headaches, frontal lobe epilepsy etc

[Grumpyoldgitt]

hi, a brief summary of what’s going on. My partner was diagnosed just over 2 years ago now with frontal lobe epilepsy. It started with permanent headaches and blacking out episodes. Just over 2 years ago the blackouts turned into seizures, clonic tonic seizures. She has no warnings and on a couple of occasions she has been carrying out small son down the stairs. Consequences have obviously been serious due to not getting any warnings.

Londo hospital have now discharged her as she’s been referred to Chalfont clinic and we’re waiting for appointment there which we’ve been told will be about 6 months time.

I lost my job for having too much time off of work and am now her 24/7 carer which obviously puts a strain on our relationship being together 24/7.

We’re now on our 2nd social worker who is also as much use as a chocolate teapot. Been trying to get a carers assessment since jan 22 & still waiting. It’s for both of us as I’ve just been diagnosed with cancer for the 2nd time in just over a year. Financially we’re struggling and the only way I can keep up is by cashing private pensions in.

there seems to be plenty of offers of help out there but just as you get your hopes up they seem to disappear.

Am I being unreasonable in thinking we’re on our own, how do others cope? My biggest worry is that as I’m going to have major surgery soon that I won’t get through it. What happens then?

[EpilepsyAction1 Partner Epilepsy Action]

Hi Grumpyoldgitt

You most definitely have a lot to deal with. I’m sorry your social worker isn’t of great help. Have you tried giving them a list of what support you both need. This may help them as they may not truly understand what it is like to live with epilepsy.

Safety - Epilepsy Aepilepsy.org.uk/living/safe...

Some people with epilepsy, or if you care for someone with epilepsy, you may be able to claim government benefits or get help through financial support schemes.

We have our webpage with information about the financial support that is most likely to be relevant to people with epilepsy and their carers. At the end of this page, we list welfare organisations that can help people claim benefits they are entitled to.

epilepsy.org.uk/living/bene...

I wonder if it would also be helpful for you to contact Macmillan Cancer Support. They have lots of information on support and benefits available for people with cancer.

macmillan.org.uk/

Communicating with people on here and through other social media, is a really good idea. So, I hope you hear from others in this community soon.

If you don’t, as well as managing the HealthUnlocked community, Epilepsy Action has other ways for you to contact others. These are:

Facebook facebook.com/epilepsyaction

Twitter twitter.com/epilepsyaction

Talk and Support epilepsy.org.uk/talk-and-su...

From our experience, in most case people find it helpful to talk to or contact people who understand what they are experiencing.

If you wish to talk to our helpline team and you live in the UK, please do phone our freephone helpline 0808 800 5050.

Our helpline is open Monday to Friday 8.30am until 5.00pm, and Saturday 10.00am until 4.00pm.

Regards

Diane

Helpline Team

[ciley]

hello, just back on here again,not that i've been ok !!! you made me smile 'choc teapot', not heard that one before~ciley