Skip to main content

Louisa – “Advice from Sibs helped me get better support for my disabled sister”

I live in Northern Ireland with my husband and we look after my mother-in-law who is in her 90s. My own parents are in their late 70s/early 80s and live in England. They are on a basic pension, and Mum has recently started having memory problems. My sister Emma has Down Syndrome and lives next door to my parents. She had carers that came in some of the time. Mum and Dad were taking it in turns to fill in the gaps, but they realised they needed more help.

I was going over every other month to visit and try and keep a check on things. Then Dad had to have an operation, so I went over to stay and take care of Emma, Mum and Dad. I persuaded my parents to have Mum assessed, and she was diagnosed with dementia. I knew my parents were no longer able to look after Emma, and I couldn’t look after her permanently.

I just didn’t know where to turn for good advice. Then I did an online search and found Sibs. I followed the advice in Sibs guide ‘When your brother or sister needs more support: How to get a care needs assessment’ and kept a journal of what care tasks I was doing and when. I asked all the other carers to do the same while on their shift.

I requested a review of Emma’s needs and we were assigned a social worker. I passed him all of the journals we had written and he read these before the review. He took the case to the local authority funding panel, who awarded direct payments for Emma to have 24 hour care. The social worker viewed himself as Emma’s advocate, and I can’t praise him enough.

The payments were back dated to include the emergency care I had given which was a huge help with my flight costs, and especially as I hadn’t been able to work. I found 3 new carers for Emma and we have a rota set up until the end of the year. I manage the rota and paying the carers online. The suggestions Sibs gave me were invaluable – thank you for being there and guiding my first steps.

All names have been changed. 

Would you like to help other siblings by sharing your own story? Please get in touch.