By Peter Kavanaugh
A paper delivered by Peter Kavanaugh at the Orthodox Christian Association of Medicine, Psychology and Religion conference on November 8, 2014 at Holy Cross Seminary, Boston, Massachusetts.
I will never forget Susan. She was sitting in her wheelchair when I first met her. Her hair was disheveled. The expression on her face was incoherent and confused. She looked into the distance with a vacant stare and waved her hand to and fro, senselessly. She did not recognize her family when they came to visit her. She did not remember the parents that raised her, the meal on which she dined that morning, nor the words spoken to her by the nurse only minutes before. Here, in the assisted living home, Susan spent the last several years of her life a frail, quiet, and for the most part, forgotten person.
The final season in life is full of profound changes. In some instances, this is a time of joy, forgiveness, revelation, and wisdom. When given the opportunity to reflect, and share one’s legacy with younger generations, some discover new perspectives on life, and may, for the first time, become concerned with the eternal and lasting. Unfortunately, old age can also be fraught with losses and diminutions. Many suffer terribly when their body stops working, and are afflicted by multiple disorders and chronic pain. Old age may involve a loss of autonomy, self-respect, or even purpose. Susan’s situation is in no way unusual. Alzheimer’s and memory-loss often give rise to the most challenging situations in aging.
In one way or another, these events will affect each of us. Like so many others, I have felt the impact of dementia in my own family, and grieved with loved ones who suffered severely through each stage. As a former chaplain at a memory care facility in Boston, and more currently, a healthcare professional at an assisted living home in Nashville, TN, I have often wrestled with difficult questions and dilemmas. How can we understand personhood in the light of a fading mind and body? In what way can we nurture a relationship with a person with severe memory-loss? Does spirituality have any place in this? What is the role of the elderly in a Church community, and finally, what is the Church’s position throughout all of this? In the following reflections, I hope to explore these issues, by casting them in the light of the Church Fathers, current medical research, and my personal experiences in geriatrics.
Personhood and dementia
Many of us have known someone who resembled Susan. She may remind you of your mother, father, spouse, or dearly beloved friend. If so, you have probably wondered or still wonder, what happened to the person you once knew and loved so well. Since I began to work in senior living homes, I have often heard people say, “She is no longer the same person”, “The spouse I married has disappeared”, or “We lost him years before he died.”
Dementia is an irreversible and degenerative disease in the brain, which affects one out of eight adults over 65.1 Over many years, plaques and tangles build up in the cerebral cortex and destroy millions of neural connections.2 Essentially, the brain degenerates, and a person will lose his or her ability to function on nearly every physical level.3 Short and long-term memories disappear. Common objects and familiar people may become unrecognizable. The disease process elicits strange behavior, such as aimless wandering, uninhibited emotions, depression and delirium.4 Eventually, reason and communication become rare, if not impossible. In the midst of all these losses, it is no wonder that people ask, “Is this still the same person I knew?”
Our assumptions about personhood are deeply influenced by cultural values. Rene Descartes’ influential adage, “cogito, ergo sum”5 ‘I think, therefore I am’, stresses reason and the intellect. America has a pervading reverence for individuality and autonomy. We often link our identity with our ability to act, that is, to teach, engineer, philosophize, or even parent. Many of us could say, “I accomplish, therefore I am.” Dementia, on the other hand, robs a person of his or her rationality, autonomy, and agency. It brings these cultural anchors of identity to a jolting halt; as a result, many conclude that it robs us of our humanity.
A Different Perspective from the Church Fathers
The Church Fathers, however, had a very different perspective. Two central understandings of human nature run throughout their teachings. First, they define personhood in terms of relationship — to be a person is to be dialogic. Second, they insist on a psychosomatic union — that is, that the body and soul share an inseparable unity. By taking a moment to consider these in the context of the aging process, we will discover a new set of lenses for looking at our loved one with dementia.
Human nature is dialogic. Deep down, each of us yearns to be in dialogue, in communion, with God and one another. Metropolitan John Zizioulas illustrates: “To be and to be in relation become identical…. It is only in relationship that identity appears as having an ontological significance.6 Elsewhere he writes, “personhood implies…the ek-stasis of being…a movement towards communion which leads to a transcendence of the boundaries of the ‘self.’”7 Simply put, each of us has an innate drive and propensity to reach out beyond ‘self’ towards the ‘other.’
This nature exists because we have a nous, the “eye” or “power of the soul.”8 As the recent theologian, Jean-Claude Larchet, explains, “the nous represents the contemplative possibilities of the human being. For the Fathers it is fundamentally that which links man with God…it is the indelible mark of man’s most profound being, of his veritable nature.”9 If this indelible yearning for communion is so central to personhood, how then do we understand someone like Susan? What is the impact of a dysfunctional body and mind on a person’s nous?
We can answer this question by looking at the Church Fathers’ teaching about the psychosomatic union. They explain that the body and soul are interwoven and commingled, and that personhood is imprinted within this union.10 In St. Gregory of Nyssa’s words, “the nous is equally in contact with each of the [body] parts according to a kind of combination which is indescribable.”11 The body and soul, however, have different functions. He continues by saying that the soul “transmits from itself to an organized and sentient body the power of living and of grasping objects of sense.”12 The soul gives the body life as well as the ability to interact with the material world.
What happens when the body stops functioning correctly?
This is most beautifully described by St. John the Solitary. He writes, “...when one of [the body’s] interior members is injured, be it either the brain or heart, it is not the soul’s nature that is impaired, but the activity exercised through these members that is impaired.”13 St. John continues with the following analogy about a musician and his instrument: “When a cord in a zither, or a pipe in an organ is damaged, it is not the finger that plays upon them that is at fault, but rather it is the artistic activity of the finger that is impeded from sounding forth by the zither’s cords or the organ’s pipe because the defects are in the instrument.”14 To rephrase, when the body stops working correctly, the soul remains alive and present, but it is unable to communicate or interact with the world effectively.
The relevance of this analogy is striking when we consider the person with dementia. The disease destroys critical areas of the brain, sapping a person of basic necessary abilities, but it does not sap him or her of everything. According to an overwhelming amount of research, people with dementia maintain emotions, imagination, a will, and moral awareness even in the most advanced stages.15 The Church Fathers insist that the inner person is present in a body, however demented or broken. Dementia does not destroy a person’s nous, and an afflicted person maintains the need and possibility for relationships. Like the musician struggling to play music on a broken instrument, our memory-impaired loved ones are alive, but cannot play their song as effectively. As each string snaps one by one, certain strings remain unharmed. Our task is to concentrate on the remaining strings, and to learn to listen to the music.
One afternoon, I decided to spend a few minutes with Susan. Like so many others in her state, she said “hello” and lapsed into what appeared to be silent vacancy. I chatted about nothing in particular at first, and soon became silent, pensive and uncomfortable. Then, not knowing how to proceed, I arose to exit. Immediately, Susan turned to me, and with words saturated in emotion and loneliness, asked me: “Where are going?” I was taken aback thoroughly and sat down once again. This time I merely took her hand into mine and gazed into her eyes.
From there on, whenever I entered a room with Susan in it, her face lit up with joy and eagerness. She could not remember me on a cognitive level, but she certainly did on an entirely different level. I learned an invaluable lesson: how to be comfortable with silence, and to simply be present. In this way, we shared conversations through mere eye contact, and formed one of the most profound relationships I have known. I will never forget the brightness, transparency, and life of her eyes. There could be no room for doubt, that underneath the disease, underneath the quiet, vacant, and wrinkled face, there was a living person.
Nurturing a relationship
Reaching out to someone with memory loss can be frustrating, but it does not need to be. To continue with our analogy of the musician and his instrument, we can think of dementia as a series of strings snapping. Family members often become so upset to see the broken strings, that they forget to see the strings that remain intact. Rather than concentrating on what is lost, we can learn to cherish what remains.
Teresa was an elderly woman with dementia who had lost all her post-childhood memories. When her son John came to visit, she mistook him for her brother. Feeling dejected, John repeatedly insisted that he was her son; he wanted to “snap her out of it.” Consequently, these visits always ended in mutual exasperation, and gradually became more and more infrequent. What went wrong? John wanted to reach out to Teresa, but with a condition, an expectation that she behave in a specific way. Because of her condition, Teresa could no longer relate to John as a mother to a son. She could, however, relate to him as a person to a person. She could no longer recognize John, but she could recognize love. But he was not willing to let go of the broken strings.
Now I would like to describe a different situation. Mary, who lived in the advanced unit of a memory care center, could never fully understand where she was. Her mind ‘filled in the blanks’ with different delusions. On some days she believed she lived in a hospital, at other times she insisted she was in prison. Now, a certain caregiver met with Mary on a weekly basis. Each time, Mary insisted on phenomena that simply did not exist.
The caregiver responded with these three important steps. First, she took Mary’s hands in her own - physical contact and affection are equally important at every stage of life. Second, the caregiver never contradicted or argued with Mary, but affirmed her. If Mary would demand, “I need to go home to my mother.” The caregiver gently repeated, “so, you want to go home to your mother.” People with dementia are used to being told “no” or “you can’t do that!” This caregiver, alternatively, simply affirmed Mary’s statements and desires. She respected Mary’s personhood. Third, in a calm voice, the caregiver responded to Mary’s emotional needs. “How does that make you feel?” She said, or: “That sounds so hard. Tell me about that.” At the end of these conversations, Mary usually relaxed because she felt heard and loved.
Miss Betty is another lady with advanced Alzheimer’s disease. Upon approaching her, she always begged me to take her home to her parents (who, I was aware, have long since passed away). In scenarios like this, the worst thing you can do is criticize her and try to explain that she is home and her parents are dead. Remember, these memories, this string, were permanently broken. But some strings were still intact. In the midst of Betty’s delusion, something was very real - her emotions and her need for sympathy, respect, and love. I usually responded to Betty by saying: “your parents must be very important to you, tell me about them.” By concentrating on what lasts, and not on what is gone, Betty and I developed a relationship that was meaningful and joy-giving.
Research continually links loneliness with physical pain, depression, poor psychological well-being, and “vegetation.”16 Tom Kitwood, a pioneer in person-centered care, observes that, “It is often the case that a dementia sufferer who is visibly withdrawing or becoming demoralized, is transformed by a little real attention and human contact.”17 Social relationships slowdown the progress of dementia drastically and improve the physical and psychological health of aging adults.18 It is crucial that we reach out to the elderly and spend genuine time with them.
One of our greatest gifts to the elderly, moreover, is to help them to experience God’s grace. When I meet with Christians, I often offer to say an ‘Our Father’ or a ‘Hail Mary.’ Most people learned these in their early infancy, and I am continually astounded to hear residents praying along with me, who could not otherwise tell you their own name. However brief, these moments can be like a drop of water on a parched throat, bringing peace and meaning to an elderly person.
One morning I sat by Rebecca’s bedside, and quietly read Psalm 148, “Praise ye the LORD. Praise ye the LORD from the heavens: praise him in the heights… Praise the LORD from the earth, ye dragons, and all deeps: Fire, and hail; snow, and vapour; stormy wind fulfilling his word.”19 Rebecca was in the most advanced stages of Alzheimer’s. Death was at her door, and she had long since grown silent and incoherent. But at these words in the psalms, she waved her hands in the air and cried, “Lord! I know they do that! I know they do that!” Who knows what the soul is working through, behind the vacant stares of so many like Rebecca. What we do know, most confidently, is that her heart pines for God.
The sacraments, of course, are the most potent gift available to a person like Rebecca. In For the Life of the World, Fr. Alexander Schmemann explains: “A sacrament…is always a passage, a transformation. Yet it is not a ‘passage’ into ‘supernature,’ but into the Kingdom of God, the world to come.”20 The sacraments are a passage into life itself.21 They unite broken humanity with God. They usher the weak and strong, the joyful and sorrowful, into the eschaton.22 Dementia robs so much from an individual, but it does not rob him or her of this blessed gift.
In one of his books, the eminent neurologist Oliver Sacks describes the impact of Church on a severely memory-impaired patient named Jim. He writes:
Seeing Jim in the chapel opened my eyes to other realms where the soul is called on, and held, and stilled, in attention and communion… he was held in emotional and spiritual attention – in the contemplation of nature or art, in listening to music, in taking part in the Mass in chapel – the attention, its ‘mood’, its quietude, would persist.23
Unknowingly, Oliver Sacks may have stumbled upon the nous - that indestructible medium for communing with God - that string on the instrument that will never break. Our memory-impaired elders are as equally in need of the Eucharist, confession, unction, holy water, sacred music and art, and all other physical manifestations of grace, as they are in need of food, water, and medicine.
Spirituality and aging
Spirituality has a strong influence on an aging person’s health. Harold G. Koenig, a leader in the geriatrics community, reports that “religiously committed older adults are healthier, abuse alcohol less often, have lower blood pressure, experience fewer strokes, and have longer survival rates than those older adults not committed to religion.”24Furthermore, evidence-based studies suggest that individuals with dementia who participate in meditation and prayer groups are less agitated, anxious, and depressed.25
Having said this, the purpose of the Church is not to provide coping mechanisms for mental health. The Church is life itself. It is God’s sacramental presence on earth.26 In Paul Meyendorff’s plain words, “Humanity is created to be in communion with God, and the eucharist is the realization of this communion.” True healing, he states, is “the restoration of the proper relationship between God and humanity.”27 Dementia and many age-related disorders are irreversible; however, a person can experience healing of a greater kind as he or she shares an authentic relationship with fellow brothers and sisters, and our Lord in heaven.
Our elder’s place in the Church
We cannot address the needs of the elderly without discussing their place in the Church. “The body is one,” St. Paul tells us, “and hath many members, and all the members of that one body, being many, are one body.”28 Again and again, our scriptures and tradition emphasize the oneness of the Church. Meanwhile, we live in a society that is highly age-segregated and ageist. Life, as many of us see it, encompasses children and teenagers in school, adults in the work force, and then, well, what else is there? The old and the aging easily fall through the cracks - and just as easily in our parishes. When this happens, can we truly call ourselves one? The elderly are an inseparable part of the community.
The trials in old age are never isolated to an individual, but affect a continuum of people. The elderly usually rely on family members and friends for their most basic needs, a responsibility that can be physically, spiritually, and even financially crippling. One author points out, “As families deal with life, so do they deal with disease.” Alzheimer’s, she continues, “tends to bring about family crisis, even in the best organized and healthiest of families.”29 Paul Meyendorff once said something on a similar note, “The sickness of an individual, just like the sin of any member, affects the entire Church. The whole body suffers when one of its members falls ill or sins.”30 In the midst of so many changes and losses that are part of old age, people need an anchor to turn to. It is critical that the Church be present to the very end.
A Church that does not genuinely tend to the needs of the elderly fails to carry out its inherent mission. “We bear one another’s burdens,” St. Paul writes, “in order to fulfill the law of Christ.” To be Christian is to be eucharistic, and to be eucharistic is to be communal. Rosalie Hudson, a lay theologian and leader in the nursing community, suggests, “The Eucharist is a sacrament of remembrance…to unite us, in all our differences and personal alienations, into one body, a body in which the suffering of one is the suffering of all.”31 When we have ceased to incorporate the weak into our lives, we have ceased to be Christian.
Gifts of the elderly to the community
The elderly bring a distinct and all-important contribution to a community. In traditional Orthodox societies, older adults are looked at as beacons of wisdom and spiritual guides. Are we now so advanced and enlightened that we no longer need the elderly? I cannot emphasize enough how much I learn from residents at my assisted living home. Even those who are no longer able to remember their own names, often share truths that they have gleaned over a century. Are we able to listen? In a society that is constantly rushing, stressed, and anxious, the elderly give us an opportunity to slow down and contemplate. Are we able to be still? Christ promised us that when we serve the frail and broken, we serve Him directly. Can we see our savior in the aging person? And, which is perhaps most needed in our modern society, the elderly give us an opportunity to draw close to death.
Before studying at Holy Cross School of Theology, I spent four and a half years visiting monasteries on a weekly basis. My heart yearned for something, which I could not find in society. It drove me to northern Greece, where I joined a monastic community for fifteen months. The other day, a friend asked me how it was that, after all this, I ended up in healthcare. The answer I gave him is this: what I looked for in monasteries I have found in homes for the aging and the dying.
During so many hours by the side of dying patients - holding hands with Susan as she breathed her last breaths; gazing silently at the beautiful eyes of Mary, who was lost and confused; listening to the same stories over and over about Bob’s industrious parents - I have often encountered the transcendental. Something happens to a person in the twilight of life. The responsibilities, affairs, and preoccupations of young adulthood suddenly become less important. The noise of man’s world grows quiet, and is replaced by a melody of a very different kind. No wonder so many of us are uncomfortable in this setting. But this silence, this music, is our soul’s medicine.
The Church Fathers urge us to remember death on a daily basis.32 We refer to death in the liturgy and our evening prayers. The saints continually urge us to expect death “at every hour.”33 Remembrance of death is not the denial of life. It is life’s enhancement. This is because death, as Fr. Paul Evdokimov explains, “is not just momentary. It coexists and accompanies us all along the path of our lives. It is present in all things as their obvious limit.”34 The nearness of death is a great gift to us, for it helps us to see life as it truly is, and to discover our most innate purpose in this life. A community, therefore, that takes time to fully incorporate older adults into its daily life, will have the opportunity to share a divine and transformative encounter.
A few final reflections
We learn from the elderly a good deal about what it means to be human. At every stage of the aging process, whether someone is in ideal health, or is at the most advanced stage of dementia, we encounter a living, breathing person, wholly in the image of God, and fully able to share a relationship with God and man. By seeing the person beneath the disease, we can learn to nurture a relationship which brings joy and healing. Lastly, the elderly ought to have a true presence in our lives. It is only then, when every stage of human life is woven into the fabric of the Church, that we will truly be one. Ultimately, the old and aging give us an opportunity to learn to listen to the music.
1 Susan H. McFadden, Mandy Ingram, and Carla Baldauf, “Actions, Feelings, and Values: Foundations of Meaning and Personhood in Dementia,“ Journal of Religious Gerontology (2001), p.21.
2 Tom Kitwood, “The Experience of Dementia, “ in Aging & Mental Health (1997), p. 23.
3 Tam Cummings, Untangling Alzheimer’s: The Guide for Families and Professionals (Dementia Association, 2008), p .41.
4 Ibid., p. 112.
5 Rene Descartes, Discourse on the Method, transl. John Veitch (New York: Cosimo, Inc. 2008) p.25.
6 John D. Zizioulas, Communion and Otherness: Further Studies in Personhood and the Church (Bloomsbury: T&T Clark, 2007), p.1.
7 Zizioulas, “Human Capacity and Human Incapacity: A Theological Exploration of Personhood,” SIT 28 (1975), pp. 407-408.
8 Jean-Claude Larchet, Mental Disorders and Spiritual Healing, trans. Rama Coomaraswamy and John Champoux (Hillsdale, NY, : Sophia Perennis, 1995), pp28-29.
9 Ibid. p.38.
10 Ibid. p. 30.
11 Hierotheos Vlachos, Orthodox Psychotherapy: The Science of the Fathers(Greece: Birth of Theotokos Monastery, 2005), p. 101.
13 Larchet, p.38.
15 Debbie Everett, “Forget Me Not: The Spiritual Care of People with Alzheimer’s Disease,” in Larry Vande-Creek, Care for Persons with Dementia: Fundamentals for Pastoral Practice (New York: The Haworth Press, Inc., 1999), p.80.
16 Morley D. Glicken, Evidence-Based Counseling and Psychotherapy for an Aging Population (Practical Resources for the Mental Health Professional), (Waltham: Academic Press, 2009) p.2005.
17 Ibid., p.28.
18 Kitwood, “The Experience of Dementia,” p.18.
19 Psalm 148: 1-8.
20 Alexander Schmemann, For the Life of the World: Sacraments and Orthodoxy, (Crestwood, NY: St. Vladimir’s Seminary Press, 2003), p. 27.
21 Schmemann, The Eucharist, Sacrament of the Kingdom, (Crestwood, NY: St. Vladimir’s Seminary Press, 2003), p. 27.
22 Schmemann, For the Life of the World, pp. 102-103.
23 Oliver Sacks, The Man Who Mistook His Wife for a Hat: And Other Clinical Tales, (New York: Simon & Schuster, 1998), pp. 38-39.
24 Glicken, p. 270.
25 Elizabeth MacKinlay and Corinne Trevitt, Finding Meaning in the Experience of Dementia: The Place of Spiritual Reminiscence Work, (London: Jessica Kingsley Publishers, Ltd., 2004), p.137.
26 Schmemann, The Eucharist, p. 36.
27 Paul Meyendorff, The Anointing of the Sick, (Crestwood, NY: St. Vladimir’s Seminary Press, 2009), p. 24.
28 1 Corinthians 12:12
29 Frena Gray-Davidson, The Alzheimer’s Sourcebook for Caregivers: A Practical Guide for Getting Through the Day, third edition (Los Angeles: Lowell House, 1999), p.47.
30 Meyendorff, The Anointing of the Sick, p.86. 1 Cor 12:12.
31 Rosalie Hudson, “Aging and the Trinity: Holey, Wholly, Holy?” in Albert Jewell, ed., Aging, Spirituality, and Well-Being” (London: Jessica Kingsley Publishers Ltd., 2004), p. 137.
32 Paul Evdokimov, Ages of the Spiritual Life (Crestwood, NY: St. Vladimir’s Seminary Press, 1998), p.116.
33 Isaac the Syrian, Mystic Treatises, tr. A. J. Wensinck (Amsterdam, 1923)
34 Evdokimov, Ages of the Spiritual Life, p. 203.
G. Stokes, And Still the Music Plays (London: Hawker Publications, 2010).
This article was printed with permission from THE WORD, the Journal published by the Antiochian Orthodox Church where it was first published.
Peter Kavanaugh is the activities coordinator at Park Manor, a senior living community in Nashville, TN. He previously earned his Masters in Divinity at Holy Cross Greek Orthodox School of Theology, and is completing further graduate studies in healthcare administration. As a member of the OCAMPR Executive Board and a spokesperson on spirituality in elder care, Peter is an enthusiastic advocate for the rights and well-being of older adults.