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How to help a loved one cope
Tue, 02/08/2011 - 16:40Topic: Family & Friends
I have been trying to help my brother since our mother's death. John has had epilepsy since he was 6 years old and is now in his 50's. I live two hours away and want to try to help John cope. He has a vagus nerve stimulator and is on medication, but that does not stop him from been hospitalized at least once a year and from visiting the ER several times a year. He rejects most of my suggestions. He lives alone and does not drive. So, what does one do to help someone who does not want help and does not want strangers to know about his life either? Would welcome some constructive advice.
Thanks,
Karo
Comments
Re: How to help a loved one cope
Submitted by Karen Hembree on Tue, 2011-02-08 - 18:26
The VNS was a big help in keeping his seizures from coming on one after another. In the beginning I also noticed him being more upbeat and positive. The VNS is definitely one of the things that has helped him consistently with his seizures. He might forget to take his medicine, but it takes a lot of doing to turn the VNS off. The helmet is a great idea, but he would be extemely resistant to the idea. I do think his decision making abilities are effected by the meds and his seizure frequency. But, thank you so much for the suggestion and your kindness in responding.
Re: How to help a loved one cope
Submitted by GodivaGirl on Sun, 2011-02-13 - 16:54
Hi There,
I'm 36 and moved home with my mom & dad awhile ago as I go through neurosugery myself, but there will come a day when I move out - not 2 hours away, but away. It's a bit of a different situation, because there is a boyfriend in my life as well. Although I'm not sure if I'll move from my parents right in with him, I have a great support network. At times though, ask anyone in my support network (parents, boyfriend & others) I'm stubborn to give in to what they want to help me medically, because I don't want to feel different. It is not easy to come to terms with the fact that people want to help you by treating you different than who you want to be. In some ways, as I get closer to my surgery date I'm going through some of that right now. My work sets higher targets for my job & I'm saying to them - what if I can't do this in 2-6 months (that's when it's expected I'll have right temporal surgery). They are good about things and say, then we will figure things out. No matter what, I know I have my parents and a great guy to back me up. At the same time, those people think my cell phone isn't going to be enough in the near future & not only should I have that, I need a more obvious medical alert bracelet (I have one), but they think I should subscribe to lifeline where one button and contacts are called. That could be something to look into for peace of mind - pay for it. My dad & I have at least agreed that while I still live at home my cell is enough, but if I'm not totally controlled when I move out I'll consider it if him and my mom pay for year one.
It's about a balance - try to suggest an idea that lets him keep a fairly "normal" life. I can't drive, but there's no reason I can't take the bus alone.
Sure, that lifeline (www.lifeline.com - I think) idea might be an idea, but I think there's a keychain version so it doesn't really, really stand out.
Doctors want seizure journals from me, I use the iPod version from this site, because my iPod goes with me all over the place.
Sorta Make Sense?
GG
Re: How to help a loved one cope
Submitted by Summerland on Tue, 2011-02-08 - 18:03
Well one thing I suggest is you talk him into purchasing and wearing a helmet. We found one at especial needs and it brings peace of mind that at least if there is a fall there is some protection. Can I ask if you found the VNS to help at all? If so in what way did it help.