Last week we were talking to some friends about another friend, who is now in the early stages of dementia. One of the expressions of this condition is that people close to the sufferer are accused of doing abusive things to them, or of neglecting them. This is very hurtful to the close carer, because it offends against their sense of care and support, as the early dementia sufferer begins to accuse them to others of having neglected or abused them
Further investigation reveals that this is a common symptom of the condition. Our friends were told the following. Sufferers from dementia begin to ‘lose’ pieces of their memory regarding their life’s story. In order to have a ‘complete’ story, a sufferer will piece together events and feelings from other places, and them apply them to their present, or to the part of life that has ‘dropped out’ of their story. Hence, feelings of resentment from one time, can be combined with characters and events from another, and then applied to a situation involving a third, closer person.
When I heard this, I recognised the process. As I turned 55, I started to notice that my memory was not as good as I assumed it to be. People quoted to me things that I had said, of which I had no memory. I began to take more detailed notes of meetings and telephone calls, and to be more meticulous in my diary keeping s to prevent this.
I also noticed that I would have a quotable quote from a movie that I liked. I would tell the story of the movie and then deliver the ‘punch-line’ quote. Then, when I saw the movie again, I noticed the same thing as the dementia sufferer! I got the quote correct, but the context and the characters who said it were different!
Now two other contexts come to mid about this situation that do not involve getting older.
I have been part of a community that has gone through the experience of devastating bushfires. One of the experts in process describes how, that when people have been through such a dislocating experience, what they want first of all is facts!. That is what we did. I, and they poured over maps asking ‘Where did the fires start? What? What happened then? How did they change direction? Where was ‘X’ at the time? How did they get out? On it goes. The collection of facts helps to create consistent story out of a collection of fragments held by each person. The accounts of government officials was most important in helping to piece together a narrative at that time.
The other person I know who talks well about ‘story’ is Stanley Hauerwas. In his book ‘Naming the silences’ he suggests that the loss or suffering of children is also difficult because the death of a child contradicts the natural order of a life cycle. In these days of low infant mortality, parents are supposed to die before children. When a parent has to bury a child, it contradicts their sense of how the ‘story’ ought to go.
It is not surprising then that when a person begins to suffer from dementia and pieces of the story ‘drop out’ that they will try to stitch together a consistent narrative from the pieces that they do remember. Remember! Never let the facts get in the way of a good story!
So today I am 62! That is the shortest version of my natural story that I can give. ‘I have lived 62 years on the earth.’ The Church has often been involved in blessing this ‘natural’ story. We talk about Baptism, Marriage and Funerals’ as ‘Hatches, Matches and Despatches.’ But when the baptism service asks ‘give unto this child that which by nature they cannot have’ and asks that they be ‘born of the Spirit’ we are talking not just about God’s ‘adding’ something to a person’s life story whose real meaning is being constructed elsewhere. Instead, we are locating our lives within a different story. Then, on this Sunday I should say ‘Since the 17th August 1952 my life has been his with Christ in God.’ The 17th August 1952 is a more important date than 27th April 1952 because the story of my life that I now live began then.
For my mum and dad, who thought I might not survive, their Christian story was added to and deepened by the events of my birth. So my ‘birth-day’ shares in the Christian story to that extent. But for me, being ‘born again’ means being born into the Christian story.
So now, how we make sense out of the disparate events of our lives is not just a matter of investigating our ‘life cycle’. Instead, being ‘born again’ means that we discover ways of ‘finding our story in the Story of God, rather trying to fit the story of God into our story.’
Does this idea have anything useful to say to my friends whose friend is suffering the early stages of dementia? Well the first thing that might cause some ‘relief’ for them in the face of unreliable story telling is that what they, and their friend are trying to do is what makes us human. We are trying to construct a narrative.
But also, I am reminded of Thomas. He was held by his community for a long time (a ‘week’ in biblical time) before he ‘got’ the story of Jesus for himself. As we get older, and begin to dis-integrate (lose our story and much else besides) God, or the Christian community can also say ‘This person’s life is now being held by God, and God will bring them to new life. That is their story. As it is in the present, we can do our best to be a Christian community to them: to ‘hold them in love’ while not taking their unreliable narrative too seriously.
We have examples of this in our own Story, as we have seen with Thomas, but also in the story of the paralysed man who needed four friends to ‘hold’ him, to get him into Jesus’ house. What may help is that the intensity of the immediate ‘small story’ can be relativised by placing it within the bigger story of God’s love and plan for new life for us all.
I will have to wait to hear how my friends respond to this reflection.