It is “one of the most cruel of diseases,” says the Rev. Eugene Pickett, past-President of the Unitarian Universalist Association, and my friend of many years. “Helen,” he says, “the love of my life for 63 years, is now suffering from moderate to severe dementia. […] She has lost most of her ability to recognize those around her, even me at times, and our daughters. She will look at me and ask, ‘Where is my husband?’ I will respond, ‘I have been your husband for over 60 years.’ She will say with surprise in her voice, ‘Really!?’”
Alzheimer’s disease is by far the most common form of dementia, but there are many others too, and what characterizes them all is that they appear to undercut a person’s ability to practice a central principle of our faith: “the free and responsible search for truth and meaning.”
So what might that mean, about being Unitarian Universalist?
Is the “free and responsible search” an essentially intellectual search?
Does “inherent worth and dignity” belong just to people with pristine minds?
“I feel like a picture that’s fading,” says one Alzheimer’s patient: “every time I look, there is less of me here. I almost don’t recognize myself.”
But would Unitarian Universalism itself say something similar? You’re not what you were. I don’t recognize you anymore.
That’s what we’re looking closely at today. How dementia challenges us to expand our sense of what it means to be Unitarian Universalist. Or, for consistency’s sake, to be forced to admit that our faith is narrowly centered in intellect, and to accept all that that implies.
That’s our focus today.
It was certainly my focus when I was a seminarian in Chicago 20 years ago, and I was working with Alzheimer’s patients as part of my pastoral care training. Wallace Rusterholtz, Erica Weinberg, Anna Viscount, Helen Rice, Eva Clark, Jean Bowman-Anderson. Assigned to me because all had been long-time Unitarian Universalists, all lovers of high culture and books and conversations. Folks who justify a common stereotype about Unitarian Universalists, that they/we are way too busy reading ahead in the hymnal to get into the spirit of the song, because we don’t want to sing anything we don’t intellectually understand.
But when I saw them as patients, everything had changed. Because of Alzheimer’s. Some of them took to roaming the halls, rummaging around in others’ rooms, taking other people’s clothes and putting them on and also taking clothes off, stripping down, just anywhere. Boundaries of privacy and shame dissolving, boundaries of “mine” and “yours” dissolving, along with other aspects of the rational self. Dissolving. No hope in expecting them to learn to do otherwise, because without memory, new learning is impossible. All you have is the moment. A window of now that closes as soon as it’s opened.
Now, now, now, now, now.
That’s what happened to these people who had been brilliant Unitarian Universalists and had once loved their intellectual conversations and their books.
My colleague the Rev. Mike Morse once said, “If the meaning of life is intrinsically linked to our ability to think, to reason, to weigh differences rationally, and thus make decisions, then it is meaning that is slipping away.”
That’s what I wondered long and hard about, as a seminarian in Chicago all those years ago, and we’re wondering about it together, in this moment. Without a capacity for memory or rationality or learning, can life be given meaning?
Does our spiritual way of Unitarian Universalism survive the acid test of Alzheimer’s and other forms of dementia?
I believe the answer is most definitely YES. But the way to that answer requires something of us. It requires us to expose and reject the assumption that the search for meaning starts at zero and is a straight arrow journey from one’s own self outward, possible only through exertions of individual intellect and self-reliance.
Perhaps we lean hard on that assumption because it is so very American to do so. It is so very American to dream of happiness as something built from scratch and coming from one’s own efforts and one’s own initiative.
But America also teaches us “out of many, one.” It teaches us “government of the people, by the people, for the people.” It teaches us, “It takes a village…” Individuality is balanced by something larger than the individual. Meaning comes from the part, but it also comes from the whole.
An even better source of this larger view comes from the ancient philosophy of Stoicism. Stoicism teaches that the individual self is always already nested in progressively larger realities, and even as the self reaches outward in meaning making, the larger realities reach inward to us and do their own meaning-making work upon us, as they impact us.
And so, beyond the self, there is the family. Beyond family, there is community. Beyond community, there is the nation. Beyond the nation, there is the world community. Beyond the world community, there is the earth ecosystem. And beyond the earth ecosystem there is the Great Mystery. All of these greater realities hold us, impact and inform us, reach towards us even as we as individual selves reach out to them.
This is a powerful way of articulating our Seventh Principle as Unitarian Universalists, which says “We affirm respect for the Interdependent Web of All Existence of which we are a part.” Even if the individual part seems lost—even if the part can no longer reason, or remember, or decide–in progressively larger wholes it is found. In the whole it is lighted up, lifted up, lightened.
It still belongs.
If I have Alzheimer’s, meaning is made when my caregiver redirects me kindly, speaks to me warmly. I receive that meaning. I don’t have to make it, for the meaning to be real.
Our fragile human individuality and intellect need not bear the total burden of making life meaningful.
All our lives, we are in need of others, and others are in need of us.
One of my personal prayers, which I pray every time I feel like I have fallen short–so I pray it all the time–is this: I trust that no matter how flawed or limited my contribution, the Universe will eventually, in some way, turn it into some good.
I give myself in trust to the Universe. That is my prayer. I need to do that every day, every moment. My ego wants to step in and act like God—it wants to act, in fact, like the controlling and critical God I don’t even believe in!—but every day and every moment I need to embrace a wiser humility, I need to stop insisting that I myself have to force meaning onto everything or be the total source of meaning.
Can you relate?
Meaning is larger than us as individual selves, meaning often happens to us as a gift of grace which we have in no way earned.
This is what we Unitarian Universalists need to know in the face of dementia of every type but also in the face of just the everyday challenges of life that we can’t control, that we can’t decipher this instant, that are too big for us to handle all by ourselves.
We need to know that–and we need to know something else.
Alzheimer’s strips away our self-reliance capacities for remembering, reasoning, learning new things, and taking responsibility for our actions. Yes, it’s true. From this, it’s tempting to conclude that dignity and worth themselves have been stripped away.
But it’s not so. Our First Principle, affirming inherent worth and dignity, is founded upon bedrock that goes deeper than thinking.
A clue comes from something that theologian Gisela Webb points out, whose academic training in comparative religion was enriched by her practical experience, over the course of 16 years, with her mother’s Alzheimer’s. “As nurses know,” she says, [around Alzheimer’s patients] “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…. I call Alzheimer’s the great unlearning,” she goes on to say, “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 … 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…”
In other words, despite the “great unlearning,” still, we affirm the inherent worth and dignity of every person. We do this because there is a source of worth and dignity and meaning in people that lies deeper than rationality, deeper than intellect….
I saw this unfolding before me when I would sing with my Alzheimer’s patients back in Montgomery Place, 20 years ago. Wallace Rusterholtz, Erica Weinberg, Anna Viscount, Helen Rice, Eva Clark, Jean Bowman-Anderson.
Amazing grace, how sweet the sound
That saved a soul like me.
I once was lost, but now was found,
Was blind, but now I see.
It was like a dry flower being watered. Slack faces and blank stares went away, and life swept into the room. People who had forgotten everything started singing along with me, dredging up those old words from who knows where.
There is emotion in the heart that is too deep for even the acid of Alzheimer’s to burn away.
“It was striking to me,” says Gisela Webb, “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.”
As it should for our reflection as well. When we sing “Amazing Grace” or our Unitarian Universalist version of that song called “Spirit of Life”; when we light our chalice; when we enter into a moment of silence together and I invite us to collectively inhale together and exhale together; when we engage the ritual of cards and stones; when, in short, we engage our religion bodily, in all the ways we do that, for people of all ages, we create memories that dementia can’t touch. Our religion, not in its verbal form but in its bodily feeling, survives as a source of beautiful dignity and worth and meaning….
There is good reason why it is said, “I may forget what you said, but I’ll never forget how you made me feel.”
We are speaking of art, now. Anti-racist activist and writer Tim Wise says “art is always the thing that elicits our humanity. It is the only thing, I beg to remind you, that can save us in the end as well. Science can not do it. Politics sure as hell cannot do it. Only art stands even the remotest chance.”
To truly invest in the growth of our faith tradition, we must invest in how it is artfully expressed.
The acid test is Alzheimer’s. When a Unitarian Universalist’s brain and its 100 billion neurons are all gunked up by Alzheimer’s and not working as they used to, and yet that person sings Unitarian Universalist songs and and yet that person practices Unitarian Universalist rituals, then we can know our faith tradition truly lives.
I’ll close with a practical word about how to affirm the inherent worth and dignity of people with dementia. It is through the art of compassionate speech. Gisela Webb speaks to this. “Compassionate speech,” she says, “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.”
So—be in the reality of the Alzheimer’s patient, rather than insisting that they be in yours. Do this out of compassion. Let anxious insistence on matters of verbal correctness fall away. Let matters of the heart shine through.
“Once,” Gisela Webb says, “when I was [walking with] 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.”
This is how we affirm inherent worth and dignity, and not just with folks with Alzheimer’s, but with everyone. Let us all be like this with each other. Through speech that overcomes duality, speech that bridges the distance between self and other because it is kind speech, the tone is kind, the nonverbals are gracious and kind. As intelligent people we love our words to death, we love sharp exactitude, we want our reports and resolutions to be perfect. But Alzheimer’s is the acid test. It shows us what truly matters, and endures.
Love, kindness, a song in the heart, the spirit underneath the words, HOW something is said.
To the degree our spiritual way comes from this,
does justice to this,
West Shore can truly be a home for the human spirit.
And what has shown us the way?