Who We May Be: Considering Dementia

This week I have been asked more than once about the shaman’s view of dementia. While there is no simple answer, there are some hints of agreement across cultures about how we might think about dementia.

Let’s begin with context. In many traditional Indigenous cultures folks think about human lives as sharing a trajectory. If we are blessed we may find ourselves traveling from childhood to childhood over many years. When we arrive at our second childhood there is a community of people who know and love us, and who will work together to keep us comfortable and protected. Nature is also helpful; illness and accident will likely aid us to pass over into spirit before we lose all sense of self.

This contrasts sharply with life in contemporary Western cultures, where aging is seen as an illness, and families are largely left to cope with dementia alone. In this context the aged and demented easily become a burden, a tragedy for all concerned. To make matters worse, the economics of caring for an ill elder frequently result in the impoverishment of spouses and other family members. Finally, in our cultural that so fears death, Nature is often prevented from being a friend and aid. Instead, although the ailing person may wish to pass over, all too frequently medical providers do all in their power to prolong the life of the elder, spreading much heartbreak.

But who is this person before us, this loved one who is no longer the person we knew and loved? We live in this limited world. The conditioning of Self through experience gives rise to personality, and it is with this sense of personhood that we engage throughout our lives. When dementia erases history, it may dramatically alter the personality of the loved one. The person we knew and loved is literally no more. Yet, I believe they remain, fundamentally, who they have always been; at their core they continue to be immense beings, aware in many dimensions and places. Below the level of personality lies another Self, the ageless, eternal one.

We may experience profound contact with the loved one after their passing into spirit. Usually, they appear to us intact, as the person we cherished before their illness. In some shamanic cultures it is believed that it is the personality soul that reincarnates. Other souls return to All That Is, settle into Nature, or wander the everyday world. In this view, one I hold, we are each magnificent ecosystems of souls and microorganisms. Our perception of being unified, permanent selves is an illusion. Indeed, although we appear to be individuals, the appearance of being autonomous from the surrounding other is an illusion. Eventually even our Souls return to the great ocean of awareness we call the Creator.

In the moment, both the person living through the experience of dementia and those who love them, suffer. Surely there are fewer heartbreaks greater than having a parent, lover, or sibling forget who we, and they, are. How difficult for us to maintain an awareness of the Great Mystery of which we, and dementia, are all a part. How much all who are touched by the long reach of dementia need the loving support and engagement of community; how tempting it is to turn and run from the terror.

As I ponder my own aging, I wonder whether we may find, as a culture, a more deeply human way forward in dementia care, a path devoted to healing rather than curing, a road that embraces our inevitable journey home to the spirit world.