Carer newbie on site

[12dragonfly34]

Hi I am an older carer looking after my husband of 72 who has epilepsy. Are there any other carers on this site or is it just for sufferers. I cannot find anywhere that helps or advises carers

[Tazzy2]

Epilepsy Action is for all so welcome, hope we can give you the advice you need.

Feel free to message me if need as both a sufferer and been a carer for.

[12dragonfly34 in reply to Tazzy2]

Thanks Tazzy, just feel so isolated sometimes when all you can do is look on, you cannot help and clock watch to see if you need a doctor, all they and paramedics do is give diazapan, which I now have on prescription to give him myself, so have to wait and see if that works before consulting anyone, then how long do you leave it. Very frustrating and sometimes worrying.

[Tazzy2 in reply to 12dragonfly34]

Has your GP given you any idea how long to wait as varies from person to person.

What type of fits does your husband have and are they several different sorts?

[12dragonfly34 in reply to Tazzy2]

They are what used to be called petit mall, makes wierd and wonderful movements with his hands, he would wander around picking at things and talks a load of rubbish. I have taken a video in the past and his consultant said they can go on for hours nothing to worry about (he is not here at 3 a.m. watching tho. Now they can either suddenly stop or he will have a grand mal (proper fit), it is then all over and he will sleep. Sometimes he will hold his breath after the fit and I have to try and rouse him to make him breath.

I have coped for 40years but it does get to me sometimes and then I feel bad because I just want to get away and it is not his fault.

Sorry to moan on it has been a bad 2 nights.

Basically unless it is a proper fit going for 5 mins then supposedly I do not have to worry.

Thanks for talking

[Tazzy2 in reply to 12dragonfly34]

We are all allowed to moan. Have you ever rung the epilepsy helpline as they are great. It a freephone number and the epilepsy action website is great as well, number is on it is 0808 800 5050 if want it. You can often stimulate the person to breathe by rubbing their back like you would a baby ad telling them to breathe - has to be doe virtually every time with me and works.

People say must be hard for you, I say no hard for those with me, I know nothing about it

[12dragonfly34 in reply to Tazzy2]

Bless you Tazzy thanks for that, will certainly ring that number and never knew about rubbing his back. Never to old to learn eh.

[Tazzy2 in reply to 12dragonfly34]

They have local groups too so worth seeing if one near you - Epilepsy Action whose group and helpline this is.

[Tazzy2 in reply to Tazzy2]

The site is here epilepsy.org.uk/

[alexpaul]

Thanks

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