Love in the time of dementia: is care without love enough?
Friday, 20 December 2019
| David Martin and John Swinton
Towards the beginning of Michael Verdie’s recent powerful film, Love is Listening: Dementia without loneliness, an African American woman with advanced dementia reflects on her life experience. ‘I don’t know where I am. I don’t know where I’m going. I don’t know where I’ve just come from. But I’m not fearful.’ She pauses and looks deeply into the eyes of the person she is talking to. ‘Because I see all around me - I don’t see a lot, - but I see patience.’ She looks upwards and away, her eyes glaze over a little. ‘I see gratitude. I see tolerance.’ She slowly looks back towards her friend and smiles. ‘I think I see love.’ She smiles. ‘And your face is a picture of love.’
It’s a very beautiful and moving scene. Even when we feel lost, uncertain about the future and unable to work out where life is going, we can still feel, see and experience love. More than that, the presence of such love can drive out fear. The experience of dementia, at times, can be quite frightening. We need people who will love us out of our fear and help us to find love amidst the challenges. If we know we are loved, we need not be fearful. In the time of dementia (like all times), we need people who will act gently, patiently, kindly, humbly, respectfully, peacefully. We need people whose lives are filled with forgiveness, honesty and integrity (1 Corinthians 13). We need to be reminded of the presence of the God who is love. We need people whose faces are a picture of love.
The recent Royal Commission on aged care has raised our consciousness to the disturbing fact that such love is not always available to people living with dementia. The Commission was brought together in response to a series of high-profile cases of abuse and neglect of elderly people. The intention of the Commission was to understand why such abuses have been happening and to help ensure that such things do not happen in the future. The Commission’s focus on such things as staffing, professional boundaries, training, finances, inappropriate drug use, funding and so forth is necessary and important. It is notable however, that in the midst of the many conversations that the Commission engaged in, there have been no discussions around the role of love in elderly care. Similarly, if we turn to the Australian Government’s Aged Care Quality and Safety Commission’s document ‘Guidance and resources for providers to support the aged care quality standards’, no reference is made to love in any of its 195 pages.
At one level this might seem understandable. As the paradigms of business continue to be applied to the Aged Care enterprise - now being described as a ‘market’, an ‘industry’, a ‘sector’ - with elderly people viewed primarily as consumers whose choice should sit at the centre of the system, there will inevitably be a difficult tension between the need for safety, professionalism, clinical compliance and financial governance and the ‘soft’, ‘dangerous’ and ‘risky’ language of love. There is a strange irony here in the sense that some argue that the consumer should be at the heart of the system, whilst at the same time avoiding the language of the heart. The idea that love and the enablement of love might be a key indicator for success within an organisation is not something that is easily assimilated into standard business models. And yet, while those of us within the aged care sector teach about ‘professional boundaries’ (important as such boundaries can be), the spaces where we encounter truly personalised, life changing care sometimes sit uneasily on the edge of these boundaries as they are lived out by those who offer care that is marked by the core practices of love: joy, peace, forbearance, kindness, goodness, faithfulness. Care without love may be ‘safe’ and ‘efficient’ but it is inevitably lacking.
The Royal Commission and the Aged Care Standards have tried to address the vitally important issue of injustice and abuse towards the elderly by laying down rules and guidelines that are designed to protect, empower and enable people to live well and to live safely. That is of course a noble intention. The problem is that care that does not actively involve love can quickly become reduced to a series of tasks. When this happens, we end up not with positive, proactive loving care strategies, but with a series of rules and regulations that are designed to prevent bad care rather than ensure loving care. But is care without love really enough?
Law and gospel
It is interesting to reflect on these things in relation to Scripture. One thing that becomes clear as we read through the Old Testament is that human beings are pretty hopeless at sticking to the rules! God makes it clear that he wants the people of Israel to love him and to live with him in love, peace and faithfulness. He gives them rules and regulations that they duly ignore, break, distort or misinterpret. Yahweh tries everything! He threatens them, he cajoles them, he punishes them, but still they don’t follow God’s rules. Eventually God sends Jesus, the one who informs us that the sum of the law and the prophets is to: ‘Love the Lord your God with all your heart and with all your soul and with all your mind’. This is the first and greatest commandment. And the second is like it: ‘Love your neighbour as yourself’. All the Law and the Prophets hang on these two commandments’ (Matthew 22:38-39). The intention of the Law and the Prophets remains the same – to help people to love God and enjoy God’s holy love forever – but now the law is not simply encountered in rules and regulations. In Jesus, love becomes action; a way of being with one another that is marked by the fruit of the Spirit. As we live lives of love; as we learn how to love God, neighbour and ourselves, so we please God and flourish even in the difficult times of our lives.
What was true for the people of Israel may well also be true for aged care regulations that don’t pay proper attention to love. The aged care guidelines are intended to protect people and to maximise their opportunities of living well. The problem is that rules without love tend to push down on people and either make them stick only within the parameters of the rules, thus ignoring other important aspects of the situation (Mark 3:1-4), or, particularly if there are a lot of rules, to become disheartened and ground down by trying to stick to them (Matthew 23:4). When this happens, there is little motivation for creativity or innovation and no real incentive for love. We need rules and regulations, but we also need people with faces that are a picture of love. It is clear that our political processes struggle with the language of love. If the State can’t talk about love, then perhaps it is our calling as Christians to stand in the gap; to show people what love looks like within the context of the care of people living with dementia.
By this everyone will know that you are my disciples, if you love one another
Throughout Australia there are more than 400,000 people living with dementia. A significant number of these people are Christians; disciples of Jesus who desire to discover life in all of its fullness in the time of dementia. It may be a difficult task to change the political system into a place of love (although we must continue to try). But surely, at a minimum Jesus’ Body can be seen to reveal his love to those disciples who are living with dementia. Perhaps if society sees the love of Jesus at work, it might understand why care without love can never be enough.
The first task of the church then is to continue to recognise people’s discipleship and to strive with innovation and faithful imagination to enable people living with dementia to continue to experience love, joy, peace, forbearance, kindness, goodness, faithfulness and gentleness. How do we do this? It’s remarkably simple: we offer and receive Christ-like friendship. In John 15:15, Jesus radically changes the identity of his disciples: ‘I no longer call you servants, because a servant does not know his master's business. Instead, I have called you friends’ (John 15:15). For Jesus discipleship is friendship. But the friendships of Jesus are different from many of our friendships. Jesus sat with the tax collectors, the sinners, the prostitutes, those whom society rejected and abused; those to whom no one offered love. In offering radical hospitality through friendship Jesus cuts through cultural stigma and draws people into a journey that follows the way of the heart. Love is not complicated. We just have to notice its importance and act accordingly. If each member of Jesus’ Body were to find the time to offer friendship to someone with dementia, life in all of its fullness would become a real possibility for all of us. Such love involves care, but it is care that is immersed in love.
The second task of the church is tied in with the first. We need to notice people. One of the heart-breaking experiences for people with dementia is not only that they have forgotten things, but that they are often forgotten. Friends abandon them, we stop using their names and begin to call them patients, consumers, clients, units, sufferers. ‘She’s not the person she used to be …’ When this happens people-as-people begin to disappear. The task of the church is to notice the things that others often do not or cannot see: the value of people, their lovability, the hopefulness of their lives, the possibilities for development even in the midst of change. Love notices pain and loneliness and steps out in faith to counter it. Noticing means renewing our minds and allowing the Spirit of love to draw us close to those with whom others are distant. A ministry of friendship and noticing is a powerful counter cultural manifestation of God’s love in the time of dementia.
‘And your face is a picture of love’
The findings of the Royal Commission are important, and the ACQS guidelines are helpful and necessary. We require legislation that is protective and fair. Nevertheless, safety and love need to be inseparable companions. It may well be that the language of love is difficult within the professional domain. However, that can never be so within the church. The role of Christians is to reveal the love of God in the time of dementia and to ensure that that which is absent from current legislation is not absent from the lives of Jesus’ disciples. The beginning place for mending the wound of lovelessness lies within the lives of Christians who live into the love of God. It’s not complicated.
John Swinton is Professor in Practical Theology and Pastoral Care at the University of Aberdeen, Scotland, UK. He is the author of a number of books including Dementia: Living in the memories of God. John is also a consultant and advisor for HammondCare, Sydney.
David Martin is Group General Manager of HammondCare. With over 25 years in manufacturing, human resources and aged care leadership roles, he has worked at HammondCare, an Independent Christian Charity specialising in residential, community, dementia and health services for the past 13 years.
This article first appeared in Beyond the Bucket List: Aging Grace-fully, Equip 35 (November 2019), 17-19. You can subscribe to Equip here.