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Wednesday, 28 September 2016

Theological reflection: End of Life with Dementia

Here is the theological reflection that I shared last night as part of the evening on End of Life with Dementia held at St Martin-in-the-Fields:

In her book, ‘My Year with a Horse: Feeling the fear but doing it anyway,’ Hazel Southam writes of facing the daunting task of telling her dad that he isn’t coming home: ‘I visit him as soon as I’m back and … sit down and tell him the truth. This is his home now. He’s not well enough to come home. And he won’t be getting better. This team of carers can look after him properly and we simply can’t. I am very, very sorry. He looks me in the eye and under­stands. We hold hands and cry. He never cries.

We have the kind of conversation that you have before someone dies. We talk of love and laughter, God, cats, The Guardian, and cricket. I remind him of the village where we all grew up, of its orchards, his football team. He asks, “Where do I live?” and “Where is my house?” a great deal these days. I used to try explaining, but as none of it makes any sense to him — the past 75 years having been wiped out — I talk about the village instead. That he remembers.

I feel, as my mother often says, like a wrung-out piece of rag. There are things that you don’t want to tell your parents: my A-level results aren’t very good; I’ve left my job with the big publishing company; I’ll be reporting from a war zone. But “You’re not coming home” is by far the worst. I comfort myself with the thought that, however bleak this moment, it won’t come again. Daddy knows now, and whilst we may discuss it in the future, it won’t be like this. Only, of course, it is. The next day and the day after and every day for years he will ask when he’s coming home and I will have to tell him the freshly shocking news that he won’t be. Every time it will be new to him, as five minutes later he will have forgotten it entirely. It is my own personal hell, and his, too, probably.’

Nicci Gerrard, from John’s Campaign, puts it like this: ‘When people are in the last stages of dementia, we who love them (we whom they have loved) may bend over them, trying to find in the sounds they are making some words, sentences, a form of communication and a kind of meaning. Even a syllable is precious now. It is a bit like a parent straining to hear language emerging from their baby’s babble of sound – but with a baby this emergent language marks the beginning of the great formation of the self, and is full of hope and possibility.

With the person who lives – and who dies – with dementia, the language that connects us to others is disappearing, the self is being broken up. An entire world is being un-made. We come to darkness, silence, the radical slowing of death: dementia’s long goodbye.’

Gerrard notes that this long goodbye occurs because ‘Telling stories is part of what makes us human’: ‘With stories, we make sense of the world and impose a kind of order on to chaos. We continually edit our own lives into a narrative that will give it a coherent meaning: without this, we’re lost.

And people with advanced dementia become lost: lost to us and lost themselves. They can no longer speak themselves and without memory to bind the pieces of their life together, they are trapped in an endless present.‘

That was Hazel Southam’s experience too, but, she instinctively found a way of sparking memories in her father by retelling part of his story: ‘I used to try explaining, but as none of it makes any sense to him — the past 75 years having been wiped out — I talk about the village instead. That he remembers.’

Healthcare professionals are increasingly recognising that ‘Storytelling sparks memories, encourages verbalization and promotes self-esteem among those with dementia.’ The Contented Dementia Trust who advocate the SPECAL method explain the significance of story in this way: ‘A person with dementia will experience random, intermittent and increasingly frequent memory blanks relating to the facts around recent events. However, some memories of past events are always available and can be readily recalled by the person, given the right circumstances.

The SPECAL method uses selected intact memories from the person’s pre-dementia past and links these to their activities in the present. This means that the person is able to maintain a relatively content life in the present, drawing on their own memories of situations and activities which may have occurred many years ago but still have useful meaning for them in their life today.’

Narrative theology says that, as human beings, we are storytellers, and, as Christians, we blend our story with God’s story. Roger Olson helpfully summarises the main aspects of narrative theology. The Bible, he writes, tells ‘the great story of God whose central character (for Christians, at least) is Jesus Christ.’ ‘Therefore, all must be interpreted in light of that story and its purpose—to reveal the character of God through his mighty acts leading up to and centering around Jesus Christ.’

‘Theology is our best human attempt to understand the biblical drama-story’ and that is done by ‘“living the story” together with a community of faith shaped by the story.’ ‘The task of the church is to “faithfully improvise” the “rest of the story.” Christians are not called simply to live in the story; they are called to continue the story in their own cultural contexts. First they must be grounded in the story. They must be people for whom the story “absorbs the world.” Second, they must together (communally) improvise the “rest of the story” faithfully to the story given in the Bible.’

These two stories - the personal story of the person with dementia and the meta-narrative of salvation history – should intertwine throughout our lives as Christians, but, perhaps, never more significantly as we approach death. One common experience for clergy after funerals or memorials is to hear people say, I wish the person we had been remembering could have heard those tributes while they were alive. That could always have been the case, if we had been more intentional about hearing, re-calling and celebrating the story of that person. In the case of those with dementia, to do so is even more vital as it sparks past memories which may have useful meaning for today but even at the point of death, although the person may be unable to respond, there may nevertheless be an ability to hear and take comfort from the celebration of their life through storytelling.

As Christians, we can do more because our personal story can be blended with God’s story. This is particularly so in relation to the Eucharist, where the key events in God’s story are re-enacted and re-membered. It has been my experience, in taking communion to parishioners with dementia, that this celebration has been the moment in the visit when those I have been visiting have become most engaged, most participative and most present as they remember and join in with familiar words and phrases, recalling the prayers and re-inhabiting the story.

As Christians, our hope is also that this story and our being blended with it does not end. This hope has, I think, been articulated well by scientist and priest, John Polkinghorne, who says that "the immensely complex ‘information-bearing pattern’ (memories, character, etc) carried at any one time by the matter of my body ... is the soul and, though it will dissolve with the decay of my body, it is a perfectly sensible hope that the faithful God will not allow it to be lost but will preserve it in the divine memory in order to restore its embodiment in the great divine act of resurrection."

For all these reasons I agree with Nicci Gerrard, who ends the article from which I have quoted, by saying: ‘The question of how we care for those with dementia is also a question of how we live and how we die. It is about what it means to be human. We are all human. We all have stories.’


Leonard Cohen - You Want It Darker.

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