'My husband claims that I am 'controlling' his sleep. He has epilepsy and is irresponsible.'

"I (34F) and tired of being told by husband (34M) that I am controlling his sleep. He has epilepsy and is irresponsible. Advice needed!"

We’ve been together since we were 23. We committed to the whole bf/gf thing 3 days after meeting. We’ve been married 8 years in March and have a 5 year old together. I didn’t find out about his epilepsy until we were 6 months in.

This is the MOST important part of the whole situation. His seizures are very violent. He has grand mal ones. He spends 1-2 minutes on the floor. Over the last year, it’s gotten worse. And now the last 3 seizures he’s had he completely stops breathing and his whole face turns blue.

I’m always worried he won’t breathe again or his heart will stop. Afterwards it takes 1-2 hours before he’s “normal” again. Meaning he’s incoherent and can tell what’s going on. He has no idea what happened. He even has a made up story (that he really thinks happened) of how he got to a different location, usually the bedroom on the bed.

For that 1-2 hours i’m solely responsible for him. He’s like a child. He’s spitting everywhere. (He’s got a lot of saliva and blood in his mouth he’s trying to get rid of.) He’s not coherent. So, he’s spitting on the computer, keyboard, our bed, our carpet, wherever he is. Most of the time he’s throwing up randomly after.

Even though he shouldn’t get up after having one as he cant stand or walk, he still tries and constantly falls down. So I have to make sure he doesn’t hurt himself further. He asks for water, and if I let him drink too much he just immediately pukes it all up.

After that 1-2 hours, he usually wants to sleep for 4-12+ hours, no matter what time of the day it is. Understandable, as it has a terrible impact on the body. And then he can’t go to work at all for at least 24hrs. Because his body is in so much physical pain and every muscle he has is so sore. Also, 100% understandable. For at least a few days after he’s in constant muscle pain.

To run that down:

1.) I have to drop whatever I’m doing instantly to get to him. Most of the time he’s sitting or standing. I have to make sure his head doesn’t hit anything to cause further brain injury

2.) I have to make sure he doesn’t get up, try to walk, fall, or hurt himself further

3.) I have to find a way to get him to the bed all by myself. He’s the safest there and needs to sleep it off

4.) I bring him water/anything else he needs while he’s in bed for the rest of the day

5.) He sleeps and leaves all childcare to me

6.) I call out of work for him

He normally has 2-3 a year, but can have more if he doesn’t take proper precautions. He has 2x daily meds and needs to get proper sleep. Those are his 2 biggest triggers for his seizures.

One time he got so mad that our dog ate one of his flip flops he ended up causing a seizure so anger is a trigger too. But even with perfect med use and sleep he can still have one randomly. It’s just exacerbated so much more without it.

Anyway, he never asked me to do all this. I just stepped into the role because I love him, care for him, don’t want him to cause further injury to himself, or DIE. Yes, death is a very real concern, especially lately since the last few he has started not breathing during them and turning blue. My cousin’s wife literally died 10 years ago leaving 3 small children (including a 2 week old) behind after she had an epileptic seizure.

Even without the cousin wife’s’ death, I have a LOT of PTSD from his seizures. I have nightmares about it all the time, sometimes I can’t sleep at all because of the anxiety. I get flashbacks and I freeze. I cry a lot about it and it’s the scariest thing to think about. Every time he has one I’m worried he’s going to die in my arms. This will be the time I lose him. That my child loses their father. My world crumbles.

He says that I control his sleep a lot. And that I’m very bossy about it. Which I think is true, but I think most of it comes out of love and being scared for his life. I don’t want to tell him that he needs to sleep. I just wish he would take care of himself. I’ll give you an example of what’s happening today.

My husband works night shift. Gets off at 6am usually. He usually keeps the same sleeping pattern off work. Today, he stayed awake till 7 am. He woke up at 11 am. That’s only 4 hours of sleep. That is 100% seizure territory. He needs ideally 8+ hours not to worry, but bare minimum 6 hours. I tried to talk to him, telling him I really think he should take a couple hour nap, so he doesn’t seize.

He got annoyed with me, sighing heavily, rolling his eyes, saying he’s a grown adult and that he can do what he wants. I asked him to reconsider, as I was really worried about him and he said he’s a grown adult and I was trying to control him into doing what I wanted him to do.

This is a fight we have ALL the time. Lately, the last few weeks it’s been happening more. I see it as him being really irresponsible with his life. Taking a chance at death and strapping me as a widow with a small child. All because what? He doesn’t want to? Because he wants to play video games?

I got upset and said fine don’t expect me to come this time if he has a seizure. And not to forget the puke bucket, because he likes to spit and throw up all over his computer after. He said fine.

Then I remembered he FORGOT his medication this morning. He should’ve taken it at 11 am. So he’s currently running on 4 hours and no medication which makes it the worst combination. So I brought it to him.

I know he didn’t put me into this role. I put myself into it. He says to stop controlling him and trying to make him sleep when he doesn’t want to. But I’m the one who faces all the consequences!!! I have to clean up the mess, take care of him, take care of our kid, deal with PTSD, and possibly his death.

If he did die or become brain dead, it’s not a problem for him anymore. He wouldn’t even know what’s going on. All that would be left to me. I would possibly be taking care of a person in a vegetative state for the rest of my life. Am I absolutely crazy?

I want to find the way ahead. I don’t want to leave him. I don’t want him to seize or die. I don’t want him to think I’m so controlling about this all the time. I want to find some sort of middle ground. How do I keep this relationship together and also not have him telling me how controlling I am about his sleep all the time? I love this man, but he drives me crazy.

Tl;dr: husband has epilepsy and doesn’t sleep properly. Gets mad when I tell him he needs to sleep or nap. Keeps calling me controlling. I want him to NOT die. How do we fix this so we are both happy?

EDIT: I just want to thank everyone for your thoughtful replies. I am definitely reading them and rereading them throughly. I might show him this later… but it would probably make him really mad that I posted about him.

This is what people had to say to OP:

MuppetManiac said:

Have you ever recorded him during/after his seizures to show him what it’s like?

This man has a death wish and absolutely no respect for you.

OMGitsKatV said:

Is there any way he can get off the night shift? I know when I was on night shift it was really difficult to sleep during the day, especially after I turned 30. While it doesn’t address the deeper problem of him not caring for his health it could help eliminate one of the big triggers.

InevitableLopsided64 said:

He didn't ask you to do this, but, realistically, what would he do without you? He would probably die. Is he in therapy? Are you?

OP responded:

It’s a long wait for therapy. But I think his appointment will finally be at the end of February. I used to be in therapy, but then we moved and I never got another one.

DragonBorn76 said:

Girl this is so much. It's difficult being the care giver especially to someone who doesn't appreciate it. Maybe show him what you wrote here? My only other suggestion is therapy for you both.

Also a suggestion. Maybe a few reminders which he can setup on his phone for things like medication at least so you aren't having to do so?

SinsOfKnowing said:

Your husband needs to see a neurologist and get his medication sorted. Night shifts are also generally not recommended for people with epilepsy because of the impact on brain functioning and sleep. You can’t force him to the doctor, but you can set boundaries for what you are willing to tolerate and put your child through.

And OP responded:

He chooses night shift. He doesn’t like working day shift because management is up his ass if he does work day shift. They leave night shift alone. So he doesn’t have someone micromanaging his work. We’ve had a lot of fights over the years of him switching to day shift after we had our child.

He was day shift for 3 years, but they laid him off when they did a merger. He was adamant about being night shift when he found his new job last year. I don’t like it, but like I said he doesn’t want to be controlled.

He does go to the neurologist. He’s been asking to up his meds and they said his dosage is fine. It’s his lack of follow through at consistently taking his meds and sleeping. We can see the direct correlation. Because we’ve been able to link every single one of his seizures to lack of meds that day or lack of sleep or both.

The medication forgetting isn’t on purpose. He just genuinely forgets. He has a really bad memory in general. He attributes it to the seizures saying it’s having a long term impact on his brain. Which I believe.