looking after yourselves

Your needs and the needs of the rest of the family can sometimes get forgotten when you're caring for a disabled child.

survivial.tipsIt can sometimes feel just too hard to arrange a night out or do some exercise or watch a film. But any efforts you do make will pay dividends in the long run – both for your wellbeing and your ability to keeping caring. Here’s a selection of our top survival tips for maintaining your sanity and keeping your family life ticking over.

Looking after your child

  • Remember that not every minute of your child’s time has to be filled with something educational/useful, do things you both enjoy without feeling guilty.
  • Get any information on your child’s condition that you can; national organisations can give support, advice, and perhaps information on the latest research into your child’s condition.
  • Ask your support group to help. Remember, they’ve heard it, seen it, and been there. They may be able to go to meetings or reviews with you, or write letters of support for you. Find out more about parent support groups.
  • Explore financial help and don’t feel embarrassed about asking for it. Remember, not all benefits are means tested.
  • Ask other parents about their experiences, they will often be your best source of information.
  • Teach your child to be as independent as possible, it will make your life easier in the long run.
Looking after the whole family
  • In the early days or during a crisis, appoint someone outside the immediate family to be the contact person for news, to pass on messages or let people know when they can visit.
  • Don’t be afraid to take the phone off the hook and enjoy what peace and quiet you can.
  • Try to do things as a family – it’s easy to concentrate too much on your ‘special’ child and get the balance wrong.
  • Don’t forget your other children – it’s easy to become so focused on your disabled child that your other children take a back seat. Make time for them separately and look into getting them some support from a ‘siblings’ group. Download Amaze’s fact sheet on Supporting siblings [pdf 545kb] or visit Sibs website for lots of information about supporting siblings of disabled children. The East Sussex ISEND Sibling Service offers short breaks and activity days to children aged 6 to 18 who have a brother or sister with a disability.
It’s looking ahead at a strategy that is not going to crack any one of you up – you can’t have a weekly routine that’s going to leave you exhausted.
Looking after yourself

  • Don’t be ashamed to say ‘I can’t do this anymore’, ask for help when you need it. See our page on Short breaks for information about getting a break.
  • Find someone who’ll listen and take you seriously, not necessarily a qualified person, just someone you get on with and trust.
  • Be selfish – if you go under everyone will suffer. Put yourself first for once.
  • Find ways of pampering yourself – maybe have a massage or some reflexology. It needn’t be expensive. The Carers Card, run by your local council in association with voluntary organisations like Amaze or Care for the Carers, offers lots of discounts and deals on activities across the city that aim to improve the health and wellbeing of carers. Find out more about The Carers’ Card Brighton & Hove, and The Carers’ Card East Sussex.
  • Be prepared to deal with well-meaning but insensitive comments sometimes, even from family and close friends. In time, you’ll find you get better at hearing what people mean to say.
  • Make sure any groups you join are supportive – if you come home feeling worse it’s not worth it.
  • Have an interest outside the family, like work/sport/a hobby. Having somewhere to go where you’re treated the same as anyone else puts things back into perspective.

For more information, download Amaze’s fact sheet on Coping with stress [pdf 750kb]

I play sport – that’s my stress relief. I think it’s essential, and nobody asks you how your child is – I’m a person! It keeps your mind and body together.

 

I found that you just do everything. Everything that came: ‘Yes, she’ll do that, oh yes, we’ll go to that, yes, we’ll do that’. I tried to carry on doing everything and then I couldn’t manage, really. But then it needed someone else to come in and say ‘It’s all right, actually, you don’t have to do all these things, and Alex will be perfectly fine if she doesn’t do these things’… I felt she needed so much input.

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