I recently visited NHS England at Quarry House in Leeds. I was invited by the Corporate Social Responsibility team to take part in one of a series of lunchtime staff events, that they are running as part of World Alzheimer’s Awareness Month. I wasn’t sure what to expect at all… I just knew that my Carer Journey was likely to be helpful to others – a real lived experience and not theory.
I was amazed to start very real conversations with the event attendees straight away… two co-workers supporting each other in their separate working carer journeys. One person was working while her sister did the parent care, and one person was the family care co-ordinator and needed more help, information and support. So the reason for me sharing my journey was vindicated before I even made a start.
I guess my eagerness to share my story is based on my own lived experience:
• seeing the wide gaps in between professional services
• the lack of general understanding of how dementia effects real life for families and carers
• awareness of how much we can support each other if we only connect and share
I want to help make other people’s experience of dementia and alzheimer’s care a little bit easier and bring it out of the shadows and into an open space where we can all help each other.
After the talk the questions raised showed how much eagerness there was to engage with this subject for both staff juggling care in their working lives and also professionals looking at support services for people with dementia and their carers. What was billed as a 20 minute talk with 10 minutes questions turned into an hour long event with what seemed like an eagerness for lots more. It was evident that it was no small thing to be a carer and to work full-time too. After sharing my story, I was quick to point people to our local support services like Carers Leeds and Leeds Alzheimer’s Society where carers can get their first lines of support.
I learned that people were interested to get:
• general information
• local service information
• information on dementia
• information on dementia care
• chance to hear a real life story
• chance to have a quick conversation with someone who had been through the experience
• time to reflect on their own situations
I am now looking at how I can translate my experience into workable helpful tools and interventions to help other carers. So this talk was a really helpful small research event. I will post further progress as my work develops.
Thanks again to NHS England, Leeds for inviting me to share my carer journey story.
If you are a professional service provider and would be interested to involve me in any of your work in dementia care/carer support, please just drop me a line.
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