Joe’s story

Joe talks about being a Shared Lives carer offering respite breaks for people in his home.

I first heard about Shared Lives when I was working for a social care provider in Wandsworth, and I had a colleague who ran the shared lives provision with another organisation. I had a basic understanding of what it was just from our conversations, but I’d never considered it as something I would do.

However, after 20 years of living in London, my wife got a job offer in Norwich. We were thinking about moving out of London for the sake of our daughter, so we took the opportunity and moved to Norfolk. Our daughter was 6 years old, and I was looking for a job where I could work from home and work around her needs. From the age of 23, all I’d ever known was working with people with learning disabilities, so the idea of providing Shared Lives respite at our home was a good fit.
I remember the application process being fairly straightforward. Perhaps because of my knowledge and previous experience, my expectations were already set. Obviously, I still had questions. Who wouldn’t. But I knew what I was getting in to.

I wanted to understand my responsibilities and how that might differ to my experience of supporting people as part of a bigger organisation. Practical things like how much would I know before people were coming? People are only staying for a short time, so you want to support them to feel comfortable as quickly as possible. What adjustments would we need to make? How would we handle money and expenses? What expectations would people have for us providing food? Mostly, I wanted to make sure that we understood the safe and correct procedures for things - because when you know those things you don’t panic when something unexpected comes along.

The matching process for respite is based a lot on the activities and interests that the person has and whether that matches with us. A member of the shared lives team gets to know us and the person who is coming for a respite stay and then will send each party the information for them to decide if it’s a good match.
Most of the people who came were people I already knew from my work in London. Coming to Norfolk felt like a holiday for people, as well as providing respite for their family or carers. We’ve been doing it for 20 years. We were really busy too, probably more than we needed to be, but I never liked changing a booking – you know how much people need it. Sometimes, because people booked in advance, we’d say yes, to later find out that we had to miss weddings or special events. But there have been lots of enjoyable times. It almost doesn’t feel like hard work because you’re working at home.

My daughter’s memories of growing up are full of people staying with us. As a single child, we thought it was good for her to have a wider world view about people, particularly about the rights of people with learning disabilities. I think she might have found it a little difficult at first, but as she got to know people she would join in on trips and meals out. As we got older, that pace felt harder to manage around other commitments in life. I’m in my late 60s now and we wanted to protect more of our personal time. So now we only support people 6 or 7 weeks a year.

When somebody is coming to stay with us, I normally collect them from London and use the travel time to find out a bit more about their interests and what they’d like to do. Each stay is different, but typically people get up when they want. If we’ve planned to do an activity they’ve talked about I might remind at 9.30am so that we’ve got enough time. We’ll have a leisurely breakfast together and I’ll get on with any chores I might need to do. About mid-morning we’ll go out to somewhere the person has chosen. If they don’t have anything specific in mind, I might offer a few things that we know might appeal to them – half the time it involves a lunch out. It depends on the weather, just like any break. Sometimes they might have holiday money they want to spend shopping, or we might go out and buy books or get arts and crafty things. Other times it might be watching a film or walking the dog. I still have time to catch up on jobs like weeding the garden or the washing and ironing.

We meet with Joel from the shared lives team regularly online and he comes up every year. Part of his role is making sure the funding is in place for people to stay. And if if it’s somebody new coming to stay we know we can rely on him to give us good information, to dig deep and give us something better than just likes and dislikes. On the rare occasion you need to call someone, there is a duty system in place, so you know that the support is there.

I get quite a lot out of feeling I’m giving people a good time when they stay with us. For somebody to say they really enjoyed themselves, or they enjoyed a particular activity. Or when a carer or family member say “I knew they were in really good hands and I could switch off properly”. It’s just so rewarding.