden, into our mother’s space and bonding with her, so that whether or not she knew us as her children, she would welcome us as gentle and caring residents;

4.   And, finally, accepting help in our difficult journey.

Being an authentic part of such a journey has extraordinary value for the willing.  Trumpets will not sound out for this parade.  The company of onlookers grows thinner and is finally missing.  But faithfulness and gentle, enduring grace can enable us to finish well.