Dementia: A Sacred Journey

Keynote address by Mahan Siler
Conference: The Sacred Journey of Dementia

June 7, 2014

My credentials today are my teachers on this subject: Canaan, James, Jane, Leah, Tamara, Janice, Dan, Anne, Liz, Marvin who are present here and my father, my mother, my sister who are present in spirit. What I know about the sacred dimension of this journey I’ve largely learned from them.

My father, deep into the final stages of this Alzheimer illness, died in 1974. His doctor, hesitant to discuss Dad’s “senility,” remain reluctant to give the diagnosis, now so clear from the perspective of today. When visiting home during the earlier years of his decline, I insisted on giving my mother a break by spending the night with him. All night we went through this routine: he would rise from his bed, dress himself and get back in his bed fully clothed, shoes included. Over and over through the night we played out this drama. The next morning I asked my mother, “Is this typical behavior?” She said, “Yes.” Immediately I went in search of a diagnosis. Finding the book 36 Hour Day gave us names for his decline in memory and described mother’s frustration. We had no MemoryCare resource in those days. And, currently my sister, Caroline, is in the final stages of this same disease, now not able to recognize any of her family.

So, you can understand why my gratitude for MemoryCare abounds—as does yours. It provides safe spaces, welcoming places for us to hear their invitation: “Let’s talk, there is no stigma here;” “Come, we can help you with resources;” and “You are not alone.”

The title names the purpose of our gathering today—sacred journey. The journey-part you did not choose. Your dementia came unwanted. It is a given. You have found no clear maps. No manuals to follow. The journey is bordered by an unclear beginning and no clear ending. All of us present are, in some sense, fellow pilgrims on this journey. We stop at this watering hole, for these few hours, finding sustenance for this journey.

But the “sacred” part is a curiosity, a possibility, even a choice. A century ago a religious scholar, Rudolf Otto, explored the meaning of the holy or the sacred. He asked, “What is this experience we call sacred?” His answer was in Latin: “ mysterious tremendum et fascinans.” The sacred is an experience of profound mystery that defies adequate words to describe it; the sacred makes us tremble, shakes us in our boots, brings forth awe. And this sacred experience fascinates us, draws us in and down to our soul, makes us curious and open.

So in these moments I’m hoping for a sacred conversation, a soul exchange, with hearts listening and receiving. The mind-part of understanding dementia through ideas, research and clinical interpretations is a crucial resource for you. But I am ill-equipped to offer that kind of knowledge. My assignment reaches for another level of knowing. I am privileged to probe with you the mysterious, trembling, fascinating possibilities of the sacred on this journey.

Allow this poem by William Stafford to prompt our conversation.

There is a thread you follow. It goes among
things that change, But it doesn’t change.
People wonder about what things you are pursuing.
You have to explain about the thread.
But it is hard for others to see.
While you hold on to it you can’t get lost
Tragedies happen; people get hurt
or die; and you suffer and grow old.
Nothing you do can stop time’s unfolding.
You don’t ever let go of the thread.

For sure, you know the truth of the line: “It goes among things that change.” You know all about change. The change you know is incremental—a “1000 good byes,” as Nancy Reagan named it. The change is demanding, a constant, a 24/7 experience for the one with dementia, and a 24/7 responsibility for the care-partner. You face all kinds of changes—in the scheduling of time, in the language you use, in the content of the conversation—to name a few. Yes, you know, as they say, “up close and personal” the “things that change.”

But what about the thread? What’s the thread you follow in all the change, the thread that does not change? What’s the thread?

Is it the threat? At one point there was a typo in printing of this program. The word, “thread,” was mistakenly typed “threat.” Well, was that some unintended wisdom? Is “threat” the thread? It could be.

There is threat running through your experience. There is on-going loss, always the hardest part of change. The experience of dementia is not a sudden, piercing loss, as in the loss of a loved one in sudden death. It’s not a storm of grief that comes and passes. Dementia is more a long, hard endless rain, a gradual darkness, a long mourning.

This threat means the loss of your core identities—for all involved. As care-taking becomes more central, you say “yes” to being a care-partner and “no” to former ways of defining yourself.

For persons with dementia, while living in the same body, you gradual feel the loss of who you are. In both instances, a redefining of self is occurring, a felt loss of former identities.

On one Thanksgiving, during the early stages of my father’s Alzheimer illness, our family was gathered around the table in the dining room where hung a portrait of my father on one wall. My sister and her family of six were on one side of the table; my family of six was on the opposite side, with my mother and father sitting at the ends of the table. With all the catching-up conversation and laughter going on, evidently my father felt left out and didn’t know how to join in the conversations. All of a sudden, he stands up forcefully, points to his portrait on the wall, and announces with a strong voice: “That is a great picture!” In shock, realizing our total insensitivity on our part, we said, “Yes, Dad, . . . that is a great picture!” He was screaming for recognition, “Don’t forget me,” and maybe on an even deeper level, “Don’t let me forget me!” He was losing his identity.

There are countless losses from this threat: lost pieces of the relationship, formerly enjoyed but no longer possible; loss of time for self-care and friendships; loss of adequate support from those professionals, family and friends who hold on to who you were, not willing or able to be with you as you are; and certainly loss of control or, more accurately, the lost illusion of controlling your future with plans and possibilities and certainties.

Is that the thread, the on-going threat from multiple, unending losses? Is that the tread you follow? Maybe, or could it be something else?

Presence, present—could that be the thread?

This illness invites—no, it demands—that you live in the present. As the awareness of the past recedes, as the future is less predictable, the here and now looms larger and larger. What’s left is a new sense of the Now, this moment, the present. The immediacy of what is claims your attention—the shirt to wear, the meal to fix, the appointment to make, the instructions to repeat. For both the one with dementia and the care-partner, time is redefined. Increasingly, the present trumps both past and future.

But present can mean presence. The illness invites all participants to live more fully in the present with presence. How seldom do most of us live in the present, the here and now, with our full presence. Regularly we hear this lament in our society: “Oh, if only I could be more alive in the only time I have—the here and now.” But how easily our thoughts carry me off in worry of what’s coming or regrets over what’s been. More and more people are turning to “mindfulness” training, learning how to be present with presence. You don’t need to go off somewhere for such training. It has come to you. Through this illness, you know the constant invitation and challenge to live in the present with presence.

This leads to another play on this word. Present leads to presence and presence takes us to present, as gift. Are there presents, gifts in the journey? Where are the gifts, the presents to be unwrapped?

I remember standing at the window with my father, then advanced in the illness. He was captured by the apple tree in our front yard. “Look,” he said, “look at how the wind is blowing those apple blossoms back and forth. That’s something!” I had never really seen that tree, not really, not fully, not deeply. But Dad, speaking from his new sense of presence, was inviting me to be present with him, present to the moment, present to the wonder of a branch full of apple blossoms blowing in the wind. The memory to this day is a gift, a present I continue to unwrap.

Or, there is the gift of Caroline, my sister. While recognition of me or other loved ones has passed, her core remains. She is full of gratitude. She is the one in the nursing home who from her wheel chair greets every passer-by with a smile and “hello.” With every act of care, she responds, “Thank you, thank you!” Now, please understand, I am not minimizing the loss of so much of who she has been. I grieve that loss. But neither to I hesitate to celebrate her happiness, a state of being not consistent in her life. Being with her now, lodges the prayer in me that my core, the last thing to go, will also be gratitude with a smile.

And there is the gift of friend James. Being colleagues in the 1970s, I can attest to his intellectual abilities, his clinical skills. But now, he speaks about the inner shift of his center of gravity, moving from his head to his heart. I am privileged to experience this shift, but more to the point, I am learning from him that shift in myself. He is living from the heart, with his mind being in the service of his heart. I’m sitting at his feet. I’m learning, ever so slowly, how to relish the joy of the moment, looking for the gifts that are there for those “with eyes to see,”and feel the gratitude that follows.

Don’t misunderstand. I am not saying, let’s be thankful for dementia. Neither am I lifting up the impossible expectation that care-partners can always be present with their presence. Yet, there does seem to be a shattering of our taking-for-granted world that occurs. Sometimes . . . sometimes in the present there is presence that can, on occasion, have gifts for us to receive with gratitude.

Is that the tread? Could it be the tread—to be present, to keep showing up, being present to the moment with presence looking for the occasional presents, the gifts, to be named and received with gratitude? Is that your thread you follow?

There is a thread you follow. It goes among
things that change, But it doesn’t change.
People wonder about what things you are pursuing.
You have to explain about the thread.
But it is hard for others to see.
While you hold on to it you can’t get lost
Tragedies happen; people get hurt
or die; and you suffer and grow old.
Nothing you do can stop time’s unfolding.
You don’t ever let go of the thread.

Maybe the thread is love. ( I know its an overworked, meaning many things kind of word. I couldn’t think of a worthy substitute for this mystery we know in part.)What if dementia is a crucible of love-making, of love-formation? Could this be the tread—this journey as a school of learning how to love and be loved more fully? On the surface, it looks like this journey is full of ordinary, unnoticed, unending small things you do. But is the thread exploring the truth in Mother Teresa’s word: “You cannot do great things, you can do small things with great love?” Could that be the thread?

In some sense, learning to love and be loved is the thread for every person. Each one of us came into this world crying, and for good reason. We were terrified, thrust into a vast world of not knowing, so totally vulnerable. We trusted, from somewhere deep within us, that someone, something would hear our cry, pick us up, hold us, love us. In some form this pattern of risk-taking repeats itself all though life. It’s the human journey, over and over again, releasing one trapeze bar, trusting the next bar coming toward us. The choice is regularly before us: do we contract, close our fist, cling to the bar in fear, or do we expand, open our hand, trusting the bar coming toward us. For some of us we have experienced our relationships mostly trustworthy. We are the fortunate ones. And, it seems, this drama between shrinking in fear and trusting in love carries us all the way to death, to our final letting go. So, I think we can say, learning to love and be loved may be the common thread that all of us are invited to follow and hold on to.

But for you on this journey of dementia you experience this drama in bold relief. It’s love, the force of love that draws you to this conference. You care enough to come and learn. If you didn’t love, you wouldn’t be here. And also if didn’t love, you wouldn’t hurt. Because your love opens you to the pain as well as the possible joy of vulnerability. I am only saying what you already know. Love leads to pain. That’s an obvious truth.

What is not so obvious is the reverse possibility: pain can lead to love. If you embrace this hurt, feeling deeply this threat and pain, your capacity to love may enlarge. By taking this journey to heart, your love can deepen and widen and lengthen. I have seen it.

I saw this happen in my mother. She made a choice at a critical time in my father’s illness. She struggled against the clutches of an addiction, sometimes losing the battle. But when my father needed more of her, she arose to a new level of loving. Her calling, even privilege, to care for my father became stronger than the pull of her addiction. I witnessed it. Her capacity to love enlarged in a magnificent way.

I hope that this enlargement of love includes yourself. I don’t know why, but we human beings seem to internalize a huge dissatisfaction with ourselves. In all my years in a people-oriented profession this truth still mystifies me: we are the hardest judge of ourselves. Deep within every person I know, including myself, is this feeling of inadequacy, not being enough. The hardest work, if you choose to follow this thread, may be to love yourself as you love the other, or even more profound, come to see that loving the other is loving yourself and loving yourself is loving the other. It’s a wondrous paradox that we can experience on occasion: that we fulfill ourselves as we give of ourselves to the other. It can be the difference between care-giving and care-partnering. Yes, we give care to each other but sometimes it feels more like a partnership, a give and take, transcending the “I give to you” and “you take from me.” Care-partnering, the rich blending of the in-between part of loving. Care-partners.

All the sacred traditions agree on this one truism: love is not what you have, love, on its profound level, is what has you. Love is not what you possess; love is what possesses you. Love is a river whose currents carry you. Love is a spirit that in-spirits, inspires you. Love is a solid mountain, not the unpredictable weather of various emotions. Love is the symphony that plays it unique, beautiful music in your intimate relationship. And each sacred tradition offers practices—like prayer, meditation, worship, reading, walking, writing, listening—regular practices that help you connect and live from this Source of love that is larger than yourself.

Could this be the tread—being transformed more fully into lovers? Are these challenges on this journey, in part, challenges that keep deepening your capacity to love and be loved? Is this inner, invisible work the thread to follow through all that changes?

So what’s the tread you follow? I have played with some possibilities only as a way to stimulate your exploration. I don’t know what thread or threads you will discover by living this question. It’s the question I leave with you: what’s the thread you choose to follow through all these changes?

I say “choose” because you have a choice. You have a choice to how you respond to the heartaches and joys of this particular journey.

From one sacred tradition comes this metaphor. When we face a major personal challenge, there will be two pointed arrows embedded in the crisis. One arrow is the crisis itself. The other arrow is our response to the crisis. The first arrow is given. The crisis comes unannounced, unwanted. But the second arrow is our response to the challenge. The first arrow we do not choose; the second arrow is our choice of response, our respond-ability, our ability to respond.

Victor Frankl, a survivor of a Jewish extermination camp wrote a small book about his experience. His discovery became a perspective, a re-frame that changed my life. Frankl—for being a Jew—was abducted and imprisoned in a Nazi death camp. Everything was taken from him: his freedom, his wife, his friends, his home, his country, his book manuscript, his clothes, his hair, his name—everything. Being a young mental heath professional, he treated the experience as a research project. He began to observe his fellow inmates and his own reactions. This he discovered: there was one thing that could not be taken away from him—his freedom to respond. He could choose, and he did, to find meaning even in that experience.

There are two kinds of questions you are asking: knowledge questions and sacred questions. Both sets are crucial but different. Knowledge questions seek information, facts, ideas, understanding. Knowledge questions find clear answers. They are the work of the mind. But sacred questions seek wisdom. These questions are never fully answered. Sacred questions you live, not resolve completely. They take a life-time. They are the work of the heart.

I am asking with you a sacred question. What is the thread you follow though what changes, through the tragedies that happen, the hurts, the suffering, the growing old, through time’s unfolding. What’s the thread that doesn’t change, the thread that’s invisible, the thread you don’t ever let go of?

There is a thread you follow. It goes among

things that change. But it doesn’t change.

People wonder about what things you are pursuing.

You have to explain about the thread.

But it is hard for others to see.

While you hold it you can’t get lost,

Tragedies happen; people get hurt

or die; and you suffer and grow old.

Nothing you do can stop time’s unfolding.

You don’t ever let go of the thread.

–William Stafford