From the Mums in Media website, 13 June 2014. Words by Fiona Scott.
Do you think ‘well you’re retired, you’ve got grey hair, and such a thing often happens at that time of life” (in other words ‘what do you expect?’) or ‘oh no, now I’m going to have to listen with sympathy to someone with a sob story and I haven’t got the time or the interest.’?
Then, when someone who is a carer actually starts talking about the reality of their daily life, do your eyes glaze over and you drift away, immediately giving out the message that it’s just too much information? You didn’t really want to hear all of that stuff?
That’s what happened recently to renowned television director Steve Smith, who lives near Marlborough, Wiltshire. He was attending a big social red carpet event in London recently when someone he’d not seen for years asked him about his life.
“Many people know that Robert and I have been together for a long time and they asked after us. They didn’t know that Robert has an illness and that our lives had changed beyond recognition.
“Very quickly I realized they didn’t actually want to know. As I talked, their eyes glazed over and suddenly you can feel very alone in a crowded room. Your story just doesn’t fit anymore.”
Steve and Robert have made the decision to speak out about their situation to raise awareness around the impact of being a carer for national Carers Week this week.
“We don’t fit any mould or stereotype around caring. We’re a couple who are trying to care for and support each other through an ongoing situation which has changed our lives.
“We are from a higher income background where we used to a modestly privileged lifestyle (we have never wasted money). Now we’ve learned some hard life lessons. We do live in a beautiful village in a beautiful home but we still struggle to cope week on week. Our home is under threat – while we’ve been fortunate to have a buffer against the unexpected, which most people do not, now that buffer is very thin and we are having to carefully consider major changes.
“The lesson learned is that fortune can change on the spin of a coin and social position is often of little protection. When you are brought low, there’s very little real compassion out there.”
Many of us will have seen Steve’s work without even realising it – he’s the director of the Graham Norton Show aired on Friday nights on BBC1.
In his professional life, Steve works with people who are celebrities and it’s his job and make sure what we see on our screens is the best possible, and most interesting view from all angles.
But does anyone really want to see Steve in the same way? Steve does a job he loves and one he’s passionate about. Yet what aspect of his life interests you the most? Is it his professional role on a national television programme or his personal role at home – as a carer?
The role that consumes most of Steve’s life isn’t one he has chosen. He didn’t apply for the job and get it based upon his skills and life experience. It’s not one he planned for or had a forward-thinking strategy to deal with.
However, it’s the role he’s had to immerse himself in for the last seven years – and there’s no end in sight.
“When I first met Robert he was like Peter Pan. He was an outgoing, good looking, a physically active man and now he’s often unable to get out of bed, has very little energy, and is often too ill to engage with anyone.”
Steve cares on a daily basis for Robert, who faces a struggle with Chronic Fatique Syndrome. Some days, sometimes for weeks, Robert is bed-ridden. On other days he is able to get out, possibly for a few hours but his stamina is poor. Robert is terribly isolated by his condition – and so is Steve.
“We had such an active life before this situation took hold. We embraced life to the full. Now we don’t accept invitations anywhere to anything – because we can never be sure that Robert will be well enough. We don’t want to let people down at the last minute. So eventually those invitations stop coming and our world has just got smaller and smaller.
“For his (Robert’s) mother’s 60th birthday, we went back to his family’s home in Yorkshire and he spent the whole weekend in bed. We did try to go out for a little walk, but Robert managed about 100 yards and that was it, he just had to stop. He just couldn’t walk any more.”
This is part one of Steve and Robert’s story, the second part will be published on Sunday.