Listen. Like I might be Wrong.
Returning to what matters, again and again
Theme: The Broken
Listen deeper.
Listen again.
Listen to what my heart already knows.
The most useful lesson
One of the most useful things I've learned over the past year is to listen like I might be wrong.
Not because I don't know Milly - although I have seen a different side to the more secure, peaceful and loved Milly - but because dementia keeps reminding me that the obvious explanation is often the wrong one.
It has now been over a year since Milly moved into the converted garage beside our home. It's been an immense year in every sense of the word. Caring for someone with dementia demands alot. It asks you to think differently, to respond differently and, perhaps most importantly, to keep looking for another way when yesterday's way no longer works.
Creativity is looking again
I've realised that this is creativity.
Not the creativity of writing music or painting pictures, but the creativity of staying curious. When Milly becomes anxious, frustrated or angry, my first instinct is no longer to correct her or explain reality. Instead, I try to wonder what she is experiencing.
What has she understood?
What have I missed?
What might I be getting wrong?
Listening like I might be wrong encourages me to look beneath her words or worried look, instead of reacting to it. What appears to be anger is more often than not, just fear. What looks like stubbornness is confusion. What sounds unreasonable is often Milly simply trying to make sense of the world.
I've written before about this idea, but I'm finding it reaches much further than dementia. When I replace certainty with curiosity, I so often discover a kinder explanation.
An immense year
That same creative thinking gave me the title of the musical I've been trying to write: Immense Year.
Progress has been slow. Caring, blogging and designing a simple training programme for carers leaves little time or energy, and right now families are facing enormous pressures. Social care is stretched. The NHS is under strain. It doesn't always feel like the right moment to invite people to think differently about dementia when so many are simply trying to cope.
But the title still matters to me.
More than a title
It came from a real conversation.
A doctor used the word dementia in front of Milly and I saw panic spread across her face. Instinctively I interrupted.
"The doctor was just describing what an immense year it's been," I said. "An immense year since you lost Daddy."
The fear subsided.
Later I realised that Immense Year says something that the word dementia often cannot. It acknowledges the enormity of what someone is living through without immediately surrounding them with fear, stigma and hopelessness.
It's also an invitation to look again. Just as we have to keep looking again when memory changes, perspectives shift and familiar ways of communicating no longer work.
Returning to what matters
For me, listening like I might be wrong has become much more than a communication technique. It's become a way of caring.
It helps me understand Milly better and reminds me to think about what she might be feeling, even when I don't understand why. But I've also realised that sometimes I need to look again at myself.
When caring becomes difficult, when I'm tired, frustrated or overwhelmed, it's easy to let the problems take over. I find myself thinking about my lack of freedom, the constant repetition, the appointments, medication, routines, safety, finances and all the practical challenges that come with dementia.
All these things matter.
But they're not what matters most.
When I stop and ask myself what is most important, the answer is surprisingly simple.
Family.
If family is one of my deepest values, then I can't decide that it only matters when life is easy. It has to matter when it's inconvenient, exhausting and heartbreaking too.
Asking different questions
So instead of asking, "How do I manage this?" when life gets tough, I try to ask different questions.
"What would help Milly feel safe?"
"What would help her feel loved?"
"What would bring her peace?"
When I ask those questions, I often realise I had lost sight of what really matters.
When I come back to my values, caring becomes simpler.
Not easier! But definitely simpler!
Love. Connection. Peace. Safety.
When I remember these, I feel stronger, calmer and happier. The challenges haven't disappeared, but my perspective has changed.
Listen to what really matters
Perhaps that's another way of understanding the phrase listen like you might be wrong.
It's not just about listening more carefully to Milly.
It's about listening to myself.
Listening to my values.
Listening to what really matters.
Because when I remember that, I usually find another way forward.