Where is God in Dementia?: Trusting Immanuel
by John Swinton
Do not be afraid or discouraged, for the Lord will personally go ahead of you. He will be with you; he will neither fail you nor abandon you. Deuteronomy 31:8
One of the striking things about the experience of dementia is the way in which it invokes fear in people. People fear dementia more than they fear cancer. But what exactly is it that we fear when we contemplate dementia? Is it a fear that we will somehow lose ourselves; that all of the things – memories, thoughts, histories, narrative – that made us who we think we are will be gone, leaving us in a boundless sea of meaningless experiences within which we can make little sense; encountering ourselves as condemned to a life timeless emptiness?
If that was in fact the case, then maybe we would have things to fear! But how can we believe such a thing when the writer to the Hebrews is so clear about Jesus’ promise: ‘I will never leave you nor forsake you.’ (Hebrews 13:5-6) In Matthew 28:20, Jesus couldn’t be more clear as to where he is in the lives of all people, including those with dementia: ‘Behold, I am with you always, to the end of the age.’ If our fear of dementia has to do with abandonment, loneliness and loss of identity, then we just need to remain true to the scriptures to be certain that that is not the case. Wherever we go, in the depths of brokenness or the heights of joy, Jesus is with us.
If I go up to heaven, you are there;
if I go down to the grave, you are there.
If I ride the wings of the morning,
if I dwell by the farthest oceans,
even there your hand will guide me,
and your strength will support me.
When we forget everything, Jesus is there.
But perhaps our real fear is not that we will forget, but that we will be forgotten. Maybe people will begin to talk about me as if I am not really present. Perhaps they will lock me away in a place where I am surrounded by strangers who never knew me. Perhaps people will say, ‘He is not the person he used to be.’ Or worse, that, ‘She is just a shell.’ But if I am not the person I used to be; if I am just a shell, then why would anyone care for me and even if they did who would they be caring for? Maybe we fear this kind of lostness more than the lostness of our personal forgetting. The tragedy of our modern world is that this kind of fear is well placed. People with dementia are very often forgotten.
But the beauty of the gospel is that we need not fear anything at all. Why? Because nothing can separate us from the love of God. As Paul puts it in Romans 8:38: ‘For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, [nor dementia], nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.’
While it is right that we should lament the things that have been lost, the task of the Church is to accompany people with dementia in faith, hope and love; trusting that God has not abandoned them and that his disciples should not do so either. When we approach one another like this, the binding power of the Holy Spirit will undoubtedly enable us to be with one another in ways that may be inexpressible, but which are always true, faithful and healing. Having dementia is not the end of our stories.
Revd Professor John Swinton lectures at Aberdeen University. He is an ordained minister of the Church of Scotland who for more than a decade worked as a registered nurse specialising in psychiatry and learning disabilities. He also has been a hospital chaplain. He has published extensively on practical theology, pastoral care, mental health studies, disability theology, dementia and nursing.
Swinton is one of the keynote speakers at the Enabling Church: Everybody In! day conference which will look at the challenges faced by the UK Church in welcoming and including people with all kinds of disabilities – including sight loss, hearing loss, autism, intellectual disabilities and loss of mobility. The conference is run by Churches for All, a network of 14 Christian organisation working with disabled people.
Enabling Church: Everybody in! takes place on June 3rd at Bethel Convention Centre in West Bromwich, just off the M5 and near central Birmingham.