Yesterday I published Chris’ own account of his move into a Shared Lives household. Here, Alison, his Shared Lives carer, very kindly shares her story. Alison writes:
Before moving here Chris had lived for 19 years in a small residential home since his teenage years. It was an excellent home where he was well supported and enjoyed a very good relationship with staff and some residents. I wondered how he would adjust to life in a small family home and whether he would miss having a big group of people to keep him company and support him. It was daunting to know that a team of 12 carers was being replaced by just one. Me!
One year on and I can truthfully say that Chris has never looked back. Shared Lives can often change people’s lives suddenly and dramatically for the better, but at other times it makes a less obvious but no less important difference. For Chris I would say it has been a gentle shift from a subtly institutionalised life to one as an ordinary member of an ordinary family doing ordinary things.
He seems to feel a greater sense of freedom – he makes more choices, comes and goes as he pleases and stays at home alone for agreed periods of time. He seeks permission much less and more often tells me what he is going to do instead of asking. He is encouraged to make his own decisions even if I don’t agree with them – this is much harder for me than it is for Chris! We have many conversations about honesty – Chris gets better at telling me the truth rather than just what he thinks I want to hear, and understanding that if I don’t like it then that is my problem and not his!
His social circle has expanded dramatically – he has met so many new people and is a valued member of our family and social group. He still enjoys close contact with staff and residents at his former home and has begun to meet new people independently of us and we continue encouraging him to do so.
Perhaps the thing that (wrongly) surprised me is just how much it clearly means to Chris to have “less forms to fill in”. Assessments and safeguards are still there but are much less intrusive into his everyday life and more proportional to his needs. Used inappropriately such safeguards can have a subtly disabling and dehumanising effect with their emphasis on limitations not possibilities, and I have learnt that we shouldn’t underestimate the impact they can have on people’s lives and on their sense of freedom and self-determination. Yes Chris needs support, but no he does not need a risk assessment, care plan or signed permission from me whenever he wishes to spend the evening in the pub.
The three words that I believe sum up Chris’ move here are probably the same as in many other Shared Lives homes – freedom, normality and belonging. We all know – and it can’t be repeated often enough – that the bedrock of Shared Lives, distinct from any other form of care, is normal family life. Chris asks us things, tells us things, seeks advice, ignores advice, makes us laugh, infuriates us, socialises with us, spends time alone, cooks the dinner, refuses to cook the dinner and has good days, bad days and days in between. Normal family life. The normality not the disability. And from this stems greater freedom underpinned by a greater sense of belonging. If and when he moves on for whatever reason then he will go with our blessing, but for the time being he is one of our family, this is his home and this is where he belongs.
One occasion sticks in my mind: a routine check-up and Chris is braced for lengthy, repetitive and at times intrusive questioning about his mental and physical health, as life ‘in residential’ had previously required. In fact it was short and sweet, very positive and entirely appropriate to his needs. Afterwards he sat in the car with the biggest, broadest grin on his face and said “I’m just SO happy I don’t live there anymore!” Chris is not much given to big displays of enthusiasm or emotion, but those few words, that broad grin and the overwhelming sense that he was indeed and at last now living a ‘normal’ life told me everything that I needed to know.
Escaping the invisible asylum 