Skip to Content Skip to Navigation
Member Login

Member login

No account? JOIN US

This is caring: Samantha

Samantha, 48 cares for her brother Chris 53, who has Down’s syndrome and severe learning disabilities.

Chris has lived with Samantha, her husband and their two children for the past 15 years, and has been considering moving into supported housing.

Samantha and Chris Pier

Chris and I have been partners in crime since we were children. I remember giving Chris a piggy-back down the stairs, falling and knocking the radiator off the wall.

To begin with Chris had very little speech, he developed his own speech and signs so we could communicate and later learnt Makaton at school. We had an unspoken language – and could use it to get into all sorts of mischief!

Samantha and Chris baby

I always knew I’d be there for Chris – but never really thought he’d actually live with me. Mum died in 1995, and by 2001 dad was in poor health and unable to look after Chris anymore. I was his main option.

I was very naïve. I honestly remember telling my husband I didn’t think having Chris to live with us would make much of a difference.

Samantha and Chris bubbles

Since Chris moved in I’ve been constantly juggling to be all things to everybody. I had a young family at the time – Holly was 8 years old, Charlie 3. I have a photo of Charlie one Christmas opening a present and looking up anxiously at Chris. But they’ve grown up with him and he’s just their Uncle Chrissy who they love and have a lot of fun with. Holly and Charlie have grown up to be such lovely, caring adults. I’m so proud of them.

I’ve always worked in health and social care – I think growing up with Chris has helped me relate to people and understand what they’re going through. But I have had to give up two jobs I loved because I just couldn’t cope with working full-time or part-time sometimes while caring for Chris. That has been difficult. I'm now a freelance advocate for people with disabilities.

The financial loss is irrecoverable. We rely on my husband’s modest income, and I can’t afford to reduce my hours any further. The £62.10 Carer’s Allowance is an insult. Chris pays a contribution towards his living cost, but I’ve never increased it while he’s been with us. It’s important he’s able to get out and do the activities he enjoys.

Chris’ health has deteriorated, and his world has got a lot smaller. He has COPD and has gone from being fairly able and independent to needing seven nebulisers a day. He spends a lot more time at home and has started to get obsessive about who is in the house, and doesn’t like people at home during the day. When you have a family you need to be able to be flexible and spontaneous.

I have to ask myself what Chris is trying to tell us through his behaviour. I know he is thinking about moving out, so he can have his own space and take life a bit slower. I bought him some new bedding and the first thing he said was he’ll take it to his ‘new house’. He’s making his own views clear, and I’m listening.

Finding the right place for Chris has been difficult. At first social services suggested I find housing out-of-county, where it’s cheaper. Chris has lived in Bristol his whole life and it’s where his friends and activities are. They also didn’t think of the huge impact that Chris’ housing would have on me.

I need to start putting my own health first. I have recently been diagnosed with a neurological condition, and while it's not life-threatening I am in pain every day. My GP has always been really supportive and agrees fully with my decision to take a step back from providing all of Chris’ day-to-day care.

My main advice to anyone who is taking on a caring role is to be candid and completely honest with yourself. I never thought about old age, about Chris’ health deteriorating or getting my own health problems. When you make a decision to care, weigh up all the options and think about what you can provide now, in a year, in five years, in ten years.

I definitely haven't taken enough breaks from caring. I would go away for a weekend when what I needed was a fortnight. And often I’d bring Chris along on our family holidays. I can see now that I didn’t need to do that every time – I deserved that time alone with my children and husband.

I know I shouldn’t feel guilty – but sometimes I still do. Over the last 15 years I’ve given Chris the best possible life and wonderful opportunities. That’s not going to stop – whatever we decide to do in the future. I’ll still be his Court of Protection deputy, go with him to medical appointments, take him on holiday. But I can’t go on doing everything, every day, without support.

It will never change how I feel about him. But it will be so lovely to be his sister again and not his carer-come-manager!

Samantha and Chris recent

  • This article first appeared in Caring magazine issue 42. Packed full of news, information and features on all things caring, the magazine is out four times a year for Carers UK members. To get your copy, join us.

Join us

Hands join us

Together we're a supportive community and a movement for change.



Your donations are an essential part of helping us make life better for carers.

How you can help

Carer and son

With your help we can reach more carers with timely support and advice.



We will keep campaigning until every carer gets proper recognition and support.

Back to top string(7) "feature"