Dementia

Living in the Memories of God

John Swinton

• Publisher: Eerdmans
• Year: 2012
• ISBN:
  9781467436632
• Topic: Theologie & Religion
• Subtopic: Christlicher Dienst

Dementia is one of the most feared diseases in Western society today. Some have even gone so far as to suggest euthanasia as a solution to the perceived indignity of memory loss and the disorientation that accompanies it. In this book John Swinton develops a practical theology of dementia for caregivers, people with dementia, ministers, hospital chaplains, and medical practitioners as he explores two primary questions:

• Who am I when I've forgotten who I am?
• What does it mean to love God and be loved by God when I have forgotten who God is?

Offering compassionate and carefully considered theological and pastoral responses to dementia and forgetfulness, Swinton's Dementia: Living in the Memories of God redefines dementia in light of the transformative counter story that is the gospel.

1. A Practical Theology of Dementia

Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is — his good, pleasing, and perfect will.

ROMANS 12:2

We are to attempt an answer to the questions, “What is there within the Bible? What sort of house is it to which the Bible is the door? What sort of country is spread before our eyes when we throw the Bible open?”

KARL BARTH

In essence this book develops what one might describe as a practical theology of dementia. As a theological discipline, practical theology seeks to explore the interface between the practices of the church and the practices of the world with a view to enabling faithful participation in God’s redemptive practices in, to, and for the world.¹ Practical theology is that aspect of theology which seeks to bring together theology and practice in an attempt to describe and redescribe the world in order that the practices of Christians can remain true to the practices of God in, to, and for the world. Theology has to do with knowledge of God. However, such knowledge is not simply intellectual. Knowledge about God should lead to and indeed requires knowledge of God, and knowledge of God is necessarily experiential, practical, and transformative.² Theology provides us with a lens through which we can look at the world. It offers us a perspective on the way things are which scripts and guides Christian thinking, perception, and living. The object of this book is to use this lens to develop a theological redescription of dementia which is shaped by a different script. Such a description acknowledges the pain and suffering that this condition brings to those with dementia and their families, but offers an alternative theological reading of the condition within which hope and new possibilities — in the present and for the future — remain even in the midst of deep forgetfulness. This different view of dementia will enable us to respond to it differently.

Redescription as a Mode of Practical Theology

A central aspect of the approach of this book is what I will describe as “theological redescription.” In his book Redescribing Reality: What We Do When We Read the Bible, Walter Brueggemann proposes that the task of Scripture is not simply to offer moral guidance and tell us things about God, although it certainly does these things. In addition, Scripture’s task is to redescribe the world. The Christian’s task is to enter into the strange world of the Bible and to allow that world to redescribe reality. It is as we learn to live in this redescribed world that we encounter God and one another in fresh and challenging ways and find the resources for faithful discipleship.³

Brueggemann argues that we make sense of the world by utilizing a variety of implicit and explicit scripts (stories that form our worldview). These scripts help us to define, negotiate, act on, and make sense of the world. So, for example, nationalism, religion, capitalism, psychology, and biomedicine would be five primary scripts that form the epistemological context of Western liberal cultures. Such scripts are so powerful and so deeply ingrained in our thinking that we often don’t recognize the impact that they have on the ways in which we see and understand the world, including the ways in which we see and understand Scripture. Many of us no longer recognize that these scripts have been taught to us by people and systems that have quite particular goals, intentions, and worldviews.

However powerful and apparently decisive these defining scripts may seem to be, their claims are always open to counterclaims which may challenge or even overpower their definitions of the way the world is. The Christian narrative is one such counterclaim. Scripture calls the church to live by a different script, which emerges from within “the strange new world within the Bible.”⁴ This script offers a radical redescription of the world, turning it from a place of individualism and competitiveness, a place where autonomy, freedom, and choice reign supreme, into a place where we discover the sovereignty and majesty of God, who has created all things. In this new space of creation, we discover that salvation comes through brokenness,⁵ strength comes through weakness,⁶ and gentleness is revealed as an ontological aspect of the Messiah-who-is-God.⁷ It is important for our current purposes to note that this strange world is a place where intellect and human wisdom are perceived as barriers rather than as aids to faithfulness.⁸ Dementia will inevitably look different within such a strange new world. That being so, the practical theological task will be one of offering critical redescriptions of the world in the light of the new script of the gospel. The task is to redescribe the world in the light of Scripture and tradition and to look carefully at what dementia really looks like within this strange new world.

Challenging the World

Brueggemann’s point is similar to the point made in the previous chapter regarding the relationship between theology and medicine. The Christian task is not to try to make the Bible relevant to society — quite the opposite. Christians are called to help society to recognize that it actually already lives within the strange world that is described in the Bible. It has just forgotten this primal fact. The Bible is not just inspirational and hopeful; it is revelatory and transformative. Put in terms of the intentions of this book, our task is not simply to see how the Christian story can contribute to our current understandings of dementia, although this is certainly important. But the deeper task is to see what our current understandings of dementia and the practices that emerge from them look like when they are viewed and redescribed from the perspective of the strange biblical world.

Brueggemann suggests that “. . every time the church takes up Scripture, it undertakes a serious challenge to dominant characterizations of our social world. It dares to propose an alternative reading of the world, an alternative version that is in fact a sub-version that rests beneath the dominant version in a less aggressive form.”⁹ So, for example, he points to the words of Psalm 119:105: “Your word is a lamp to my feet and a light to my path.” This text powerfully asserts that the Torah, the most important Jewish teaching tradition, is the lamp and the light that guides people in the world. It redescribes the basis of power and the nature of the world. In the midst of the many competing claims about what the world is and how humans should function within it, the Torah (and in similar fashion, the gospel) reveals in fresh and radical ways the meaning of living well in sickness and in health.

In seeking to redescribe dementia using Scripture, theology, and tradition, this book will aim to protest against negative and misleading descriptions, insisting that “the initial presentation of reality is not an adequate or trustworthy account.”¹⁰ If the cultural narrative that underpins our perceptions of dementia is that dependence is something to be feared, and that autonomy and freedom are things to be desired, the basic assertion that we live in creation offers a radical redescription. Autonomy and freedom are meaningful only as they relate to the contingency of human beings before God. If God is the Creator, and if we live in a creation which God says is good,¹¹ then at the very least we know that we are created out of love and loved beyond all measure.¹² If God knew us when we were still in the womb (Ps. 139), and if God does have plans for us to prosper,¹³ then neurological decline cannot separate us from the love of God and our ongoing vocation as human beings. Lives that are touched by profound forms of dementia have meaning and continuing purpose.

The redescriptions of dementia that will be offered in the following chapters will not, of course, be wholly independent of the old descriptions. The old descriptions may turn out to be necessary, but they are insufficient. Like the resurrection body (1 Cor. 15), the art of theological redescription recognizes that the redescribed world will have continuity and discontinuity with what has gone before. The old descriptions retain some degree of utility and value but are transformed in important ways. The new description, as Brueggemann explains, “employs in fresh ways speech that is already known and trusted. In order to serve as ‘redescription,’ however, the already trusted speech must be uttered in daring, venturesome ways that intensify, subvert, and amaze.”¹⁴

Whether the thoughts presented in this book serve to intensify, subvert, and amaze is for the reader to decide! In this book I will listen carefully and critically to the known and trusted scripts that have been constructed around the nature of the experience of dementia. However, rather than simply uncritically reiterating the standard accounts of dementia, I will redescribe the condition in ways that are recognizable but have become intense, subversive, and, perhaps, amazing as they encounter the radical script of Scripture, theology, and tradition. Such redescription will enable dementia to look and indeed to be something quite different from the culturally constructed norms of it. This, I hope, will lead to responses which are caring, compassionate, and, above all else, faithful.

To summarize, I’ll provide the definition of redescription as a practical theological method:

Redescription is an interdisciplinary approach to practical theology that seeks, in the light of Scripture and Christian tradition, to redescribe objects, actions, situations, and contexts in ways that reveal hidden meanings, modes of oppression and misrepresentation, with a view to offering a fuller and more accurate description that highlights alternative understandings and previously inconceivable options for theory and action.

The Stories That We Tell

Central to the approach of redescription as it will be worked out here is the significance of stories. In developing this point, it will be helpful to return to the question that opened this book: Who am I? One way of answering that question is that we are the stories that we tell about ourselves and that are told about us. Human beings are natural storytellers. We live in a world that is profoundly shaped and formed by the stories we tell about ourselves and one another. We tell stories to identify ourselves — stories about our past, stories about our hoped-for futures, stories about what is happening in the here and now. We continually move backward and forward in time as we use our stories to describe who we were, who we are, and what we hope we will become. Storytelling reveals the inherent timelessness of human existence. With just a few words we can traverse years, racing backward toward our memories or shifting forward toward infinite possible futures. We perceive ourselves as existing in the present, but at any given time a story can take us backward or forward in time, revealing old or new experiences, opening us to future worlds that contain possibilities we hadn’t even considered before. Some of the stories we tell and that are told about us are true, some of them are imaginative, and others are just plain false. Nonetheless, all of them come together to give us a sense of who we are and where we are located within the ongoing stories of our lives.

The Power of Counter-Stories

While our identity, in a sense, may change over time (I say “in a sense” because the question of identity over time will become significant and much less obvious as the book moves on), we normally remain aware that certain stories, whether they be about ourselves, others, or the world around us, are true and others are not. We can be mistaken or deceived, but we still continue to believe or disbelieve them. Even illusory stories, if we believe them, are true in their consequences. Under normal circumstances, most people are able to effectively negotiate their narrative worlds and gain and retain a more or less realistic sense of who they are. In whatever flawed way, they can articulate this sense of self-in-the-world in ways that present and maintain their identity within the public and the personal realms. This in turn protects them from the imposition of false identities that may be inaccurate or dangerous. Not all stories are true. Some stories need to be countered. The key to holding onto one’s identity, even if one is not entirely sure of who one is, lies in the art of being able to effectively tell counter-stories that correct the picture.¹⁵

However, there are circumstances within one’s life where one — literally or by default — loses the ability to tell one’s own story. Dementia is one of these circumstances. If one has been diagnosed with dementia, the availability of plausible, positive counter-stories is not always apparent. One of the problems for people with dementia is that they gradually begin to lose the ability to tell their own stories. Over time it is the stories of others that shape their experiences and place the parameters on their identity, personhood, and experiences. Particularly those people with advanced dementia simply do not have the ability to articulate counter-stories in ways that provide them with enough social power to sustain their identities as valuable and capable human beings.¹⁶ The various stories told by the powerful others that surround them — doctors, neurologists, nurses, society, media, family, friends — eventually overwhelm their own stories, leaving them echoing author Christine Boden’s words — “Who will I be when I die?”¹⁷ — and resonating in a strange way with Jesus’ question to his disciples: “Who do you say I am?”¹⁸ Even if people with dementia have important stories to tell about themselves and others, who will listen? Gradually the question changes from that which is asked by all people — “How can I tell my story well?” — to a new and more complex question: “Who will tell my story well?” Having to ask the latter question puts one in a position of tremendous vulnerability. In a culture which prizes memory, intellect, freedom, reason, and autonomy, what kinds of stories will be told about those who seem to be losing these things? Their question is haunting: Wh...