June 14, 2019
Graham cares for his wife, Carina, who has M.E./CFS. In this article he speaks about what it is like caring for a loved one and what support there is for carers.
I don't really think of myself as a carer. I guess the lines are blurred when the person you are caring for is your wife - it's just me supporting my soul mate. One of the reasons that I don’t see myself as Carina’s carer is probably the severity of her illness; her M.E. is severe but not to the point that I need to help her with things like getting dressed or going to the bathroom. However, when I stop and think about it she is reliant on me for many things.
There is no denying that being a carer is challenging. I have to juggle all of my responsibilities at home as well as work but I just adapt. In terms of support, I really don't know what’s how out there. I must say that I'm lucky that my line manager and company that I work for are very supportive and allow me to work from home and have flexible hours when I need to. This is where I have found support most useful; I have no experience of support groups or online forums.
I would love to be able to take a day or two off work each week so that I could spend more time looking after Carina. Not just for the basic day to day things but also to give us a better chance of having a day when she feels well enough to do something when I'm there. Although we are fortunate in that Carina receives some PIP and ESA benefits, it is not enough for me to be able to cut back my work hours. So any increase in benefits - for carers or patients - would be welcome.
I'm lucky to have support at work, if you are feeling isolated reach out to someone you can trust. That could be a friend, a family member or through support groups for carers. Talking to someone will be a good first step.
You can visit Carers Trust to learn more about the different forums that are available for carers. Our Information and Support service is also available to provide advice for people affected by M.E./CFS. You can contact them Monday to Friday between 9am and 4pm.
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