Growing up I had a difficult time reconciling how God could create a life suffering mental retardation from birth. Recently, while trying to understand the dementia that had now consumed my grandmother, Aunt Margie's mom and lifelong caretaker, I came across the following. For the first time, I think I understand. This entry is dedicated to my grandmother who went home to the Lord earlier this year and especially to my aunt, Margie Medley who suffered with Down Syndrome all her beautiful life:
Margaret Mary Medley
December 28, 1945 - March 19, 1995
DEMENTIA AND A CHRISTIAN PERSPECTIVE*
A Paper from the Church of England’s Mission and Public Affairs Council
The Mission & Public Affairs Council of the Church of England is the body responsible for overseeing research and comment on social and political issues on behalf of the Church. The Council comprises a representative group of bishops,clergy and lay people with interest and expertise in the relevant areas, and reports to the General Synod through the Archbishops’ Council.
The origins of the Christian faith lie deep within the Jewish tradition which is recorded and extolled in the Old Testament section of the Bible. In the creation story at the beginning of Genesis, it is clear and significant that God created human beings in His own image. Saint Irenaeus was later to write that God became man so that man could become divine. What the Old Testament account of the creation makes very clear is that each person is created as an individual who is to be respected and dignified because each person is to become like God. Most certainly human beings are created in order to enter into relationships with other human beings, but they do so as individuals in their own right. What develops from this is a concept of human relating which is interdependent, rather than dependent or independent.
Jewish history from creation onwards is a story of a journey in which human beings work out the theme of interdependence with the one God whom they believe speaks to them in both action and history. It is a journey which is fascinating in its complexity, its sadness and its glory, and one which has inspired some of the greatest minds in the history of mankind. It is not to be understood lightly or without careful study. It provides us with a unique understanding of human endeavour in the history of the world.
The Christian faith is articulated in the pages of the New Testament section of the Bible where we find a cogent argument in St. Paul’s letters that Christians are understood as temples of the Holy Spirit viz.
“Do you not know that you are God’s temple and that God’s spirit dwells in you? ……… For God’s temple is holy and you are that temple.” (1Corinthians 3 vs.16 /17)
Dementia colours the very walls of that temple. The framework of a person’s inner life breaks down and fractures. The core personality disperses and eventually disappears leaving a silent emptiness. Yet what remains is a temple (in Christian theology) where the spirit of God dwells. Whatever stage the dementia has reached, the person in all their human frailty continues to seek and become divine. The person is a temple wherein we experience the Spirit and very presence of God.
In the gospels is an account of Jesus healing a paralysed man who has been carried by four friends (carers) and, because the crowd around Jesus is so large, they take him onto the roof, roll it back and lower him close to where Jesus is standing [Luke 5:17-19]. This might be described as ‘enabled’ healing, dependent on the active support of the carers. The healing by Jesus can only go ahead because of the care, support and insight of a third party(ies). People with dementia, especially in the latter stages, depend upon the support of others. This is a proper dependency on others to carry persons with dementia through to the end.
Sadly memory is one of the first casualties of dementia. Whilst Reminiscence Therapy is important for the dementia sufferer, eventually it no longer helps and the popular hymns and familiar words of worship committed to memory are no longer within reach. For those who define a person in terms of memory and continuity, loss of memory raises questions about human identity. The bleak reality of an attribute/consciousness-based definition of what it is to be a person is that those without the attributes are not fully persons. Conversely a rich doctrine of human social cohesion and belonging indicates a person’s identity continuing in the memory of others.
In the latter stages of dementia what is left is the physical, a living body to be fed and washed and nurtured – and loved. Being a temple of the Holy Spirit there is the possibility of transformation. In the Christian tradition, transformation comes through the grace of God which is particularly made visible through the sacraments of the church. Transformation of the physical happens when the body is sustained by the living bread and the cup of salvation of Holy Communion. The grace of God still operates in an ‘empty shell’.
Theologically, an essential part of being human and human identity is being known by God. As Bonhoeffer famously put it, ‘Whoever I am, thou knowest, O God, I am thine’ [Letters and Papers from Prison, SCM, 1971 pages 347-8]. Again in terms of a theological understanding, the ultimate guarantee of our identity is the prayer of the Psalmist ‘to be remembered by God’.
“For what human person knows what is truly human except the human spirit that is within? So also no one comprehends what is truly God’s except the Spirit of God” ( 1 Corinthians 2, v11).
Helpful for our purpose is the analogy Paul makes between the human spirit as the agent of self-knowledge and the divine spirit as the agent of the knowledge of God. It follows that ultimately our identity rests not on what we know or remember of ourselves, but on being known and remembered by God.
Jesus always addressed health and healing holistically. He was very clear that healing and salvation encompass the whole person – body, soul, mind, spirit, personality, culture, and (in German) Sitz-im-Leben. Therefore, those who support the sufferer whether family, friends or the wider community are crucial to the provision of well being and health. This is a pastoral ministry undertaken by the local church/faith community and by the wider community often represented in the person of the community nurse, social worker and carer.
This ministry, if we are to understand and take seriously interdependence, is not one directional- a service from the carer to the sufferer. Rather, we need always to be open to the possibility of the ministry the sufferer offers the carer. Archdeacon Hawes, who has long experience of this ministry, has written:
I well remember as a student spending time in a hospital for people with learning disabilities, what in those days was called a hospital for the mentally handicapped. (Very few such hospitals exist today). I was asked to care for a boy of eight who had profound and multiple disabilities. In fact, the only senses he had were touch and smell. He could not see, hear, speak or walk. Tickle his feet and you were rewarded with an infectious smile which spoke of God. He died before he was nine. I struggled to make any sense of his life which had been so limited, so restricted until his nurse explained that she needed him in order to be able to care and exercise her ministry. Of course, the ministry was his to the nurse and to all the other carers.
Finally, the context of the Christian faith is the eternal. The resurrection of Jesus points us to eternity and the full glory of God, so often described as heaven. What happened before we were born and during our life time is not the full story. In Christian theology and thought, the journey of life moves beyond death into the numinous, the otherness of God. Just as God is with us now, so He awaits us in His transcendence where through His grace we are able to complete the process of becoming divine and sharing in the glory of God. Here is real transformation as we are changed ‘from glory to glory’ – as it says in one Christian hymn. All that assailed us in our human experience is left behind. Here there is no place for mental illness, for dementia, for learning disabilities, and a whole range of other conditions. Here there is wholeness, mystery, glory, wrapped for eternity in the divine embrace of the God of love.
Dr Philip Giddings January 2010
Chair,
Mission and Public Affairs Council
* The Council gratefully acknowledges the very substantial contribution Archdeacon Arthur Hawes has made to the preparation of this note.
