What is the most important thing we can do for the person living with dementia? It is easy to feel powerless.
What I learned – rather slowly, rather late in the day – was that my most significant contribution was the way I related to Shoko.
‘Your body language is more important than what you say,’ Sarah told me many times, long before I understood it myself.
It was true. If the tone of my voice was impatient, or if I hustled Shoko to sit down, or get up, or go out, she found it distressing. Sometimes it made her cry. ‘Why are you so cross with me?’ If I learned to speak softly, to hold out an encouraging hand, the rewarding smile warmed me out of all proportion.
Because we are not just minds, nor is the higher cortical part of us all that is our self. We are also not just individuals; we live in relationship with others and those relationships sustain us (see the post Person-centred care here).
John Swinton believes there is another dimension as well. As people made by God, we are held in God’s memory. God does not let us go and therefore we continue to exist, even when we ourselves may have forgotten everything, including God. This sense of being held by God is also transmitted to us by God’s people as they maintain relationships of love and care with us (John Swinton, Dementia: Living in the Memories of God, London: SCM Press, 2012, 2017, pp 193-198, 222-223).
This is the bottom line: we are not forgotten, we have not gone. Our self goes on living in relationship with others, and also – if we believe it – in relationship with God, even when our mental and bodily functions fail, or come to an end in death. ‘He is not God of the dead, but of the living,’ said Jesus (Mark 12:27).
Another way to understand the self is to think of the experience of love.
Wendy Mitchell tells her daughters that she won’t know their names one day but she is sure she will still feel the emotional connection of love, even though she might not recognise them. (Wendy Mitchell, Somebody I Used to Know, London: Bloomsbury, 2019, p 138)
I was privileged to experience Shoko’s love, right up to the end. Others have experienced a much deeper loss of personality and consciousness in those whom they love. They don’t recognise them. They can’t speak. They appear not to respond at all. That is so sad, almost impossible to bear.
Even then, it seems that there are ways of communicating, and evidence that the real self is still there. (John Killick, Dementia Positive, Edinburgh: Luath Press Limited, 2014, pp 95-101).
It takes love to find it.