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parents with epilepsy?
Fri, 05/28/2004 - 16:16Topic: Family & Friends
Hey...I'm new, I was wondering if there's any kind of support group anyone knows of for kids (teens especially) who have parents with epilepsy? I haven't been able to find anything...you all with epilepsy will probably scoff at me, but I think it's harder than it sounds to live with a mother who has epilepsy. She has uncontrolled seizures, which means she can't work and can't drive, and she is tired a LOT. My brother (who is 13) and I (I'm 16) are homeschooled. She teaches my brother for about four hours a day, and that does her in (I'm basically self-taught). Her seizures have gotten a lot worse over the past few months, and I don't think my four older siblings, all of whom are in university, understand. She used to be healthy and energetic, now she's about as opposite as it gets.I feel like being the oldest one at home and really the only one who understands what's going on gives me a lot of extra responsibilities. I mean, I've always been fairly responsible, but now I have to be homeschooled in case she has a really bad seizure, I'll know what to do. I work as many hours as I can to earn an income, because my dad doesn't make that much, but I feel like noone else thinks its enough. I don't have many friends because I have to take care of my family. I make dinner every night and make sure my brother does all the assigned work. I figure out how much we owe on bills and university tuitions. The only thing I do that I want to do is play ice hockey, and even that is extremely limited because of funds. It just seems really, really unfair to me. I should be off to college next year...graduating a year early. I'm pretty smart, and can get into a good college. Everyone from church (who doesn't know much about home life) ask, "why don't you apply to McGill? Harvard?" Seriously. I could get in. But we can't afford it. And then where would my brother be? I'd like to go to a good school, somewhere out of state actually...but I'm worried about who could take care of the family. Is there a point where you have to decide what is more importent, you or your family? I don't want to be stuck in lower-middle class forever. But I'm afraid if I go to any more than a couple of night classes at the local community college, my family will say I'm too selfish. I don't know what to do anymore. I'm tired of having to act like an adult so much of the time. Maybe I shouldn't be...but I don't have many friends, I haven't been to a party in years, and my most social experience is sitting around a neurologists' office waiting for my mom. Is it wrong of me to want a little fun? To want a mom that is concious for more than 6 hours a day? Maybe I am being selfish, but I don't know anymore.As a note, I'm worried about my younger brother because he has several learning disabilities. He can barely take care of himself, let alone anyone else.Sorry this was long...but I really didn't know where to turn and I was hoping someone understands....
Comments
RE: parents with epilepsy?
Submitted by ktamos on Sun, 2004-05-23 - 20:21
I read your letter and think that you are a remarkable young man. I can't imagine the pressure you must feel. I am a parent of someone with epilepsy and many of the feelings that you describe are very normal for someone who is a caregiver. You are not being selfish- on the contrary- you seem very concerned for everyone in your family. I think it is important that you have a little time for yourself so that you can interact with other kids your age. (I am a high school teacher- so I see how important friendships are to students your age) Maybe you can talk with your father about this and your family could set some time where you can take a break from all of your responsibilities. As far as where to go to get help, I would try an Epilepsy Foundation closest to you. Many of them have family counselors on staff that could really understand what you have been going through. You might also try a Woman's Services- check your local phone book. There may be some programs that they offer that might help your mother-thus eliminating some of your responsibilities. Does your brother really want to be home schooled? I don't know what state you live in - but if he has learning disabilities there all many programs that your school district may offer him that may be beneficial. You are dealing with some very heavy issues for someone so young. Keep expressing yourself to people- don't be afraid of what they will think. Keep us posted on how you are doing! Take care!
RE: parents with epilepsy?
Submitted by seeker2 on Fri, 2004-05-28 - 16:16
No we are not going to scoff,why should we.Other boards might,not on here.The reason we are here(most of us)is not to bore others to death about our latest offering regarding seizures or what the cat did to our garden.But to offer support and help whenever we can,how we can.In the best way we can...Most of the posts prove that in their replies to you.It is hard to live with someone with epilepsy.You are finding it hard and you sound so responsible in wanting to do right by all of your family to....I have read the posts and the advice is good to join EFA community as well.They have a board for 'friends and family',and are very supportive.They relate to how carers feel and and can offer the most in really understanding what you are going through,want to do and support YOU.I feel that carers are underated,and some boards find trouble accepting them into their community .Feeling is they cannot 'relate',as it's the relative should be posting,not them.What should be noted more is that a 'community',is just that -made up of all-not part,or the part that others think should be there,or a have a right to be,and raise their voice loud regarding that.Relatives deserve a voice to.Worth bearing in mind? I think so.
RE: parents with epilepsy?
Submitted by GKT on Thu, 2004-05-20 - 09:49
The wording in your post demonstrates that you are a well-written young man. I, personally, do not know of a support group for kids with a parent who has epilepsy; however, I would suggest you contact your local Epilepsy Foundation and ask ... or try a Al-Anon/Alateen group.You are not being selfish. On the contrary, you are demonstrating your concerns for your family. You are not the "dad" and the responsibility does not lie on your shoulders. It almost sounds like your dad may be unaware of the seriousness, and that may be partly due to your handling things so well.Also, as far as future schooling is concerned, please be ever-watchful of grants that are available and you may earn your way to a university of greater stature!Please take care and get some help.