CHRISTIAN LIVING | Kaley Payne
Eternity #68 April 2016
On Thursdays, a church service is held in the little chapel in the middle of the Hammondcare aged care facilities in Miranda, in southern Sydney. John goes every week, though a few weeks ago something seemed unusual, but he stayed anyway. John had come to the Catholic service, not the Protestant one he was used to. He’d forgotten that the services rotate and arrived out of habit. It’s not the first thing John has forgotten. He’s getting used to that now.
In 2010, John, who turns 77 this month, was diagnosed with dementia. His wife, Beverley, says he was “very accepting of his diagnosis, which is something to be thankful for.”
John has started to lose his short-term memory and some days he finds it difficult to speak. But it’s a good day when I sit with him for a few hours. Before going into care, John had to stop going to a Bible study run by a group of retired men at his local church. “This dementia, it blanks everything out,” he tells me. “They’d be talking about something and by the time my turn comes, I’d lost the plot.” It’s a big disappointment to John that he can’t attend that group anymore. He says it had been a big influence on his personal faith.
It’s not an unusual feeling for those with dementia to feel as though they’ve been removed from their communities, according to Professor John Swinton, Chair of Divinity and Religious Studies at Scotland’s University of Aberdeen. Swinton is the author of Dementia: Living in the memories of God.
“One of the first things that happens when you get a dementia diagnosis is that your friends begin to peel away,” Swinton tells me, because many people want to remember their friend “the way they were.” But “if that person still lives, who are they now?”
“Most of what I do is wrestle with the question of what it means to be a human being,” says Swinton of his research. “Dementia raises that question quite sharply. What do you have to have in order to be human?
“The way we understand our identity – certainly in Western culture, is that we remember who we are. It’s an autobiographical memory. If you ask yourself, ‘Who am I?’ you immediately think back to a series of stories you can remember about yourself. Now, in order for me to know who I was as a kid, I have to ask my mother. Then I can take that memory into myself and pretend I remember, but of course, I don’t. Other people remember it for me.
“The problem is that if that’s what you are – what you can remember – then when you begin to have memory issues, the assumption is that you’ve forgotten who you are. But there is a real sense that actually a lot of the things you remember about yourself – your identity – are things remembered by other people. So you really need other people to be yourself. Your story is important to you, of course it is. But in the end, we’re deeply embedded in a community of memory.”
Swinton argues that we become who we are as we relate to others and to God, who made us and gave us our identity in Christ. If you start to forget who you are, you’re still “you” but you rely on other people to hold your memories for you.
Christine Bryden has been living with dementia for over 20 years. She has written four books about her experience, which she describes as “glacially slow decline”. Her most recent book – Before I Forget – is a memoir and she tells me that writing it was like “putting together a patchwork with family and friends and trying to stitch it all together.” Her memories have been kept by those around her.
While there is no “usual” for dementia, Christine’s experience of dementia is rare. Even her neurologist can’t explain why Christine can still do many things, given the extent of her brain damage. “Because it’s been slow, it’s like I’ve been given time to try and work out new ways to do things … working out ways around the damaged bits,” she says.
For her, being part of the body of Christ in her church in Queensland is incredibly important.
“You feel confident that even if you forget all sorts of stuff, the body of Christ will hold you gently in their memories. In a secular sense, friends rely on you remembering significant things in their lives and what you told them last time you met. I can’t do that anymore. I can forget that friends even exist. But in the body of Christ, people are as Christ to me. They remember me. They call me. They care for me.”
Swinton says that even the “broken bits” of the body of Christ are significant. “The different gifts of the body enable us to function as a whole. When we become broken, we need to discover what our new function is amidst the body of Christ. If a person is a Christian, they are a disciple and they have a vocation within the body of Christ. That doesn’t disappear because a person can’t remember what it is.
“We need to find ways to recognise and nurture that vocation,” says Swinton. It could be the non-responsive lady in the advanced dementia care unit who suddenly starts to pray fervently out loud. Or the man who bursts into Jesus Loves Me in the middle of a church service.
“This is real prayer, and real worship. It’s the outworking of a person’s spirituality,” he says.
Christine loves to be part of the fellowship at her Anglican church in Queensland. She finds it hard to keep up with the words, and she doesn’t always sing. She often gets confused about the order of events.
“But it’s lovely to feel part of the fellowship. To always feel welcomed and just be able to ‘be’. I don’t have to ‘do’ anything.”
Swinton says it’s important that the church community help those with dementia find their place in the body. “Their new vocation may be to do nothing. We need to help them do that well and in a safe way.”
St Swithun’s, a church in Sydney’s northern suburbs, began a dementia-friendly service just over a year ago. It’s called Blessed Assurance and runs once a month. The service, run in partnership with Anglican Retirement Villages as a pilot intended for other churches to replicate, runs for about 30 minutes and has been carefully designed to make it possible for those with dementia to continue to be part of Christian fellowship. Everything has been thought through to “maximise participation through memory,” says Roger Chilton, St Swithun’s senior minister.
From five minute, simple sermons, to familiar hymns and lyrics printed in large type on a high-contrast background to make it easy to read, the church is thinking practically about how to serve those with dementia. Only one speaker appears at the front at any one time, with longer pauses to allow participants time to focus on someone new before they speak.
The church building itself also helps – a traditional setting of wooden panelling and stained glass is familiar for those who don’t quite remember that church was a regular feature of their lives.
During communion, a lady in the front row needs a friendly prompt to eat the small wafer that she takes by habit. Another takes the cup but doesn’t want to drink it. And that’s OK.
“Ritual is a powerful way of accessing memory,” says Swinton. “Sometimes, it’s not so much that the memory has been lost, but the connection between the memory and the ability to cognate that memory is broken. Ritual or liturgy can fix that for a time.”
Something like communion can be really important for a Christian with dementia.
“What you see there is people who have practised spirituality over time and their bodies have taken that form. And when they can’t cognate [what’s going on], their body still continues and the Holy Spirit continues to work through them. The things that they’re engaging in are not just meaningless, they’re intentional. And in the midst of that, God is with them.”
Back at Hammondcare, Beverly says her faith helps her cope with John’s condition. “I know God has John in his hands. He is in control. I have no fear, no fear at all.”
Christine, too, says “I feel confident that God will always remember me. He holds me in the palms of his hands.”
There’s a difficult tension, says Swinton when it comes to coping with a dementia diagnosis, particularly for family members. “It’s a delicate balance between grieving for the past and hoping for the future,” he says.
“Very often when we talk about people with dementia, we’re always talking about the past. And we have various techniques to bring the past to the present and help them to be as close an approximation in the present to what they used to be. But nobody is what they were in the past. Everybody wants to have a future. A person’s spirituality and their vocation in the body of Christ, their calling – that is still present – is a pretty hopeful thing.
“I think it’s pretty clear that Jesus goes with us into the confusion, into the difficult places that we encounter.”