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Anyone caring for someone with epilepsy? - Page 8 - Carers UK Forum

Anyone caring for someone with epilepsy?

For issues related to specific conditions and disabilities.
96 posts
a scary glare oooooooooooeer missus lol yes i know about infections my wife suffers recurrent water infections and they drive the seizures wild usually finishes up a hospital job so i know where you are coming from my wifes worst period wasaround twelve per day and in the eighties for the month including mulitple seisures day and night thankfully she s doing much better than that now
Hi marie hope all is well with your hubby and you.

Could anyone tell me if E is classed as a mental problem as well as a physical. I was wondering as he has just had a review of his incap. benefit and it got me wondering. If it is a mental and physical disability could he claim this on his DLA, as his situation has changed - increase in sz activity - and he was going to tell them.

I've asked him to wait until I can find out the classifications of E.

Sorry that all my posts seem to be questions & problems Image
Hi Greywolf. This is a difficult area because Epilepsy is basically physical in nature but can be brought on by external stimuli and stress. Sometimes, people with epilepsy will have an episode within a day or two of starting a new job, for example, despite being free of episodes for years.

This is the link for the "disability handbook" used by the decision makers for DLA/AA, specifically the chapter on epilepsy. Hope it's useful:


But please bear in mind that it's less about the disability and more about its effects on the person's ability to look after their own needs. More seizures may well mean that your OH is less able, at present, to look after his own needs.
Thanks Charles. (((BIG HUG)))

Will check this out and see what can be done or changed with his DLA. Will also let them know about his occasional incontinence problems, as I know from looking after my mum-in-law that it needs to be on the forms. This is something that he doesn't like to be known, I think he's got to swallow his pride a little. Image
This is something that he doesn't like to be known, I think he's got to swallow his pride a little. Image
Unfortunately this is why so many people who should get it are turned down or get a lower rate of benefit. I know a person who needs full time care and refuses to admit to outsiders what help he needs - so he gets nowt. He could be over £100 a week better off.
Hi, I know exactly what you mean, my husband is on middle rate care as he needs care during the night.
I know from my benefits advice surgeries, he does qualify for high rate care too and probably low mobility but we don't claim it either.

OH is very precious about the things he CAN do and I don't want to take that away from him.
He accepts there is no way he could cope with all those night seizures alone and he definately needs help during the night so he has no problem with claiming a night care middle rate although he does not want to claim day care.
All this press reporting of I.B. and disability claimants being portrayed as frauds and scroungers has made him very wary of claiming day care.

He feels, while he is only claiming night care, it's unlikely anyone would ever despute his entitlement as it's so clear cut ! but if people saw him working around the garden etc. on a good day or pottering about with our car, this could be open to an investigation by DWP that he is not in a fit state to cope with. Image
He can't bear the thought of trying to justify his disabilities, it's hard enough living with it! Image
I honestly feel, yes he would qualify and the extra money would ease the expenses of coping with the disability but it would come at a cost neither of us want to pay! Image
We'll hold off as long as we can and if things deteriorate again, we'd need to re-visit this decision.

I bet there are lot's of other people who are in a similar position but the press wouldn't be interested in that would they? no they only want to paint a nasty picture don't they! Image

marie x
Saw neuro today and OH getting meds changed - now on TOPIRAMATE as well.
The down side to this is that with only 6 weeks to go before we could get a seizure alert dog - we now have to start again - 6 months before we can apply again and then another 6 months worth of diaries to fill in, so it's going to be at least another year before we get one.
OH is thinking of getting a dog and training it himself - not sure if it will work but if it's what he wants then I'll back him up Image
Hi, my jack russell is pretty good, I've heard lots of people say that if you live with a dog for any legnth of time and there's seizure activity pretty often, most dogs tend to pick up on imminent seizures.

You just got to watch the dog a few times prior to seizures to see what they do and once that's established it works really well!

When OH has seizures during the day, when we're downstairs my little jack, sits at his feet and whines, once the seizure is over she sits up beside him on the sofa and nothing will move her until he recovers - not even food! Image

She was not 'trained' to do this, we just noticed it over time!

All the best with the TOPIRAMATE too! Image
We're still slugging it out with the Phenytoin and Keppra mix. Image Image

marie x
My OH decided to go to local Dogs Trust to adopt a dog. Image Will try to post a pic of it when we get it. Image
Hi Greywolf
Have just read all through this thread in an attempt to get information about how best to help my husband
Ian is on a gradually increasing dose of Lamotrigine which does not seem to be working. Reading about all the problems and side effects of the drugs is thoroughly depressing. This whole epilepsy business is turning out to be a serious side effect of the severe stroke.
Anyway, the epilepsy dog seems to be something useful we could try. Has your OH found himself a dog yet?
96 posts