The Zen of Dementia

Jean McGill, the Zen Mom, becomes more of who she really is with dementia

My Mom is now 94 years old and since her mid 70s or so has suffered from progressive dementia. In the early days she was just losing her car keys and dropping a word here or there. Later, she would wander and get lost, or at the retirement home where she lived for a while, she would take other people’s clothes back from the laundry room, fold them up and put them in her dresser drawer. Over time, she lost track of what day it was, what country and what city she lived in, and she forgot the names of her children. For a long time we four children consoled ourselves that even though Mom had forgotten our names, she at least remembered “who we really were.” But even that is gone today.

Last week when I visited Mom, she looked and me quizzically and said: “Who is here?”

The title of this short piece is “The Zen of Dementia” and it tries to convey a point. This point contrasts with the fact that Mom has to all appearances lost most of her memory, her capacity for complex and abstract thought, and almost all language except the words “yes,” “no” and “here.”

And yet, and this is my point, to my eyes all of this loss has not damaged or in the least bit diminished what I take to be Mom’s essence.

This vital essence appears to me today exactly as it did when I was a little boy, and later as a teenager in Mom’s house, and then later as an adult living on my own, continuing to today when I am feeding her, cleaning her and caring for her.

I see Mom in this way, as utterly undiminished in her utmost essence, and still shining and enveloping me with the overflowing love she shared with me and my siblings unstintingly throughout her life. As a result of seeing Mom in this way, I am baffled and at a loss when I meet dear friends who don’t experience the dementia of their parents and loved ones in this way. Out of their compassion, for which I am sincerely grateful, they nevertheless characterize progressive dementia as an unmitigated tragedy, as a period of mounting losses, one after another, that takes away the essence of a person and leaves them bereft of what made them, in an earlier day, most “themselves.”

In my experience of my mother’s dementia, the opposite is true. As she has lost one after another physical and mental skill, she has instead become more and more the person who, to me, she essentially always was. Her smile over these past 15 years of physical and mental loss has become more spontaneous and sincere. Her laughter — and she still does laugh — has become softer and more purely light-hearted without a trace of irony, nostalgia or regret. Her gaze has become more open and eager and her love more achingly pure and direct.

When I hold her frail body in my arms today, I feel not weakness and degeneration, in essence. Instead I feel a pure energy, a strength and an invulnerability that transcends the physical so greatly that the two — her frail body and mind on the one hand, and this great pulsing of life on the other — that the two could not even rightly be compared. Moreover, this invulnerable energy and pulsing power appears to me to be intelligent to the point of genius.

The weak body and mind of my mother, which they say today is near to death, nevertheless is still awesomely alive and joyously breathing, and still most of all is interacting with the world in infinite subtle and wise ways that add up to nothing less than the miracle of life itself. Today when I go to see her, very often Mom is dozing or inwardly roaming when I greet her and so her eyes remain closed as I pull up a chair, kiss her forehead and hold her hand.

When I hold her hand and squeeze, she squeezes back. And in that one squeeze I feel that infinite intelligence, and that generous life, and I almost die with love.

So how could I ever say that my Mom in this profoundly diminished physical and mental state is “a shell of her former self?” That she “isn’t the same Mom that I once knew?” She is the same Mom as I always knew, in her essence, and she is still sharing that essence — now with her direct gaze, her squeeze, her pure presence. When she shared her essence with me when I was a child, it wasn’t her physical strength she was most essentially sharing with me, nor her memories, nor her words or all the concepts she’d absorbed in her lifetime.

Rather, I experienced from her then a raw power and a warm loving intelligence far beyond memory and language. It was simply her, and I experience this essence again very purely again today, more poignantly than ever.

Moreover, in the midst of her dementia, Mom sometimes actually formulates and shares what I take to be deep universal wisdom from reality as she is experiencing it today. This reality is one in which, due to her dementia, her memory, conceptual ability and language to a very large degree have been subtracted from her experience. The fact that enormous wisdom now often spontaneously overflows from Mom tells us something, I believe, about the true role and importance of concepts and language — of the thinking mind we so revere — in the great scheme of life.

Because when we subtract them, wisdom doesn’t necessarily diminish but can actually expand. To me Mom’s example says that our thoughts and language usually veil our innate wisdom and boundless love, far more than they express them or bring them forth. Because again, in her case, as the mind has receded, love and wisdom have flowed forth more than ever.

For example, consider what Mom said to me just the other day when I went to see her at the senior home. She was dozing in her sofa chair. When I held her hand and said hello, she briefly opened her eyes and, with a questioning look on her face, she asked sincerely: “Who is here?” In response, drawing on my knowledge of Buddhadharma, I responded: “That’s a very good question, Mom, let me reflect on that.” In other words, I understood Mom’s question as an expression of a deep universal intelligence that is flowing from her constantly during these days of her supposed physical and mental decline.

All that I need to do is not to dismiss Mom as a dementia case but instead to take her seriously — every breath of her, and every word and question. As a meditator in both the insight and direct path traditions, I know that if I take Mom’s question seriously — “Who is here?” — it will literally take me on a meditative journey that the Buddha called The Noble Eightfold Path.

It will lead to ultimate peace. Using not concepts but our actual experience as a reference, we can ask “who is here?” as our one guiding spiritual question and ultimately arrive at a point where our sense of a personal self dissolves. Instead, we will come to know ourselves not through the illusion of identity and personality, but instead, as a temporary and local expression of universal, infinite and eternal love. This can sound abstract but I know it directly in my Mom’s smile or by a squeeze of her hand. If I need to recruit the mind also, her question “Who is here?”, also leads me to peace.

There was a time, a few years into her progressive dementia, when Mom was losing language but still had enough to formulate whole sentences. They were fractured but still expressed truth in a pleasantly jarring and illuminating fashion, very much in the same way that profound Zen riddles and koans do.

For example, one evening I was about to drive Mom home when she looked up at a glorious full moon and said, “Oh, look, isn’t the sun beautiful tonight?” “Mom, that’s the moon not the sun,” I said. “They’re the same, aren’t they?” she replied.

And of course she was right. When we look at the moon what we are actually seeing is reflected sunlight. So what she said made me look more deeply into reality and to recognize an ongoing miracle I would otherwise have ignored.

Another time, taking a walk with Mom, our arms linked, I asked her about a new pair of shoes I had bought for her that day. “Do your new shoes fit you?” She was silent for a few moments as we walked and then said, quietly, “You fit me.”

Very often in this middle period of dementia, when Mom still could walk briskly and also could talk a little bit, yet was often confused, she would get flustered and frustrated in small groups when the time came for her to say something. Especially at the beginnings of conversations, when people usually share an opening pleasantry, Mom didn’t know what to say.

In these situations she would hesitate, think hard about what to say, and then invariably would say this to everyone: “Well, we’re here. You’re here, I’m here. What else do we need?”

One time as she and I were leaving the dark confines of the so-called “Memory Care” unit where she was then living, she looked up at the beautiful blue sky, smiled broadly and delightedly exclaimed, “Oh, everything! And you too!”

Mom was an artist during her adult life and to my eyes, her ability to notice the world around her, taking delight in what she sees, and indeed looking very skillfully in the sense of noticing everything around her, has not been diminished in the slightest by her dementia. This is a way of saying that her awareness — as distinct from her memory, language and conceptual ability — has not in the least been harmed our even slightly touched by her dementia. Indeed, her awareness has seemed to expand as her language and memory have collapsed. With this her sense of self has increasingly appeared to merge with nature around her.

One time, as she sat next to an open window through which a gentle breeze was blowing, she quietly said: “I don’t really feel myself. I just feel the air, the cool air on my skin, and that’s me.” She found a rugged old rock once that she brought in and put on the kitchen counter. “What’s that?” I said the first day she’d put out the rock, pointing to it. Taking the question seriously, Mom looked at the rock pensively for a few moments and then said simply, “It’s me.”

The breakthrough that is sought by spiritual seekers across virtually all wisdom traditions is non-dual consciousness. That is, to live in knowing awareness that who we are in our essence is not just linked to, but is inseparably one with our surroundings and the universe itself. The only thing we ever experience is experience itself, which in essence is a knowing, and this knowing includes all.

In her dementia, Mom seems to have discovered this bliss consciousness and now to live in it. One autumn day last year, walking outside amidst piles of leaves fallen onto the sidewalk, Mom spent our whole walk looking down at the ground, occasionally picking up a beautiful leaf to stuff in her pocket.

“There’s nothing down here that I don’t like,” she said. “It’s just fine. Anywhere is anywhere.” Another time, sitting at the kitchen table, she said out of nowhere: “I don’t know if I can go anywhere now. I’m just where I am.” Another time, sitting on her couch, she was very obviously not dozing but instead had her eyes gently closed as she sat still, as if meditating. When her eyes opened, I asked immediately what she’d been doing. “I was into what I was,” she said.

Mom now basically has only three words: “No,” “yes,” and “here.” Among these, the word “here” is her favorite. She uses it so often, and in so many circumstances, it’s as if she is trying to drive home the lesson that no matter what we think is happening in the world, or what we think is our place in the universe, what we most need to do is understand that at all times, everything is happening right here. And that it’s our job as human beings to get comfortable with that.

These days, if she doesn’t say “Who is here?” when she sees me, she simply looks at me with a smile and says, “You’re here,” or sometimes “we’re here.”

One day when she opened her eyes to greet me, she looked around briefly before she spoke and then simply said, “This is what’s here.” That’s all, and when she said it I took it as a lesson I still need to learn, to absorb and to dissolve into.

My Mom has done that and is still doing that. In this way, more and more, to my eyes, she is becoming the pure essence of everything around her. In other words, as she diminishes physically and mentally as a result of old age and dementia, she is expanding greatly, indeed towards infinity and eternity.

What can we call this increasing intimacy with everything, this dissolving into everything that Mom is experiencing and sharing with her Zen wisdom?

What word best describes this expanding intimacy with everything?

Mom never lost anything but what she wasn’t. So over time, to me, as dementia has taken away more and more of what she never was, she’s only become more and more of what she essentially was and is. Which is, quite simply, love.

Copyright @ 2016 Doug McGill

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