“The only way to manage is day to day. Some days are awful. Other days are brilliant”. That was the start of a conversation recently with someone whose partner “doesn’t remember anything… I get irritated… it’s such a change from how things were before.” I wonder what conversations you’ve had recently around dementia – and whether there are particular people whose words, phrases or stories are in your heart at the moment.
Within our network, we are committed to giving space for both lamenting and celebrating (see our Embarking - Embedding - Extending” leaflet):
- Is there space to acknowledge the cost and challenge of dementia – naming all that’s being let go of?
- And is there also space to affirm the life each step of the way, noticing the light shining through, even when patterns change?
In our dementia-friendly churches network, our conversations can take us in to deep waters, when we hear about real challenges and we hear things that we can’t “solve” simplistically. It’s alright to be out of our depth in this way – and it’s important to reflect on how we listen well, so that we can be out of depth without drowning. It’s easy to want to make it better, perhaps because of our own fear: how can we listen without being dominated by our own fear or anxiety?
If you care about listening well, as we stay in step with one another through dementia, I can strongly recommend a recent radio programme, 'Word of Month: When Words Fail Us'. The conversation between Michael Rosen and Kathryn Mannix, a palliative care specialist, focuses on heart-level conversations, when we are open to each others emotions.
Kathyrn’s book is called, "Listen: How to find the words for tender conversations". It’s not written with a dementia focus, but much of what Kathryn says can help our dementia-friendly churches listening. Kathryn’s phrases that particularly resonated for me were:
“…willingness to sit in a place of discomfort alongside somebody”;
“…’being alongside’ somebody rather than ‘doing to’ somebody”;
“…recognise that we can’t make it better”;
“…accepting that this isn’t going to be simple, accepting that it’s going to be emotional, accepting that you’re not going to know the right thing to say, and that’s OK”;
“…ask another question”;
“…the quality of our listening is about creating space”.
If you’d like to reflect on the way you listen, in a heart-level conversation, it’s well worth listening to the 30-minute long radio programme. Within our dementia-friendly churches network, there are many tender conversations that we share - and Kathryn affirms the importance of offering space for people to share their stories.
In a recent dementia-friendly churches local network meeting, we discussed the importance of offering a listening ear. It’s vital that people know they have been heard: we can all unload or unburden when we are listened to well. If we have listened to a deep or painful story, we may find ourselves affected by what we have heard. In our local network meeting, we also talked about how important it is to have our own way of handing things over to God, rather than feeling we have to carry them ourselves. One person at our meeting, who is a wonderful listener, said she does this is by going in to church and laying at the foot of the cross the people she has listened to and their stories.
If you would value space to share something of your own story, there may be someone in your local church community who will listen: why not see if they’re up for a conversation? And perhaps you can offer the opportunity for others to share a tender conversation with you, recognising that you don’t have to “know all the answers” and that you’re offering space rather than advice.
If you’d like to discuss anything from this blog post, now or at any stage, you are welcome to get in touch with me on 0798 224 8949 or firstname.lastname@example.org.