Janet Morley is a writer and author, her latest book "Love Set You Going: Poems of the Heart" is published by SPCK. She worships at St Mark's Church, Broomhill, Sheffield.
My father Frank was the youngest child of four, born into the family of the vicar of a slum parish, a tireless Temperance campaigner who came late to marriage and fatherhood. Raised in an atmosphere of passionate Evangelicalism, which was combined with a family life (and home schooling) which was clearly both very disciplined and often a lot of fun, my father was deeply influenced by his father all his life. Nevertheless, he was only 20 when his father died, rather swiftly of pneumonia and in possession of all his marbles (Frank had been reading Greek hexameters to him that very morning). None of my father’s adulthood involved negotiating that relationship, handling long illness or growing frailty in his father, or engaging in face to face dialogue about the nature of God with the person who had raised him in the Christian faith. By contrast, Frank himself only died in November 2019, at the age of 99, after a period of dementia; I myself will be 70 in 2021. All of my adulthood so far has included the presence of my father, and my lifelong development of faith has inevitably taken this into account, both in what I have shared with him and within the various moral and intellectual battles I have wrestled with privately.
As a child I was good as gold and almost competitively devotional. It was only when I left home that I began to engage in the necessary adult rethinking of my faith and found myself inevitably battling my dad (who, as a Lay Reader, preached and prepared services well into his 80s). Through my twenties and thirties I argued with him about women priests and feminist liturgy; and then at 40 my marriage came to an end, to his profound disapproval. In the next twenty years we negotiated a relationship where there was much solid ground between us (serious biblical studies), and topics best avoided. But the last 20 years have involved another quite different stage, taking in my father’s role as the carer of my mum in her dementia, and then latterly his own dementia and the choices about his long term care. It is a cliché that this stage of life involves challenging reversals, as we adult children have taken on the role of caring for and protecting the parents who first cared for us – a role reversal that is much more common than it used to be, as advances in medical care have enabled many more people to live well into their nineties. What I want to explore here is what this renegotiation means – especially when dementia is involved – in terms of our understanding of faith. Many of us will have re-thought, over our lifetime, sometimes in radical ways, the Christian faith that we were raised in. I want to acknowledge that this process is never just an intellectual one, but will very often be wrestled with (explicitly or implicitly) in relation to the dearly loved and impossible people who brought us up. And then if they develop dementia, we encounter a whole new series of challenges that will test what we really believe, all over again.
The presence of dementia in a parent raises huge dilemmas for us: legal (is now the moment to take power of attorney and sell his house?); practical (is this the right care home for him and can he afford it?); and emotional (how do I deal with having the person who first taught me how to behave now acting rather aggressively towards his carers?). But there is also a key theological/philosophical question that arises: is my father still the same person he used to be? Is he still a person at all? For there is a deeply toxic strand in our culture that tends to deny real personhood to dementia sufferers. John Swinton, whose book, Dementia: living in the memories of God is a classic and essential read in this area, speaks of the ‘malignant social positioning’ that is applied to anyone with this condition. So instinctive and extreme is our culture’s attitude, that when Swinton told a colleague, who is both a psychologist and a committed Christian, that he was developing a theology of dementia, this was her response: ‘Is there such a thing as a theology of dementia? Is it not just demonic?’
So there is a common belief that, as it progressively strips from us key parts of our cognition, and renders us necessarily dependent on others for the management of our affairs, and eventually for even the most personal of our needs, dementia robs us of our essential personhood. Why do we think this? Swinton suggests that there are two crucial reasons. One is the priority we give to individual autonomy in our society, de-emphasising the interdependence that we in fact rely on in order to survive and thrive as human persons. The other is the entirely exaggerated importance we apply to cognitive competence, particularly our capacity for memory. Anyone who has had to take charge of the financial affairs of another adult recognises what a huge boundary that feels to cross – none of us can imagine freely relinquishing that to another, we value our autonomy so profoundly. And cognition – dementia undoubtedly takes away crucial areas of the brain in a way that eventually cannot be recovered or compensated for. People are affected differently, depending on their type of disease, but a very common feature is the loss of short term memory. But does this take away someone’s personhood? If someone has lost their grip of memory about some important relationships, does that mean that those relationships are lost? I would say not. During the last few years of my Dad’s life, I would regularly visit him along with whoever was his youngest great-grandchild. Every week, my father was unable to remember either the name or the gender of the toddler, still less their father’s name (his grandson). Yet he was completely clear that the child was connected to him and gave him great joy. And each child brought toys to show him and chatted away in the confidence that they were relating to a full person who loved them and was as likely as the next grownup to take an interest in their Fireman Sam rescue helicopter or baby doll. For the fact is that our personhood does not simply inhere in our own autonomy, but in relationship to a network of others. My father may not have remembered names or even the fact that we visited; but we, the visitors, did remember and held him within our love. In the same way, as Swinton argues, dementia sufferers, along with the rest of us, are held and loved as precious within the memory of God.
So, if we are to engage with the person who is living with dementia, and give them meaningful support in their own walk with God towards death, we need to address the importance of memory in a different way. For one thing, as we become aware that not only very recent events but quite possibly several recent decades have effectively departed from a person’s mind, we too need to let go of some things that may still matter to us. Among these are certainly any unresolved battles we may have been having with a parent most of our lives. It is definitely too late to try and make a frail parent recognise the validity of adult life choices we made, or faith stances we have adopted that they once disapproved of. Their only memories that may be accessible and still salient now are their childhood joys and anxieties, or possibly those of their own young adulthood and working life, including when we ourselves were children. It is our task now to find ways to trigger memories in them that are about crucial parts of their past identity, which they can still take pleasure in or be inspired by. This is often going to involve hymns, prayers and biblical translations that we may feel we have moved on from a long time ago – but we may well be only people who actually know what moves them spiritually, or used to move them. What did they sing to us as a child? It is time to sing back to them and find out what they can join in with. Photos are crucial of course, but so are our childhood memories. These are some of the crucial guy ropes of their identity, which we are in a unique position to provide – assuming we now have the maturity to offer them back, without resentment or a residual wish to try and change them.
And this process, of seeking to inhabit and share our own earlier experience of faith, or the faith of a parent who was raised and developed their own adult faith journey in a quite different era from us, can be a remarkable kind of ‘recapitulation’ for our own spirituality. One of my favourite hymns, which we sang at my father’s funeral, is Wesley’s ‘O thou who camest from above’, which is about not only the kindling of love for God but the guarding of the ‘holy fire’ until death. It contains that rich line, ‘my acts of faith and love repeat’; and I have increasingly discovered the force and accuracy of that word ‘repeat’. So far from being about mindless routine or any kind of refusal to move on in our understanding, it seems to me to about an enduring persistence in faith, and precisely this willingness to engage in returning to the root of things. And as a description of what we have to do, when truly engaging with a loved one who is living with dementia, it can hardly be bettered. Infinitely patient repetition of the activities, songs and conversations that now give that person joy is what it is all about.
I am pleased to say that for my father, dementia eventually brought some surprising spiritual comfort. As he entered a more contained dementia wing, which also included much more in the way of worship than his previous care home, his rather aggressive behaviour and his bewildered searching and pacing began to fall away. Gradually he shed his carapace of anxiety and need to be in control, and became much more touchy-feely and overtly loving than I had ever known him to be. At the end he was still able to receive communion with understanding, and to join in with the whole of the Lord’s prayer. He died just a few weeks before Covid 19 entered the world, surrounded by family; one of his great grandchildren who used to visit as a toddler placed in his hand a carved wooden heart.
The fact is, the encounter with dementia in a loved one, and its necessary recapitulations, is going to change us as well, and ask us to re-think many of the positions we may have adopted, and indeed the intellectual thought processes that have brought us to them. It may make us wonder, too, what is going to be the bedrock of faith to which we will cling when perhaps, in our turn, we too may enter this condition. For dementia upends our expectations about relationships and it invites us creatively to break many social rules. It makes us question the nature of human autonomy, and what we mean by dignity. It denies us the normal logical rules by which a conversation proceeds, and invites us to enter a reality that is not the reality the we, the caretakers, recognise as accurate here and now. It asks of us that we strip down our ways of relating to people so that we prioritise the communication of love and touch, surrendering quite a lot of the knowledge, reason, and status that is normally negotiated between adults. It takes us to a place where babies and toddlers instinctively show us the way to connect warmly and directly with those we love. It asks us to step outside of the malignant social attitudes that surround our thinking about this condition. It invites us to prioritise people who are more vulnerable than any we will ever come across, and who are never, in this life, going to get better. It asks us not to be afraid. It asks us to keep faith. It asks us to become like God.
John Swinton, Dementia – living in the memories of God, SCM Press 2012.
Eileen Shamy, A Guide to the Spiritual Dimensions of Care for People with Alzheimer’s Disease and Related Dementia – More than Body, Brain and Breath, Jessica Kingsley Publishers 2003.
See Janet Morley, ‘Guarding the holy fire – dementia and the mystery of love’, Holiness, Wesley House Cambridge 2018/9 for a longer version of this article