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Don: "We had to think about the future"

Carers UK Vice President, Don Brereton, and his wife Mary cared for their son Sam, who has Down’s syndrome, at home his whole life. As time went on, they began to consider the future and who would look after Sam when they couldn't.

It’s not easy to let Sam go because we feel like nobody can look after him like we can. But it got to the point where we had to think about supporting him to have more independence and trusting others to care for him.

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Sam has a fun, good natured and generous character. We always knew that he could never live alone. He has learning difficulties and struggles with his motor skills, which means he can’t cook his own food, bathe himself or cope in an emergency like a fire. We’ve been caring for him his whole life and although it’s been tough, as a family we’ve coped. He’s never happier than when he is at home with my wife, Mary, and I. That’s why I never really considered any type of
supported living arrangements. It was only when Sam was in his early 30s that I began to think differently.

It was hard not to consider the future. What might happen when we all grew a decade older? If one or both of us passed away, got ill, or had an accident? It would be a disaster for Sam who needed us for everything. It wasn’t an easy thing to think about. We worried he wouldn’t get the same love or support somewhere else. We wanted him to be in a place that feels like home.

We knew we would miss him and it would be hard but we had to keep thinking long term. It would be better for Sam to get used to being away and get settled now instead of being forced to later due to circumstance.

When we began looking into supported living, there was very little information or availability. There was no grand list of places he could go or tips for what to look out for. I also had no idea how Sam would react. We attended ‘independent living days’ to find out more but these just upset Sam. Without a tangible place for him to go he didn’t really understand and it made him worried about losing his family. In the end, it took us five years to find a supported bungalow, where Sam settled in well. It made it all the more traumatic when it didn’t work out and he moved back with us for a year.

For the last few months Sam’s been living in a new supported housing development during the week and with us at the weekend. They have many activities which suits Sam because he’s so sociable and finds it hard to occupy himself. We’re still a bit anxious because of what happened before but it does feel like he is happy and cared for.

Although we miss Sam, we know the independence he’s gained will help him in the future. After decades, it’s also been very liberating during the week to be able to go out without a detailed plan or visit places Sam wouldn’t enjoy. We’ve all got a new life that we didn’t have before.

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