How to deal with family

[shomann]

My family is driving me crazy. They are always asking if I am okay, my husbands the worst. I know they care alot and are worried about me. But does anyone have a good site for familys to look at? It is hard for them to understand where I am coming from and I know they might never really understand. I have a hard time explaining how I feel to them because they just don't know what it is like. I have two kids and going to college to be a nurse and they just don't understand how stressful it is to live with this. I just found out in Feb after having my second grand mal. Anyways I just need some advise on what to do with my family!!

Thanks
Staci

[maureen]

Hi Staci,

Sorry, I don't have any tips other than to say - give it time. I know when I was first diagnosed my husband was always watching me, or calling out to me from the other room - what are you doing? At first he didn't like me going anywhere by myself but over time he has come to realize that I do need a certain amount of freedom. He can't always be there for me etc. It takes time for families to get comfortable, they only have your best interest at heart.

Maureen

[RobinN]

Staci, I would say this is a mighty good site for family to look at. I am a caregiver, and this has been a wealth of knowledge and support for me. I have been able to ask questions of others to learn how I can help my daughter through difficult times. Why not send them a few links to special posts that you find here.

[Bernard]

My family is driving me crazy. They are always asking if I am okay, my husbands the worst. ... It is hard for them to understand where I am coming from ... they just don't understand how stressful it is to live with this.

The constant questioning is a symptom of their own stress response IMO. You just need to tell them to back off a little bit. If you are not OK, they will know it and they can deal with it then.

I went through the same thing with my wife. She complained about my overbearing concern too.

[Birdbomb]

Grant me the serenity to accept the things I cannot change,
the courage to change the things I cannot accept,
and the wisdom to hide the bodies of those people
I had to kill today because they ticked me off.
Help me to always give 100% at work...
12% on Monday
23% on Tuesday
40% on Wednesday
20% on Thursday
5% on Fridays.
And also, help me to be careful of the toes I step on today
as they may be connected to the butt I may have to kiss tomorrow.
And help me to remember...
when I'm having a really bad day,
and it seems that people are really getting under my skin,
that it takes 42 muscles to frown
and only 4 to extend my middle finger and tell them to “BITE ME!”
Amen

[Amy]

Dear Staci,
Please refer this website to your family. I have a child with epilepsy. I used to really freak out, get very emotional, scared, start to cry etc etc. UNTIL I read this site, heard from different people what it is like getting a seizure, how do they feel, HOW MUCH OTHERS GETTING panic can affect the person having seizure etc etc.

I had my own reasons to be scared, helpless, etc because I HAD NO CLUE what my child had been going through, as he has language delay due to autism. Once I heard ALL the needed answers & moreover he can sense how I feel etc etc. now I have learned to control my feelings in front of him atleast (though I feel awful in me,when he seize).....as I no way intend to make my poor baby feel sad, apart from what he is already going through.

Hope it helps & please understand that they love you. If you have them read this website, emails like mine, hope things would change.

Best of luck & hope you all feel better.
Hugs,
Amy

[super]

Amy is spot on with her interpretation as a carer. Congratulations to you for your accurate interpretation of how you have read your own situation.
First instincts are to "love" and "protect" even unspoken communication is readily interpreted one way of the other, overbearing or non intrusive. It is a hard one.

[alivenwell]

I saw it from the 'other' 'normal' side one day. I saw a 60-some year old lady go into some really severe seizures in a hospital. She and I were roommates. I was there for a non-epilepsy related reason. I figured other roommates couldn't handle her disorder or something. Who knows?!

At first, I felt totally helpless because I was hooked up to an IV as well as a few other things that made it difficult to get out of bed to help her so that she could breathe properly. I did call nurses in when she seemed to be having a bad seizure so they could turn her on her side. One day, my Dr came in and witnessed and questioned if I knew what was wrong with her. My experience with epilepsy helped us react to get her the right doctors with the right meds. He must have had some clout.

Your family cares. They probably feel as helpless as I did during that stay. With a nursing background, you probably have a much more clear understanding of the disorder. Education is the key. Read all you can. Get your family involved in the day to day rituals you have to do and be faithful to your meds. I set alarms on a cell phone or watch to remind myself to take the meds. There are some days that are so hectic that I could easily forget meds.

Honestly, I was kind of scared to watch my roommate. It was a concern. She did ask about public transportation and I helped her find contacts at our bus company that has county-wide shuttle services. I think she was a rowdy person.

I hope this helps. I've had many people, bosses, teachers, classmates, coworkers, etc. that either over-react or under-react, or worse yet, mock it. And, I've known people who accepted it from day one- they're the ones that are hard to believe (just too good to be true!).

Your family has a great learning curve to overcome. Try your best to be patient.

[brain]

Staci

My family/relatives were like this. While
everyone except for my mother, little
sister, and my son - are now all deceased.
Only a couple of my deceased relatives
were ever acceptive of my Epilepsies.

After when I was married, my son grew
up with this, but he also has Neurological
problems of his own.

Unfortunately it took years for my mom
to realize Epilepsy. In 2006, my mom
had come to accept it, and had the
opportunity to even see the video EEG at
the Hospital multiple times when she
was there - when the epileptologist, ARNP, video EEG
Tech - showed them to her and explain-
ed it all to her and the types of seizures.

My mom only knew 2 seizures, Grand
Mal and the children's seizure - Petite
Mal - but she didn't realize there were
many others. So she learned all of this
in 2006, and she learned I had it for
ages and since birth. She began to
understand the types and what they
were and what I had.

And in addition, she learned even more
from her Sunday School class, and some
from her Red Hat Society - they have
folks in their family who have Epilepsy
or Epilepsies. So it was a gradual process.
But she also learned I was
intractable / refractory.

She is still learning more and more
about me; however on the flip-side of
the coin, my little sister on the other
hand, freaks out - even though my
son calmly explains it all to her, she
is somewhat resistant, and keeps her
distance.

The problem isn't YOU - the problem is
the other people - some are more
open and receptive than others.

[alivenwell]

Amy, I attended a seminar on Service Dogs this past weekend. One interesting lecture involved the use of service dogs for kids with autism. They think that dogs help comfort kids and help them deal with the autism. It caught my attention and I thought I'd pass it along in case you're eligible to get a well trained service dog.

[Amy]

Hi Alivenwell, THat sounds interesting to me. Thank you very much for the info. I will certainly look into that. Anything that may help my child, is worth to be done with no second thoughts.
Best,
Amy