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Husband with epilepsy - Carers UK Forum

Husband with epilepsy

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Hi everyone,

My husband of 3 years has epilepsy which has mostly been controlled by meds, but now he's been off work for 8 months. It's been massively hard on us both, we've really struggled to get proper medical help, we've got money problems now and we've been struggling getting benefits. We were trying for a baby, but that really doesn't seem like a good idea right now.

We've both been in denial and thinking that it's just a phase and that has made it very difficult for us to accept this as our new norm. I'm starting now to think about the future, how I can reduce my working hours to look after him, how we can live off one, reduced income (impossible, we both have debts and a mortgage, would i have to sell our home and downsize?)

I feel very lonely. It's hard to talk to my husband about it because the situation is very depressing for him, he was very successful at what he did before this and it frustrates him not being able to work or help around the house. He seems unwilling to accept that this may be our new reality. We don't really have any nearby family that can help and I don't like to burden them.

I'm just here because maybe it might help to get some of this off my chest, I can be quite stoic about it all but sometimes you just need a good complain and a bit of a cry, right?
Hi Alice,

Nothing wrong with having a good complain and this is as good a place as any to get things off your chest from what I've seen so far. Also several people here who should be able to give you some good advice or at the very least, point you in the right direction.
Has he seen an epilepsy specialist? How long since he had a seizure?
What sort of work did he do before he started having seizures?
What brought them on?
Hi Alice,
welcome to the forum.

Adjusting to having epilepsy yourself of for a family member to have it, isn't easy.

Has your husband's consultant said he shouldn't work indefinitely? Driving for example for a living is not an option if the person is not seizure free, but lots of other jobs are possible. There is info here about working with epilepsy https://www.epilepsy.org.uk/info/employment

If it is more a case that your husband has lost confidence then voluntary work might be a good starting point. Some organisations run supported voluntary work which might reassure both of you.

How frequent are his seizures? What sort are they? I understand that you want avoid unnecessary accidents, but he should be able to still help with household chores such as doing the laundry etc

There are a range of monitors for those with epilepsy - https://www.epilepsy.org.uk/info/daily- ... s-monitors that might give you both some freedom.

I would try and keep working if you can, (even if you have to approach social care for someone to sit with your husband/check up on him etc ) for your own sanity.

Has your husband applied for PIP?

Melly1
Michael_2005 wrote:
Mon May 18, 2020 10:10 am
Hi Alice,

Nothing wrong with having a good complain and this is as good a place as any to get things off your chest from what I've seen so far. Also several people here who should be able to give you some good advice or at the very least, point you in the right direction.
Thanks so much for the reply :) It’s nice to get to talk to others with similar situations
bowlingbun wrote:
Mon May 18, 2020 12:55 pm
Has he seen an epilepsy specialist? How long since he had a seizure?
What sort of work did he do before he started having seizures?
What brought them on?
Hey, he’s had epilepsy for over 20 years but in the last year we’ve had 2x episodes of him having almost daily seizures. So he had one yesterday. He’s seen specialists in the past and recently has been seeing one who has upped his meds but that isn’t working so we’re trying to get another appointment but unfortunately it’s been proving very difficult, missed phone calls etc from their end.

He worked as a Director of an organisation.
Melly1 wrote:
Mon May 18, 2020 4:03 pm
Hi Alice,
welcome to the forum.

Adjusting to having epilepsy yourself of for a family member to have it, isn't easy.

Has your husband's consultant said he shouldn't work indefinitely? Driving for example for a living is not an option if the person is not seizure free, but lots of other jobs are possible. There is info here about working with epilepsy https://www.epilepsy.org.uk/info/employment

If it is more a case that your husband has lost confidence then voluntary work might be a good starting point. Some organisations run supported voluntary work which might reassure both of you.

How frequent are his seizures? What sort are they? I understand that you want avoid unnecessary accidents, but he should be able to still help with household chores such as doing the laundry etc

There are a range of monitors for those with epilepsy - https://www.epilepsy.org.uk/info/daily- ... s-monitors that might give you both some freedom.

I would try and keep working if you can, (even if you have to approach social care for someone to sit with your husband/check up on him etc ) for your own sanity.

Has your husband applied for PIP?

Melly1
Hey Melly, thanks for the reply. he has had epilepsy for over 20 years and yeah he can’t drive. For the main his seizures have been controlled by meds but he is currently having almost daily seizures at the moment and in between struggling to understand where he is or what day it is and can’t really get about, so he can’t work. Especially as his job requires a lot of thought. They’ve been good and he’s on long term sick. (He’s the director of an organisation)

He has days where he feels a little better so yeah he helps around the house when he can and uses a cane. As it’s so variable he struggles to apply for, and receive any benefits but we’re currently trying to go through the process again.
Alice, I can imagine how frustrating this must be for both of you, and incredibly sad too.
I do hope the specialist manages to see your husband before long.
bowlingbun wrote:
Mon May 18, 2020 8:53 pm
Alice, I can imagine how frustrating this must be for both of you, and incredibly sad too.
I do hope the specialist manages to see your husband before long.
Thank you. Yeah fingers crossed! I think I’m only just coming to terms with the idea that it’s just a very long process.
Hello

What type of seizures does he have? I know that there is epilepsy action UK, you could always contact them for some moral support, information and advice. Or take a look at their website https://www.epilepsy.org.uk/info/treatment. Try to identify any seizure triggers if possible. Ask him to take control of his health, it actually may empower him. See this article with more information on wellbeing and possible therapies for mental health https://www.epilepsy.org.uk/info/wellbeing. Has he had any tests? What were the results?
I hope that you do not mind me asking this but what caused his epilepsy in the first place? If he needs someone to be with him in case he hurts himself, call the local council tomorrow to request a needs assessment. But if the only real issue is his confidence, I recommend seeing if he can do some type of supported work. If the seizures last longer than normal call a ambulance or email his neurologist immediately.
Try keeping a seizure diary too. In it jot down the number of seizures, how long they lasted for and what exactly happened to his body each time. Make a note of the location too in case.
Good luck. I hope that you are able to see his neurologist soon and have some sort of concrete answers before too long. When you see his doctor again at the next appointment, ask about the various treatment options and methods including deep brain simulation therapy. Make a short list of questions on the treatment methods for the next appointment to ask the doctor.