Rosie's* story

The life of a middle-aged carer caring for her disabled husband

The wedding vow In sickness and in health took a literal meaning for me in 2006 when I married my best friend in the whole world, the person I love more than life itself.

My husband has had disabilities since childhood so I knew from the start that I would be his carer. I don’t think I realised how hard and lonely being a carer can be. Back then I still had hope that we would have children.

I have cared for my husband all day and night (some seizures happen at night), every day, without exception since June 2005. I do everything for my him. From cooking, cutting up food and doing up buttons, to tying shoelaces, looking after medication and helping him with money. I fill in forms for him, book and keep track of his doctors appointments, read and deal with correspondence on his behalf and manage his seizures. I keep him safe. I keep him entertained. I speak up for him. I make sure people understand his wishes.

There have been, and no doubt will continue to be endless battles we have to face as a couple - from benefits and assessments to suitable housing. As a full time carer I can’t work another job at the same time. So money is always tight.

Over the years our world has got smaller. People we loved have passed away. We don’t have many friends and we don’t get on with some of our family. I’m still trying to come to terms with the fact we will never have children. My head knows it’s the right decision but my heart doesn’t understand. I’m not sure it ever will.

My husband can’t be left alone so he has to go wherever I go. This also means I struggle to be able to attend events arranged for carers. There is no one else to look after him. A break would do me the world of good but it’s not something within my reach at the moment. I wish I could find some events for carers that are more inclusive of couples. Then we wouldn’t feel so isolated and maybe we could meet other couples like us.

Since the start of lockdown we have been shielding. As well as having epilepsy, my husband is partially sighted meaning it may be difficult for him to social distance properly. We know shielding has been the right decision for us but it is hard seeing people outside getting back to some kind of normality while we remain behind closed doors.

We haven’t achieved anything special in lockdown – we haven’t tried a new hobby or baked cakes or grown flowers. Our garden isn’t safe for my husband – it is raised with steps up to it and nothing to stop him from falling off the edge. So we haven’t been able to spend time outside in the hot weather.

But, despite all the struggles of being a carer, there are a lot of good things. As a couple we listen to music, watch films and football, play games. I read him stories and we laugh. I enjoy needlework too. Before lockdown we would go for walks and visit places on the bus.

We may not have children but we are still a family.

Looking back there are a few things I wish I could have said to myself back in 2006 when I first got married. And advice I would give other carers in a similar position to me.

"Just do your best. That’s all you can do."

Get a care plan and maybe a personal assistant if possible so you can have some time to yourself. Being able to take a break makes so much difference to physical and mental health.

I will always love my husband more than life itself. He is my whole life. I just wish for him that there was more support available. I will never give up on my husband and I will never give up campaigning for carers. Maybe one day carers and couples like us won’t struggle so much.

This is what caring is like for me.

#MakeCaringVisible.

*name changed to protect identity