The God who remembers

I’ve just finished a wonderful book which I think everyone in the country should read. It’s Where memories go by BBC journalist Sally Magnusson telling the heartbreaking story of Sally’s mother Maimie Magnusson’s experience of dementia, the cruel disease which stole her away.

It describes her fear, her struggle to hold on to elusive memory and to continue deploying meaningfully the words which as a writer had been so important to her, and the moments of clarity when she glimpsed tragic reality.

‘Everything makes me sad these days,’ Maimie said. On another occasion ‘I just feel so, so lost.’ And on another day still ‘It’s like being on a long road getting further and further away from myself.’

The book records one woman’s memories of her mother’s illness. Everyone’s experience of dementia is different. But we all know people with dementia – there are 800,000 suffers in the UK, 35.6 million worldwide. Sally Magnusson’s powerful, insightful writing and her mother’s despatches from the journey help us empathise with those who suffer and their carers. And much in Where memories go resonates with us as Christians.

The book isn’t simply a memoir, but a polemic which while recognising and applauding good practice in dementia care, rages against the absence of joined up provision, the apparently powerlessness of the system to address the atrocious ethos in some care homes, the lack of dignity, the low level of funding directed to dementia research in comparison with other major health issues.

It is crucial, says Magnusson, to regard everyone as ‘equally precious.’ One of our roles as Christians is to be a campaigning voice for the weak, for those who do not have a voice of their own. Sally Magnusson brings a prophetic message, heralding the need for change.

What is impressively evident in the book is the deep love between Maimie and her four surviving children. Sally researches the causes and the journey of dementia not simply from journalistic interest, but in order to understand her mother’s anguish, to accompany her as she takes her lonely voyage.

The daughter recognises that what her mother needs from her is mothering – ‘unconditional care, endless forgiveness and constant understanding.’ Addressing her mum, she writes of ‘the sore privilege it has been to accompany you into the deepest darkest places and sometimes to be able to turn on the light.’

And she can say without sentimentality, having been honest about her struggle and tiredness and pain, that she has learned lessons which could be learned no other way. ‘To do this for you has been to learn how to love.’ This is the kind of love which was modelled by Jesus Christ.

Where memories go also addresses the nature of human identity. Is there no more to us than the complex biology of our brains? If dementia steals our minds, has the treasure of self been annihilated? Sally Magnusson is convinced that her mother was still present to the very end. That there is ‘a separate selfhood, a secret core of self which I imagine as a glossy pearl, existing separately and staying safe from the most violent assaults on the body and of the body.’

This is the Christian conviction, that our souls exist separate from, but expressing themselves in our bodies, at all times nurtured by the love of those around us and by the love of God.

Sally Magnusson discusses euthanasia and assisted suicide in the context of dementia. She acknowledges that other people have different views, but argues in the light of what she has seen of her mother’s capacity for joy and laughter even at a very advanced stage of her illness that we can never know when ‘the end of any meaningful life has come.’

Perhaps dementia is what we fear above all else, especially those of us with dementia in the family. In response we must treasure each moment, each memory, each opportunity to love and to be loved, and say to our families, as Sally Magnusson says in effect to her children that no matter what happens, no matter what cold mists her mind may conjure she will love them forever.

Our faith will be shaken as we enter the black hole of dementia. Watching a hymn on Songs of Praise, at the line ‘Then thank the Lord….’ Maimie bellows ‘You can thank the Lord if you want to. But don’t expect me to.’ But her daughter highlights theologian John Swinton’s view: that what matters is not us remembering God, but God remembering us.

Sally says to her mum ‘You know me, you know me not. It really does not matter. I know you.’ And it seems to me that those words express what, to those adrift in the mists of dementia, God whispers.

(Christian Viewpoint column from the Highland News dated 13th March 2014)