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Family relationships

Caring for your disabled child

Having a child brings a lifelong committment, but with an expectation that when your child grows up, they'll need less care from you. When your child is disabled things can be very different. You are both a parent and a carer. Accessing the help and support you need can be a battle.

Sound familiar?

Facing the future:

"After Josh was born I went through this period of adjusting my dreams for him. It's not just that he'll never play for United, but the little things like will he ever be able to tie his shoelaces. Nowadays I find myself worrying so much about what will happen to him when we're gone. What kind of a future will he have?"

Being fair to your other kids:

"I do feel bad for my eldest daughter. Because of Megan's disabilities, so much of our life is about Megan - Megan's routine, Megan's diet, Megan's hospital appointments. Rosie is so sweet about her sister but I know it must affect her. I try so hard to make time for her too, but Megan's care is so intensive. Rosie does miss out and the guilt is horrible."

Making time for your relationship:

"It's so hard to find time for us as a couple. Adam's behaviour is very challanging and it makes it almost impossible to find a 'babysitter'. Couple time is very hard to come by."

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Caring for an elderly parent

Helping our parents adjust to old age is part of life's cycle. Sometimes slowly, sometimes suddenly, we find ourselves with more and more responsibility for looking after them. It can start with small jobs – the garden, the shopping and over time it becomes more intensive. We may watch our parents caring for each other and see them start to struggle. Our instincts are to want to help, but that help might not be welcome. Adjusting to these changing roles is a big emotional step for both parent and child.

It can be especially hard if personal or intimate care is needed. There can be so many practical things to do - organising replacement care, dealing with an army of 'professionals' (none of whom seem to realise you have a life too), and not forgetting your other responsibilities like your job, your family, your friends, your social life. No wonder caring is one of the most stressful things we can do.

Carers' voices

Changing roles: 

"Throughout my life mum's been there to look after me, even after I got married Mum was around to help me and support us. Now the tables are turned and it's my turn to look after her. I don't begrudge it but sometimes I miss my mum as she was."

Juggling care with work: 

"It's a full time job trying to help Mum organise her care - we've had umpteen meetings with doctors, consultants, therapists, social workers - whilst I'm also trying to hold onto my own job. I just can't afford to give up work - my eldest has just started Uni and we need the money. My boss has been understanding but I hate feeling like I'm letting them down."

Dealing with the rest of the family: 

"Dealing with my brothers is as much of a stress as dealing with Mum. One of them seems happy to let me get on with it, he says it's "too painful" to see Mum like this and that's why he doesn't visit. My other brother is the opposite, he lives 200 miles away but he phones me daily wanting updates and sticking his oar in with advice on what I'm doing wrong. He means well but it drives me potty."

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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.

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Caring can be complicated. We're here for you with help and advice.

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