Held in love: A theological and pastoral response to dementia

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https://doi.org/10.52456/WACJO114

When a person contracts dementia – surely the biggest medical challenge that we face in the next few decades – the image often used by friends and family is of someone being lost to us. In one sense, that is exactly how it feels. With my mother, the loss was gradual. Over a period of time, roughly ten years, she ceased to be the mother I knew. In the last few months of her life, in a care home, she barely knew who any of us were. The idea that she might have a son and daughter, not to mention a husband who for many years had been her main carer, was something of an amusement to her. Yet as much as my mother ceased to be the person I knew, and as much as I grieved her decline, the truth (at least the truth of how I experienced it) was that she became more my mother over those ten years than she had ever been. After she died, I pondered how this might be.

It occurs to me now, just over a year and a half on, that maybe I had been in massive denial or maybe that I had allowed sentimentality to cushion me from the harsh medical facts. I have been a pastor long enough, journeying with people as they come to terms with the vicissitudes of life, to know that both were possibilities. But what I prefer to believe – and I use the word ‘believe’ advisedly – is that, in caring for my mother in dementia, I had stumbled upon an understanding of personhood that lies at the very heart of Christian revelation. It is this ‘stumbling upon’ that forms the central argument of this paper: the way in which caring for someone with dementia tutors us, or can tutor us, into a more relational, less functional understanding of being human. Furthermore, as the paper develops, I would like to explore this not only in the context of human relationships but in the most fundamental sense of relationship to God, leading on finally to some tentative reflections as to how the phenomenon of forgetfulness (the punchline of so much humour that surrounds dementia, but also a growing fear among people in western societies) in fact provokes surprisingly rich and deeply biblical reflections on resurrection and the memory of God.

That it is over a year now since my mother passed away means, hopefully, that these reflections will be less subjective than they might otherwise have been had I written them in the immediate aftermath of her death. But then again, what kind of theology would we be talking about that was not provoked by deeply personal responses to the human condition? I offer these reflections without apology, as something of a tribute from a son to his mother, and in the hope that they might offer spiritual and theological resources as we face this most modern condition.

As a matter of fact, much of what I stumbled upon through the experience with my mother had been present, as I look back, in the no less immediate circumstances of my work as a pastor. It is not unique to me (for I have heard it reported by many pastors), but my own experience of visiting people in care homes had already revealed that there was much more going on in people with dementia than neurological science could possibly tell us. Through what is sometimes referred to in dementia studies as lucidity, there had already been many occasions when, through the simple practice of praying with people or singing hymns, one became aware, to quote pastor/writer Dave Hansen, that it was possible to ‘reach the soul with end-runs around brain damage.’[1] On one occasion, I started praying Psalm 23 with an elderly gentleman with dementia, only for him to finish it off by memory and conclude with a prayer.

Of course, all such phenomenon – and it is at the very least a kind of phenomenological occurrence – can no doubt be explained neurologically, in much the same way as so called ‘near-death’ experiences can be explained neurologically. Even so, at the risk of falling foul of a soul/body dualism, which I am keen to avoid, such experiences as pastoral practitioners encounter on the field, and which relatives experience as they care for their loved ones, had at least prepared me for the possibility. I was to encounter in the most fundamental of relationships – a parent and child – that just because a person might not be able to remember who they are, they are not thereby a different person or, worse still, less a person. At the very least, lucidity, be it brief or prolonged, ought to warn against any philosophical or medical dogma in this emerging field. The truth is we just don’t know what is going on inside the mind of another person, simply because we are not them. For all our brain scans showing the parts that have been damaged, we cannot ask of these scans what existentially we do not know, nor can ever know.

The point I am wanting to make here, as a kind of preamble to the main argument, is that long before I had to deal with the challenge of dementia in my own family, I was already questioning as a pastor (or ‘cure of souls’ to use the old-fashioned term) the received, almost exclusively, medical wisdom surrounding dementia. Nurses and carers working in residential care homes, with floors dedicated to people with dementia, are reporting similar experiences, in particular through the medium of music[2]. Instead of bleakness or blankness that one might suppose in an environment of memory loss, they are enjoying surprisingly rich and deeply moving experiences with the people they care for.

However, as much as these experiences can act as signs of hope, in truth it is not lucidity that forms the basis of my reflections concerning my mother, even if she did respond to my Welsh hymn-singing, but something else that I learned in Christian community, namely the power of relationships in defining and sustaining who I am. Let me state the case in the form of a contrast: if my identity is something I create as an autonomous private individual, and dependent to a large degree on a proper functioning as we might conceive in Western conceptions of personhood, then, of course, once I lose my ability to remember who I am, I become less a person. In such an understanding, all the metaphors of losing a person to dementia, or them disappearing or going on a journey, are entirely apt. If, on the other hand, my identity is not something I self-actualise, as a private individual, nor simply cognitive, but rather something that is held by others, as is the case in many non-Western cultures, and as we might hope to find in Christian community, then the fact that someone forgets who they are need not cause diminishment or defect, but rather be the permission for others to hold their identity for them[3]. Certainly, this is how I would like to describe, and even explain, what happened with my mother. In short, despite the experience of dementia, indeed maybe because of the experience of dementia, she was more my mother, not less, simply because I was holding the identity of both of us. She didn’t know who I was. Nor did she know who she was. But I did. I knew who she was, and I knew who I was. I knew that I was her son, just as I knew that she was my mother. And it seemed that this was enough for both of us.

I appreciate that, in the cultural context of late modernity where dementia, as with dying itself, submits to far more clinical criteria, such an experience of intimacy between a son and a mother sounds fanciful, if not downright deluded. The medical facts are that large sections of her brain had died, and to that extent she was no longer able to function or even be the person that she was. Indeed, in so far as this medicalisation of dementia is held as a definitive statement on personhood, then the well-documented story of Sir Ian Botham not visiting his father in a care home, since for him his father in advanced dementia no longer existed, does have a certain logic to it, even if it sounds brutal.

What living in Christian community had taught me, however, and what living with disabled people in residential care (in a Roman Catholic context where human fragility is arguably more accepted than it is in my own Protestant evangelical tradition) had fostered in me many years previously is that such a clinical, solely cognitive rendering of human personhood is not only depressingly reductionist, but no less a creed than anything I might come up with in terms of a response to the challenge of dementia. Yes, the loss of memory has devastating impact, such that it is not inappropriate to talk about it in terms of bereavement. An inability or refusal to register this loss is indeed a form of denial. But to presume that cognitive dysfunction also means relational dysfunction fails to take into account the many and various other ways – emotional, physical and spiritual – in which human beings foster intimacy with one another. Anyone who has spent any time (the importance of ‘time’ is a notion I want to return to) working in residential care will know that emotional response and physical touch are very much the common currency. So, I walk into a room where my mother is sitting and even though she doesn’t recognise who I am, she has an emotional response that is commensurate with the bond that exists between us. Or I lean over to give her a kiss to say hello and she tugs my beard like she used to, her body memory able to respond even though her actual memory is gone.

For some this might seem like small beer – a clutching at straws. Maybe. For sure, my own experience of dementia did not have to face the challenge of personality change, or violent behaviour, which I imagine to be a different prospect all together. But what these small bodily gestures represent, I believe, and in particular our valuing of them, is the beginning of a protest against an overly cognitive approach to dementia, which, by definition, tends towards a fairly bleak trajectory of care. In fact, if we wanted to be very controversial, we could at this point turn the whole debate on its head and argue that it is precisely for lack of touch and lack of meaningful and healthy relationships that dementia occurs in the first place. To state the matter boldly: dementia is not a cause of isolation, but rather the effect – not so much a neurological problem, though it registers as such, but a sociological problem.

Controversial as this sounds, if this were proven – and there is a growing body of evidence that, in some cases, social isolation is very much the precursor of dementia – then it would only strengthen the approach taken here: namely, that the best way to care for someone with dementia is not simply by trying to address the medical situation (worse still, by trying to promote, as some kind of panacea, an early warning system otherwise known as payment by diagnosis) but by seeking to address the societal pressures that cause such debilitating and physically damaging isolation. In much the same way that dying itself needs to be rescued from its medicalisation, so we should charter a similar approach to dementia: not so many visits to the hospital to assess the latest situation, but more visits to those in care, and more time with the individual.

My own impression, and it is a hopeful one, is that one is beginning to discern in the culture at large something of a retrieval of this kind of personalism. It seems that people are growing tired, in some quarters at least, with what Martin Buber calls the ‘I-It’ world of rational objectivity and are reaching out towards something akin to what he describes as an ‘I-Thou’ world: a world of mystery and encounter[4]. Such are the signs of hope that it seems to me the time is ripe to be quite sophisticated in our claims. In short, dementia need not be the tragedy that our culture purports it to be. Nor should it be synonymous with the loss of identity that clinical science insists we see it as, for the simple reason that identity is not ours to lose in the first place. Rather, identity is something that is also held by others. In my life, thus far, I have been a son, a brother, a friend, a colleague, an uncle, a husband, a son-in-law, a father, not to mention the various other familial designations given to me. And in so far as those relationships still hold, then I continue to be that, even when I cease to remember who I am[5].

However, it is at this point in the argument that we need to go beyond questions of identity, even the more relational, communitarian notions of identity that have been proffered here, and begin to explore ultimate theological questions regarding personhood. After all, relationships are fragile to say the least. Being held in love by others is possible only so long as those relationships persist. In the care home that my mother lived in for the last few months of her life, one observed the tragic and all too common reality of relatives who were uncared for, unvisited and living among staff who could not possibly hold their identity for the simple reason that they had never shared it.

Quite apart from the questions this raises about the kind of society we live in, where so many people are discarded when they cease to function well, it exposes something of a problem and an irony in our more relational approach: namely, that such people could still end up depersonalised – regarded as less than a person – precisely at the point at which they lack strong relational networks. And this we can never accept as a Christian response to dementia. Hence, I want to argue that it is precisely at this point that the Christian community has something very unique to offer, not only to the debate surrounding dementia, but also to the many issues relating to disability in general. Central to a Christian understanding of personhood is not simply relational connectedness but ontological rootedness: a definition of personhood as that which is given by God and which therefore cannot be diminished, whether it be physical disability, neurological damage or even family neglect.

One notes in this respect the work of people like Henri Nouwen whose reflections on the sanctity of human personhood has acted in recent years as something of a rear-guard action against the terrifying utilitarianism of so much modern life. Through the experience of living in community (specifically the L’Arche communities), Nouwen alerts us – in much the same way as Leonard Cheshire and Sue Ryder did, just after the Second World War – to the importance of treating people as nothing less than persons created in the image of God. People have a right to be cared for and loved, Cheshire and Ryder argue, simply by virtue of being a member of the human race. Personhood is not something contingent on identity, or even relational health, nor must it be confused with it, but something given to us by God and therefore to be held with reverence and love[6].

In such communities, which for those of us who have read about and experienced them have become something of a microcosm of what a Christian society could be, the underlying basis upon which lives flourish depends not on the effectiveness of medical care, although it can never be less than that, nor even on the professionalisation of social care, for that has the tendency towards impersonality, but rather on the simple notion that to be human is to be loved, and to live humanly is to love.

In promoting this approach to dementia, and even to use the word ‘love’ in the context of neurological challenges, I am deeply aware of how amateurish it all sounds. It feels as useless as some chaplains feel when they turn up on a hospital ward only to be side-lined by consultants and registrars. Yet if we are to be true to our theological traditions, it surely behoves us to say, as those who take the incarnation as central to things believed, that it is precisely in the act of loving, in the actual encounter of another human being, however frail or weak, that something of the mystery of the world is unveiled. A theological approach to dementia is not about whether Scripture is read, prayers spoken, or communion offered (these are indeed sacraments of the Church, and have power in and of themselves in conveying grace) but rather on the simple commitment to honour this person before me in all the particularity of their person be they rich or poor, young or old, healthy or sick. Precisely in the act of loving, paying attention to what the poets call the ‘thisness’ of the actual conditions I encounter (as opposed to an idealised and often abstract version of life that has become increasingly more attractive in our media culture) one discovers intimations of the grand narrative that Christians believe is embodied in the gospel of Jesus.

For such communities to form, and more specifically for a way through the overwhelming negativity surrounding dementia, Nouwen is right to adduce that we must renegotiate everything, from the way we understand what we have achieved in our lives, to the way we experience time, all the way through to the way we understand salvation. For example, in the care home that my mother lived in for the last few months of her life, there was a whole corridor of people whose lives spanned everything from a former headmaster to a secretary at the same laboratory in Bridgend where my mother worked as a young woman. I came to know them as Hugh, Mary, Carol, and Mark. As a result of getting to know them, as well as the staff who were dedicated to their care, the long, magnolia-coloured corridor, which for any first-time visiting relative is something of an ordeal, became for me the corridor of memories. Hugh, next door to my mother, was clearly living out his years as the headmaster of a grammar school in nearby Port Talbot, and on one occasion convinced me that he was about to take the morning assembly and therefore I needed to give him time to prepare his notes. To the extent that one could understand what was going on and enter the period of life that Hugh clearly thought he was living in, one could play along with the ruse. As anyone who has cared for people with dementia will know, not only is there a poignancy about these scenarios, but there are times when it all becomes delightfully humorous. On another occasion, Hugh thought I was one of his prefects come to accompany him on to the stage at the assembly hall. In order to reach Hugh, however, not only in those moments of high drama, but more importantly in the rather more mundane moments when nothing is happening, or in the times when he was struggling to eat, time had to become less chronological and more sacramental. In order to fully encounter Hugh as the human being he truly was, including the condition of dementia that he now had, one had to renounce the tyranny of the clock, the need to get on, and simply learn to embrace the present tense of whatever Hugh was dealing with at that time[7].

Fortunately, Hugh lived in a care home where the staff had the conviction and, of course, the time concerning such leisureliness. Like the early hospice movement, which in many ways was a protest against the medicalisation of palliative care, many of the staff were able to transcend contractual notions of employment, as well as purely clinical notions of dementia, and offer instead high class, professional, medical care, as well as the personal touch. For Theresa Ahmad, who founded the home with her husband in the late nineties, there was simply no question that her staff would not engage personally and emotionally with the patients they served. Professionalism and love were not the mutually exclusive categories that they have so often become in our highly managerial, continual assessment world, but rather an essential convergence of the highest standards of nursing care with the highest regard for individual honouring and respect. Two of the staff, in fact, came to my mother’s funeral, even though technically it was their day off. To them she was not a statistic, but Linda. And together with us, friends and family, they grieved her passing.

Incidentally, or maybe not so incidentally, my mother was not a Christian nor, despite being located in a Welsh valley, was I conscious of any religious sentiment in the people I met. Hence, it is not surprising that there was a tension right at the heart of my own experience of trying to care. As a result of my experience, with my mother and through my own experience of working with people with cerebral palsy, I can now understand better the strains that many evangelicals feel who enter into the caring professions; tensions that require them at times to suspend their convictions, if that doesn’t sound too liberal, in order to offer care that honours the physical, cognitive and emotional challenges that these illnesses bring. This is not an argument for universalism, as attractive as that might be as an option, but rather a recognition that the vocation to care for people with dementia is about reverencing the vulnerability of each and every person, trusting that through these simple and faithful gestures of love something of the presence of Jesus is made known.

Even so, for all the sensitivities around this particular question of faith in a pluralistic and increasingly secular society, what I do want to highlight, as we come towards the end of this paper, is the way that wrestling theologically with dementia can yield surprisingly helpful and hopeful ways of responding to the questions we all face regarding faith and the loss of memory. After all, who has not been disturbed in their own Christian faith by seeing a respected minister, for example, or a renowned theologian, contract dementia, and not be able to even recollect the basic creeds. For all the astonishing stories that I referred to earlier, where suddenly in a prayer or a hymn the person we once knew seems to re-emerge, nevertheless we are more often than not left with profound existential questions about what would happen to our own faith if we too ended up with dementia. For instance, would I still be saved? Would I be able to maintain virtues that are distinctively Christian? Which person would I be before God?

To many of us, these questions sound preposterous, almost comical. And maybe in some sense they are. But they are important questions nonetheless and ones that can cause a great deal of anxiety among the faithful. However, as someone whose pastoral ministry is located at the interface of these existential questions of faith, doubt, suffering and morality, it occurs to me now that the very root of the fear surrounding dementia, namely loss of memory and the ramifications for faith, also provides possible clues as to the way out of the dark labyrinth of loss, because central to the biblical revelation is remembrance: not our remembrance of God, which can be erratic to say the least, but God’s remembrance of us, both now and in the future.

How the notion of remembrance might be a comfort to those facing the prospect of dementia, or even those caring for others with dementia, might not be immediately apparent. In contemporary language, remembrance conveys the idea of reminiscence, or even nostalgia, and it is hard to see how this might have any pastoral resonance beyond simple recollection. However, in biblical terminology, as is well rehearsed in even the most basic primer on Old Testament theology, remembrance is a far more lively concept, conveying not simply data about past events, but more the idea of sustenance: something akin to being held in the heart of God. Indeed, such is the power of remembrance that it can viewed as the reflex to the most basic gift of forgiveness. For as much as it is the gift of God to forgive our sins, and thereby remember them no more, as if they never existed; so conversely, it is in the gift of God to remember us, and thereby sustain us in love, both now and in the future. In the same way as anamnesis in the Lord’s Supper is about bringing past realities into the present, so God’s remembrance of us, makes present tense of our existence, assuring us of His eternal care long after we have remembered how to care for ourselves.

My own view on this, and one that needs developing, is that a restatement of the biblical notion of remembrance addresses not just these pastoral issues surrounding dementia, but some of the clichéd and often unconvincing images that we trade in around the precincts of death. For sure, there will be those who are comforted by our well-worn and hackneyed phrases of ‘going to a better place’ or ‘he’s more alive than he has ever been’ but the question of what happens when a person dies, where do they go, whether we have a soul that survives the body, remain disturbing existential questions, even for those who are in the believing community. Part of the reason for that is the way we make resurrection synonymous with the immortality of the soul. Remembrance on the other hand, God’s remembrance of us, not only circumvents these troubling questions, but also places the stress in the enterprise we call salvation most firmly on God’s activity. In returning specifically to the subject at hand, the anxieties that gather around faith and the loss of memory, this is of huge pastoral significance and resource. In short, for those who worry that they won’t have enough to make it to the end, who find their faith unsettled in the face of others who have lost their memory, who ponders over existential questions such as what part of me is soul, what part is body, and so on, it turns out that the Bible offers us something more credible: that faith is not something one self-generates, only to be dashed at the end by an inability to remember, but something given. The soul is not the invisible part of me but that which denotes the whole and which is both created and kept by God. And finally, long after I cease to remember who I am (and long before my demise into dementia becomes a possibility), I can be sure that God will remember me[8]. As Paul writes, almost as a parenthesis but in what is arguably his most profound theological statement: it is not that ‘we know God’, for that would place an intolerable burden upon our cognitive state, but rather ‘we are known by God’[9].

As paradoxical as it sounds, it is precisely the tragedy of dementia that opens the door, at least for this theologian and practitioner, to such a revelation. In and through the very personal experience of watching my mother lose her memory, I stumbled upon hidden repositories of truth and meaning, which I hope will furnish my ministry for many years to come. But then again, why should we be surprised by such a paradox? Paradox lies right at the heart of Christian worship. Dementia can be the breeding ground for hope, precisely because death is prelude to resurrection.

Footnotes

[1] D. Hansen, A Little Handbook on Having a Soul, Downers Grove: IVP, 1997, 30.

[2] TV Presenter Sally Magnuson explores this in Where Memories Go: Why Dementia Changes Everything, London: Two Roads, 2014.

[3] See J. Swinton, Dementia: Living in the Memories of God, London: SCM, 2012, 153-185 for an expansion of this perspective.

[4] M. Buber, I and Thou, translated by Ronald Gregor Smith, Edinburgh: T &T Clark, 1999.

[5] See G. Stokes, And Still the Music Plays: Stories of People with Dementia, London: Hawker Publications, 2008, for a series of personal and very moving stories of people with dementia.

[6] Nouwen’s most explicit articulation of this is Adam: God’s Beloved, Maryknoll: Orbis, 1997. Adam was someone to whom Nouwen was assigned as carer in the early years of his time at Daybreak, Toronto.

[7] See J. Swinton, Becoming Friends of Time: Disability, Timefullness, and Gentle Discipleship, London, SCM, 2006.

[8] Swinton, Dementia, 186-226.

[9] Galatians 4:9.

About the author

Rev Dr Ian Stackhouse, Senior Pastor, Millmead, Guildford Baptist Church, PhD (LST/Middx); MTh (LST/Middx); BA Hons (Dunelm); PGCE (Dunelm); Accredited Baptist Minister.

Ian Stackhouse has been the senior pastor of Millmead, Guildford Baptist Church, since 2004 and has been in Christian ministry for over 30 years. He is married to Susanna and they have four sons who are at various stages of young adult life. Ian has authored five books (The Gospel Driven Church being his PhD thesis), has edited a book with Dr Oliver Crisp, entitled Text Message, and has contributed various chapters and articles to other publications. Primarily based at Millmead, some of his time is given to teaching at seminaries, churches, conferences and retreats – both in the UK and overseas.

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