Newbie to this site, but old hand carer

I’m new to the carers’ forum, but an old hand at caring. I’m a retired nurse and care for my two adult children at home. They are 29 and 32 years old. Both have an incredibly rare adult onset genetic disease called Kufs.

It is a neurological degenerative disease and presents with dementia, epilepsy, motor and cognitive dysfunction, dysphasia and aphasia. They are the only known cases in the UK, so it’s a lonely place and we are the experts. Even medical professionals ask our advice!

Everything we have done is a fight, but my husband and I need to stay strong for them. I had a stroke 3 years ago, that was my breaking point, and a big nod to slow down. I gave up an executive, well paid job, survived near financial ruin and now work as a full time carer at home, after physically recovering myself. After a 2 year battle, with CHC, I won and now get paid 20 hours a week from my daughter’s CHC budget. Their complex care is assessed as 2:1, care home costs were estimated at £3,600 per week x 2 each, so at a weekly cost £14,400, it finally made sense to pay me £260pw instead! Massive saving to the NHS and I’m where I want to be.

I’ve learnt tons of caring tips along the way and continue to learn everyday. I’ve managed to help a few people with the minefield of caring, but I wish I had known about this site years ago, there’s such a wealth of information here.
Thank you

After a 2 year battle, with CHC, I won and now get paid 20 hours a week from my daughter’s CHC budget.

Hi Katherine … welcome to the forum

The above statement … are you now employed by daughter ? … or by a third party ?

If so , evertyhing by the book as far as the TaxMan ( HM Revene and Customs ) and DoleMan ( DWP ) are concerned ?

Claiming any benefits …especially income related ones ?

There could be " Problems " … just checking the precise relationship before expanding on it … if necessary.

Others will be along to extend their welcomes.

Welcome to the forum.

How much other care and support do you have?

Nice to meet you. What a tough situation. Are there any online support forums overseas. There is Huntington’s disease in my family, genetic, but less rare. When I first found out about it a lifeline for support was the US form on the illness as there was no forum here. xx