Relationship to Loved One: Husband
Loved One with Epilepsy: Sheila
Relationship to Caregiver: Wife
What is the official diagnosis of your loved one?
Intractable Generalized Epilepsy.
What is your definition of epilepsy?
Definition: is a person who has more than one seizure to be able to be diagnosed and there are many different types of epilepsy syndromes.
When was your loved one diagnosed with epilepsy?
Diagnosed when she was 12.
How did it change your life?
When we got married it changed my life because I need to listen for her in the shower. She can’t drive, so I drive her everywhere, make sure she is safe when she is cooking. I have to take her to the bathroom sometimes when she is starting to have small seizures, so what I do is walk in front of her and she holds on to my back in case she jerks forward and lands on the floor. So when I am in front of her, and she holds onto my shoulders, if she jerks she falls forward on my back, so she is safe. It’s changed my life because I have to drive everywhere since she can’t. I worry about if she will hurt herself if I have to go to the store or go somewhere without her. If I do, I call her when I am gone with my cell phone to check on her. I sort of feel like I have turned into a nurse sometimes, because when she starts having seizures that don’t stop, I have to give her the rescue medication. She is a strong person, but I feel like I have to be stronger for her. I get phone calls sometimes when she has a seizure when I am at work, so I have to leave work to take care of her. Sometimes I worry that I will get fired because I have to leave work a lot to get her to the hospital or come home after she has a seizure until she feels a little better for me to go back to work. And I have to take a lot of days off work to take her to her doctor appointments, and sometimes worry I’ll get in trouble for taking so much time off for her appointments, but my job is pretty good about it.
What was your initial response of his/her first seizure?
My initial response was I was really nervous. I knew what to do (turn her on her side, etc.), but I never had seen one before, so I was scared she would hurt herself really bad with the grand mal, and I wasn’t sure I was doing everything right when she had it. I was, but just really nervous, so I called her son, and he came over and said I did everything fine and he helped me. He’s been doing it since he was little. I wasn’t quite sure how to move the magnet over her chest (she has a vns). I did it, but wasn’t sure if I got it over the right area. That was with the grand mals. The drop seizures scared me to death because I couldn’t get to her and she had a feeling she would have a grand mal (aura), but the drop seizures, she had no idea when they would happen, so it scared me to death, always on guard for it, worried and trying to make sure by taking the head boards off the mattress so she wouldn’t fall and hit her head on the headboard (she did that before).
What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
Well, some of the biggest challenges are trying to keep everything safe and make sure I’m there for her, getting up in the middle of the night with her to help her to the bathroom (she fell down the stairs once in the middle of the night going to the bathroom). And once in the middle of the night, she was in the bathroom and fell face forward and hit her face on the wall and almost broke her nose (she has them a lot upon awakening). When she had her youngest son, the seizures were bad afterwards, and she was in ICU. And her son was in another hospital because he had a cleft lip from the Depakote, so that was hard traveling back and forth to two cities to see her, and then another one to see my son in the other hospital while I still had to work. Her son got out of the hospital before she did, so I was taking care of him and his brother by myself while working. My mom and her mom helped when I was at work. And also, all the times she was toxic from meds scared me. And rushing her to the doctors and ending up in the ER was a challenge for her. But, for me, it was too because I had to organize a plan on who would watch the kids, call off work, and hope they wouldn’t get mad at me, also financially, since she is disabled. It’s hard on one income paying all the bills, along with the medical bills.
What are some of the DAILY challenges you face?
Pretty much what I said above, keeping an eye out on her to make sure she doesn’t injure herself when she has one, trying to be patient with her, because when she tries to say something sometimes, she can’t get the right words out in a sentence. She knows what to say, but can’t find the word, and make sure she knows that she isn’t stupid because of it. Her memory isn’t as good anymore, so I have to be patient with her until she remembers what she is going to say.
What are some false thoughts about people with epilepsy?
False thoughts: I have never had any, but other people have, like thinking she can’t do anything at all when she can do a lot of things. She just has to make sure it’s safe, like swimming. She can swim as long as someone is with her, but some people don’t think she should do anything but stay at home. So I have had to tell them that people with epilepsy are normal. They just have to be careful. Someone once told me that she could be being punished from God by him causing her to be sick and asked me if I knew if there was something she did (sinned) that would make God punish her. Of course I told him it was bull shit (excuse my language).
What is your biggest fear for your loved one?
I don’t tell her this because I don’t want her to worry, but my biggest fear is that she will fall and hurt herself so bad that she could die. She has had some horrible injuries and was lucky she didn’t die one time, when she had a seizure and hit her face on the register, on the floor. And luckily, her son came home from school in time and found her. She had blood all over her body and couldn’t eat for two weeks, except out of a straw, because her mouth swelled up and she had to wear special bandages on her legs, because they were all black and blue. And the doctor wanted to make sure she didn’t get a blood clot from her legs that would travel somewhere else in her body, so she had to wear ace bandages around both of them for awhile just for support around the blood vessels. Sometimes I wonder if she will wake up, if she has a bad one in her sleep. She isn’t a candidate for brain surgery. She has a VNS, but it doesn’t help her much. She has Generalized Epilepsy.
Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?
She had a VNS put in. That’s the only surgery. It didn’t really help her.
Has medication ever controlled the seizure(s) of your loved one – i.e. sometimes medication stops them; sometimes it doesn’t work at all; sometimes it creates a different kind of seizure.
Her medication does not control her, except the Depakote has helped lessen the grand mals. The other ones (atonic, myoclonic) seizures aren’t controlled. She is on Felbatol. It helps a little, better than the others.
Have you seen/heard/personally witnessed any new form(s) of seizure meds? If so, what are they? Do you consent if your loved one is willing to try one or more of these meds?
She just went on the Felbatol a few years ago. She had to sign a special release form to take it, because it can cause aplastic anemia, and she has done some drug trials. I don’t have a problem with her doing it.
What are some of the positive changes that have affected your life due to epilepsy, if any?
The positive thing is that I have become a more responsible and stronger person by watching how strong she is. She doesn’t let things get her down, which is always positive.
Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
Never give up hope for your loved one, always be there for them, no matter how strong they are or seem to be. They need emotional support, even if they don’t ask for it and treat them as your equal.
What’s one word you want the general public to think of when they hear the word “epilepsy?”
I just want the public to know how to do the emergency responses for seizures, for all kinds of seizures; and I think they should teach them in schools; and that it is not a curse, or the person is not a witch, ect. because they have it.
Is there anything else you want the general public to know about epilepsy?