John spent over 12 years caring for his wife June, who had Alzheimer’s. He shares the importance of helping those who have felt unsupported during their caring journey, and fights for social care systems and support to be improved for unpaid carers. Since June sadly passed, John has made it his mission to support and advocate for as many people as possible, by volunteering, providing care and even helping to set up support groups for male carers.
John is extremely dedicated to supporting other men who have experienced being a carer for someone, and strongly believes that the right information, guidance and recognition of their roles can create a positive lasting change. He encourages other men supporting someone to reach out and speaks about the benefits of accepting that support from others who are there to listen and help you.
When John began caring for his wife, June, he was met with a lack of information and real support from many health and social care systems, which led him to fight for his and his wife’s needs himself. It also left him feeling unsure and not trusting of support services, “My biggest problem with it all, I had a real uphill battle with all the care services, including social services, GPs, NHS system. Nobody in that time seemed to want to help.”
John took his negative experiences and put his energy into helping others that are facing similar situations to himself. He began volunteering, helping to set up care groups in Medway, with the aim to let others know that they are not alone and that there is a community of people willing and wanting to help them, “I am so focused on helping others to navigate the system.”
“I do respite care; I go in to support a person. It’s also about supporting the whole family. Within that role, I do help people to deal with legal power of attorney. When somebody is diagnosed with Alzheimer’s, there’s nothing. Nobody gives you any paperwork, no help for appointments, so I want to help others.”
He is incredibly passionate about helping others and highlighting the need for support, especially for those who may be struggling to talk openly about how their caring role has affected them. As a male carer himself, John understands how difficult it can be to ask for and to accept help at times, so he helped to organise a regular Carers First male carers support group, where men are encouraged to share their feelings in a safe and welcoming space:
“I don’t see any care groups for men. So, we put together one of the only male carer groups in Medway. I think it is harder for men to talk about their caring role. I used to say I can manage, don’t worry, but it comes to a point when you can’t manage, and you need support.”
The male carer group is also a great way to stay social, which John expresses was difficult during his caring role due to the emotional, mental and physical effects it had, “There is no social life, especially caring for someone with Alzheimer’s.”
It gives male carers a chance to have some normality and routine in their lives, outside of caring, which John agrees makes all the difference.
His advice to carers trying to navigate the system is to “keep trying. You have got to look after yourself. From my own experience, you really have to keep banging on the door. If you need help from any type of services, you have to be persistent.”
John’s objective to support other carers and their families going through similar situations is admirable. He uses his own personal experience and knowledge to give them all the information they need to make informed decisions about the person they care for. Assuring them that their voices are being heard, and encouraging them to advocate for themselves with confidence, even when they have faced adversity, is one of the goals he consistently achieves. His personal story reflects the greater issue that carers must be supported by social care systems, and that there needs to be a positive change.
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