In a book group discussing the spirituality of caring for people with dementia, it doesn’t take long before we begin to discuss how dementia affects the personhood of the afflicted. It is a question at once philosophical and practical.
What remains when dementia has robbed a person of his memories and his capacity to think logically, speak coherently and express relevant ideas and emotions? On a practical level, if the answer is nothing of the individual’s former self, then his loved ones can spare themselves the anguish and inconvenience of regular visits.
In that sense, our loved one has already died. On a philosophical level, the person in this diminished state has lost the essence of his identity or what we generally think of as personality. Yet something does remain. A room full of people living with dementia is a room full of individuals, who show different patterns of behavior, flashes of emotion and moments of heartfelt and appropriate laughter.
At the table with three memory care residents waiting for lunch, my attempts at conversation evoke three very different responses – a polite smile, indifference and an enthusiastic running commentary on something I cannot even guess.
A twinkle in the speaker’s eye and the quick movement of her hands leaves no doubt that her enthusiasm is genuine. She fiddles with a glass of juice thickened with a powder that is supposed to reduce the risk of choking. And then it happens. The glass slips from her hand and rolls on the table. Eyes widen. Some lean away from the expected spill. I lurch forward to right the glass and stop the flow of the liquid it contains, but there is no flow to stop. There is no liquid. The thickener has done its job.
The plane of the juice in the now horizontal glass has become a slope aimed at the rim but going nowhere. Laughter erupts around our table as the speaker holds the glass aloft, tilting it one way and then another, as if to mock the unintended consequences of a good idea.
These hardly seem to be the reactions of people who have lost the essence of their identities. While there is nothing especially unique about the startle reflex, it nevertheless finds a unique manner of expression in different people around the table.
Some simply widen their eyes, some move forward and some move away from the triggering event. Everyone seems to register a second wave of surprise at the immobile liquid though some need a brief explanation of what just happened. Everyone laughs but each in her own way, some perhaps only mimicking the laughter of others.
Dementia moves at its own pace with each individual, taking more or less away, more slowly from some, more quickly from others.
In our book group, we learn about different forms of dementia and the challenges that people living with these conditions and their caregivers face. The group is a place to learn and share information but it is more than that. We are there because each of us has a loved one with dementia and we come for the opportunity to express our concerns while we give and receive the support of others in similar situations.
Someone reports that a particular resident has been yelling at her loved one and those of us who know the identified person instantly know that it couldn’t be so. She is simply too sweet, easygoing, polite and respectful to be the culprit and, whatever else her dementia has taken, it has not erased these core qualities.
What then shall we call these core qualities that seem to transcend the ravages of a disease that destroys memory, reasoning and communication? Our group leader, a hospice chaplain, suggests we are entering the territory of the soul.
Because or perhaps in spite of being a psychologist, I am no stranger in this land. My religious education and spiritual practice have oriented me to the expedition I can see we are about to undertake. As a young boy, I learned that human beings are composed of body and soul and that the soul will never die but will pass on to another world after the death of the body.
In later years with more sophisticated language, I would come to think of the soul as the spiritual principle of human beings and appreciate how each of our souls is individual and unique.
In his book, “Care of the Soul,” Thomas Moore would teach me that soul does not have to be seen as an object of religious belief or immortality but has more to do with “depth, value, relatedness and personal substance.”
Although soul is easier to experience through intuition and belief than to explain in the language of psychology, that does not diminish its power in my life.
At the memory care center, I watch for manifestations of soul in the movements of the people I have come to know in the course of my visits. A woman works side by side with her daughter filling bird feeders in the garden. Other residents join in the activity, working alone or with friends.
My wife’s cousin and her adult daughters arrive from a neighboring state, their first visit to my mother-in-law at the residence. We pass the time with family stories, raucous laughter and expressions of gratitude for the gift of their presence. Despite her 100 years, grandma stays awake beyond her usual nap time, smiling with her eyes and repeating the well-worn phrases for which she is known. There is too much soul here to miss and much of it is hers.
Alan Bodnar, Ph.D. is a psychologist formerly at the Worcester Recovery Center and Hospital.