Through the Valley of the Shadow of Death: Shepherding Souls Through the Dark Night of Alzheimer’s and Related Cognitive Disorders

“Why is this happening to me?” I sat next to Mat. Joan as she stared at me and repeated her question: “Why is this happening to me?” Across the room, Joan’s husband sat staring in a chair, aware of our presence but confused as to its meaning. Mat. Joan and Fr. Jack had served faithfully for many years in a parish. Now, in the later stages of Alzheimer’s disease, Fr. Jack hobbled about, mumbling, and being led by his daughter—like a child—back to the chair he had left unknowingly. Mat. Joan looked at him with terror and whispered to me, “I don’t want to be like him. I’ve always been a good person. Why is this happening to me?”

Mat. Joan was in the first stages of Alzheimer’s, still able to observe its effects and to share the fear and frustration she felt as her ability to remember, to think, and to communicate slipped away from her. I had just given Mat. Joan communion for the sick and I was quietly cleaning and putting away the items of the little kit. I was at a loss as to how to respond. How to comfort someone who is faced with such a shadow of death? How to communicate to someone hope and courage when the faculty to receive such words is confused, and quickly deteriorating? How to shepherd someone through the dark night of Alzheimer’s and related cognitive disorders?

The Alzheimer’s Association reported this year that, “an estimated 5.4 million Americans of all ages have Alzheimer’s disease . . . One in nine people age 65 and older has Alzheimer’s disease. About one-third of people age 85 and older have Alzheimer’s disease.” Alzheimer’s disease typically progresses slowly in three general stages — mild (early-stage), moderate (middle-stage), and severe (late-stage). The disease is not known to be preventable and is always fatal. On average, a person 65-years or older will live with the terrible effects of Alzheimer’s from between 4 to 8 years. 40% of this time is typically spent at the severe stage. Therefore, all of us can expect to encounter this disease, personally, within our families, and certainly within our parish flock. How are we to shepherd these people? How would we face Alzheimer’s were we to be diagnosed with the disease?

Just such a thing happened to a high profile Presbyterian minister in the late 1980’s. Robert Davis was pastor of the largest church in Miami, Florida when things started to go terribly wrong. He started forgetting appointments, experiencing confusion doing simple math, and getting lost is familiar places. The doctors conducted a series of tests and were finally forced to tell Pastor Davis that he had early stage Alzheimer’s. He was fifty-three! In Davis’ book, My Journey into Alzheimer’s Disease, written with the assistance of his wife, Pastor Davis provides a unique insight into the inner world of someone undergoing the destructive process of the disease. Davis vividly portrays the spiritual darkness that slowly overtook his mind as the disease progressed: “I am alone in the blackness. Suddenly, ridiculous, absurd fears creep into my mind. I know they are ridiculous and unreal, but they still come . . . Neither prayer, nor Bible reading, nor meditation, nor assurances from friends, nor Christian radio, television, or tape programs bring any comfort in such a case . . . When I pray, I often pray in silent blackness of spirit . . . In my emotional weakness, I lose the power to hold on or reach up to God the way I formerly could. The secret gentle whisperings of the voice of the Holy Spirit are stilled, or what is worse—distorted” (Davis, 1989).

Besides this feeling of spiritual darkness, Davis relates many other difficulties he encountered within months of his diagnosis: Even simple conversations were often overwhelming. His brain tried to respond but couldn’t find the right words, and already the conversation had moved and he felt isolated and confused. Social encounters, such as a trip to the store or a church service, would quickly result in a mental overload. Davis writes, “I find myself becoming more and more panic-stricken, and quite often I will leave the church service, confused and completely drenched in sweat” (Davis, 1989). Disruptions in his routine were often catastrophic. Unfinished tasks preyed on his mind until completed, unexpected situations or questions could throw him into a complete mental breakdown. Davis records that sometimes, after a particularly severe disruption or mental strain, he would sit in a darkened room for days until he regained some level of mental stability. Crowds, loud noises, flashing lights, unfamiliar faces or places were extremely exhausting and required immediate withdrawal and a long recuperation period.

Davis, throughout his book, records his increasing inability to communicate coherently or to follow any logical development. He writes, “I can get the first point of [a] sermon and then I am lost. The rest of it sends my mind whirling in a jumble of twisted unconnected ideas” (Davis, 1989). He recalls, with regret, how clergymen would visit a certain elderly Christian lady suffering from dementia, preaching at her by the hour, trying to restore her to a sense of faith. She would just sit in a corner and weep. Is not the approach of these well-meaning but naïve clergy—in their desperate attempt to reason back a person suffering from dementia—symptomatic of our broader culture that relies so heavily on the analysis of verbal communication and thought processes?

Eileen Shamy, in her study A Guide to the Spiritual Dimension of Care for People with Alzheimer’s Disease, observes: “Modern Western people value cognitive development and ability enormously, so it is no small wonder that Alzheimer’s disease, and other neurological disorders . . . are so greatly feared. Human beings want to believe that the slippery nature of much of our living could be controlled if only we were able to think about it enough” (Shamy, 2003).

For pastors and caregivers, Alzheimer’s can appear as an impenetrable cloud, rendering useless their ministries that rely so heavily upon cognitive understanding and response. Comforting words only confuse, appeals to memories are unpredictable, coherent verbal feedback is quite improbable. The minister simply can’t think his way through this mental fog; the temptation to equate the loss of cognitive function with a loss of personhood is strong.

Contrary to Descartes maxim “I think, therefore I am,” we are not our mind. In Orthodox anthropology, our mind is simply a psychosomatic component of our personhood, but not its entirety. The heart is the center of our being, the mind is simply an apparatus for processing information. The heart is not simply our soul, it is that mysterious place where we meet God and where we contain the potential for embracing all things. The heart—and by extension: the person—cannot be defined, only described and cannot be equated with “consciousness.” The person lives, despite the effects of Adam’s fall that brought corruption to its bodily existence— including the mind. Therefore, although the person suffering from Alzheimer’s and other related cognitive dysfunctions cannot display the typical signs of “consciousness” they still continue being a person. There still lies within the person much that is alive and much to which ministry can still be directed.

Shamy repeatedly defends the continued integrity of the person suffering from cognitive disorders and provides a wealth of ideas by which ministry can still be effective. She emphasizes the need for a reorientation from ministry focused on the communication of information to a ministry focused on relationship building. Shamy relates one powerful example: “I first met Jim when he was in his late seventies and resident in a nursing home. . . . He was a professional man who had been highly respected in the city and his church community. When I first started visiting him he was silent. He had not spoken for many months. Sometimes when I spoke to him he would smile sadly but that was all. His family had almost given up visiting. It all seemed to be so unrewarding. . . .”

“One day, on my way to the nursing home, I visited a parishioner who, as we walked out to my car, picked for me from her garden a little bunch of lily-of-the-valley. . . When I arrived at the nursing home . . . I picked up the flowers and took them with me. I held them close to Jim’s face and said, ‘Look, what I’ve brought you. Smell them.’ And he did. He opened his mouth and the language poured out like water from a broken dam. He told me of the garden he remembered as a boy, of the layout of the garden, the names of the flowers and how much he loved them all. . . Before my eyes in a few moments he became a different man. He sat up straight. His face was animated. He was alive and enjoying himself” (Shamy, 2003).

This example—and many others that Shamy provides in her study—demonstrates that something, rather someone: a person, still lives and breathes beneath the opaque surface created by their disease. Pastor Davis’s personal account reveals that exterior signs of confusion or mental shock are not indicative of spiritual paralysis but instead an intense spiritual struggle with darkness and despair. This is not the time for pastors to quietly sigh that “they’ve done everything they can” and silently walk away. The person suffering from Alzheimer’s is still very spiritually alive and needs a true shepherd now, more than ever.

A recent interview with Reverend Dennis Hill, a long-time chaplain at a large state hospital for the mentally retarded and developmentally disabled (MRDD), confirms the spiritual vivacity of persons suffering from severe mental disorders. Hill recalled one case in which a young man had been in a coma for over a year after a severe accident (Hill, 2016). Others would visit this person and coldly call the case hopeless. Hill continued to minister to this apparent “vegetable,” though he received no indication that his ministry had any effect. After more than a year had passed, the young man suddenly came out of the coma and warmly expressed his gratitude for those who had come to him with comfort. He could remember much of what had been said around him, both the words of comfort and the words of indifference. Many other times during his ministry, Hill related, individuals with no sign of cognitive awareness would suddenly start singing an old Christian hymn or would smile when he prayed with them. There was one particular individual at the hospital that loved “Amazing Grace” and would always be beaming with joy while he sang along, although otherwise he suffered from severe mental and physical impairment.

Shamy, in her study, advocates for the effectiveness of familiar religious traditions in ministry to those suffering from Alzheimer’s and related cognitive disorders. Old hymns, clerical garb, liturgical actions, and the like can all form memory bridges, recalling the Alzheimer’s patient from their spiritual black hole and into vibrant memories of their past. Shamy further comments that the routine of liturgically orientated traditions—as opposed to the spontaneity of other traditions—are a tremendous help to someone with Alzheimer’s.

For several years, I had the opportunity of attending the Liturgy served by Fr. Ambrose (Young) at a small monastery in north-central Ohio. Fr. Ambrose had been diagnosed with Alzheimer’s disease, yet he continued to serve through those years with beauty and grace, rarely needing to refer to his book and always remembering the visitor’s names who attended the Liturgy. Afterward, we would join him for tea and cookies and enjoy his talks about various events in the life of the Church and his travels to the Holy Land. He would often get mentally fatigued and have to lay down to rest. Sometimes, he would not be able to serve the Liturgy, but these occasions were seldom. The routine of the Liturgy and his simple life seemed to sustain him and it was difficult, at times, to really believe that he had Alzheimer’s at all. But then again, he had served the Liturgy so much throughout his life, that, although perhaps his memory failed him in other things, still his memory of the Liturgy ran so deep that it is seemed as though it would be the last of his mind to finally succumb to the disease and this brought him great joy.

Sadly, the example of Fr. Ambrose is a rare exception to the millions that Alzheimer’s has left vacantly staring in a corner, madly screaming through the halls of their nursing home, or like the Orthodox woman I visited over the summer, who refused holy communion, assuring us that she would be going home as soon as her husband recovered from surgery; but who died shortly thereafter of Alzheimer’s at age 73. A majority of caregivers and ministers can only view these sad cases with bewilderment, doing their best to provide for their physical needs and using techniques, such as those mentioned by Shamy, to trigger calming memories. Nevertheless, these techniques can only blindly try to bring some form of cognition and communication to the surface. What lies below, in the interior depths of the person suffering from Alzheimer’s—a peek into which we gain from Davis’ sobering testimony—is entirely hidden in darkness.

But the Orthodox pastor penetrates this darkness and speaks to the person on an entirely different level. The pastoral shepherd bypasses the labored prying of verbal analysis—a bridge all but destroyed by Alzheimer’s—and enters the heart of the person. Elder Sophrony speaks of this interior vision when he writes, “In praying for people one’s heart often senses their spiritual or emotional state. Because of this the spiritual father can experience their psychological state—contentment and happiness . . . terror of despair, and so on” (Sophrony, 1996). He adds, “A confessor must sense the inner rhythm of the interior world of each and every man that turns to him” (ibid.). This interior vision is granted to the shepherd primarily through prayer, which is the shepherd’s work, par excellence. St. John Climacus, in his work On the Shepherd, writes, “A shepherd is pre-eminently he that is able to seek out and set aright his lost, rational sheep by means of guilelessness, zeal, and prayer” (Climacus, 6th century). The shepherd does not rely upon techniques he has learned or books he has read. His task is to listen for the voice of God in his heart and to speak directly to the heart of those to whom he ministers. Father Arseny insists, “To reason or to trust in his own judgment is detrimental to the spiritual father; it is not permissible. He has to trust only the will of God which he can find in prayer and only in prayer” (Arseny, 2004).

A testimony of this interior work of the shepherd is given in the recent publication, The Gurus, the Young Man, and Elder Paisios, in which the author recounts his first meeting with the Elder:

“He was good and kind to me that within a few minutes our souls were quite united . . . at one point he asked me if he had permission to help me spiritually. ‘Can I take a walk around inside you?’ he asked. I trusted him so much that I said yes right away. . . . Then, with great gentleness and courtesy, he stepped inside my soul. I felt a luminous and healing presence being united to my soul and illuminating it with a gladsome light.”(Farasiotis, 2008).

The spiritual shepherd has the unique opportunity—even responsibility—to bring this interior comfort that dementia cannot steal. Through prayer, the shepherd brings God’s illuminating presence to those travelling through the dark night of Alzheimer’s. Without this work, the efforts of pastoral ministry are misguided and unfruitful. Arch. Zacharias comments, “Without continual and intensive heartfelt prayer, which seeks out a word from God and His divine blessing, this spiritual service is vain. It becomes transformed in a ‘half-blind’ worldly activity” (Zacharias, 2008).

How are we to communicate to those suffering from Alzheimer’s and related cognitive disorders hope and courage when the faculty to receive our words is ever receding? We are not such giants of the faith as Elder Paisios, Elder Sophrony, and Father Arseny. We do our best and leave the rest to God. We try, in our own measure, to imitate the model of the shepherd given to us by our Orthodox tradition. When we stand beside the bed of one of our dearly beloved parishioners who is quickly fading into the mental oblivion of Alzheimer’s instead of vainly trying to hold the tangled fragments of a conversation or to whisper attempted words of consolation, we should rather look at them steadily in the eyes as a person, bring our mind into our heart and ask God to speak to their heart good things. No, we are not saints or clairvoyant elders or wonderworkers, but “we are priests, and pray for the reconciliation of people with God.”

Over the summer, I had the opportunity to visit Dorothy—an estranged parishioner of a local parish now confined to a nursing home for alcohol induced dementia (Korsakoff’s disease). My first visit with Dorothy consisted in her incoherently rattling through a litany of her old friends, most of whom had long since passed away, asking how they were and what they were doing? The visit was exhausting and seemingly meaningless. However, when I visited her the second time I brought communion for the sick. Immediately, she sobered up and became quite attentive. I read through the prayers. Occasionally, Dorothy would join in, mumbling. She communed beautifully and as I was putting away the things she started sharing. I sat down and listened while quietly praying inwardly. Even as I recall this now, I can hardly do so without tears. Dorothy told me that she prayed everyday for her parents, her friends and family who had died: the long list that I had been subjected to hearing upon my last visit. Here she was, stuck in a nursing home, suffering from the early stages of dementia, and she was praying for the world and its salvation. It was not so much what she said, but rather it was that I could see her soul and knew that inside, underneath her disheveled hospital gown and her mumbling speech, this person had a spiritual life of remarkable intensity and vivacity. I was completely, unexpectedly overjoyed! The work of the genuine shepherd is impossible, beyond the capacity of our human nature, both in its joys and fears. But we pray and journey with the souls committed to us and walk with them through the shadow of death, fearing no evil, for God is with us.

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