The importance of Empowered Conversations: “I have been given the space which helps relieve stress just by talking about things”
Sarah cares for her husband Steve, who was diagnosed with Lewy Body dementia. Sarah has completed our communications course for family caregivers and has also accessed one-to-one support with our Empowered Carers team. She tells us about her experience with us and the importance of the service.
Sarah said: “Steve has tremors, coordination problems, cognitive impairment, memory problems, and lots of other problems associated with them. It went on for a long time before getting a diagnosis. I knew things weren’t right for a very long time but didn’t know what the problem was. He went onto the memory team about three years ago. The last two to three years he’s declined rapidly, I am providing full-on care for him now.”
Sarah spent time getting involved with professionals, who then put her in touch with Age UK and Empowered Conversations, and took part in the course. She added: “I never looked into support before when I was caring for my son, I did everything off my own back in the past and I can’t manage that anymore.
“I have been very proactive in wanting to have help, it’s key that I understand what’s going on for Steve and for myself, I want to know that I am giving him the best I can. The course made me think deeper about his perspective, which is very different.
“It was very informative, which has been a massive help for me. It was really useful to hear other people talking about their situation and see that they’re experiencing similar feelings and emotions. You are very hard on yourself as a carer, you don’t feel like you’re doing a good enough job.
“I found it very difficult to put things into practice, which I kept expressing, it’s a total shift in how you communicate with the person, when you’re actually hands on it’s quite difficult to do.
“To me it wasn’t just the course, it’s about applying it over time, I don’t think anyone can go from A to B like that, it’s not simple and easy. It’s extremely beneficial to be aware, thinking about how I say things, it may take me a million times to get it right, but I’ve now got the knowledge.
“They gave us loads of tips as we spoke about our own experiences, they were very willing to let us talk, when you’re by yourself caring for someone, you need as many tips and knowledge as you can grasp. I like the people that ran the course. I think they were exceptionally good, they were very friendly so it was easy to open up to them, they were very good at facilitating the course.”
Sarah, on receiving our one-to-one support, said: “The support was very good because I am very isolated, it was extremely beneficial, I get a lot now from verbalising and speaking about it. I have spent most of my life with my son internalising everything, which is not a good thing to do.
“I have been given the space which helps relieve stress just by talking about things. I looked forward to the meetings, it’s not an easy thing to do, you are opening up and sharing things, it is draining”.
“I think Empowered Conversations is a service that should be offered out because caregivers are very alone, people should be offered knowledge because when you are in a caring role you don’t have time to go out and research yourself.
“I know I have to take the time out to do the course, but I have gained a lot from it, rather than finding the time to sit at the computer and Google stuff.
“I think it’s essential that support is available to everybody and anybody, I can’t stress that enough.”
Find out more about Empowered Conversations courses for family and professional carers here.
Find out more about Empowered Carers one-to-one support here.