Sure.

Her seizures having nothing to do with you, so quit worring about all this
stuff.

There must be some kind of education program, perhaps through a local epilepsy
foundation, to teach family members what to do, and what is going on before,
during, and after a seizure.  There are also some safety issues that you need to
recognize.  Other than that, there really isn't anything more you can do.

My husband is getting better dealing with this (I'm the one with epilepsy,
complex partials).  I think he is understanding more that when I say I do not
remember things, I don't remember things.  In fact, the other night we were
talking about things from years ago, and they just don't exist in my memory.  I
think it was really the first time he really understood.

I think you need to ask your wife what she wants or what she needs.

Barb

Howdy Toyman!

"Epilepsy support" means supporting people with epilepsy, their family
members, friends and anybody else who has concerns or is looking for
information.

It is much easier for her to deal with her epilepsy because she doesn't have
to deal with her seizures. She doesn't have to stand by and watch knowing
that there is nothing that she can do about it.

IMO "protecting her" means taking reasonable precautions.

e.g.; Remove anything with sharp corners, try to get her away from any hot
objects, get her away from any open machinery, get her out of the street,
getting her off of the stairs, if she is standing on something try to get
her to ground level.

Protecting her means MINIMIZING her chances of getting hurt during a
seizure.

If you are going to take your concern with her safety to the umpteenth order
you would end up locking her up in a padded room 24 hours a day!

You've come to the right place for support and the purpose of the newsgroup is
to help support anyone who has been effected by an epilepsy situation.  That
includes not only the person who has actually epilepsy, but the spouses,
parents, children, other relatives & friends who support that person and deal
with the situation. You will see quite a few posts here from people who are in a
similar situation to yours.

You're doing your best and that's all that you should expect from yourself.
Others have pointed you to advice on what to do and what not to do when she has
a seizure. It's a process of education.

You're not being unrealistic at all. This situation takes its toll on evrybody
and you need support yourself in order to deal with it.

Feel free to post here for support and, if you live near a major metropolitan
area, there may be support groups with regular meetings that you could attend.

Hang in there!

Bob

Toyman
    you sound exactly like my wonderful husband. it sounds like you are
keeping your part of the promise as much as humanly possible. we
epileptics sometimes are so involved in our condition that we don't
acknowledge the helpless feelings of our spouses and families. my
husband and i are lucky to have a large family and great friends as
support. it's funny, all these years, i'm 49, i've been everyone's rock
of support. they all seem to enjoy being able to return the favor. your
feelings are normal and expected. just be there for her. try to keep her
routine as normal as possible. i know it's hard but do not let your
lives revolve around her condition. i was diagnosed 2 months ago after a
year of testing. i'm going that gambit of trial and error meds. it's a
roller coaster ride and not pleasant. try to make special times to enjoy
things together and don't talk about her condition. escape it as often
as you can.
         so far it's working for us.
                       Jacki

Toyman,

I'm not a spouse of someone with Epilepsy...I'm a Dad.  I have experienced
much of what you describe.  The first one was the scariest and then the
education and learning starts.  All we can do is to do our best to support
and encourage where needed.  This is, sadly, one of those conditions where
you cannot transplant or replace the affected area of the body.  In many
cases, you could throw billions at it and still gain no ground.  It is
largely trial and error based on the Doctors previous experience with
similar situations. Because memory is frequently nailed with seizure
activity and, sometimes, the meds, that is one area where I am frequently
supporting my son.

The best thing we can do is to be there.  I know that my son was completely
freaked out the one time I was not present when he was recovering...even
though his Mom and Sister was there.  I'm kind of his security blanket....so
that is something that I do my best to accomplish...Be there so his stress
is less.  Fortunately, his Tonic Clonic frequency has dropped
dramatically...now if only we could find a med combo that nails the absence
seizures as well!  Stay strong and stay the course...you're doing fine!

May God Bless and keep you.

Jedi and Son

I think your being a bit to hard on yourself. It's gonna take a while before
your both are comfortable with the situation.
If you have kids, think back to the first time you meet your kid after birth
and you suddenly realise you've got to look after that little being.  You
think you can't do it but over time you get use to the routine and the
stress goes away (well sometimes until they become teenagers!)
Hang in there. your love will do more good than anything else.

Martin

Thanks to all for your responses.  It has to do with 'safety in numbers'.
When she has a 'blowout', I usually don't sleep for about 36 hours, so I was
feeling pretty 'beat up' when I posted the original message.  In any event,
life goes on.  It's good to have a place like this to share your lost
composure and know you won't be laughed at or otherwise ridiculed.  Her hope
is to be able to drive again.  My hope is for her to do anything she wants,
whenever she wants, without the fear of seizures getting in her way.  If
that doesn't happen, then I'll settle for being with her until . . . . . . .
. .

Appreciations to all for your kind thoughts.  I'll try to be more upbeat
(like 'Howdy Dave') in the future.

The Toyman
____________________________________________

BlankSince this is a support group for those with epilepsy, I thought I
would ask if it's OK for me to make a comment or ask a question once in a
while.

My wife, The Toygirl, age 53, was diagnosed about 18 months ago, and is
going through the 'musical chairs' part of trying to find a med that
controls her seizures.  I've been with her at every tonic-clonic she's had
(about 8 of them), and all but two of the many simple partials she's
experienced, including the ones that turned into secondary generalized
seizures.  She's becoming better at dealing with them (afterwards) than I.
On a logical level, I understand there's not much I can do to prevent the
seizures, other than keep stress out of her life as much as possible.  On an
emotional level, I feel like I've failed to do something to protect her from
the damn things.  We signed a contract 13 years ago, in front of witnesses,
where I promised to keep her from harm, and I'm not living up to my
responsibilities.

I realize it's tough for anyone to watch someone they love experience this.
I'm better able to handle it since watching medical staff tend to her during
a tonic-clonic she had while having a video/EEG. But I still hate it.  I'm
composed and responsive while she's seizing, but later (alone) I come
unglued.

Are there other spouses, or significant others, who are better able to deal
with it?  Am I simply being emotionally unrealistic?

The Toyman