How to be supportive to someone with seizures!

[Suzanne H]

Hello.

Any advice would be welcomed!

My husband who is 65 has had 2 nocturnal seizures since Feb. His medication is finally in the right level. This has really shaken the both of us as he already has a host of other medical issues and it's just one more to deal with. I feel bad for him because he works hard at taking care of himself, and always ends up with another problem - first heart, then cancer and now seizures.

I often don't know how to support him. He's tough and independent and strong and doesn't want me to hover over him but at times I can't control my worry. I'm even afraid to leave him alone, even though he encourages me to go out and do my own thing. Like I compete with my dog in agility and I'm afraid to leave him alone at home.

So what can I do to handle this???? I love him with all my heart and just want him to be safe.

Sue

[thornton8000]

Suzanne,

My wife would ask the same question!!
I tell her the same things, except i cannot work, i stay at home and have family members help me take care of the kids every now and then, i also have a host of medical issues as well. To put your mind at ease only 2 is not that bad i've had a lot more so he's a alot more controled in his seizures than I am.
Talk to him see how he feels about his hos seizure control and health and go from there would be my best advice but I'm not a doc.
others here will chime in as well.
Mike

[Fedup]

Suzanne H

You already are, you just dodnt realise it, what do I say to you, honestly I do not know, but by being here already says a lot about you. Like thornton8000's " My wife would ask the same" the one thing I do know is like you she is there for me and this means a lot, more than you realise.

[Chaz1]

Suzanne, hello,

Living a full life (each to own) one can accept destiny, living a curtailed life, one may regret.

My Son 26, diagnosed end 2009 E has had many a nocturnal and some day time T/C seizures, scary hell yes.….but if I were to wrap him up in cotton wool and I have wanted to MANY a time, there would be no tale to tell of life other than cotton wool.
Care we will (big job on the heart) but live and let live…and talk about it, seriously talk about it and document every seizure in a dairy, every one, because you can see patterns and will be much better equipped to deal with doctors, one flip of the notebook will bring ‘it all back’ and help find seizure triggers, potentially see them coming and learn to manage.

So I guess what I mean to say, it should be sharing rather than caring only, because caring only can be to big a burden to carry, not only for the carer.

warm welcome to CWE :-)

[Nakamova]

It's still early days for you in getting used to the diagnosis, and getting a sense of how well the medication is working. After a few more months, both of you will have a better sense of when to worry and what to worry about. In the meantime, cut yourselves some slack, and keep in mind that both of you are coming at this issue with the right motives -- his desire for independence (for the both of you), and your love and concern for his well-being. It can help to schedule specific times when it's okay for you to call and check in with him when you're away.

[valeriedl]

I know my husband feels the same way that you do. He works a full time job and I can't work because of the epilepsy. I have on average around 4 seizures a month, some worse than others.

Every morning when he's at work I send him a text to let him know that I took my meds. He worries that I may sleep through my alarm or have a seizure and not take my meds. This lets him know that everything is ok.

The day after a seizure he know's that I'm usually going to be sleeping all day long, I always do this after having a seizure. He'll give me a call during the day when he gets a chance to check in on me. He might do this just in general too sometimes. He'll call when he's on his break sometimes just to talk for a minute or two but I know he's calling to make sure everything ok with me.

I have family that lives next door so he know's if something happens then I can call them and they'll come right over to be with me.

We make sure that if I go out with someone who's never been around me when I've had a seizure that they know what to do if I have one. Either call him or if it's too bad for them to handle then call 911 first then call him. Luckily this has never happened.

You have to let him do his own thing and not hover over him like a dog waiting for a treat. When my husband and I go shopping he does this. He won't let me out of his sight when we are in a store. I can't even run over to another asile in a grocery store to grab something, I have to wait for him to be there to go with me. If he knew that when I go with my family I get my own buggy and do my shopping alone then meet up with them at the check out line.

Does he have a medic alert bracelet? This could help you out alot, and him. This way if he were to have a seizure then people would know.

My husband had cancer a few years ago. All I could do was be there for him and that's all you can do for your husband. You can't cure him, you just need to be there with help when he needs it and give him support.

[Suzanne H]

Thanks, everyone, for your great advice. It's so hard not to hover. Seeing him in a seizure twice really affected me. He just looks so helpless - completely vulnerable as his body seizes. I know he doesn't know what's going on - but to me it was just so upsetting to watch. Especially when he was making these loud breathing efforts as his body got back under control. He's had a history of medical issues - heart, cancer and now seizures. It breaks my heart to see him have to cope with all this. And yes, I do hover, although I'm trying not to.

He hasn't lost his license yet as they're waiting for more info from his doctor. He had one nocturnal seizure in Feb. and one four months later but now his meds are in the proper range so I'm hoping that will control the seizures.

It's a tough line to navigate. My husband wants to be independent and stand on his two feet but I love him and want to help him all I can.

Thanks for listening.

Sue

[Nakamova]

The person experiencing a seizure isn't conscious of any pain or discomfort during and no memory of the event afterwards. Whereas the person observing gets to see and remember it all -- and tonic-clonic seizures can look and sound much worse than they are. The "loud breathing efforts" are actually a normal part of the post-seizure recovery process. I hope that may help dispel a tiny bit of your worry and concern. Best of health to you both.

[Suzanne H]

Thanks, Nakamova. It's good to know that my husband doesn't experience any pain and doesn't remember the experience. The first time it happened, I didn't know it was a seizure. The shaking stopped after about a minute and I couldn't wake him up so I called 911. I thought it was his heart and it was horrifying for Mike as he went to bed and woke up in a hospital. So this is all so new to us and I've seen it twice now and I feel so helpless. I want to jump in and fix it. And the possibility of him losing his license has devastated my husband who copes with other medical issues, too. His doctor said he might not lose his license or maybe just for 6 months as the seizures are nocturnal and his meds are now in the proper level.

I just found it so upsetting to witness as of course, I love him and want the best for him.

Thanks for listening.

Sue