Dementia sucks.  When a loved one has it, we feel loss, though we might not fully understand why.  If they were to have passed away there may be more clarity about the matter, but they’re still with us physically.  Yet their presence triggers in us questions perhaps about our own identity.  Memory gives us identity.  Memories form who we are and who we become.  Lose memory and we forget who we are.  That is scary for most of us.

Our present actions, words and thoughts are largely determined by memories – both ours and others – of who they think we are, and who they think we are supposed to be.  Our parents passed on to us everything they understood about life – based in their own past experiences – through memory.  They pass on their memories verbally but more importantly non-verbally through their own actions and ways of being in the world.  Our parent’s memories guide us, helping us avoid life’s pitfalls.  But memories, if not questioned, can also lead to a false sense of self. 

What happens when we witness memories fade or even vanish in a loved one?  Does it not, on some unconscious level, shake our own identity?

Depending on how the past has been transmitted to us, maybe dementia doesn’t suck.  Maybe it’s exactly the remedy some of us need to break free from mental prisons that others created for us – other people defining who we are.  When those definitions – preserved in memory – go, it may be like the sound of a skeleton key turning to unlock our mental cage.  We realize we’ve been wrongfully imprisoned, and we have an opportunity to redefine ourselves. 

Is dementia good or bad, then?  It’s a question worth asking, as we generally come down on illness one-sidedly.  Zen practice doesn’t let us take a one-sided approach to anything, though.  Rather, Zen has us hold the non-dual nature of the present moment.  In other words, we hold these opposites – good and bad – lightly without coming down on one side or another.

I have had the privilege (not without sadness) to witness my teacher, Dai-En Roshi, suffer with dementia.  While she is not my parent, she was like a spiritual mother to me.  My memories of being in close physical proximity with her over the years, of hearing her teach, but more importantly, seeing her actions, is my own source of guidance today, even though I am now miles apart from her.  Her own memories, how she got to be who she is, have become part of who I am – the many experiences she had living in Japan, including a phenomenal cross-cultural exchange I describe below – all shaped me. 

Now that her memories are fading, I wish to preserve what I remember.  I feel this deep loss; thus, I also feel a need to write down what she shared as I remember it so as not to lose these memories completely.

At one time, Dai-En Roshi recalled an experience she had with Belgian Catholic nuns who were part of the “East-West Spiritual Exchange” encouraged by Pope John Paul II.  Catholic nuns from Belgium came to Japan for one month dressed in full habits with iconic head gear and sat cross-legged on cushions facing a white wall for zazen in the Buddhist temple.  A couple years later Japanese Zen Buddhist priests then lived for one month in a Catholic monastery in Belgium singing hymns, listening to the Gospels, and receiving Eucharist.  The exchange took place over several years beginning in the late 1970’s.  During one such exchange, Catholic sisters had been deeply impressed by the style and manners of a particular Japanese Zen master.  The old Zen master had them laughing and impressed them all with his insight into reality, as one might expect of an enlightened being.

A few years later the nuns returned to see old teacher but were dismayed to find him with dementia, not able to recall any of them nor their discussions from the past.  They went to Dai-En Roshi and asked her, “Where did his Enlightenment go?”  Dai-En Roshi responded without hesitation, “It’s right there.  It didn’t go anywhere!”

In the “Daigo” (Great Awakening or Great Enlightenment) fascicle of Shobogenzo, Dogen Zenji offers an understanding that encompasses Dai-En Roshi’s response to the Catholic nuns.  In Zen literature Daigo happens when a monk has a deeply transformative spiritual experience or insight into the nature of reality, often precipitated by a teacher-student dialogue.  But Dogen has a different take on Daigo.  He writes:

Therefore, great awakening is realized; and arriving at the way without awakening, observing  awakening and playing with awakening, losing awakening and letting it go – these are everyday matters among the buddhas and ancestors.

We often believe that practicing meditation leads to a deeply transformative experience, and that experience – what we might think of as Daigo – is the goal of practice.  It’s true that such experiences occur, and that they can be deeply transformative, but they are sometimes referred to as “small enlightenment” and confused with “great enlightenment,” and they are not the end goal of practice.  “Great Enlightenment,” Dogen says, includes losing enlightenment.  Perhaps we can say, forgetting about it completely.  Satori experiences are not something to be held on to.  Zen literature is very clear on this.  In fact, many koan stories are about getting students unstuck from holding on tightly to previously transformative experiences.  Thus, the absent-minded Zen Master’s “enlightenment” hadn’t gone anywhere.  In other words, great enlightenment (Daigo) encompasses all states of mind.  His dementia forces us to reconsider our narrow notions of enlightenment as a special or advanced state of mind, and to open ourselves up more deeply to the miracle of the present moment, regardless of our state.

Likewise, with dementia we are faced with losing our identity, or losing our loved one the way we once knew them.  This loss, however, doesn’t change the fact that a person worthy of respect is still present, regardless of their state of mind, or regardless of our shaky identity.

Great enlightenment is not something to be gained or lost.  It is eternally present.  That a human being is worthy of respect based on the fact of their very existence (not on their illness), too, should be the basis of our interactions with those with dementia.   Our idea of Enlightenment, however, often prevents us from seeing it within our self or another being.   Similarly, our idea of the other person (or of our self) prevents us from seeing who they really are (or who our self really is).  We are all of the nature to change, and there is no way to escape impermanence.  In practicing Zen, if our eyes are clear and open to the Dharma, every moment, regardless of what presents itself or how we feel about it, is a moment of Enlightenment.