Becoming an unpaid carer when your partner is diagnosed with dementia is hard – it is full-time job for which very few are remotely qualified when they are thrust into the role. Nothing prepared Paul, from Sheffield, for the stress of being the sole carer for his wife who has Lewy body dementia.
Carer’s story provided by Sue had been a hospital pharmacist for her whole career. “She was a very bright lady, extremely organised, very proud, outstanding memory for fine detail,” Paul said.
After having symptoms for over a decade, she was incorrectly diagnosed with Alzheimer’s, a common experience for people with Lewy body dementia.
Paul had to give up his job as Sue had become a risk to herself, although she was in denial of any problems. Being her sole carer took a toll on his physical and mental health.
He was shocked by how hard it was to find information to get Sue the correct diagnosis, treatment and support: “I suffered a stage which was ‘Help, I need help’ but had no idea what help I needed and didn’t have time to look for it.”
“No carers have time to research anything. You don’t even know what the right questions are. It is absolute hell to get anything from NHS, and Social Services. There are very good people in both organisations but finding them is difficult. You can’t find a number anywhere, when you do, no one answers. They don’t let you know what is happening.
“I suffered a stage which was ‘Help, I need help’ but had no idea what help I needed and didn’t have time to look for it.” “I’ve become hardened somewhat and very determined to get “justice” for Sue. I’m only doing what I know she would have done for me had the situation been reversed.”
While Sue was still at home, Paul struggled to find any time or space as a 24-hour-aday carer to talk to anyone about what was going on. Sue would become paranoid and agitated if she overhead.
He added: “I am part of a carers group now, which incidentally I couldn’t attend until my wife went into care, and I talk about Lewy body dementia every chance I can, trying to support friends and acquaintances who are a few years behind in the journey.”
“I am concerned about the access to information. Too much is done online for our generation. This is a subject that comes up every meeting of our carers group. Most of the demographic caring for a loved one with dementia now have not used computers or smartphones routinely in their lives.”
Thank you to Paul and the Lewy Body Society for sharing this story