Relying on God through dementia
What are our experiences of God journeying with us through advancing dementia? At our Dementia-Friendly Churches Network Meeting in Lichfield Cathedral last autumn, Revd Sue Cooke shared the impact on her own faith of her husband Stuart’s advancing dementia. Sue, a retired teacher, was ordained in 2021 and is Associate Priest at St John’s Church, Littleworth, Stafford. Her words have a profound resonance, recognising that through the unchosen challenge of Stuart’s dementia she is seeing a side of God she has never seen before, because she has never had to rely on God like this before.
In this film, just 14 minutes long, you can hear Sue speaking at our Network Meeting, sharing her experience:
The following paragraphs are summary of what Sue shared. When she first went up to serve at the Lord’s Table, following her ordination, her husband Stuart followed her: she remembers vividly having to ask him to go back to his seat. For nearly 40 years they had worshipped together and gone up to the Lord’s table together, and Stuart had supported Sue in the path to ordination - but this moment was clearly the point when Sue needed to step forwards without Stuart. The fact Stuart didn’t realise this was an example of the cognitive disconnect that finally, after persistence, led to a diagnosis of vascular dementia for Stuart.
Sue’s conversation with God wasn’t easy, but it was full of integrity and honesty: she got angry with God. We don’t have to hide our feelings from God. “You’ve dangled the carrot of ministry before me and I’ve fallen in love with it. Why are your taking it away?” She felt God answer, “Sue, I am going to bless you through this”. When she responded, “Really??? How?”, God said, “Because I am about to reveal to you a side of me that you have never yet seen.” “Why?” “Because you have never had to rely on me before like this.”
It got tough. Away in the caravan, Stuart said, “I’m happier than I can remember for a long time.” That afternoon, he caught Covid: as the doctor explained, if there were ten levels of dementia, which there aren’t, this took him straight to the tenth level and against expectations, he didn’t come back down. So it took away from Sue the decision about moving Stuart into residential care – and Stuart now lives in a nursing home in Trentham, within walking distance of the family home.
Sue loves the family-run nursing home, where the men look after “Papa Stuie”, as they call him: Stuart adores them. When Stuart is sitting between Sue and a carer, he choses to hold the hand of his carer. So there are no tears when Sue leaves. She recognises this as God showing her another side of himself.
As she spoke, Sue held in her hand a heart shaped piece of card, with mustard seeds glued to it. She knows that if she has faith which is only the size of tiny mustard seed, God can do wonders with that.
“Feeding our Faith” is one of the three key areas of focus in “Seeking the Kingdom”, our Diocesan Strategy 2025-30. In his introduction to “Seeking the Kingdom” Bishop Michael says:
“I want our strategy to be about feeding and supporting one another as followers of Jesus, and about building one another up, as we journey together.”
As we share experiences of faith through advancing dementia, we can do just that. The words of Rev. Professor John Swinton, Professor in Practical Theology and Pastoral Care at University of Aberdeen, shared a few years back in another context in our dementia-friendly churches network, apply equally here, listening to Sue sharing her own experiences. We are drawn forwards, in our Christian faith and hope and love:
“In a straightforward, honest and compassionate way the stories that are told and the wisdom that is shared can help all of us together overcome our fear of dementia, and journey together into a hopeful future that is certainly marked by suffering, but refuses to be defined by it.
There is always a space for hope.”
I wonder whether you might show the 14-minute film of Rev Sue Cooke in your own churches, offering space for people to reflect together after watching the film. Reflecting on Sue’s experiences, what are our own experiences of God journeying with us and others, through advancing dementia?
We did this at our dementia-friendly churches Network Meeting in Lichfield in the Autumn. Profound connections were made, journeying through deep waters, recognising unexpected blessings, affirming that the toughest place is not the end of the story.
If you’d like to know more about our Dementia-friendly Churches network, look further around our website and/or email Sarah Thorpe, our Dementia-Friendly Church Enabler, or phone her on 0798 224 8949.