Tommy speaks about the importance of language and balance; and how we describe and discuss each other.
I’ve always been concerned with the narrative of living well with dementia that comes from organisations and from so many who are not actually living with dementia, but commenting from afar.
I suppose my personal views over the last few years have been quite unpopular.
My Mum lived with dementia as well as she could. And I cared for my Mum as well as I could.
When I first started campaigning whilst caring for my mum, so many people shared their honest and open experiences with me celebrating both the beauty of care and caring, and the struggles in equal measure. Many shared their experiences on my original blog and now via our Dementia Carer Voices project.
Many people still share, but privately now rather than as a public viewpoint. And the reason is often very similar:
‘I don’t want to share my story publicly as I might look like I am failing personally or failing the person I am caring for.
‘All I hear is the narrative from so many that I should be living well, that nothing should change, so to share my experience is a story of failure.’
I also believe that, until we readjust the narrative again to support people to share their stories, inadequate support and understanding will be in place to help people live as well as they can at home, in care homes and in our communities.
So much pressure was put on people a few years back to say that they were not sufferers but living well, that a reality has almost been ignored.
My Mum, like many, would not like to be described as a sufferer. Although Mum often suffered, as I did often to witness, I can’t say that we lived well. I can’t say I read about living well in the letters I have received (this link will take you away from our website) or the stories I have heard from the 160,000 people I have met in person on tour.
We lived as well as we could living with dementia and caring for each other.
It is time for a rethink on the living well with dementia narrative and marketing, to living as best as we can.
If we truly listen and support people to feel empowered and to share what matters to them, then all of us can live as best we can.
Time to change the narrative?
This son most certainly thinks so.