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Caring for Someone with Epilepsy - Carers UK Forum

Caring for Someone with Epilepsy

For issues related to specific conditions and disabilities.
Hi, Im Clive, Ive been caring for my girlfriend for the past 6 years, but in the last month her seizures have become so bad Ive given up work to care for her full time. I love her so much dont get me wrong, there are times when it just really gets me down.

We both enjoy fishing so to relax you'll find us on the banks of the river/canal, however this has dangers if Kirsty was to have a seizure.

Please, if anyone knows what its like to be a carer as a man, please, contact me... Seems like I had a hard time getting carers allowance because I am a man looking after a woman. I had to answer some VERY intimate questions about our sex life etc.. did anyone else get this or am I alone?

as a man it is very difficult to cope with the rollercoaster ride of emotions, with regards carers allowance there should be no problem providing your girlfriend is on middle or high rate care.Epilepsy isn't just about dealing with seizures (i fully understand) Lisa's moods,memory & her own emotions are badly affected even when seizures aren't present, i'm sure your girlfriends the same.Lisa has tired most meds & has had surgery without sucess.We presently working on the different settings for the VNS (vagal nerve stimulator).Remember your coping extremely well & your girlfriend is fully entitled to a care needs assessment (as you are in a caring role) you local social services should arrange this or even through your gp.
If i can help anymore or want to talk let me know.
best wishes
Give us an update when you can Clive, i hope things have improved.My Lisa has had a bad month for seizures as she coninues to wean of Zonisamide.
We're due back in London in a couple of weeks

I am female caring for my Epileptic 55 years old husband. I have had to fight and request everything for us myself. Our GP was no use whatsoever and after 18 months still have not got us registered as Carer and Care need. I was a nurse before and retired to care for him. i knew the system and what was available but getting it was a nightmare.
i was never asked to discuss our sex life in any way and it sounds like a discrimination case to me.
Good luck.
http://www.channel5.com/shows/brain-hos ... sode-1-513

above is a trailer for a new program starting on Channel 5 on Tuesday at 10pm, Clive if your still around epilepsy is featured including DBS (deep brain stimulation), there is 4 programes altogether filmed at The Walton Centre Liverpool.