PSS Shared Lives
Bill and Kate's Shared lifetime
Shared Lives is about so much more than supporting someone. Similarly to foster care, carers build the strongest bonds with the people who live in their home or they support for the day. They share so many experiences. They learn together. They face challenges alongside each other. They laugh and they live their lives to the fullest.
When Kate watched a baby crawling at the children’s hospital where she worked as a nurse in 1965, she never knew this child would become a such a big part of her life. This child was Bill, who, as often was the case during this era, was given to the care of children’s services when his parents were made aware of his developmental needs. Doctors would often give this advice when children had a disability at this time. This was especially the case if they already had a large family and might struggle. Bill came from a family with lots of children and his parents were persuaded that this would be the best decision for him. He would be able to get specialist support to grow into an independent adult. Bill was placed in a children’s hospital to receive treatment for his physical and learning disabilities. Kate remembers meeting Bill whilst completing the first part of her nurse training and recognising his late development by the fact he was still crawling at nearly two years old. Bill had a chest infection and Kate nursed him to recovery. She remembers he loved his food and how her shifts always seemed to fall at the time when he was ready for his bottle. Kate always remembered Bill, especially since he was one of the first patients she had worked with so closely in her nursing career. She learnt a lot from Bill and Bill received so much support from her in those precious early stages of his life.
This was not the last time that Bill and Kate would meet. In fact, it seemed like their paths just kept on crossing, almost as if fate was bringing them together, says Kate. When Bill was a toddler he was nursed by Kate in the same children’s hospital over a period of time again. She remembered him well and saw that whilst he had grown in size, he was still unable to walk and his mental development had not advanced much since he was a baby. Kate then moved onto a different hospital for adults with learning disabilities. Many years passed as Bill grew up in this hospital environment, moving from long-stay hospital to long-stay hospital, back and forth. At this time, adults with learning disabilities would often find themselves living like this, in ‘institutions’ as they were then called. It was many years later that Kate and Bill would meet again.
Kate moved on from being a nurse in the hospital to general nursing across lots of different hospital settings, coming across people from so many different walks of life. Her main motivation has always been caring for people. Kate had previously met her husband, Tim, in one of the long-stay hospitals where Bill had lived through the years. When Kate moved from working here, Tim had stayed, although he never worked on the same ward as Bill.
One day it was decided that these long-stay hospitals would be closed down in favour of alternative social care solutions. Shared Lives was one of these solutions and was all about people being given more freedom and independence. With Shared Lives they would be supported to move out to do all the things in life they wanted to do, living with a family who could support them to do this. The first people who were asked about becoming carers were staff at the hospital; people who were built of the right stuff to support someone and would also be losing their job when the hospital closed down. Tim, Kate’s husband who had been working nights at the hospital, was one of the open-minded people who was willing to do this. He spoke to Kate and they agreed that they would become carers and open their home to someone who needed support.
Tim and Kate went for a meeting with the team at the hospital to discuss who they might support as a carer. Kate instantly remembered Bill. She was shown a presentation and saw Bill’s picture. ‘There he was looking at me’, said Kate. She remembered Bill’s face so well and felt quite emotional seeing him so many years on. She was instantly struck by the same feeling that she had felt before. This must be some sign. Why did they keep meeting? It seemed right that Bill should be the person that moved in with Kate and Tim and become a part of their family. It would be a challenge but Kate couldn’t ignore their link.
Bill was in his early twenties by this stage and had been living in this hospital for a few years. Kate saw Bill and remembered that baby who she had met at the start of her career and how he had grown up in many respects but was still so meek as an adult, almost childlike. Bill couldn’t communicate but Kate could see that he felt quite disturbed and not comfortable in his own skin. Bill would sometimes hurt himself and, unable to explain why he felt like this, become quite frustrated and fed up. Kate wanted more than anything to give him the happy life he deserved. Witnessing that the people living in an institutionalised environment which was common of this era didn’t always get the same freedom as others, Kate sought to do things differently. She remembers people would see her as a bit of a maverick in her roles supporting people with learning disabilities and mental health needs. Throughout her career she would do her best to integrate people into their local communities to give them an active life. Back then, this was quite a different way of approaching things. ‘People just didn’t have the same rights,’ says Kate.
Bill moved in with Kate and Tim permanently in 1989 when he was 25, after initially staying with them on respite. Kate and Tim needed to make sure their home was accessible for Bill first to give him the best life possible. Kate was concerned that Bill’s life had been limited by the environment where he lived. She was sure there was so many kind people working in the long-stay hospitals but also recognised that there was a lack of understanding and awareness for people with support needs like Bill. The systems and processes of the era wouldn’t have enabled Bill to have freedom and independence. Bill’s life was completely transformed when he moved in with his Shared Lives carers. When Bill first moved in he began horse-riding, he was so active; socialising with the family, learning new life skills and taking control of his own life. Kate was worried by some of the behaviours she had seen from Bill. Witnessing him hurting himself, Kate worked hard with him to understand this and help him to overcome it.
Over years and lots of determination, Bill did overcome this. He stopped hurting himself and seemed so much happier and comfortable with who he was.
31 years on, Bill is as much a part of the family as Kate’s own children who love Bill like a brother. Kate was so lucky to have an accepting family and friends around her who really supported her with Bill and adapted their life around him. The whole family’s life with Bill has been very rewarding; it’s been full of challenges but Kate says she would never change things. Bill has shaped their lives just as much as they’ve shaped his and, for Kate, he will stay living with them now whilst they are able to carry on supporting him. Bill is now in his 50’s and Kate is in her 70’s. It’s truly been a lifetime supporting Bill and Kate feels so blessed to have watched him grow from a vulnerable baby into the confident man he is today. Kate loves nothing more than going for a stroll on the beach with Bill and sharing her life with him.
Find out more about becoming a Shared Lives carer.