Talking and Listening

DF

Last night, I delivered a Dementia Friends awareness session to the Mothers’ Union in Warwick. As always, Mum was with me. When I first became a Dementia Friends Champion – someone who leads sessions – I wasn’t encouraged to make it personal. This wasn’t about my experience, seemed to be the general message. I soon discovered that what people really wanted to hear about was exactly my personal experience. From that point, Mum has been my DF companion. After all, if it wasn’t for her, I wouldn’t be there.

For those who aren’t aware, Dementia Friends is a national initiative, run by the Alzheimer’s Society, to raise awareness of the lives of people living with dementia and their carers. By giving people some insight, we hope that the world might become a little easier for those whose lives are directly affected by dementia. We were set a target of one million Dementia Friends by May of this year, a target we reached. The programme continues though – new targets have replaced the old. DF is about turning understanding into action – there, I’ve delivered the key message! Action doesn’t mean a march on Downing Street or a rally in the town square. Action is a small change in behaviour which might help someone with dementia. For example, my action was to stop being so impatient. One day – a while ago now –  while shopping with Mum, we got into a bit of a mess at the checkout. Mum was trying to pay with a National Trust membership card and when that wouldn’t work, she dropped her purse. Cards spilled out. People behind us in the queue harrumphed (what a great word that is). I realised, in that embarrassed instant, that it could have been me in that queue. It was the only prompt I needed to change.

But, back to last night. It was a small but very engaged group and time rather ran away with me. There is a structure to a Dementia Friends session. The activities can vary but a session normally lasts no longer than an hour. A glance at my watch informed me that I was still on the first activity of three planned after 50 minutes. When I first became a Champion, I was rather ruled by the clock. Now, time is an irrelevance as it is for so many people with dementia. Last night, I talked about Mum and two ladies in the audience, both of whose mothers also have dementia, shared their experiences. One told a lovely story about how she tries to talk to other residents at her mother’s care home. The other day, one was reluctant to let her leave. She wanted to go but stayed. The resident held her hand:

“You’re lovely….you’re lovely.”

Just for taking the time to talk and listen.

There is so much common ground. Everyone’s dementia story is different but so many feelings are similar. For me, a session now is not about recording the number of new Dementia Friends created, it’s about sharing experiences. It’s about creating a safe space to say I was and still am scared about what’s happening to Mum. It’s about others finding some comfort by being able to talk to about how inadequate they feel when their mother or father, sister or brother, no longer apparently wants to see them.

It’s so heartening that more people are prepared to share their experiences and anxieties. When I first encountered dementia more than six years ago, it seemed to me that few people, outside the charitable sector, wanted to talk about this cruel disease. Now, slowly, things are changing.

That’s why Mum is a constant presence for me. Without talking about her, I don’t really have anything to say.

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