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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 seeker2 on Fri, 2004-05-28 - 16:13
Rhea1965Thank You for replying to me.I'm sorry that you mistook me for the young man who posted as he did in seeking help for his family.I hope he does graduate early and without having to worry to do so.I certainly agree with you, and all you say,she may be worrying as he is at the change in circumstances and hoping that he does not feel she is a burden to him,or seem to be.For though the burden can indeed be heavy on the one who has stepped into the role of prime care giver,especially in some cases of an older relative and a close younger one,he reads as a young man willing to accept that role and hat's off indeed to him for being willing to do as he is wanting to do in caring for the welfare of his family,and be prepared to listen to the advice he requests.That he is seeking information and advice is a positive thing to see upon here and that he doesn't see his family as a problem and wants them to be included into the solution,even if feels he will be met with rebuffal whilst doing so is heartening to read.He needs to talk to someone to ensure that her needs are being met and the families needs as a whole.My thought was he could go with her to the doc or neuro and discuss this with them,as you yourself have pointed out,and then the family and come to a decision between them concerning all their welfare and what to do so that no one is going to suffer.I read with interest about homeschool and a website?Would you be willing to drop me a line or post the link on here.I have a friend who would be very interested in passing that link on.My mail address is mail4j4@yahoo.com
RE: parents with epilepsy?
Submitted by Rhea1965 on Wed, 2004-05-26 - 09:55
No scoffing at all here!! We are all here for you and to Congratulate you that you will be Graduating early!! Hat's off to you!! Sometimes when we grow up and feel we have to take the place of the older children when they go off to College,the burden can be quite a heavy tow to continue,especially with dad working,and no one left but you and your younger brother who needs care too.Have you talked to your mom to find out what the Dr. says, maybe she needs a different medicine, may be she's not getting enough rest. But maybe you could talk to the older brothers or sisters,or other family members for help. also have you checked out any new homeschool websites,they can offer a multitude of information. i,e.homeschool supportgroups in your area. We homeschool also and any time you need to talk to a friend just let me know and I'll give you our web address. Take Care.