Who Are We Without Our Memories?

An hour comes
to close a door behind me
the whole of night opens before me

—W. S. Merwin, “Memory of the Loss of Wings”

Hetty gives me a quizzical look as I take a seat beside her in the memory unit. “How are you doing today?” I ask.

“How should I be doing?” she answers, like she always does, then says, “Do I know you?” I tell her that we’ve met a few times, but she sees so many people every day that she may not remember. “I’ve probably told you my story,” she says.

“Well,” I reply, like I always do, “you’re a hundred and two—there’s a lot more to tell.”

“A hundred and two?” Hetty exclaims. “Goodness me!”

Over the months of our visits, I’ve heard about the ship that brought Hetty and her Jewish family over from the Netherlands between the Wars—there was already an uncle in Brooklyn. About the synagogue around the corner, and the vacant lot she’d cross to get there. About her faith, and how the family celebrated the Jewish holy days in the New World. I’ve heard about her accountant husband, of blessed memory, and their three children, and a trip cross-country in the Volkswagen camper . . . and there the reminiscence stops flowing. The closer we get to the present, the more the mists settle around Hetty’s memories until the fog becomes too impenetrable to negotiate.

For many of us, the thick fog of memory loss is one of the most fearsome things we can imagine. Just as what is perceived by the eye can be reduced to shape and color, what we perceive to be ourselves and others as individuals might be encapsulated in the inconstant trio of memory, personality, and form. Without memory, what is knowledge? Who do we become when what we think we know starts to slip away?

Normally, our interactions are based on guesswork, conscious or not, about what others are experiencing and what their reactions are likely to be. But people living with dementia don’t seem to be processing the world as we do. For them, emotions tend to preempt conceptual thinking; they may not be able to communicate desires, joys, and fears verbally; reasoning can take unexpected turns; moods can be unpredictable. Some people react to memory loss and the dependency that ensues by becoming aggressive or withdrawn.

It’s painful and confusing to feel cut off from the life of someone we care about. It may seem as if the person we knew is gone forever, since many of the things we used to connect over no longer apply. In truth, though, we still share the same basic needs, including self-esteem, agency, a sense of usefulness, and opportunities to care for others. In my role as a chaplain, I once spent time visiting a Catholic nun whose dementia was progressing very swiftly. Sister Anne was distant, and she seemed subtly ashamed, as if her illness were a sign that she had somehow disappointed God. We didn’t really exchange much until I asked her to help me understand what she, a woman of faith, was experiencing so I could better be present for others. This she could do. Our dialogue was truly precious for me, and it naturally transformed our relationship.

For people living with dementia, mindfulness practice—especially guided meditations of the “leaves drifting down a stream” sort—can be very beneficial. Therapist Ymkje Dioquino of the Presence Care Project, which promotes greater ease in dementia care, says that the sooner people showing symptoms of decline begin to meditate, the greater the potential effectiveness, as meditation has been shown to fortify brain health. She suggests that both the care partner and the person with dementia may benefit from meditating together as regularly as possible. This can become increasingly important as the disease progresses, since those who are ill will be parroting their partners and depending on them for support.

For care partners, working with memory loss and dementia is an invitation to shift away from the habitual focus on past and future, and to more fully embrace the freshness of not knowing, not doing—to simply accommodate what is happening right now. Mindfulness encourages us to recognize and work with our feelings and remain open to the in-your-face unpredictability of the present moment. It provides tools that help us cope with the intense demands of caregiving and fend off the anxiety and depression that plague fully 50 percent of caregivers.

Awareness of the truth of suffering and impermanence always provides fertile ground for spiritual practice. In my tradition, Tibetan Buddhism, lojong [mind training] lends itself naturally to deeply challenging life situations like these. Tonglen—the contemplative lojong practice of inviting others’ pain on the in-breath to relieve them of it, and sending them peace and well-being on the out-breath—fits right in, especially if you’ve been doing it long enough for it to feel natural. The lojong maxims, such as “Join unexpected events with your practice,” “Put the most important things into practice now,” and “Do not crave thanks,” are effective reminders that every circumstance can further our practice as bodhisattvas in training. Visualization practices (such as Chenrezig, the Bodhisattva of Compassion), are also well-suited. They give us a framework for developing compassion in action while reminding us that our experience is empty of any permanent, solid, objective reality. Recognizing the emptiness component is essential to letting go, and letting go is essential to well-being and realization.

Philosophically, my tradition holds that mind is inalterably pristine, luminous, and aware; mind creates our experience of form, and not the other way around. This resonates with me. If I accept that the mind is not a by-product of the brain, but rather that my experience of physical reality, including the brain, is an ultimately insubstantial union of mind and karma, then I can accept that even as the brain deteriorates, the luminous nature of mind abides.

We simply don’t know what levels of awareness shine on beyond the mists of dementia. We can’t measure the scope of our efforts to connect through practice, prayer, song, or touch. But we can remain open to discovering the moment, and this may lead to unexpected sweetness.

Just as Hetty and I are wrapping up our conversation, a dapper old gentleman sporting a bow tie shuffles by. “Willem,” I call out, “would you care to join us?” Willem, originally from Belgium, also lives in the memory unit.

“Have we met?” they ask. I introduce Willem and Hetty to each other, and soon the newfound friends are happily chatting away in Dutch, just like they always do.