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.