A Spiritual Perspective on Alzheimer’s

As Unitarian Universalists, we have a spiritual perspective we affirm. We affirm (in part):

  • the inherent worth and dignity of every person;
  • the free and responsible search for truth and meaning.

We affirm, we affirm.

But how might we understand these affirmations in light of Alzheimer’s? It is “one of the most cruel of diseases,” says the Rev. Eugene Picket, Minister Emeritus of this congregation, whom I contacted just recently by email. “Helen,” he replied, “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!’”

And as for the person with Alzheimer’s themselves? One of the patients of a New York doctor, a Dr. Alan Dienstag, once said, “I feel like a picture that’s fading; every time I look, there is less of me here. I almost don’t recognize myself.”

Imagine your three-pound brain as a forest of 100 billion neurons, all interconnected through electrical discharges and chemical neurotransmitters. But the disease of Alzheimer’s disrupts this; Alzheimer’s pollutes the neuron forest and the brain goes haywire, the interconnections are gunked up, the brain literally shrinks. That’s the inner, physiological basis of what folks experience in terms of outer behavioral and personality changes. Family and friends see the same face and form, but, as the disease progresses, from mild to moderate to severe, the person becomes increasingly different from how they’ve always been known through the years.

It’s like a real-life version of that 1950’s science fiction movie “Invasion of the Body Snatchers.” It looks like him, but it’s not him. It looks like her, but it’s not her.

And the heart breaks, because where is he? Where is she? How can they possibly not know me anymore?

For the primary caregiver, 24 hours no longer seems enough to do all that must be done. From increased memory loss and confusion in their loved one; problems recognizing family and friends; continuously repeating stories, favorite wants, or motions; difficulty doing things that have multiple steps, ?like getting dressed; lack of concern for hygiene and appearance—from these moderate symptoms, to severe symptoms like inability to recognize oneself or family; inability to communicate; lack of control over bowel and bladder; groaning, moaning, or grunting; needing help with all activities of daily living. From these all the way to the loved one’s death: the prospect is completely overwhelming. How to not feel eaten alive by the responsibilities? How to survive this?

Alzheimer’s is a terrible, terrible place.

But listen to the witness of Anne Lamott, an amazing writer, who says two things we need to hear right now. One is: “Human lives are hard, even those of health and privilege, and don’t make much sense. This is the message of the Book of Job: Any snappy explanation of suffering you come up with will be horses**t.”

And then she says: “You can’t get to [spiritual] truths by sitting in a field smiling beatifically, avoiding your anger and damage and grief. Your anger and damage and grief are the way to the truth. We don’t have much truth to express unless we have gone into those rooms and closets and woods and abysses that we were told not go in to. When we have gone in and looked around for a long while, just breathing and finally taking it in – then we will be able to speak in our own voice and to stay in the present moment. And that moment is home.”

This morning we are embracing life as we find it in a terrible place. We are avoiding snappy explanations. We are going into the abyss and we’re going to take it in and we’re going to find the voice that is our own and we’re going to find home.

So we go back to the Unitarian Universalist affirmations I mentioned earlier:

  • the inherent worth and dignity of every person;
  • the free and responsible search for truth and meaning;

But the question at this point is, How can these affirmations possibly make sense, when it seems that Alzheimer’s strips everything of worth and dignity and freedom and responsibility away? This was certainly my question when I was a seminarian in Chicago almost 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 like us: way too busy reading ahead in the hymnal to get into the spirit of the song, because they didn’t want to sing anything they didn’t intellectually understand. But when I saw them, everything had changed. Alzheimer’s. Some of them took to roaming the halls, rummaging around in other’s 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 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 right now. Without a capacity for memory or rationality or learning, what gives life meaning?

Does our spiritual way of Unitarian Universalism survive the acid test of Alzheimer’s?

I believe the answer is most definitely YES. But the way to that answer requires something of us. It requires us to expose the assumption that meaning comes from only our individuality and self-reliance. Perhaps we lean hard on that assumption because it is so very American to do so. Yet America also teaches us “out of many, one.” It teaches us “government of the people, by the people, for the people.” Individuality is balanced by community. Meaning comes from both aspects of human reality. If, in the case of Alzheimer’s, a person loses capacities that are more on the side of self-reliance, there is still a source of meaning left, and it is larger than any individual.

Yes, Alzheimer’s can feel like oblivion. But listen to what my colleague the Rev. Roger Jones says: “[I]n the unfolding of the universe, every good time, every act of goodness or beauty, becomes an everlasting part of the universe. [None] of our contributions is lost; they all become part of the unfolding of creation. They belong forever to the divine life in which we participate. Every gift of music or poetry, every meal cooked and enjoyed, every garden we tend, every kind word, every loving touch, every moment – these gifts are everlasting parts of creation. The fruits of one’s life extend beyond its conclusion. When we try to be of help, a kind word might seem pointless if the other person forgets it in a few minutes. Yet in words of the ancient storyteller, [Aesop]: ‘No act of kindness, no matter how small, is ever wasted.’ In the unfolding of the divine life in which we participate, whatever we give, however we serve, such gifts are not lost.”

The Rev. Roger Jones is reminding us about our Seventh Principle as Unitarian Universalists, which complements the First. “We affirm respect for the Interdependent Web of All Existence of which we are a part.” Even if the part feels lost, in the whole it is found. In the whole it is lighted up, lifted up, lightened. Our fragile human individuality need not bear the total burden of making life meaningful.

One of my personal prayers, which I pray every time I feel like I have fallen short, 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. My ego steps back from trying to be like God, and I don’t insist that I have to force meaning onto everything or be the total source of meaning. Meaning flows, meaning happens, meaning is larger than me.

A good thing to know in the face of Alzheimer’s.

But now that we have contextualized our individuality and remembered that it’s not the sole source of meaning, let’s double back and take a closer look at it. It’s true that Alzheimer’s strips away our self-reliance capacities for remembering, reasoning, learning new things, and taking responsibility for our actions. But is that equivalent to stripping away everything? Is nothing left that could also be a source of dignity and worth and meaning?

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, 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 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…”

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 is 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.

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 singing along with me, dredging up those old words from who knows where. The 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 the Engaging Meditation and the lights go down and I ask you to close your eyes and breath in deeply and then out, when I ask you to hold a hand against your heart and say a kind word to yourself, when we, in short, engage our religion bodily, in all the ways we do that, for all ages, we create memories that Alzheimer’s 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, when anti-racism activist and writer Tim Wise heard that Bruce Springsteen opened his recent Brooklyn concert with a rendition of “Purple Rain,’ he said, “Aside from what an amazing tribute this is, I think it speaks to something bigger than the tribute itself. It says something about the camaraderie of art… Regardless of musical genre, regardless of age, regardless of race, regardless of any of the bulls**t that keeps us divided…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.”

Yes. Art touches the deepest inward springs that remain, even after “invasion of the body snatchers” has happened, even after the forest of 100 billion neurons in the brain is all gunked up and polluted and no longer working.

Let me close with a word about art, or the kind of art that is most relevant here. Rev. Pickett touched on it in his email to me when he said, “As a full-time caregiver, I have learned to be much more patient, flexible, and compassionate. While [Helen] cannot express herself verbally she is sensitive to the tone of my voice and the expression on my face.”

In other words, the way to affirming the inherent worth and dignity of a person with Alzheimer’s is through the art of compassion. “Compassionate speech,” as Gisela Webb puts it. “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.” It’s just like Julie Weisberg said in her reading from a moment ago: 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 ‘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.”

This is how we affirm inherent worth and dignity, and not just with folks with Alzheimer’s, but with everyone. 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,

it’s home,

fully home for the human spirit.

Alzheimer’s proves it.