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Dementia
Dementia Friendly Churches
Coronavirus

Coronavirus and dementia: Conversations, connections, challenge and change

We’re facing so many challenges in this heightened season, as Coronavirus brings huge change to the shape of everyday life for all of us.

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Blog by Sarah Thorpe, one of our Dementia-Friendly Churches Enablers

Some of this is particularly acute for people affected by dementia, including isolation and loss of the usual structure that gives a shape to the week. George Rook, in a recent post on his blog “Living as well as I can with dementia”, acknowledges, “This time of absence and disorientation will be difficult. We will be unbalanced.”

Snippets from conversations across the network

So how do we keep connections? Here are some things that have been said in conversations around the Dementia-Friendly Churches Network in recent days.

CLIVE, LIVING WITH DEMENTIA: “I’m ex-military. I’m used to putting up with whatever. It’s just another thing. It’s one of our sayings in the military: Learn, Adapt, Overcome. Find little things to occupy yourself. I’ve got some painting by number. I do an hour a day on that. There’s things to occupy us on iPads. And I pop out into the garden. We’ve arranged Zoom on-line meetings for our DEEP group once a week on a Friday. I won’t get in a corner and curl up and die. I’ll get on with life – live life as best I can. If people want to call, we’re really open to calls to support one another.”

BARBARA, CLIVE’S WIFE: “It’s not going to be forever. We are going to get through this. We’ll really appreciate all getting together again. You find ways round it. We won’t take hugs for granted in the future.”

VICAR: “I’m really aware of the extra demands for people affected by dementia and wonder what we can best do to support.”

NEIGHBOUR: “My neighbour’s living alone. She has Alzheimer’s and she’s in her 90s. She’s still saying, “But I can still walk round the village, can’t it?” I explained that she can’t. But she didn’t remember – and she walked round the village again. I wonder if a note on the front door may help to remind her. It’s so hard for her, not being able to remember.”

SOMEONE WHO COMES TO A CHURCH DEMENTIA GROUP: “What a beautiful morning it is. It is a bad time we’re living through but we’ve got to be positive and we’re very lucky to have phones which will ring and give us a chat to our friends round and about. We need to keep contact with our friends to keep us all sane!”

CHURCH DEMENTIA COORDINATOR, KEEPING CONNECTIONS WITH SOMEONE FROM A LOCAL RESIDENTIAL HOME WHO “LIVES FOR CHURCH”: “We’re doing our 1pm service today over Skype, connecting with him that way. We’ll give it a go and try out the technology. We’re also planning to do something electronically for the Easter service we always do in the Home, to keep the contact with them.”

DAUGHTER WHOSE MOTHER IS IN RESIDIENTIAL CARE: “We’re working as a team with the care home staff. They are very caring.”

LEADERS OF CHURCH GROUPS THAT WELCOME PEOPLE AFFECTED BY DEMENTIA: “We spoke to everyone when we had to cancel last week’s meeting. We’ve got phone numbers and we’ll continue to give a ring to say hello and keep in touch.” “We’re in touch with people from church who come. For the people who come from a local residential home, we’re thinking about doing a card: perhaps we can do a card with a prayer in it for each person who comes, sending it at the time of our usual monthly meeting.” “It’s a really strong group with a good band of helpers, who are becoming more and more proactive in chatting to people and keeping connections. Everyone’s been contacted.”

NEICE, WHO HAD TO FIGHT FOR FINANCIAL SUPPORT FOR HER AUNT WHO NOW NEEDS NURSING CARE: “It took a lot of letter writing and a lot of standing your ground. Because of the dementia-friendly churches training and what I’ve picked up elsewhere – including support from Age UK, who were so helpful on the funding – my auntie is now in a wonderful home.”

PROFESSIONAL, WORKING WITH PEOPLE WITH DEMENTIA: “It's all changing on a day by day basis for us, so just trying to keep up and keep in touch with as many people as possible.”

WIFE AND CARER OF SOMEONE WITH DEMENTIA: “I think of this enforced quarantine as a retreat, and I hope to come closer to Jesus, and do all those things I’ve put off! … I think he’ll enjoy the next few months of my undivided company! And the garden should look gorgeous.”

For our Forget-me-not group in Shifnal, we’re phoning and we’re continuing to use as our “anchor” the song and same four prayers that we’ve shared month by month over more than six years. We’re also creating a collage of hands affirming our continuing connection.

Join the conversation? Better together…

You are welcome to join the conversation – sharing any questions / responses / thoughts by email sarah.thorpe@lichfield.anglican.org or by phoning me on 0798 224 8949. If you use Facebook, you can join the conversation there: www.facebook.com/dementiachurch/ Clive and Barbara are also happy to speak to people: let me know if you’d like to arrange a conversation with them.

Lived experience of change and challenge through dementia

Anyone with lived experience of dementia knows about challenge and change.

What have we learned about living through challenge or change that we can share with others?

What can we helpfully share about living through tough times or living in the present moment?

Our experiences may help other people to navigate current changes. If you’ve got things you’d like to share on this, do let me know.

Darkness and light…

We all need space for both lamentation and celebration. With dementia, there needs to be space to acknowledge the cost and challenge it brings, naming all that’s being let go of. And there also needs to be space to affirm life, each step of the way, noticing the light shining through even as patterns change. That’s never been truer than it is now, as we all live through the impact of Coronavirus. George Rook’s recent blog, “Stay in the light” talks very honestly about both darkness and light: https://georgerook51.wordpress.com/2020/03/21/stay-in-the-light/ I wonder where you are finding space both to lament the challenges of this present time and to celebrate the gift of life/connections, which you may find in unexpected places.

You are welcome to be in touch with any of our dementia-friendly churches team, if it helps to have space to name either darkness or light – now or at any stage.

Through all the current challenges, I find I am returning to the Psalms – which express feelings, including the tough stuff, and which have stood the test of time! You may have a favourite Psalm to read. Psalm 46 reminds us: “God is our refuge and strength, a very present help in trouble”. I am praying the ancient words of the prayer of St Columba, for our dementia-friendly churches network and for everyone affected by dementia.

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Be thou, O Lord, a bright flame before us

Be thou a guiding star above us

Be thou a smooth path beneath us

Be thou a kindly shepherd behind us

Today and always, Amen.

Prayer of St Columba

It’s not going to be forever!

"We are going to get through this. We’ll really appreciate all getting together again. You find ways round it. We won’t take hugs for granted in the future.”

BARBARA, CLIVE’S WIFE