Carer’s Week – Joe’s Story

This week is Carer’s Week, an opportunity to show support for the millions of people who have caring responsibilities for a friend or family member across the UK. In Essex there are at least 125,000 people who have caring responsibilities.

Given that that theme of the week is ‘Recognising and Supporting Carers in the Community’ we thought it was the perfect opportunity to feature our Collaborate Essex Disability and Carers Forum member, Joe Cooke, in our latest podcast episode.

Joe cares for his wife Joan, who he met aged 16, when they both attended the same school. Joan has a genetic condition known as hereditary spastic paraplegia and is also living with Alzheimer’s. In the podcast, Joe talks about his experience as an unpaid carer, the support he receives from care professionals and the importance of continuity of care.

Joan has care professionals visiting her three times each day, with Joe describing his role as ‘filling the gaps’. He is very appreciative of the support that they currently receive, “It has been transformational having carers help three times a day. Now we have a lot more resources available and advice which is so very helpful. I’m here 24/7 – ┬ábut if I do have any other needs, be it physical or otherwise, is the system robust enough that I don’t have to be here? Good as it is at the moment, it’s probably not quite there. At least not without family help.”

Joe describes in the podcast the importance of remaining connected as a carer, and reaching out for support, “There is a such a diverse range of disabilities so people’s needs vary greatly. Understanding how to deal with changes in the person you are caring for can be challenging. Getting advice and peer review is so important. The biggest enemy is isolation. Thankfully it’s not something I suffer from.”

Continuity of care is something which is often discussed and the difficulties of ensuring that it exists is not lost on Joe, “It’s not just about getting things right; it’s also sustaining it when it’s right. Change is inevitable, but I think people are entitled to some level of stability. Continuity is so important – particularly with Alzheimer’s.”

You can listen to Joe’s full podcast here and view his TikTok videos, with wife Joan, here.