Help in the Land of Forgetfulness

Former First Lady Rosalynn Carter writes in her 1995 book, Helping Yourself Help Others: “There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.”

Yet as ordinary as this experience is – there are an estimated 53 million caregivers in the United States alone, at least 12 million of whom tend to the daily needs of a beloved carrying a diagnosis of dementia – little attention has been given to one of the harsher realities of the experience: spiritual weariness.

Sherwin B. Nuland, MD, in How We Die, describes the experience of dementia caregivers as “spiritually exhausting.” At times, that was my experience caring for my wife, Ann. Dementia caregivers are often overwhelmed by the sense that we confront an infinitely demanding circumstance with a finitely constrained resource: ourselves.

But the converse is actually the case. As difficult as it may be, caring for one’s beloved is a finite setting. It has a beginning, a middle, and an end. The beginning is shockingly demanding. At the moment of confirmed diagnosis, “No!” is an understandable initial response on the part of the care partner. The middle is particularly challenging and desperate. The beloved begins to disappear before our eyes. There is no pause button as the long days and nights of diminishment and cognitive decline unwind. And yet there is an end to the journey, the inevitable death of the beloved. Fraught with the complex emotions that arise at this passage, the caregiver has come to the conclusion of the caregiving experience. Mourning, grief, memories, personal recovery follow, but the ceaseless daily, hourly activities have come to an end.

It’s hard to convey the sheer spiritual abyss some caregivers experience on the dementia caregiving journey. Perhaps the Psalmist has stated the reality of it all in the profound question, “Are your wonders known in the darkness, or your saving help in the land of forgetfulness?” (Ps. 88:12).

Hard as it may be to uncover the trailhead, there are wonders and saving help to be found as unbidden gifts along the way. An unexpected place exists where we can rediscover spiritual formation in the midst of the spiritually exhausting routines of caregiving. I have found, quite to my surprise, an uncanny parallel between the language we use to describe dementia from the outside and the language mystics and contemplatives use to describe spiritual formation from their inward experience looking outward.

Christian Barthold, Images of Dementia, ProAlter Magazin, 2018. Used by permission of the artist.

I stumbled on this while attempting to find answers to friends and family members who questioned my attentiveness to Ann’s personal needs while on her journey into and through the land of forgetfulness. Was I not angry with God? Was I sacrificing my own health and wellbeing for the sake of a person who no longer knew who I was? Was I losing my own sense of balance, harmony, and peace while totally immersed in being the compass, the clock, the map for my demented beloved? Slowly I began to recognize that the responses rising up in me were grounded in some accumulated remembering of those spiritual elders I had read over the years of my own scholarship and learning. I had not read them, of course, in the context of my own and Ann’s suffering. I had only acknowledged that many of them – Julian of Norwich, John of the Cross, Meister Eckhart – were reporting out of their own suffering. Rediscovering the resources these pioneers of the spirit could be in caregiving was like a dawning light: a deep dark slowly lifted, a glow of roseate light mounted minute by minute across an hour until the bright, sunstruck day was underway.

I remembered my mother, when close to her death I had stood beside her and asked a stupid question. I was already in the throes of caregiving for Ann when my mother said to me on one of our weekly telephone calls that she had been diagnosed with an inoperable, cancerous brain tumor and had about three months to live. Ann was still capable of travel, and we would fly to be with my parents for a few days at a time. On the last visit, the last time I was to be with my mother, I found that as I wheeled her, disheveled and morose, into the clinic where she was receiving radiology treatments, my tongue was fat, my mouth dry, my breathing shallow and labored. When I had settled her in the waiting room, I knelt beside her wheelchair and asked that stupid question. With a phony smile, I said, “Hey, Mom, how’re ya doin’?”

She immediately sat bolt upright, smoothed her thinning gray hair, straightened her sweater, and looked me in the eye, saying loudly enough that everyone in the space, including the staff behind the registry counter and the medics in the lab rooms, would hear her proclaim, “Son, I am not afraid! I am only going where God has gone before!”

She had instantly identified my fear, and addressed it. An only child, I knew my mother intimately well. She did not “believe” what she was saying about her journey on God’s path. She didn’t need to. She knew it. She was simply making a report from the fire of her life and the tick-tock of time into her death.

There is so much material devoted to how to do things as a caregiver. My mother had reminded me how to be a caregiver. I had already been handed a well-intentioned and very caringly put together list of “101 things to do with an Alzheimer’s patient.” And here I was, wanting to know how to get through the next fifteen minutes without collapsing into despair.

Again, a family member unwittingly came to my aid. At the urging of my adult sons, Ann had eventually been admitted to an Alzheimer’s care facility in a nearby community, where she peacefully spent the remaining months of her life. While there, one bright summer day, my four-year-old granddaughter came with me for a visit with her grandmother. Lisa had been there before, but always with her parents, uncles, and aunt. This was her first time on her own, just with me. At that time, Ann had withdrawn into the silence of the deeply demented; her gaze was always into the middle distance, with no present focus. But as we walked around the duck pond at the facility, Lisa, holding her grandmother’s left hand, leaned across her and said to me, “Grandpa, would you please go away? I want my own time with Granny.” I led them to a bench by the pond and, assured that they were safely situated, quietly retreated some distance from them.

I could translate my beloved’s otherwise aggravating repetitiveness as a spiritual reminder that all we will ever have is here and now, the claim of so many mystics and contemplatives.

This is what I saw: Lisa pranced and danced in front of her Granny, showing off her colorful hair bows and prattling away. She held her Granny’s face in her little hands so that she could look at her directly and boldly. She then crawled onto her Granny’s lap and curled up around her, embracing her gently around her neck. Ann glowed, she smiled, she had a radiance about her I had not seen for over a year.

Later that day, driving Lisa home, I asked her, “When you were by yourself with Granny, what were you saying, what were you doing?” She shot me a look she could only have learned from her Granny, a quizzical how-can-grown-ups-be-so-out-of-it look. “Grandpa,” she said with some exasperation, “I wasn’t doing anything, I wasn’t saying anything, I was just loving her!”

Here’s the thing: I was slowly learning the ways of spiritual gifting and graces, the ways of reframing desperate circumstances into loving ones filled with odd joys and brilliant faith. I began to hear anew the counsel of mystics and contemplatives. Simply put, the signs of dementia were being reshaped within my experience as spiritual formation and nurture.

For example, as my beloved experienced memory loss that disrupted our lives, forgetting what had just been said and asking the same questions over and over again, I could recall the anonymous medieval tract on spiritual formation, The Cloud of Unknowing, and John of the Cross, both of whom counseled that forgetting is a path to union with God. I could translate my beloved’s otherwise aggravating repetitiveness as a spiritual reminder that all we will ever have is here and now, the claim of so many mystics and contemplatives. My beloved’s difficulty in completing daily tasks became an occasion to recall Meister Eckhart and John of the Cross admonishing their readers to forsake all works that distract from what alone accounts for meaning and purpose: union with the Holy.

Nicolas of Cusa, actively immersed in the affairs of church and state in his time, writes, “I behold thee, O Lord my God, in a kind of mental trance. For if sight be not sated with seeing, nor the ear with hearing, then much less is the intellect with understanding.” What I was more likely to have interpreted as “loss” was in fact becoming “gain.” The so very sad list of “last” things I had done with my beloved – shopping for just the right thing for the grandkids, laughing over a wicked sarcasm, making love – could be converted to a joyous list of “firsts” – picking out her wardrobe for the day, shampooing and setting her hair.

The breath of fresh air that faith and contemplative wisdom brought into my dementia caregiving life moved from a soft breeze to a near-constant presence. Despair, a spiritual state, had been brought to joy, a spiritual gift. Holy wonders and saving, graceful help were indeed imbedded within dementia care. I could now see my demented beloved not as trapped in a black hole into which all meaning, purpose, and history were sinking, but as an angel of light who could lead me through this menacing land of forgetfulness into love, joy, and the peace that passes all understanding.