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Who am I, when I have forgotten who I am?

by
08 March 2013

Many people are terrified of dementia - not least because, as it erodes memory, it calls into question our sense of self. John Swinton argues that being remembered by God gives cause for hope

SHUTTERSTOCK

AN ELDERLY woman, suffering from dementia, paced the corridors of the nursing home restlessly, repeating one word over and over again.

Members of staff were disconcerted, but no one seemed sure how to put her mind at rest. They were at a loss to understand the reason for her distress. The word she repeated was "God". That was all she said.

One day, a nurse walked with her up and down the corridors, until eventually, in a flash of inspiration, she asked: "Are you afraid that you will forget God?" "Yes, yes," she replied emphatically.

The nurse was then able to say to her: "You know that even if you should forget God, he will not forget you. He has promised that."

For this woman, who was forgetting many things, and was aware of it, that assurance was all she needed to hear. She immediately became more peaceful, and that particular behaviour ceased. The nurse's words gave her a new frame in which to see herself. When it comes to forgetting, it is not who we are, but whose we are, that counts.

Dementia is a complex and difficult human experience that raises deep theological and practical questions. Research undertaken by Alzheimer's Research UK suggests that people fear dementia more than they fear cancer. Cancer causes concern; but dementia brings with it the fear that the person somehow disappears, subsumed in forgetfulness.

In a highly individualised culture such as our own, the idea of "losing one's self" is devastating. But there is hope. If, as Christians, we believe that nothing can separate us from the love of God, there is a hope for people with dementia which - if noticed and properly understood - can be liberating and hopeful.

IN HER powerful autobiographical account of her journey into dementia, Christine Bryden asked: "Who will I be when I die?" A high-flying Australian government official, she found her life change completely when, at 46, she was diagnosed with pre-senile dementia (Back-page interview, 17 August 2012).

In two books - Who Will I Be When I Die? (Jessica Kingsley Publishers, 2012) and Dancing with Dementia (Jessica Kingsley Publishers, 2005) - and a series of articles, she relates the story of her journey, and her hope that, in the resurrection, she will find a positive answer to her question. She writes:

As I unfold before God, as this disease unwraps me, opens up the treasures of what lies within my multi-fold personality, I can feel safe as each layer is gently opened out. God's everlasting arms will be beneath me, upholding me. . . I will trust in God, who will hold me safe in his memory, until that glorious day of resurrection, when each facet of my personality can be expressed to the full.

Who she will be is determined by who God is: the one who remembers her. But what does it actually mean? Often, we think that what makes us who we are is what we remember ourselves to be. The filmmaker Luis Buñuel neatly sums up this apparently commonsense view: "You have to begin to lose your memory, if only in bits and pieces, to realise that memory is what makes our lives. Life without memory is no life at all."

Many of us might intuitively resonate with his sentiment. "Surely," one might ask, "to forget one's life, one's family, one's self, and, ultimately, one's God is truly to lose one's self." As Psalm 88 puts it: "Can the darkness speak of your wonderful deeds? Can anyone in the land of forgetfulness talk about your righteousness?" For Bryden, the answer to the psalmist's question is a resounding "Yes."

Is cognition the only measure of our presence among you as spiritual beings? Certainly my capacity for accurate communication of thought is diminishing daily. It is difficult to find the words for the pictures in my head to communicate with you.

Does this mean my mind is absent? Even if these pictures may themselves one day fade, is my soul connected with this failing cognition? I do not believe this is so. I might have difficulty feeling the presence of God, or being able to speak the words of a prayer in my mind, but I can commune without words.

As my cognition fades, my spirituality can flourish as an important source of identity. As I lose an identity in the world around me, which is so anxious to define me by what I do and say, rather than who I am, I can seek an identity by simply being me, a person created in the image of God.

Bryden pleads with her readers to recognise that there is more to being human than memory alone. The changes in her life may be profound, but the key for her is to find new ways of encountering God, when the old ways have faded and disappeared.

I believe that I am much more than just my brain structure and function, which is declining daily. My creation in the divine image is as a soul capable of love, sacrifice, and hope, not as a perfect human being, in mind or body. I want you to relate to me in that way, seeing me as God sees me.

She reminds us that loving God is not something that we do simply with our minds. As the normal cognitive ways that she uses to relate to God and others begin to fade, shift, and change, she seeks different ways of connecting. She is learning to commune without words.

One of the things that we often overlook, as we concentrate on the loss of cognitive memory, is the fact that our bodies remember. The memory of our bodies brings the past into the present.

As a chaplain, I often visited people with advanced dementia. As I led them in worship, I was always moved by the changes I saw. People who had been profoundly inactive, and apparently disconnected, would suddenly begin to move their bodies in new and surprising ways. They participated in the sacrament -singing and praying, reciting the words of initiation, and signing the gestures of redemption that comprise the sacraments of remembrance.

 

Over time, their bodies have learned, and remembered, the habits and gestures of the gospel. Their bodies remember God, even if their minds cannot put the same cognitive content to the words as they once did.

This bodily memory draws the past into the present, and embodies it in deep and meaningful gestures of worship and communion which may not be named, but none the less remain poignant, loving, and significant.

When a person with advanced dementia moves forward to receive a holy kiss, or is embraced with the peace of Christ - practices of communion, hospitality, and love that they have learned well over time - they feel, and remember, Jesus. Their bodies remember Jesus, even if their memories cannot now hold on to him.

Memory is etched into our bodies, but it is also firmly em-bedded within our communities. Memory is something that we do together. Lisa Genova's novel Still Alice is a story about a 50-year-old woman's sudden descent into early- onset Alzheimer's disease.

Alice Howland, a Harvard professor of mathematics, is happily married, with three children. Everything appears to be going well, and the future seems mapped out with clarity and excitement, until she begins to notice her forgetfulness.

At first, it is small things: forgetting to pick up items from the shop, and forgetting dates and appointments. But, gradually, she begins to get more confused. And she is eventually diagnosed with Alzheimer's disease.

Alice struggles to hold on to her sense of self, and to cope with her fast-disappearing past. One thing that keeps her going in the midst of her troubles is her BlackBerry. This is the place where her appointments are kept, her cooking times are remembered, and her life is organ-ised.

As the various alarms go off on her BlackBerry, she is able to negotiate the ever-increasing confusion of her life. It becomes her memory. There is a turning point in the book when Alice loses her Blackberry. Eventually, it turns up in the fridge. The frozen circuits on her telephone mark the end of its useful life as part of her memory.

Alice's story draws our attention to the fact that memory is not simply located in our brains. It is everywhere: in our communities, in our family and friends, in our notebooks, in our computers. All that we remember we remember together.

One of the problems for many people with dementia is not so much that they forget - all of us have forgotten much more than we remember, and forgetting is a central aspect of being human - as that they themselves are forgotten.

 

When people enter the strange world of dementia, the first thing that they notice is that many of their friends disappear. It is no coincidence that loneliness, alienation, and rejection are often primary marks of the lives of people with dementia. In a hypercognitive culture such as our own, where things such as memory, intellect, self-expression, and autonomy are highly prized, to lose such things is to become undesirable.

It is easy to forget the forgetful. It seems that our friendships are not built to withstand the storms of dementia. If you have no one to hold your memories for you, you quickly find yourself disappearing. If memory is what we do together, and if people with dementia are forgotten, then the problem of memory belongs to the community, not to the individual. Perhaps the essence of faithful dementia care is to learn to remember one another well.

All of this brings us back to Bryden's sustaining hope that, even in the midst of dementia, she will be remembered by God. The experi-ence of being forgotten felt by people with dementia resonates closely with the experiences ex-pressed in the psalms of lament. A big worry for the psalmist is being forgotten by God. "How long, Lord? Will you forget me for ever? How long will you hide your face from me?" Psalm 13 says.

For the Hebrews, to be remembered by God was to remain alive, to continue to exist. To be forgotten by God was to have God withdraw his spirit of life.

When God remembers something, it exists; when he forgets, it ceases to exist. That is why the gift of forgiveness is so beautiful, and potent. When God forgives our sins, they cease to exist. The turning point for the psalmist is when he re-encounters God's unending, faithful love. He is no longer forgotten. God remembers.

If we allow the experience of dementia to resonate with the experience of the psalmist, we can begin to see the importance of being remembered by God. When God remembers us, we are held in who we are, now, and for eternity. "I will not forget you. See, I have inscribed you on the palms of my hands," Isaiah says.

When we have forgotten who we are, when we remember badly and lose sight of ourselves, we can rest assured that God continues to hold us.

Even in our deep confusion, as we echo Jesus's words "Who do you say that I am?", in the memory of God we find an answer that roots our souls. Perhaps one way of looking at the Church is that it is a community that, in remembering that it is remembered, learns what it means to remember one another well. There is hope.

The Revd Dr John Swinton is a former nurse, a minister in the Church of Scotland, and Professor of Practical Theology and Pastoral Care at the University of Aberdeen. His new book Dementia: Living in the memories of God is published by SCM Press at £25 (Church Times Bookshop special offer price £20 - Use code CT852 ); 978-0-334-04672-1.

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