June 30, 2016

"It's a daily prayer book and each day of the week it has a prayer. And every morning when I wake up I read the prayer for that particular day. And, like I say, before when I was working, I would never read anything like this. You know, it was the farthest thing from my mind. But now every morning I read it faithfully. Monday's prayer I happen to like most because it kind of applies to us here. Happy disease? It says my Lord God, I do not see the road ahead of me. I cannot know for certain where it will end. I know that you will lead me by the right road, though I might know nothing about it. Therefore, I trust you always. I will not fear. For you are with me and you will never leave me to face my perils alone. And this gives me a sense of reassurance."

There were no such prayers prior to Peter's diagnosis. Indeed, his dementia has been accompanied by something like a spiritual conversion:

"I'd say, why did you let this happen to me? I had such a good career. Everything was going fine for me. He would say to me probably, "Well, why did you fight it? I was trying to lead you in this direction." Oh, I didn't realize that. Well, I've come to the conclusion that everything has a purpose, so the Good Lord, He knows the best for you. So maybe this was to slow me down to enjoy life and to enjoy my family and to enjoy what's out there. And right now, I can say that I'm a better person for it, in appreciation of other people's needs and illnesses, than I ever was when I was working that rat race back and forth day to day."

Though dementia may seem to be an attack on the self, it has brought to Peter an unsought and unexpected discovery of self.

For many who are, like Peter, in the course of progressive dementia, litanies, prayers, and hymns often have a deep emotional significance. Perhaps more contemplative and spiritual capacities are elevated as the capacity for technical, instrumental rationality fades. It is evident that people continue to benefit from rituals that connect them with their spirituality. It is my belief that divine love never abandons the deeply forgetful, which is to say that it never abandons anyone and is therefore truly unlimited.

I recall an old Catholic man with advanced dementia who could not speak unless a rosary was placed in his hand and someone started to recite the words of the Hail Mary. Then, surprisingly, he would go through the entire rosary on his own, saying each prayer in order. The fragmentation of selfhood resulting from the deterioration of the mind requires spiritual mending. Is it possible that people with dementia might be spiritually enriched, even as they dwell within the depths of despair?

The Lord has purposes in the domain of dementia, however mysterious these might be. And these extend to caregivers, who in remarkable moral creativity work unselfishly with the remaining capacities of the deeply forgetful. Their love provides a kind of grace, and is itself often sustained by faith in a higher purpose. Caregivers can learn, in their difficult work, that persons with dementia are not so different from the rest of us: they need to be loved, to feel good about themselves, to be respected, to be stimulated emotionally and relationally, to feel secure, to be included in activities, and to find moments of delight in the abundance of natural beauty.

A caregiver's immersion in what we might call the culture of dementia can bring to light the complicated emotional and relational experiences of those afflicted. There is the assertion of will or desire, usually in the form of dissent. There is the ability to express a range of emotions, including positive ones. There is initiation of social contact (for instance, a person with dementia has a small toy dog that he treasures and places before another person). There is affectional warmth-for instance, a woman wanders back and forth in her facility without much socializing, but when people say hello to her she gives them a kiss on the cheek and continues her wandering. There is a remarkable appreciation for pet dogs and plants, which has resulted in sections of many nursing homes implementing the so-called "Eden Alternative" of a naturalistic environment with friendly animals.

Individual memory and rationality may fail, but quality of life in community remains a moral and practical goal. Just as a lost limb can be replaced, to some degree, by a prosthesis, so the loving care of family, nursing home, and church can become prosthetics for the loss of fluency of tongue and mind.

But as more and more of us find ourselves called upon to provide such prosthetic support to afflicted parents, relatives, or friends, we may find it a challenge to remember that such patients are never less than persons. There is in most of us a spark of reason, and much was achieved for universal human moral standing by the great Stoic philosophers who emphasized this logos in us all. Yet their insight may lead us to arrogance, if we make the worth of a human being entirely dependent on rationality. As Reinhold Niebuhr wrote, "Since the divine principle is reason, the logic of Stoicism tends to include only the intelligent in the divine community. An aristocratic condescension, therefore, corrupts Stoic universalism." Equal regard under the love of God, coupled with the remaining emotional, relational, and symbolic-expressive aspects of persons with advanced dementia, leads us to reject the rationalistic outlook captured in the expression "I think, therefore I am." In its place a less arrogant conception is possible: "I feel and relate, and under God, I am."