I learned early on to notice the sacred in this work. In the beginning it felt like a homecoming. Now, as a gentle grounding. I continue to be humbled. Noticing at first the dialectic of my admiration for elders as well as my own discomfort at the losses endured and the mysterious and sometimes troubled behaviors of those living with cognitive loss. Gradually, they led me to the sacred and showed me the way. I began to understand I was witnessing grace and wisdom hidden in the small pockets our society makes for older adults with dementia, separated as they are from American daily life at this time.
I am not alone in witnessing, experiencing and knowing the greatness that is missed by most, ignored and feared by many. I have been molded by their generosity, tutored in living and guided through what on the surface seems quite dark compared to the light that resides within. I call them “The Wisdom Keepers”: Our earth-bound sages with one foot in the plan of constructed reality and the other in a spiritual dimension we can only intuit. They are teaching all over the planet, can you hear them?
Beyond the layers of sadness and the imprints of our collective American fears and pity resides a glow that is not only “still here”, as Ram Dass says of his own experience with cognitive loss after surviving a massive stroke, but revealed in ways that are surprisingly clear. This clarity is an opening, a window first carved by vulnerability, the dropping away of the ego’s scaffolding and then illuminated by presence itself. How well this light shines depends on how it is cultivated, observed, interacted with and the environments in which it resides from moment to moment. Ironically, we give this kind of nurturing attention, love and acceptance and love to children, but often withhold it from our most vulnerable elders. While there is no comparison, if only in very limited ways between adults with a dementia and the children we care for, we can see these approaches side by side and notice the differences. The difference is with us, the care partners, the care givers, in our behavior.
Our behavior, our responses are the most significant determinant as to whether something grows or withers. This is a sacred exchange between two people in relationship for a lifetime or for only a short time. It is our light merging with another’s. In our society and families of origin, if we are fortunate, we inherit from a young age successful behaviors for caring or learn them on our own. Blueprints that will later guide us in our friendships or when we have our own children, spouses and companions. Naturally and in subtle ways they are imparted and learned, shaping each of our unique approaches and responses to relationship and challenge. As a parent and as child, I have experienced this profound bond and exchange of wisdom.
These are the wordless aspects of relationship that serve as the foundation in which all other actions are born. This can happen unconsciously or with complete awareness from moment to moment. It is the difference between knee-jerking reactions and thoughtful responses. The opening for clear seeing is in the “aware-ing,” a word I first learned from Jon Kabat Zinn and later from Toni Packer, both teachers in the tradition of mindful living and meditation. In moments of clear seeing we are gifted with noticing any rigid beliefs and any harmful behaviors.
When someone with cognitive loss tells a story and has the details wrong from our perspective, including names, places or time, our reaction need not be invested in correcting, challenging or assuming complete confusion. It can be a great challenge and practice to let go of our well rehearsed, programmed and refined sense of “right” as well as our keen eye and ear for order and sequence. In American work life, these qualities (competition and right-ness) can mean the difference between receiving recognition and moving up the ladder or being pushed aside for someone considered more astute, bright or capable. A highly competitive culture leaves little room for error. Ironically, without awareness we fall into behaviors which most of us resent or deplore in others. Communicating with some one who has cognitive loss can unfortunately be confused with having a free pass to behave in less compassionate ways with the belief the person will not remember the exchange later. Even worse, the belief it does not matter at all. It matters, but not for the reasons you may initially think.
In the end and in each moment it is not what we think that matters at all. The Wisdom Keepers remind us it is in our presence, in the non-speaking realm of our communication where connection and understanding reside. Whether in the stillness between us as we sit quietly or as the stillness woven in and around the spaces between our words and actions, we can experience our true selves, our whole and unseparated selves. Being together in this way elevates our awareness beyond any rigid and incomplete definitions of dementia and loss. There is no separation, it only exists in our mind, the illusion is ours.