Being with dementia

What does it mean for us to dependently arise with those dying from dementia?

As I walk into the room, she is curled up on her hospital bed, just a few inches from the ground to prevent her from falling. The blinds are closed, the room is dark. Its late morning on a sunny winter’s day but you’d never be able to tell. Already, we are in another world. Hello, it’s me, Emma, the chaplain, I say at a low volume, unsure if she’s asleep. I walk around to the other side of her bed and her eyes are open. They fix on me and widen in tandem with her big, bright smile. Helloooo! The momentary stillness of wondering if she’s still breathing goes away and we are together.

I was able to visit her about half-a-dozen times before she died. She lived those final months in the memory care unit of the facility where I work. On this particular day she identified me as her best friend from childhood and we spent a joyful twenty minutes together, I as her chaplain, she as my patient…I as her best friend, she as mine…I as her tether to reality…she as my tether to another reality.

I don’t know where the mind goes as it is changed by dementia, but fortunately my religion doesn’t ask such questions, it just asks me to show up. Buddhism doesn’t ask where we come from and it isn’t concerned with what, when, or how the ending might be. Buddha’s teachings are interested in the predicament we’re in right here, right now, and how we can find our way to more freedom in this very moment.

Getting closer to freedom hinges on one fundamental question—how can we show up to the reality of existence, with love? The dharma asks us to live in the space that comes before conceptions and labels, a place that is in the nature of love due to its innate interconnection with all and its unerring honesty. The reality of our existence is this common, original, loving point. We are instructed that it is possible to be free, to be with this original point, no matter the conditions.

Fortunately, the rest of the Buddhist path is about giving us the tools we need to accomplish this task. Tools that range from seated, walking or standing meditation, to chanting, bowing and ritual practices of all kinds, to teachers, friends and places that challenge and care for us along the way. Slowly, slowly, and with many ups and downs, we practice.

Being with someone who is in late-stage dementia is like sitting on the razor’s edge of the Two Truths—conventional reality, which is our usual dualistic way of experiencing the world, and ultimate reality, which is the original point of depending arising that is underlying each instant of life.

As I look into her eyes, so full of joy and wonder, she holds my hand and tells me how much she’s missed me, and how we used to frolic in the fields when we were three years old. Suddenly, for a split second, I am with her.

I hold her gaze and my hardened conceptions of Self drop away. I am asked to live in the liminal space between chaplain and childhood friend, not abandoning either post, and holding each with an open, steady hand. In her presence, I am both a conventionally existing Me, and ultimately, a me that is not separate from her, not outside of this moment, which is starkly real in its non-linear and time-unbound honesty. She asks me how long it has been since we’ve seen each other and I know that I visited her last week, and I know that we have met countless times before, in infinite manifestations. The pretense of a conventional answer is dropped and the truth of our interdependence is given room to breathe.

She is dying from a mysterious illness that chips away at her Self slowly, and then all at once. Sitting with her forces my usual, conventional framework to shift. I do not abandon conventional reality, because I am responsible for her safety and wellbeing and to abandon this would be an ethical breach and an abdication of responsibility, but if I am going to be fully with her, I must shift my perspective enough to allow ultimate reality to come into view as well.

The ultimate truth is that we are not separate, and we do not exist outside of our dependently arising present moment. Being together can be painful and frustrating if I resist, because she is unable to join me in my reality, but if I’m able to release my concepts and identities for a moment and surrender fully to her reality, I am given an opportunity to practice entering into the before-space. I am given a chance to dive head-first into the ocean of love that is our interconnection.

As I leave her, the tenderness of our time together is just as real as the tragedy of her illness. I walk down the hallway and my heart is filled with gratitude and sorrow, love and grief. I’m already back in this reality with my preoccupations of past and future, self and other. But I can’t help but wonder about the dharma—how it bursts forth in the most unexpected places, and from the most humble teachers.