Stay at home care

[ShakyJ31]

Hi everyone- My seizures are pretty much uncontrolled. They appeared out of nowhere as some sort of sick 40th birthday surprise and have only gotten worse over the last six years. There are no visible lesions where they start from. I've tried just about every med and I've only gone 3 months during the last six years without some kind of activity.

So here is my conundrum- My wife works out of town a lot. We have some friends who come and stay with us to help with our 5 and 4 year olds when she's gone. Sometimes we're even lucky enough to have the grandmother available to come and keep the kids with her. I know it is what it is but I find it fairly humiliating that I can't be trusted to take care of my own kids overnight, or even during the day really.

Now my wife says she is so exhausted from waking up at my every nighttime movement or noise, and then staying up on my really active nights, that she wants to hire full time care. This person would be able to not only get the kids to school and back etc. on my wife's travel days, but also be there on a daily basis to help my wife get me to the hospital when I'm in the middle of one of my big seizures.

Is needing 24 hour care common? Right now I'm saying "No way!". Besides the fact that we're not wealthy enough to afford this, I'm not an invalid. Yes it totally sucks that I can have a seizure any moment but I'm not having another human attached to me 24/7 just because my wife is too nervous.

Any thoughts? Thanks - Jason

 

[Nakamova]

Hey Jason --

First off, welcome to CWE!

Second off, are you and your neuro exploring other treatment options such as the VNS or surgery?

Now, to the meat of your post:

I find it fairly humiliating that I can't be trusted to take care of my own kids overnight, or even during the day really.

I know it's hard, but please don't feel humiliated. It's just part and parcel of the illness. It would be no different if you had a broken leg, or a serious heart condition -- or were a single parent, for that matter. Four and five year-olds require a certain level of care and attention, and you and your wife need a certain amount if sleep. It's not a matter of trust, it's a matter of practicality.

24-hour care is extreme, but it does sound like something needs to change. How about looking into an occasional car service for transportation requirements, and perhaps a part-time aide for nights? Any arrangement could be on a short-term or trial basis, to get a sense of how well it is working (and how much it costs). I recommend that you check in with social service agencies in your area to find out if there are any resources available to help with your situation.

 

[Porkette]

Hi Jason,

Welcome to the forum! Just like you I've had as many as 300 seizures in a yr. but I don't let it stop me. I've tried over 10 different meds and I later found out I was drug resistant and that's when I started using medical marijuana and to my surprise the medical marijuana reduced my seizures a lot. This is something that you may want to look into if you are interested check out healthyhempoil.com.
My Epileptologist didn't find any problems other than scar tissue that was triggering my seizures but when I had brain surgery to reduce my seizures my surgeon found damage so deep in my brain that not a single test showed it and this could be what's going on with you.
I have never been able to drive in my life (55 now) and my husband takes me back and forth to work where I work in a public school with jr high students and I teach the kids all about my seizures so they aren't afraid.
Everyone has their own personal opinion but I like being independent and not have someone watch over me. Share with you wife how Edgar Allen Poe, retired football player Alan Faneca and Elton John all have or had epilepsy and they never let it stop them. I personally think the big problem is that people often kept quiet about epilepsy and this made it so others didn't know that much about it.
You may want to have a sleep study done to see if you are having seizure in your sleep I had one done along with an e.e.g. and e.k.g. and my Dr. found I was having seizures in my sleep 1-2 hrs. before I woke up but once I went on vimpat those seizures ended but I still have absence and complex partial seizures. I wish you and your family only the best and May God Bless All of You!

Sue

 

[valeriedl]

I know it's hard, but please don't feel humiliated. It's just part and parcel of the illness. It would be no different if you had a broken leg, or a serious heart condition -- or were a single parent, for that matter. Four and five year-olds require a certain level of care and attention, and you and your wife need a certain amount if sleep. It's not a matter of trust, it's a matter of practicality.

This is soooo right!!!!! When I started having seizures I was treated like a new born baby!

When I was first diagnosed with epilepsy 14 years ago, when I 27, I was having seizures almost daily. They were mostly all complex partials, I'd just sit and stare until the seizure was over. I had to move back home because of it and don't remember how long it was before my parents started leaving me home alone, or even out of their sight.

If I took a shower or went to the bathroom my mom would sit outside of the door. I think she sleep outside of my bedroom on the floor at night. If we went shopping I had to hold onto the buggy, they probably would have put me in the child seat if I would have fit! If they heard any type of noise they'd come running instead of just yelling to make sure I was ok. If they went away and not take me with them I'd have to stay at my grandparents, who lived next door, house. It took a few years before they realized that I was going to have seizures, learned more about it and there was nothing they could do about it if I had one so they finally left me alone.

When I have seizures now sometimes I'll walk around and do things. At times and I've had them at night while I'm sleeping. I might wake up on the couch instead of in bed or have changed from my pjs into daytime clothes.

What type of seizures do you have, how often do you have them and what do you do during them?

When I married my husband I was still having a good bit of seizures. Shortly after we moved in together we had to start sleeping in different rooms, sleeping in bed together just wasn't working for several reasons. My husband used to work during the day but he works at night now. He has me txt him when I go to bed and get up in the morning to make sure I'm ok. If I've had seizures while he's home then he'll text or call more often. If I don't answer the phone or reply to the txt then he calls someone to come check on me. By don't something like that when you're home alone might make her feel better.

Try talking over things that you shouldn't do when you're alone and that could help. When I'm home alone there are things that I don't do. At first I wouldn't go up or down the stairs or get in the shower. I'm fine doing that now and no one has a problem with it. I wouldn't cook on the stove or in the oven but I still don't do that.

Do your children understand when you're having a seizure? Tell them that they have to sit down and stop playing until you feel ok again. If it goes on for a long time or they get scared have them call 911 or whoever you'd want them to call.

I'd tried a ton of different meds when I was first diagnosed but noting was really working. I'm not able to have surgery so I got a VNS 4 years later it cut down on my seizures a ton and I'm usually able to stop one as long as I feel it coming on. I am still taking meds along with it though.