At a recent dementia-friendly churches local network meeting, we shared personal experiences of dementia. What had been the impact for us? What had motivated us to continue to take action on dementia now?
![Image of speech bubbles containing: "Why am I involved now? It was hugely isolating to live through this with my mother. There was nobody I could talk to. I knew nothing. I had no idea that this change, which was enormous, was dementia. The not knowing and the loneliness were so hard." "I’m been so grateful for the friendship and connections – and for being introduced to [church groups for people affected by dementia]. Without that, I would have been up a creek." "I feel scarred by the experience with my parents. When I was desperate, the thing that saved me was that I found the Alzheimer’s Society and I rang their number for help." "It’s been possible to use my own personal experience of dementia to be alongside neighbours and their relatives." "After a dementia-focused service at our church, people started to talk about their experiences of dementia and the momentum grew to start a group." "When you’ve been through it, you are able to support others." "None of us can go it alone. There can be very real challenges on the journey through dementia – but it doesn’t have to be lonely. They say it takes a community to bring up a child. It also takes a community to journey through dementia." "We looked after my husband’s mom in our home for two years until she passed. I gave up my work to care for her and it opened my eyes and heart to the need for this work."](/content/pages/uploaded_images/1616745294-gjkM.png)
We all have choices about how live with and through the challenges we have to face in life. It’s important to recognise that deep and sometimes extremely painful experiences can continue to motivate us to name and face dementia together. It’s because of them that we want to create space to listen and learn together and to raise awareness, space for honest conversations about dementia, space to hear the voices of people with lived experience of dementia and to keep connections with them.
For me, this goes to the heart of our faith. As we live through Holy Week and Good Friday and Easter, there’s something about living with and through the toughest experiences of life, the unchosen challenges, believing that the tough stuff doesn’t have the last word: from the depths of our experience, we can reach out and enables life-giving connections, helping us to stay in step with others. These words are from Psalm 84 verses 5-6:
“Blessed is the [wo]man whose strength is in thee : in whose heart are thy ways.
Who going through the vale of misery use it for a well : and the pools are filled with water.”
As we approach Easter, we live into the impact of both the lamentation and the celebration, both the cross and the ressurection. I want to finish with some words from a sermon preached in Lincoln Cathedral in May 2014 by Canon Dr Mark Hocknull, Chancellor of Lincoln and Visiting Senior Fellow, University of Lincoln:
“There is much in this life that is beautiful, daring, confident, inspiring, and more, all of which deserves our gratitude. But there is also disappointment, heartbreak, and failure. And all too often we tend to avoid this in church. Or if not avoid it, at least feel the pressure to move on from it too quickly toward some kind of resolution, fleeing the cross-like experiences of life to the promise of resurrection. And not only in church, but also in daily life… We don’t mean to be callous or insensitive, we are just at such a loss with loss. We feel inadequate to the task of confronting the darkness of our lives and this world and so flee to the light in denial. I sometimes feel that this tendency is particularly acute in the church… But just as before there is resurrection there is the cross, so also [on the road to Emmaus in Luke 24] before there are burning hearts there are broken hearts… I’m only just now really beginning to appreciate that part and parcel of being human is being broken. And it is to heartbroken disciples…that the Risen Christ comes, walking along with us on the road, astonished that we don’t see as we ought, teaching us the Scriptures that we may understand, sharing his presence through bread and wine, and granting burning hearts that prompt us back into the world. Not changed into something different, but seeing the world and ourselves differently because of our encounter with him.”