Joss James talks about the challenges she and her husband Bill have faced since his spinal injury and the support they've received from charity Back-Up Trust.
Londoner Joss James is full-time carer to her husband Bill. They were both working full time when Bill had a spinal cord stroke in 2013. Bill was a university lecturer, while Joss was an art therapist working with children and families in the NHS. Following his stroke Bill spent five months in hospital undergoing rehabilitation, learning to walk again and to manage his condition before returning home.
Joss had already reduced her working hours to support Bill through his recovery, and took a six-month sabbatical when he came out of hospital. However, things proved tougher than either of them had anticipated and at the end of that period they made the difficult decision to give up their respective careers and move house to somewhere smaller and more accessible.
The thing I find hardest of all is the whole social thing. People are interested in your story, but you can feel as though people want to know how you are rather than, when it comes to it, actually be available to help. Most people don't have experience of this kind of caring and it's really hard to ask for support.
"I was actually getting quite sick with the stress of it all, trying to keep working and manage the carers. It seemed that each agency would provide one or two really good carers, but when they moved on for various reasons we had a whole run of people where, frankly, it was more trouble to tell them what to do than to do it myself. We realised that we were better off with me being the carer rather than me being at work and trying to manage the stress of carers not coming when they should or not knowing what to do."
Bill's serious spinal injury, combined with the symptoms of Parkinson's, have greatly lessened his energy levels and he needs a good deal of support with day-to-day tasks. "It's really tough," says Joss. "I don't want to mollycoddle and he doesn't want to be dependent and yet we're both aware that actually this works and not much else does."
Joss finds that her caring role makes it hard to keep up with friends and family. "The difficulty is that I don't have much of a social life any more, nor much of a cultural life. I don't go on holiday any more. I have friends all over the country - in fact all over the world - but I don't travel away from home overnight any more. It's really hard.
"We have grown-up sons, but they have their own lives and we don't want to call on them too much. They come and do things that I can't do on my own, like putting up the Christmas tree or moving furniture around. They're very helpful, but there's only so much we can ask of them.
Joss struggles to get a break from caring, and doesn't feel able to get away following a trip away last year which, unfortunately, resulted in a difficult six months for both Joss and Bill. "I did go away a year ago and I got a rota of friends to come in every day and help with things that needed doing. It went really well for the first few days and then he had a fall which took him several months to recover from.
"He's proud and he wants to be able to do more for himself. When I'm not around he does much more and doesn't ask people to help. That's why he fell, I think, because, over several days he'd just been doing more than he was used to doing and pushed himself further than he could. So when I came back, my caring role was much more difficult than it had been."
Joss cites the difficulty of asking for help as one of the toughest challenges of being a carer. "The thing I find hardest of all is the whole social thing. People are interested in your story, but you can feel as though people want to know how you are rather than, when it comes to it, actually be available to help. Most people don't have experience of this kind of caring and it's really hard to ask for support."
Joss received mentoring support from Back-Up Trust, a charity which provides information and support for those affected by spinal cord injury. "I had a couple of mentors through Back-Up Trust, one of whom was spinally injured herself. She was fantastic at talking about what it was like to be the person with the injury. Then after a while I realised I needed a bit of support for how I managed for myself, and they gave me a mentor who was a carer herself. She was very good at understanding the stress and the constant anxiety that you live with as a carer for someone who's disabled in this way.
You feel guilt for being able to do things that your partner can't. It took quite a long time to be OK with that - to realise that it's OK to go out for a walk on a sunny day or meet a friend when Bill couldn't.
"You feel guilt for being able to do things that your partner can't. It took quite a long time to be OK with that - to realise that it's OK to go out for a walk on a sunny day or meet a friend when Bill couldn't. Sometimes before, I wouldn't do it because it felt too unfair. The discussions with my mentors really helped me to talk to Bill about that and helped us to be honest with each other. He'd say ‘I'd much rather you were having a nice time. Then when you come back and care for me you're buoyant and active and fun to be with.' "
"Since receiving mentoring from Back-Up Trust I don't feel so hopeless all the time. I feel a lot more able to manage our life. I think anyone who's spinally injured is going through the most incredible life changes and if they need that back up and support, they're a brilliant charity to get involved with. They're so caring and so good at contacting you and keeping you going when things feel really tough."
For more information about charity which helped Joss, visit the Back-Up Trust website.