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Caring for an older family member with learning disabilities
Caring for an older family member with learning disabilities

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1 What are you aiming for?

Do you know what ‘success’ would represent? You’ll start with hearing from a carer – Mel.

Activity 1 Mel’s story

Timing: Allow 20 minutes

Mel’s brother Sam is 50 and has learning disabilities. Mel has always been very closely involved in Sam’s care and supported her parents as they aged and were no longer able to care for Sam at home. Sam has lived in different types of housing and homes. Read what Mel says about the different places he has lived in. As you read make a note below in the box on the left-hand side what helps to make a good home for Sam. When you have done this think about what a good home would look like for the person that you care for. Jot down your ideas in box on the right-hand side below.

Mel and Sam

Sam is 5 years older than me. We have a very close relationship, we always have. I’ve always thought he’s very special. He really touches the hearts of people when they meet him. He loves watching snooker and darts. But he likes football and rugby and all sorts of things really. He likes to be in a pub with a pint of beer. He used to love gardening a lot – weeding, and just helping out.

Sam lived with Mum and Dad until my Dad died 15 years ago. Because mum couldn’t cope on her own he went to residential home. He lived there for 2 years, but he never settled and kept saying he was bored and wanted to come home.

After that Sam was placed with a family. It was a man and woman who were both working with people with learning disabilities, but they had two young children of their own. And then I don’t think I realised, but Sam had to share a bedroom with another man with learning disabilities which was probably far too crowded for him. And he ended up thumping the lady, and she literally ….was washing his clothes ….she just grabbed it all, stuck it in dustbin bags, said ‘Get him out’.

And that’s how he came to go to his first Shared Lives carer, Sheila. She had a spare room and also has a daughter with learning disabilities and let Sam stay initially to see how he got on. Sam was very, very challenging at first. He was very fisty, thumping, and shouting and having outbursts and all sorts of stuff. But anyway, he stayed and they worked with him, and they made just a massive difference to his life. They gave him what he needed more than anything - security and love. And routine. They did once work with a psychologist, because he’s always had issues around the toilet, obsessive going to the toilet all the time. They lived not far away so I had him visit us once a month and my partner and I took him on holiday once a year. And then he normally stayed for about a week at Christmas as well.

And he was with Sheila for 13 years. There were ups and downs, but he had a very good life with them. Anyway when Sheila was 75 and she got some health issues and wasn’t able to do as much with Sam and said she wanted me to look for someone else to take care of him. He‘d started to become a bit quiet too…

We then heard a year ago through Shared Lives that there was a couple who live nearby who were both Shared Lives carers who said they would like to have Sam go live with them and that he can have his own room. So it came as a bit out of the blue but we agreed to try it out for a couple of months. Anyhow they’re a lovely family and we get on very well with them as well. I didn’t want to say too much about things if I’d noticed things with Sam when he lived with Sheila … and we did talk about certain things that we disagreed on slightly ….at times, I think, looking back now, sometimes I wish I’d done more. But now with the new move, I feel I don’t have to perhaps tiptoe round as much. I have talked about things with the new carers, I said right from the beginning, and they’ve listened and they’ve given their opinion. But they’ve said, ‘Yeah, we really want to work together on this’. We’ve seen a huge change in him already, in terms of him being more stimulated, and how he is, he’s a bit more lively in himself. It’s more sociable. Because there was just him and Sheila before, whereas now he’s with a couple, and they have 3 older children but who visit regularly and take him to the football. I still have him to stay once a month and we are planning our usual holiday and Christmas holidays with Sam.

I think if this placement that he’s got now continues in the same vein, then I think he will have all the support to do what he wants to. Health wise, he’s got a good doctor and… again, support from his new carers.

What makes Sam’s new home successful? What would be the ingredients of a successful home for the person you care for?
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Mel talks about some of the pros and cons of previous placements and what makes for a good home for Sam. Contributory factors are:

  • having the opportunity to ‘test out’ a placement first to see if it works for both parties
  • Sam not living far away so Mel can have Sam visit her regularly and take him on holiday
  • a good relationship with the carers
  • Mel feeling she can have frank conversations with the carers and they listen to her
  • carers who can provide stability and who work on behavioural and health issues, seeking help if needed
  • Sam has his own space but also has opportunities to socialise.

Hearing from Mel will have helped you to start to formulate your own ideas about what you see as being essential to the sort of future home you are seeking for the person for whom you are caring.