Monday, July 21, 2014


Alright, I suppose I have to start with two days ago...
I leave for work at 12:30 and everything was fine.  I called Chris around 5:00 and all was good, he told me about his day, we chatted a bit.  And than comes 7:30....  I get a message from him asking "Are you my Jess?"  And sadly, I know exactly what's going on.  I called him to fill in some of the void the seizure left behind.  Aside from having an idea of who I am, he knew nothing and was terrified.  As it turns out he was unable to talk at that point, so clearly the seizure was shortly before.  I called him again on my way home so as not to scare the hell out of him when I opened the front door.  Well, he lets me know he's in his "hidey hole".  His "hidey hole" happens to be my closet.  Now here's the funny part about that.  All our closets are pretty small.  Mine is quite a bit larger, but it's above the stairs, so half of the floor is sloped up. So I walk in the front door, call up that I'm home, grab a few things and head up.  Of course when I opened the closet door, there he is with his laptop and blanket. It took a bit but I am finally able to get him out of the closet and onto the bed.  After hanging out, gaming together a bit, we put away the laptops.  We're in the middle of refilling our pills and I asked him something a couple times with no response.  Now at this point, as he's still working on his pills while rocking back and forth, I finally realize he's having an absence seizure.  Some of his absance seizures are different as he will be able to continue with whatever he may have been doing, can hear me and comprehend what's being said, he just can't talk or move very fast.  So this continued for a while until I was able to get him situated.  Without getting into all the details, this continued for at least a good 10 or 15 minutes.  I was long enough that I was ready to call 911, and it takes a lot for me to reach that point.  Live with all this for long enough and you know what's "normal" and what isn't.  This was not normal, it lasted far too long.  He finally came out of it and we both spent the remainder of the night attempting to calm down.
And than yesterday.
Chris wasn't "recovered" by any means, but he was doing ok.  Better than the day before anyway.  So I leave for work as usual, and around 4:30 I get a message from one of his gaming friends saying he was talking kind of weird.  I call him and not only did he forget about the prior topic, he informs me that he is having a difficult time walking.  He's also not talking clearly, seeming to have a hard time with his words.  So I ask him if he hit his head.  The answer was yes, although he has no idea of when it happened, where, or what happened.  This is the point where I know he is not ok, and absolutely should not be alone.  Within 20 minutes I was home.  He was still the same, though as soon as I said the word "hospital", he started trying to make a point that he really was ok.  I spoke with his mom and we were able to determine that it couldn't have happened more than an hour and a half prior.  So I get him on the couch and the frist thing he does is lay down, and a few minutes later. started falling asleep.  I had to stop him several times before he sat up.  We spent most of the rest of the evening gaming, with me looking over ever few minutes to be sure he was ok.
Needless to say it's been rough lately.  The heat and no central air conditioning, combined with thunderstorms combined with lowering his keepra have kept his seizure activity high.  These are the times that scare me. It seems as though it can't get any worse, and it does.  These are also the moments that remind me how much I love him. 

Monday, June 16, 2014

Playing Caregiver for a Significant Other

I don't know if anyone reading this is acting as a caregiver for a significant other.  Let me tell you, it is not easy.  In all honestly, in many ways it is not that different from taking care of a child with seizures.  I know for me, it brings out that parental instinct.  It's extremely difficult separating that from the actual relationship; the romantic, loving, adult connection.  
This is something that is simply not talked about- weather it be with your significant other or anyone else.   There are times I have to remind myself that this is my fiancee, not a child I am caring for.  I have finally started telling myself that he is an adult, he can make his own choices, even if it is things like remembering to take your pills.  I can only control so much.  Ultimately I cannot make him stop what he is doing to take his pills, or get him to actually drink water throughout the day.  I can tell him; I do and always try to help him take care of himself, especially when it comes to things like nutrition.  I want so much to be able to make him do these things, but I have to continually remind that he IS an adult, and he will make his own choices.  
I think this is the hardest part when it comes to separating the relationship from the nurturing, protective side.  How do you protect and make what you know are the right choices for an adult living with epilepsy?  You can't.  You have to remind yourself of this every single day.  
This is something people don't tell you about acting as a caregiver for an adult.  Never mind that it is hard to even find another caregiver for a significant other.  Ultimately, this is part of the reason I am doing this blog.  People need to see the other side of a disability; the real life, day to day aspects and how we make it through this life.