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My Daughter Is 34 Years Old And Has Uncontrolled Epilepsy. She Requires 24/7 Monitoring And Care. My Ex And I Are 69 And 66 Respectivally.
We need to find long term care for her after we die. Can anyone point me in the right direction as to what options are available and what resources I can access? Please and thank you.
Hi @A MyEpilepsyTeam Member , You can go to www.epilepsy.com & look up your local Epilepsy Foundation for your state & it looks like you live in North Carolina & so that would be “Epilepsy Foundation North Carolina” & on their page of that website you’ll find their contact information & a calendar of their support groups. For some reason it doesn’t look like they have their own website but it has their contact information & you could contact them & ask for suggestions & see if they offer anything like what you’re looking for. On the Google website I did find an Epilepsy Alliance program offered in your state & so you could also contact them & speak to them, here’s their website: https://epilepsync.org/about/contact-us/ . Like mentioned above, asking your daughter’s doctor first might be the best place to start & see what they suggest. I’m 45 & still live at home with my Mom & stepdad. My Dad had bad grand mal seizures for years. When my Dad was living in an apartment alone, one time he had a seizure & walked down a busy roadway & that’s when we put him in nursing home. Luckily he didn’t get hurt during that particular seizure but we didn’t want to take the chance of something like that happening again. I hope y’all can find something to help know she’ll have a place in the future & know she’s safe. She’s lucky to have y’all. Good luck. Your friend in Texas, Becky
Thank you Becky! I’m on it!
@A MyEpilepsyTeam Member
I’ve had this same conversation with my parents. I have had uncontrolled epilepsy since I was a child and now I’m 43. I still have to live with my parents because I can’t drive or make money. My parents act like they have a plan.
I don’t know what you have over in New York , but in my State we have a few programs with housing and assistant care for people with handicapped or disabled people .
It's dif per person, I would suggest asking your doc and see what they say about the question here, and maybe get referrals for other resources and go online and see what they have to offer, but get you can from here other people here and go from there, my opinion ,
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