Caregiver: Jon
Relationship to Loved One: Husband

Loved One with Epilepsy: Laura
Relationship to Caregiver: Wife

What is the official diagnosis of your loved one?
Generalized Epilepsy manifesting as Tonic Clonic seizures.

What is your definition of epilepsy?
A condition whereby the brains electrical connections go completely haywire and everything starts firing at once.

When was your loved one diagnosed with epilepsy?
Thought to have possibly been acquired with a horse kick to the face at the age of 3, she experienced juvenile absences until symptoms disappeared at puberty. First tonic clonic post partum at age 18.

How did it change your life?
Wow. Where to begin.

I met Laura at age 30. Didn’t give much thought to epilepsy other than I didn’t care that she had it. Since then we have been together nearly 10 years, and successfully had 2 children together.

Following the experience of child birth and its impact on someone with epilepsy, I must say I had no idea what we were doing. At no point did any practitioner explain ANY management strategies and offer any support before or after. This would possibly have helped my psychological responses that then formed around epilepsy. But I went in blind and found out the hard way.

I find that sadly I cannot enjoy parties any more. And more unfortunately this has affected how Laura enjoys things she used to love doing too. I pretty much never overindulge in alcohol anymore – leaving me with a reputation of being boring.

But the real undercurrent to that is my own internal debate: “If Laura has a seizure in the morning I need to be on my ‘a – game’ to care for her, to shield the kids from the experience as best I can, and the last thing you want is to be doing that still intoxicated or hung over at the least”.

Therefore most things get weighed up in my mind as either an acceptable risk, or an unacceptable one. In every case, the sensible choice is taken, and I look like the killjoy. But I am doing it out of love and care for my family, not to be the controller.

Another way it changed my/our lives was that we decided after our second child together to make Sam our last child. I had a vasectomy 12 months after he was born. All things being equal, I believe we both would have liked another child, me especially. Children are the reason I walk this earth. Fatherhood is my calling. So not having more children is a big impact on my life.

What was your initial response of his/her first seizure?
My first experience was when Laura and I were in Las Vegas together in 2007. We were within the first 12 months of our relationship, and as I mentioned before, was blissfully ignorant to the full extent of epilepsy.

Really late night (3am?) with lots of drinks, got up at 8 to exit the hotel and drive to a new city, noticed she was vague and not herself. Was in bathroom checking for anything we’d left behind, and heard the tell tale groan of a tonic clonic commencing and ran in to discover the next chapter of my life beginning.

Initial response was “What the F?? What’s happening??” I think it was a full minute until it dawned on me that “Oh right, you have epilepsy”. I did my best, that’s all I can say. But it scared the living hell out of me.

What have been some of the BIGGEST challenges you face as a parent/husband/wife/etc.?
As a parent, I fear for my children’s physical safety in the event that Laura has a seizure in an unexpected circumstance. See ‘Daily Challenges’ for elaboration on the fear. When my first child was born, before I really understood the impact nursing has on someone with epilepsy, we took little if any measures to cope with the effects of sleep deprivation. As a result, those first 6 – 9 months were ruled by fear. I will have the effects of this on my for life. With some medical assistance/advice in advance, so much might have been different.

When Sam was born 2 years later, I was ‘smarter’. I became the night nurse for him. I took on that role so that Laura could sleep at night and at least had a fighting chance of being fit and healthy the next day to take on the day nurse role. I spent the next 10 months in the lounge room with Sam, feeding and changing him from 9pm – 7am when I left for work, often with little sleep, occasionally zero sleep. I then went and worked a 10 hour day as a construction project manager dead on my feet. Repeat… repeat… repeat for 15 months until he finally slept through the night.

As a husband, due to the traumatic introduction to epilepsy after childbirth, I have become as much a Caregiver as a husband to Laura. I have drifted into nearly a parental role, which I hate, but can’t let away from.

Because of Laura’s personality, she loves expression artistically, and loves to party and drink, but I have become the one to say “Should you have any more to drink?” This is then met with derision and venom that I should even insinuate that she might have had enough. All I think about is how long ’till I can go home to bed.

I create strategies to AVOID alcohol altogether.

If a bottle of wine is opened at home (which is quite regularly), I try to drink more of it than she does, simply so it will reduce that ‘tomorrow morning’ scenario that has become a feature of my life. The “I wonder if she’ll be ok today?” uncertainty. I don’t deny her right to drink alcohol. I just equate its regular indulgence with a risk of seizures the next day. Therefore I try to fight its use. I’m unsure if Laura realizes I do this.

What are some of the DAILY challenges you face?
Fear of the mornings, particularly fear after a night out, or a few drinks, or on the rarity I am not in the same city as she is. I never really know if she’s ok until I get an SMS to say good morning. In one way we are lucky in that she only ever has seizures upon rising in the morning. If I get that message, then I know she has woken successfully and the day will be a normal one. If it gets to mid morning and I see no FB activity from her, no SMS, no phone call, nothing – then I PANIC!! If she doesn’t answer when I repeatedly ring the home phone and her mobile, I become inconsolable and dread begins to rise.

I fear far more than is rationally explicable. On balance, Laura will be fine 99.9% of the time. But this builds up mentally to one day at a time, with each day to be taken as a new test – Will she be ok today?

Will the kids be ok?

I work nearly 2 hours drive away from home if I had to get back to care in a hurry. I try to put this fear in context, but 2 hours is a long drive should anything serious happen.

What are some false thoughts about people with epilepsy?
Unsure of exact nature of the question – what are the general public’s perception of people with epilepsy? I guess they revert to the cliché of falling over in convulsions on the ground, frothing at the mouth? Public education isn’t what it could be. It’s a bit hard for me to say, since I’ve been on the inside of it for 10 years. My perception of the public opinion might be a tad distorted.

What is your biggest fear for your loved one?
I fear for her physical safety, that one day a perfect set of circumstances will allow the unthinkable to happen.

Has your loved one had any seizure-related surgery? If so, what was it? Did it help? How did/does this affect you?

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.
Generally meds control it 100%. Seizures mostly only reappear due to other factors – usually alcohol and late nights. Laura is lucky – she successfully uses two different meds independent of each other. Epilim works well, but she hates the side effects. Lamotrigine also works, but she prefers this devil over the other. We weaned from Epilim due to birth defect risk, to great success.

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?
I have heard about medical marijuana. I am willing to try if it will work. I am not overly excited with permission for people with epilepsy to carte blanche smoking pot. The two are fairly different in my mind.

What are some of the positive changes that have affected your life due to epilepsy, if any?
The bond I have with my son as his night Caregiver for the first 15 months is indescribable. I am truly grateful to have been able to experience this, and to also gain empathy for nursing mothers going through nursing an infant. I really can compare notes with them!

Do you have any encouraging words/hope for people recently diagnosed with epilepsy and/or their loved ones?
I sincerely empathize with the fear that they might face, but urge them to educate themselves, seek help emotionally and practically, and reach out to others in a similar scenario (such as the one where I saw your post on FB). Fear will fade with education (something that I am yet to come to grips with). It will only rule you if you let it. You can’t do it alone, use your network.

What’s one word you want the general public to think of when they hear the word “epilepsy?”

Is there anything else you want the general public to know about epilepsy?
I’d like them to know how common it is. I’d also like (them to know) the condition doesn’t simply affect the one person; it’s the whole tribe around the person.

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