Intimations of the Great Unlearning
by Gisela Webb
What remains after the unraveling of mind, language, and knowledge in Alzheimer's was there in the beginning.
By profession I am a university teacher of comparative religion. I normally teach and write on subjects related to medieval religion (particularly Islamic and Christian theologies) or contemporary developments in religion and spirituality. My doctoral dissertation was on the subject of medieval Islamic mysticism. However, for many years, I had a parallel track of study that I had no choice but to follow: the disease called Alzheimer's, which my mother had for the last sixteen years of her life. She lived with my husband and daughters and me for the first ten years of her Alzheimer's decline; she was in a nursing home for six years.
It was, in fact, in the experience of being a primary caretaker of my "Alzheimer's mother" that I developed a curiosity, not only about the nature of Alzheimer's disease, but about what the process of Alzheimer's decline might tell us about the nature of the mind and personhood, the relationship between brain and consciousness, the relationship of mind, body, and soul/spirit, and, finally, the kinds of knowledge, experience, and communication that are available to the Alzheimer's patient in different phases of the disease. Of equal importance has been the question of what kind of knowledge is mirrored back to us, the caretakers, about ourselves that will help us to grow intellectually and spiritually through this process of death. When I began to think about these questions, I was both surprised and frustrated that most of the literature I found on Alzheimer's had little or nothing to do with religion or spirituality. There were guides to very important social work issues; there were care management booklets (for example, the well-known The Thirty Six Hour Day); there were reports on current medical research and evolving nursing facilities. But I was astonished at the lack of material that took religion seriously as an informing factor in thinking about or treating this particular disease, which after all is a kind of slow incremental dying — first, of course, of the mental processes. It was only after I was asked to speak on the subject of Alzheimer's (based on my experience with my mother) at a women's faculty gathering at my university that I was convinced — mostly by the nursing school faculty and students and nonmedical persons dealing with a family member's Alzheimer's decline — that there was indeed a need for discussion of the "spiritual dimension" of the disease.
In my reflections on Alzheimer's, I have drawn on a number of sources as partial guides to the perplexing questions and situations raised by the nature of the disease and its care-taking, many of which I came to know through my studies in world religions. These sources span time, geography, and disciplines, from Augustine's treatise on "Memory" in his Confessions to the Buddhist Tibetan Book of the Dead, from Al-Ghazzali's Alchemy of Happiness to Oliver Sacks's Anthropologist on Mars.(1) All of these writings ask what kind of knowledge and experience is available to us under different conditions and at different stages of life and death. I noticed in these particular works certain themes that seemed naturally related to my questions. Perhaps these writings seemed helpful because many of them contain — within a spiritual framework — an analysis of the human faculties. With Alzheimer's there is a decline over time, and the human faculties of awareness and perception are identifiable by the fact of their very visible decline and/or absence. In looking at the issues raised by the loss of faculties and the loss of boundaries of time and space, of imagination and memory, I found Buddhist insights on the self and mind particularly helpful. On questions raised directly by Alzheimer's care-taking — how can I prepare for death? for this death? — I found Islamic insights challenging and evocative. On the issue of finding practical aids to evoke and sustain cognition and feeling throughout the Alzheimer's decline, I looked at the "sacramental" dimension of Christian thought and its affirmation of nonlinear, affective modes of knowing. The main source of information on all of these issues, however, was my mother and the other Alzheimer's patients I came to know at the nursing home.
Over the years, I kept a journal of taped conversations and interviews in order to track the "narrative" (or lack of it) — the way language is used or not — as well as "learnings" gained or questions raised in my interactions with Alzheimer's patients and their families.
I would argue that the peculiarities of Alzheimer's disease, with its characteristic loss of memory, judgment, language, and social boundaries that define "self"-consciousness and "adulthood" (the boundaries of past and present; dream, imagination, and "objective" reality; "mine and not mine" underlying the sense of ownership, privacy, and shame), provide both patient and caretaker with the kind of powerful inner "tests" and "revelations" that have traditionally been associated with times of physical and psychological crisis and with the processes of death (spiritual and physical) and regeneration. Moreover, it is in the development of traditional religious "habits" of contemplation, mindfulness, compassionate speech, diminishment of ego, and use of ritual and nonlinear modes of communication in dealing with Alzheimer's decline that we may find the key to the very practical, concrete questions of the kind of care-taking that befits this critical transition period through dying/ death. Care-taking of the Alzheimer's patient, then, is potentially no less than a form of "practical mysticism" that uses a "contemplative attitude" in everyday life to effect — or create an "opening" for — the kind of spiritual breakthrough, transformation, and healing (for the person dying and the caretaker) that characterizes authentic forms of spirituality.
As a way of getting to these issues, a few points need to be made about the Alzheimer's process.
Faculties and Their Decline
Each step of the Alzheimer's decline affects the quality of life and behavior of the Alzheimer's patient, and thus the nature and quality of interaction with others. This means that there is an opportunity to facilitate, interact with, and influence the situation, but the question is "How?" On what principles?
At first, memory goes (short term first, then long term); eventually judgment goes. (It is one thing if someone doesn't remember something said five minutes ago; it is another thing when they do not remember the wall they just saw in front of them two seconds ago.) For a while, the caretaker can depend on the Alzheimer's patient's long-term memory — their "automatic pilot" — to keep a kind of sanity and safety in the house. My mom knew how to run the washing machine perfectly, if we did not mind the clothes being washed four or five times a day (since she forgot she had just washed them). They were always washed well and folded excellently, although they might disappear for a few weeks. Memory, however, may go while logic remains. For example, in my mom's last years at home, her long-term memory worked (for example, her knowing how to iron perfectly), her short-term memory did not (she would leave the iron plugged in and hot on the ironing board), but her logic did (she could figure out all of the places I might have hidden the iron before leaving for work). Or, she would wash the pots and pans, and I could figure out the logic (of sorts) of where they might be — one of three types of places. Writing notes worked for a while (for example, my reminding her of which and what times medicines were to be taken, or to remind her of where I was), but there comes a time when remembering to read the notes goes, which can lead the Alzheimer's person to panicked feelings of "Where am I?" "Why am I here?" "How did I get here?" Even in the chaos of these early phases of the disease, it was clear that there were ways to handle these situations that were helpful, others that were not. I could get angry (and I did on many occasions) or I could try to figure out how my mother's mind was working and what would get us through the situation. It was striking to me how my mother never forgot to go to noon mass every day, nor how to get there, nor what to do there. Attending mass was my mother's last independent activity before we placed her in a nursing home, and this particular capacity for remembrance formed a significant part of my reflection on the importance of faith and ritual.
The nursing home experience ushered in several new issues. My mom was on an Alzheimer's floor for four of her six years there. The move itself took away the last vestiges of a familiar "grounding" from my mom (at least at home she was getting around and interacting in her kind of automatic pilot way) and thus caused a disorientation (which always leads to further decline — which of course makes the caregiver feel responsible). There were also a number of new experiences. There was for her a new social situation, new interactions beyond family. A new stage of behaviors also began in my mother's process: roaming though and rummaging around others' rooms, taking other people's clothes and putting them on — sometimes embarrassingly wrong — and taking them off. We — family and hospital staff — could never expect anything to remain in anyone's room for very long. So the boundaries of privacy and shame, of a consistent "mine" and "yours," start to shift. No new learning is possible, so one cannot tell Alzheimer's patients what not to do; they do not remember and cannot learn why or why not to do something. However, as the nurses learned through their experience with Alzheimer's, you do not avoid the word "no" simply because it is not effective, but rather because the intuitive, feeling faculties are still intact. The "no" does leave an impression, and the "feeling"/ mood of negativity can last for minutes, hours, or days — who knows how long it "seems" for the Alzheimer's patient in her altered sense of time. Feeling and intuition remain intact.
Perhaps because the Indian religions deal extensively with the problem of mind and often use the model of perception in discussing knowledge, the use of certain concepts in Indian religions has been helpful to me in looking at, and responding to, the Alzheimer's decline of mental functions. I have paid particular attention to the ideas in Buddhist thought of right/compassionate speech and Zen, or original mind. First, compassionate speech is not simply an issue of not telling lies; it is a much broader concept. It is speech that does not create violence, speech that overcomes duality. As such it is a language that bridges the distance between self and other. It is an ethical mandate to speak/ choose words in a way that knows/reflects how the patient hears them. Compassionate speech in an Alzheimer's encounter does not mean asking about or explaining to the person the thing which they have forgotten or are perceiving incorrectly. That would be like getting my mom to conform to my reality. This approach causes so much suffering not only because it does not work, but because we cannot get that person — as we knew them — back. I remember my aunt saying to my mother, "Giselita, you remember Bobby (my aunt's son) don't you? Do you remember me?" The confused look. My aunt crying. My mother wondering why she was crying.
It is just as upsetting and shocking when the boundaries of past/present and imagination/reality break down. There is a stage when the patient may project onto you a long-dead person — a dreamed or imagined person — and speaks to you/them in the present. One has a sense that the Alzheimer's process is a kind of return to the womb, a moving backward in time, such that we are now in the 1960s, now in the 40s, now the 30s. The clues as to what era we are in lie in the "who" the Alzheimer's patient is speaking about, or to. I understood the meaning of compassionate speech, what it is and what it is not, was when my mother asked me, in a light-hearted tone, "How's Mama?" (her mother, whom I called "Tata"). My daughter and I looked at each other and said to her, trying to be sensitive, "Oh Mom, you know Tata is dead." It was clear that in her reality it was the first time she heard this. The news caused her shock and pain — and I think, unnecessary pain. After that, whenever the answer to a question might produce unnecessary pain (and I came to feel that in this season of life, virtually all pain is to be avoided or healed), "truth" became a nonissue; "objective" reality was a construct that I needed, not she. Compassionate speech, I realized, required that I enter into her reality at that moment and intuit the "correct" answer for her. It was quite liberating — and I came to do this with patients I did not even know — to just try to be where they were. Even in the latest stages of my mother's illness, when there was little coherent speech at all from my mother, there was a kind of code that emerged that was not in the words themselves, but rather in a particular communication intuited through eye contact, intonation, the combination of words that did come out, which together suggested a direction in which things should move, a response that would create joy, feeling, and heart. This possibility of communication on a depth level despite the decline in any kind of normal use of language is known and practiced intuitively by the patients themselves. It is common to see patients talking in different languages to each other, with each person hearing/understanding/receiving what the other is saying. Once, when I was "ambulating" my mom, one of the women patients made eye contact with her, brightened up, and said to her with such care, "Oh Elizabeth (not my mother's name), I'm so glad to see you. I heard you had been in the hospital — and with all your troubles." My mother heard the gesture and intention of compassion and allowed herself to receive/accept this gesture. Both women experienced in this moment of encounter a moment of right speech, and each received the essence of the message. I do not know what else this mutual gesture could have been other than the deepest expression of the essence of compassion. If this potential exists between people whose awareness of "objective" truth is altered or diminished, should we simply be amused or moved by it? Should we pity, fear, or grieve over such interaction (which is the response many visitors have in witnessing this Alzheimer's behavior)? Or is there something for caretakers to learn from it?
I have come to see compassionate, or "right speech," as a quality of life issue, a mode of being of real value to be appropriated by the Alzheimer's caretaker. The issue of compassionate speech — and the difficulty in using it — however, is connected to the nature of our ego. The impermanence of all finite reality, and the suffering created by our need to keep life, ideas, and people in a "fixed," form (a past, idealized, or wished-for form) in order to feel happy, are insights derived from Buddhist thought. Sometimes we use uncompassionate language because we need things to be a certain way to feel comfortable. In the case of Alzheimer's in particular, it takes some work to let that go and to enter in the logic, landscape, and culture of Alzheimer's — and to not try to change things. I know from my experience of how our habits/expectations/wishes of how things "were" or "ought to be" cause a profound sense of "upside-down-ness," such as when you, the child, are feeding or toileting your parent, or when they do not recognize you, or when they do not see "you" in front of them, but rather another person — or even a stranger. I was fortunate that in the latest stage in my mom's illness I was still in the category of special person/ a dearly loved person. Sometimes an astonishingly clear awareness of recognition would "zing" through; it appeared in a momentary flash, clearly manifest in the eyes, but it could not be planned. It gave the impression, and I must say certitude, that there is an essential knowing self, the soul, somewhat trapped beneath the veils of the decaying mind/ brain and body. If this observation has some truth to it, then there is truth to the seemingly conflicting claims of both classical Buddhist and Christian thought: the radical impermanence of reality (Buddhism) and reality of the eternal in the finite (Christianity). In Shunryu Suzuki's book, Zen Mind, Beginner's Mind, the Zen, or beginner's, mind is described as the mind that is flexible, compassionate, watchful, and not controlling. In this giving up of control, there is a kind of control — and great freedom. This is worth reflecting on when we are faced with the day-to-day issues of interaction with our Alzheimer's relatives as well as when we are faced with the limitations and unhelpfulness of old patterns of thinking and responding that we have inherited.
Die Before Death
In seeing my mom's and other Alzheimer's patients' behavior, I felt as if I were gaining glimpses of their inner lives and perhaps past experiences. These glimpses might come through a stage of behavior, like the weeping or acting-out-at-sundown phase so common among Alzheimer's patients — which has always seemed so much like a metaphorical resonance of the loss of one's self, a kind of self-grieving at the twilight of one's conscious life. They might be part of a loop — a theme or occurrence from the past that keeps coming up. They might be part of a "state" — a momentary rant, a reliving of a particular joy, pain, anger, or grudge. I have wondered (and I am ready to propose it as a theory) if what is seen in these glimpses is a sort of crystallization of the sum total of a life — its qualities, the inner heavens and hells created in life prior to the point at which it is no longer consciously possible to will a resolution or change in the experience being lived out in the timeless realm of the Alzheimer's patient. It seems like a kind of purgatory — this timeless twilight of joys, sufferings, remembered attachments to the world as well as disappointments in it.
According to Islamic tradition (particular in its mystical, or Sufi expressions), upon death "our sight will be made keen" (Qur'an 50:22); all human beings will inevitably see and experience things "as they are/ were." When we pass the "barzakh," the isthmus between life and death, we will experience all of what we have been and done — with absolute honesty, no denial — and we will experience the beauty or the suffering we were responsible for during our lives. The Islamic mystics emphasize that it is truly a blessing — and something to strive for — if one can attain the state of "islam" (the Arabic word for the state of inner peace that comes only with submission to God), a dying of the self attached to what is other than God, and thus a self-scrutiny and truly honest understanding about our motivations and actions before we die, so that we have at least a partial attainment of the inevitable realization of the truth of our actions in this life. Thus, on the most basic level the regular five-times-a-day prayer is seen as a kind of ongoing remembrance of God and ongoing washing, or cleansing of the dross that collects and accumulates on the soul. The Sufis developed quite sophisticated psychospiritual systems to try to analyze — and hence free — the self from those things which separate us from God, from fellow human beings, and from self-understanding — ego, pride, arrogance, dishonesty, ignorance, intolerance, and so forth. To experience a "dying before death" was the key to unity with God and interior peace in this life (and ultimately in the hereafter). Certainly the "dying of the old self" as conceptualized in the rite of baptism for adults in the Christian tradition is related to this idea.
Two thoughts come to mind, both based on the Islamic notion of death. First, what we witness in the Alzheimer's outbursts and emotional suffering seems to be vestiges of unresolved wounds, anger, disappointments — the repetition of injustices done — or realizations of self-loss (sun-downing). If that is so, might there not be the possibility of intervening — since these events are in the present for these people — to help resolve or heal these wounds (a sort of "time-travel" therapy), even if only "temporarily" (an almost meaningless term in the Alzheimer's patient's altered time/ space)? It is truly amazing what happens in just holding the hand of the Alzheimer's patient, or in simply acknowledging what they are saying — echoing it and then providing affirmation of the event they are reliving, an affirmation of them as people, of their forgiveness, of comfort. My sense is that this aspect of "processing of the past" by the Alzheimer's patient is not considered to be worth dealing with — or perhaps it is perceived as impossible to deal with — except for the utilitarian purpose of achieving individual or institutional calm, which is why many of these outbursts are treated first by medication. (This is not an objection to the use of medication. It depends on why and how.) Moreover, there is not the satisfaction or assurance that such therapeutic intervention would last more than a fleeting moment. Would that be cost effective? And it does not sooth the caretakers' egos. We get nothing back because we do not see progress. The decline continues. But the reality is that this caring does give momentary healing. Perhaps we are allowing the patients to process their death before death, which they are witnessing/experiencing whether we intervene or not.
The other lesson in this meditation on Alzheimer's and the theme of death before death is that the Alzheimer's decline may evoke in us our own need to be prepared for death. There used to be a sense of this necessity of preparing for death in medieval Christianity (see Ars Moriendi, The Craft of Dying). I wonder if Christianity's particular understanding and linguistic formulation of a salvation and healing "effected by Christ alone" has perhaps relegated psychological suffering and therapies to an arena outside the spiritual.
I have learned from the Alzheimer's ward the value of realizing that we (all) are going to die — that, indeed, we are dying — and so long as we are conscious, we are creating our heaven and/or hell, our peace and/or our suffering. The time to get rid of our own baggage (grudges, ego, and emotional wounds), get things in order, and strive toward a state of peace, forgiveness, and "self-forgiveness" is now — before one cannot will to change oneself any further. That stage of Alzheimer's disease prior to death can be a timeless hell or, perhaps, a place where surrender and a kind of peace can prevail. I have come to believe that there is a kind of threshold crossed in the Alzheimer's process, where the experience of the Alzheimer's patient is the crystallization of life's actions, motivation, intentions, habits of thought, and memories. However, because there seems to be perception/awareness beyond the mind level, of a deeper self — quite perceptible — despite the limitations and distortions of mind and brain caused by the disease, there is the potential, the space, for therapeutic healing. Indeed, the "space" for such healing may have more of a chance to open up as ego and mind go. There are tremendous implications here for a holistic — mind/ body/ spirit oriented — Alzheimer's care-taking ethic. Moreover, in the witness of the Alzheimer person's demise is a powerful realization of the necessity for an honest self-scrutiny and preparation for our own death in the midst of our life.
The Sacramental and Affective Dimensions of Life
The area of Alzheimer's care on which caretakers could probably come to some consensus is the importance of the roles of religious faith and ritual and the affective, nonlinear forms of experience. I am not saying anything new here; certainly the caretakers of the sick and dying have come to recognize the efficacy of faith and ritual in actualizing change in the state of people, in bringing joy and deep feelings to (and from) the dying. It is no less true in the Alzheimer's dying. I am convinced that the word "soul" — as a perceptive faculty of depth and essential feelings — is the appropriate word to use to describe the experiencing self of even the quite declined Alzheimer's patient. My mother was a devout Roman Catholic — a model of the best of Catholic and Christian values. What I have come to appreciate in a heightened way through witnessing the Alzheimer's process is the positive dimension of sacramental religion — that is, religion and spirituality that affirm the power in "material" forms to reveal the presence of the divine — not only through "official" religious actions (liturgy) or objects (sacred scripture), but through the world of nature, music, and visual arts. Moreover, sacramental religion does not see the experience of the sacred as limited to the rational intellectual processes, but as available through the intuitive, affective parts of our being. In the Alzheimer's decline, with mind and language gone, even the most minimal of linguistic formulations of religion — the language of prayer and theology — eventually go. I have wondered whether it is this loss that accounts for the diminishment of spiritual counseling and pastoral visits for late-stage Alzheimer's patients. It is evident, however, that "body memory" remains much longer than mind and linear thinking, and so the feelings of religious ritual, music, chant, poetry, body postures, and, particularly, the quality/essence of music (its character as well as its memory and meaning for that person), continue to be enjoyed and clearly partaken in, even after life-long rituals can no longer be performed and life-long prayers can no longer be articulated. There are discussions these days of therapies that integrate body, mind, and spirit. But with regard to situations where there is little, or no, mind, or consciousness, the discussion stops.
Nevertheless, I experimented with reading poetry and providing music for my mother to listen to. The effects on these people (I tried this with other patients) are astonishing, especially if the music reflects and connects to where they are in their return to the womb. This can be sorted out experimentally, with the side effect of revealing dimensions of the person not known before, or otherwise. When my mother was near death at one point, when no talking was possible, and there was simply the feeling-desire to find what she would, or could, enjoy, I brought in some love arias from opera. That decision was based simply on my reflecting on different types of popular music she used to enjoy. At that point in my mother's illness, big band music, to which she had responded with enjoyment and even bodily rhythm at an earlier stage of her decline, was "too much" for her now, but I remembered as a child noticing my mother sitting in rapture whenever Maria Callas made an appearance on the Ed Sullivan Show. With this image in mind (and not any knowledge of opera myself) I bought the most basic collection of recorded love arias. In this use of music with my mother, I now understood something of what my mother was hearing and feeling in those classic themes in opera — passion, love, and death — which I had not heard or listened for before. I also understood what theologians, such as Paul Tillich, mean when they speak of the potential in the arts for revealing the "infinite in the finite" and for opening up levels and understandings of reality not knowable other than through the arts and symbol.(2) I could see in my mother's body language and in her eyes — at a time when she was extremely weak and unresponsive — a tremendous transformation, like a dry flower being watered. I asked the nurses and other witnesses if they saw what I saw. They did. In my mother's last days, I looked for something that resonated with her "Latin mass" era; playing some of the medieval mystic Hildegard's music had the same effect. The nurses saw the effect and, to the end, played it for her when I was not present. The experience of playing various types of music for my mother (and other patients) — from liturgical chant, to traditional ethnic ballads, to popular music of various eras — has caused me to reflect on the nature of music, its appeal, its efficacy, and its neurological/psychological/sacramental possibilities in terms of facilitating a connection for the Alzheimer's patient to the deep well-springs of life — to dimensions of the sacred — that go far deeper than language and doctrine.
The Great Unlearning
I call Alzheimer's the great unlearning, because it is clearly an unraveling of mind, language, and former knowledge. But in my experience, there is a center, or centers, of apprehension and experience (such as humor, intuition, and emotion) clearly intact much longer than mind and language. The nature of Alzheimer's decline suggests to me both the reality of the radical impermanence of life (as suggested in the many constantly shifting states and stages of the disease) and the reality of some deeper knowing/knower. Therefore, it supports the ethical mandate to honor that deep and abiding part, or ground, of the person, despite the eroding of the most basic characteristic of humanness: the self-reflective consciousness. I wonder if what we see in Alzheimer's disease is a kind of return to our origins — an Edenic pre-self-conscious, pre-dualistic state, prior to separation and shame.
I also call Alzheimer's the great unlearning because we, too — the caretakers — need to find ways to deepen forms of awareness within ourselves in order to better read the signs of the needs of the Alzheimer's patient over time and to facilitate healing where we can. Alzheimer's care-taking is an opportunity to begin our own process of unlearning, of facing that within ourselves which needs knowing, healing, changing, and, yes, dying. The Alzheimer's demise gives us a slow-motion glimpse of perennial questions about human nature as well as encouragement to find new constructions and methods of healing — for the patient and the caretaker — in the midst of the demise of consciousness called Alzheimer's.
My mother died on November 22, 1999, at age seventy-nine. I have only praise and gratitude for the staff at Montgomery County Geriatric and Rehabilitation Center in Royersford, Pennsylvania, where my mother was cared for with dignity and compassion in the last six years of her Alzheimer's decline.
1. [Back to text] Other works consulted were John of the Cross's Dark Night of the Soul and the Ascent of Mt. Carmel, with their evocative discussions of the darkening and demise of various perceptual faculties in the spiritual life; Bonaventure's The Soul's Journey into God, with its particularly Franciscan reflections on the meaning of the incarnation in its "coincidence of opposites"; the anonymous Cloud of Unknowing, which speaks to the issue of special knowledge/awareness/experience available through a kind of leaving behind and transcending ordinary modes of perception and awareness; Ars Moriendi, the medieval Christian text on the "art of dying," whose presupposition was that there is such a thing as a good death; Buddhist philosophical and preparatory guides on death, such as The Tibetan Book of the Dead and The Tibetan Book of Living and Dying; Islamic mystical treatises on psychology and death, such as the Alchemy of Happiness, by the medieval Muslim theologian, al-Ghazzali, and To Die before Death, by the twentieth-century Sufi sage Bawa Muhaiyaddeen. Important also were examples of religiously oriented literature, such as Tolstoy's The Death of Ivan Ilyich, as well as contemporary psychological and neurological discussions of death, illness, and consciousness, such as those by Oliver Sacks (Awakenings, The Man Who Mistook His Wife for a Hat, and An Anthropologist on Mars), who explores the paradoxical role of "defects, disorders, and diseases" in bringing out "latent powers and developments, evolutions. . . that might never have been seen. . . in their absence."
2. [Back to text] See "Symbols of Faith" in Paul Tillich, Dynamics of Faith.
Copyright of Cross Currents. This article was reprinted with express written permission of the author and the publisher.