A presentation at the ‘ONE STEP AT A TIME’ – Dementia and the Church Conference organised by Faith in Older People and the Church of Scotland Guild
My name is Barbara Davey and I am a Quaker, a member of the Religious Society of Friends. I will tell you something of what Friends have been doing nationally around the subject of dementia; but when I come to talk about the challenges we face, I feel I can speak only in a personal capacity – as a Quaker, not on behalf of Quakers.
Who is involved? I think we are all involved. There won’t be a Quaker meeting in the country which isn’t touched by dementia. We know there is no cure, only care, and, as in any other faith community, we endeavor to care for one another with love and compassion. Encountering dementia can seem a hard and stony road, often a lonely road, so I hope our Quaker communities are places where we can be honest and find fellowship, be nourished and sustained.
The chapter on Community in our book of Christian discipline, Quaker Faith & Practice, begins with words by Isaac Penington, written in 1667
Our life is love, and peace, and tenderness; bearing one with another…praying one for another, and helping one another up with a tender hand. (Q F&P 10.01)
These words continue to be an inspiration for us and we are encouraged with material developed by Friend’s House, including, for example, the leaflet Love & Loss which touches on dementia within the context of End of Life Issues.
The Quaker Mental Health Forum, supported by the Retreat in York, held a one day gathering frecently ‘Quakers and Dementia: our shared journey’. The day gave us an opportunity to explore spiritual aspects as well as practical help, and there were three keynote speakers, including a Friend herself living with dementia.
Some brief quotes from the speakers
from a carer – It is easy to feel inadequate and low, so a positive response which focuses on the practical solutions without hearing the emotions can make a carer feel even more inadequate.
from someone whose friend has dementia – It was a relationship of equals…it wasn’t about me caring for a Friend who was a victim of illness…our Friendship was strengthened as we continued to accompany one another in the Spirit.
from someone living with dementia – When I feel inadequate and lost I remain in the present moment no matter how fragile it feels…we may feel the sacredness and preciousness of that present moment.
The Quaker Mental Health Group coordinates the work of all the groups across Quakers involved in these issues. Their leaflet Mental Health in our meetings explores concerns for Friends to consider individually and for meetings to consider together, within a context of prayerful discernment.
There’s also a longer booklet for you to look at Encounters with mental distress. Friends were invited to share their stories, whether postive or challenging, and the result is a candid collection of encounters, responses and insights that we hope will enable us to be more open, more compassionate and more accepting.
The Mental Health Group has now commissioned a specific longer leaflet entitled Dementia in our Meetings – and offers thoughts on being together in a Quaker community when dementia is present.
Although the number of those living with dementia is growing, and some say there is a crisis in our midst, the condition is not a new concern – in our book of Quaker faith & practice there is a moving passage, written in 1714, about the old age of William Penn, one of the founders of Quakerism.
His memory was almost quite lost, and the use of his understanding suspended; so that he was not so conversible as formerly; and yet as near the Truth, in the love of it, as before. (Q F&P 21.62)
It was important for early Friends to acknowledge the reality of Penn’s old age, and those last words are significant aren’t they – and yet as near the Truth in the love of it, as before – because they show that Friends felt this final stage of William Penn’s life had spiritual value, however lost to the world he may appear. The insight is full of riches, but I’ll admit – it is hard for me to hold on to this when a life can appear so diminished.
The account goes on to describe an evening meeting we had together there; wherein we were greatly comforted. Quaker meetings for worship are simple affairs – we come together in community and in stillness, usually sitting in a circle. All are valued, whether they are led to offer spoken ministry or uphold the worship in silence. George Fox, another early Friend, wrote Meet together, and know one another in that which is eternal, which was before the world was (Q F&P 2.35 from Epistle 149). Worship can come as a gift, responding with our hearts, and if you’re experiencing dementia you can be just as much part of it, however poorly your head may be functioning.
I have, however, known Friends with dementia for whom meeting for worship becomes a space they are no longer comfortable in.
For me then, it is more about sitting alongside, usually in a care home, sitting in solidarity as it were, being a bridge to those things which are eternal, for those who have no bridge. No words are necessary, and that’s why I like the image of a bridge. I try to share a sense of resting in God, and God resting in us, and I try to accept what the Spirit enables each of us to be at any given moment.
Having faith is not the same as having the certainty of belief is it? Dementia may seem a dark place, but who can know what might be going on in that darkness – the Spirit has a way of working out of our sight.
“If we walk by faith, not by sight” (II Corinthians 5:7) who knows where we may be led?
Thank you for this opportunity to share some reflections, and THANK YOU to FIOP for your continuing work on dementia. May we all uphold you in this.
The title of your resource ‘One Step at a Time’ brings to mind the opening page of the poet and writer Lemn Sissay’s collection ‘Gold from the Stone’.
“How do you do it?” said night, “how do you wake and shine?”
“I keep it simple,” said light, “one day at a time.”
I’d like to thank Alison Mitchell, Mental Health Development Officer for Quakers in Britain, for advice preparing this presentaion, and I’d also like to mention the work of priest and writer Martin Laird whose work has provided me with some helpful insights.