Veronica’s Story

Veronica talks about her experience as a shared lives carer, supporting the same person for 30 years.

I found out about Shared lives because my parents did it. They had three people that lived with them, and I helped them whenever they went on holiday.

I’ve now been supporting B for 30 years. It’s not something that you go into lightly, but because of my parents’ experience I knew what I was getting into. At that time my children were just about to start school and it fitted in with my life. Of course, I knew there would be challenges. So, I did the training once a week, which lasted about six months, and I took that time to make sure that I really wanted to do it. Becoming a Shared Lives carer is a very slow process, which is a good thing.

What has surprised me is how rewarding it is. Especially being an advocate for somebody. They become part of your family. You can’t help but care what happens in their life.

After I’d done the training and the checks, I think the team talked to my family too, to see what my support network was going to be like. The social worker presented a report to the panel, who I didn’t get to meet, and they had to pass me. Then we had the matching process which takes time too, because It’s important to make sure that everybody is happy.

The matching is very carefully done, over a series of meetings, that build up to the person you’ll support staying over with you and your family. This was especially important for B. The social worker said he knew he had to get B into a family when the Shared Lives scheme became available. He was twenty-nine when we first met him and was diagnosed with clinical depression. He had been in a traditional care setting since the age of eleven and had institutional behaviour, so we knew it would be an adjustment for him. So, we were happy to take it slowly to be certain, because you can’t be messing about with somebody’s feelings.

I knew I had patience and perseverance, but in the beginning, it was still quite difficult. But we all know that living in an institution isn’t great for anyone and I’d seen my parents’ commitment, so I hadn’t gone into this blindly.

It’s really important in the early days to meet with the other carers – you need that support, so you know you’re not on your own. It’s great for bouncing ideas around. 30 years ago when B first moved in with us it was a different climate too, it was good to have B living in in our family, educating people in our community about embracing difference.

This is not something you do for monetary gain, it’s about making a difference to somebody’s life. When I was young, I wouldn’t have thought this was what I’d end up doing. But you gain a lot of skills along the way, which has surprised me. It’s made me a stronger person. So, there isn’t any day when I get up and think of not having him here. It’s like breathing. You just do it, because it becomes part of your life. B thrives on routine, so whatever is going on I know I have to be there for him.

He has been included in big moments in our life, he still talks about when the dog died. And he’s seen our family grow up and go off to university and have children of their own. He came with me when my dad died and during lockdown it was the two of us together. That was a challenging time for his mental health. He has six siblings, so I put a rota together for his family to speak to him and also friends that he knew from the groups that he belongs to. A Shared Lives carer is about providing companionship and being that person that provides some continuity.

Our typical day starts at 6am when we get up. A taxi comes at 7.30am to take B to another carer as I go to work. I work in a school. I’ve always worked so we’ve had a second carer for a long time – the same person who is like a family friend now. That’s been a great support for me, somebody else to call on if there is an emergency – like when we had a leak at our house and had to have some work done. It’s another familiar person who can support B’s routine.

When he’s at her house he often waits for a bus to take him to one of his activity groups like the ‘Baked Bean Drama Group’ where he gets involved in some fantastic plays. He takes a packed lunch or sometimes he’ll cook at one of the activity places and then he comes back by taxi and has an evening meal with me. Sometimes we go out for a meal together, eating out is probably the thing we enjoy the most – B’s favourite is burger and chips. And his face lights up if I say we’re going to see family. In the evening, we watch TV together or B goes to his desk to do some of his ‘writing’. And now we’re older, we go to bed quite early.

Things change as you get older, for both of us – I used to play a lot of sport, which is one way I would find time for myself when the family were all home, but now I have fibromyalgia, so I don’t do that. But I don’t feel deprived, B is as much company for me as I am for him.

B is sixty now. When I noticed some changes in his behaviour, I pushed for a benchmark test which has revealed early on-set dementia. Advocating for him is even more important now. I don’t think I realised how much our bond would grow over the years. I worry about him in the same way that I would for any member of our family. But I try not project how I’m feeling and live in the moment.

The Certitude Shared Lives team are very supportive, and empathetic. They support me with things like online paperwork, which is not my strong suit – helping us with things like applying for B’s Blue badge and with the appeal when it was initially turned down. Every challenge I’ve been able to get through because of the strong support around me family, friends and other carers. I have a good relationship with B’s family and they’re very appreciative of what I’ve done, but I always say that I’m the one that needs to say thank you to B for enriching my life. I wouldn’t be without him.