I’m actually curious. Is there a setup where people with active seizure disorders can live alone? Like maybe a setup where they won’t fall and hurt themselves if they do have a seizure?
I just assumed from the outset that the OP is stuck living with his father, as, otherwise, leaving is the obvious option.
Several people have mentioned HIPAA - but that only helps if the OP is in the US.
Clobazam is not commonly used in the US (per Wikipedia, it was only approved here a couple years ago and only for one specific condition) so he may not be here.
If you ARE in the US, then you can indeed invoke HIPAA. Do a medical directive instructing whom they can share with and whom they can ask to make decisions - you don’t want to, say, fall ill and then have your father blathering to the hospital that you’re only taking these supplements, for example.
I’ve had to do this with my stepmother, who seems to think that I take “too many” medications. She told me this while on her fourth glass of wine and 3/4 a pack of cigs into the day.
Merneith has a fabulous idea to keep dad out of the actual appointment room. Dad already hates and mistrusts the doctor, so use that to help keep dad in the waiting room and out of your medical life.
To DaveBfd a very well written OP.
You may be having memory problems, but your cognition seems to be fully intact.
Perhaps you can ask your father to wait in the waiting room because he is monopolizing the little time you have to speak with the clinician. Good Luck !
This is very wise advice.
Whether you are in the US or not, don’t let your father come to your appointments and tell your doctor and his nurse in no uncertain terms that they are not to discuss you with him.
Good luck.
For some folks with epilepsy autonomy can be a problem. If you want to learn about how people cope there are a lot of sources available. The basics are that some people can tell when seizures are going to happen, and many forms of seizures do not require any forms of assistance either during or after. I am lucky that my seizures do not directly impact my life in any way other than my ability to drive vehicles, so I am not reliant on him. I am currently living at home because I have recently graduated university and am working on determining my path. Some of the delay is caused by my self confidence and memory. I have been in talks with friends and am very seriously looking to move out shortly. The stars may have aligned, and I may be able to help a good friend out while at the same time finding a new place to live.
This has been my goal for a while, and I have attended a few visits without him knowing. The problem tends to be when he finds out about them due to circumstances out of my control (messages being left on my home phone despite me requesting them only be sent to my cell). I think I will just flat out tell him that he isn’t welcome to come to my next visit. When I first posted this thread I was willing to let him come to this appointment and cut him out if he tried to intervene, but now I think it makes more sense to not even bother giving him another chance as I know he will eventually act out during a meeting.
I think I’ve been convinced of this by all of the input here. I really don’t see a way that he will magically change his world view.
Based on how he reacts to finding out he is no longer allowed to meetings, I think this would be a good option. I somehow doubt it would work though as he has essentially cut every single person out of his life already, and doesn’t tend to forgive. We’ve been to a therapist before when my sister was dealing with him, she is no longer a part of his life in any way.
I greatly appreciate all input here, and have read all responses even if I haven’t specifically responded to them.
This isn’t really related, but are you keeping a diary of your seizures? This I’ve found is very helpful in noting what might be patterns, and triggers. Even listing down to exact times, and what might have happened that day to cause them.
Yeah, definitely. I’m using the epilepsy action app. It doesn’t have great ways to record possible triggers but I record the exact times they happen and what happens to me during, and what I was doing if it was relevant. Very handy app.
A few things about that. I’m willing to bet that Dave has singed a consent form that allows them to discuss his case with dad. Or at the very least, release information to him. We all sign this when we start seeing a new doctor (and with some doctors, resign it each year). If that’s the case, and he wants to rescind this permission, he needs to have this consent form taken off his file. He’ll have to ask them to do that and/or sign a new one that says “None” in the “Who may we release your information to?”
That still won’t stop him from calling or emailing the nurse about Dave. Even if she doesn’t give him any information, she can still listen (or read) what he has to say about Dave (whether it’s true or not is irrelevant). That’s something I’ve always wondered about.
I had a good friend on college that was a head case. She’d come back from her psychiatrist and tell us what she told him and each time she’d tell us about the session we’d keep telling her that if she continued to lie to him and tell him everything is fine, she was never going to get better. We always thought about calling him and telling him what’s really going on, but we had no idea if he’d do anything about it of if he’d legally be in a ‘in one ear out the other’ situation. But we wanted to get him heading down the right track with her. Looking back, and I could be wrong, it’s very possible she was lying to us about what she told him to marginalize her situation. It might it easier to come back and say ‘it’s fine guys, I’m okay, it’s no big deal, this is all so dumb’.