My sibling is refusing EMU (epilepsy monitoring clinic)
Hello friends, I'm looking for some assistance regarding my brother's refusal to go back to the EMU.
My younger brother (m28) and his identical twin brother both have epilepsy with seizures that are non-motor, potentially focal/unknown onset seizures, that kind of sometimes look like absence seizures and sometimes like laugh attacks. We believe that the seizures are happening daily. They result in symptoms that effectively look like a combination of Tourettes and Schizophrenia with both visual and audio hallucinations. They have next to zero executive functioning, and are not entirely rational *this is important* when unmedicated for their seizures and really struggle to feed and take care of themselves, including taking their medication, bathing, etc.. It took the first brother (we'll call him L) almost ten years to get a diagnosis after his onset at age 15 after being bounced around incompetent neurologists and psychiatrists, but within the last 4 or so years the second brother (we'll call him R) has begun to display the identical symptoms and behaviours. L is now medicated and holds down a job and has begun to make friends and have a life again. R is convinced that he has schizophrenia and not epilepsy, despite his current psychiatrist and neurologist both telling him that he had epilepsy with psychiatric symptoms.
Now here's the problem. In order for R to be adequately treated for his epilepsy (which he is convinced he doesn't have) he needs to go into the Epilepsy Monitoring Clinic (EMU). Almost a year ago he went into the 13-ish bed open EMU and was there for just over a day before a woman in the bed right across from his had a massive seizure resulting in a cardiac arrest and almost died right in front of him. This traumatized him, and combined with the poor state of mind he was in/hallucinations he was having, resulted in him asking to be discharged.
Finally, one year later, after his neurologist went on a one-year leave, we have finally gotten the opportunity for him to go back in.... and he is refusing. He is adamant that he is schizophrenic and that this will not help him and that he will not be going back. He said it's a a horrible experience and he has convinced himself that he will need to be in there for two weeks for some reason and said he's not going to do it.
My parents (who are his full time caregivers and financial supporters since he cannot work) are devastated, and don't know what to do. Burnout doesn't even begin to describe the state they are in, they're getting older and they cant sustain this. I don't know what to do either. He's extremely angry with me for telling his doctor that he is not doing well (he tried to tell her in his phone appointment today that he was getting better in an attempt to avoid this, but he is absolutely not), and blames me and my parents for forcing him to do this. We are at an absolute loss for what to do. I'm frantically searching for private or at least semi-private options to see if that would be better for him (we're in Southern Ontario, Canada, not too far from Toronto) and I'm struggling to find any options. If there are private options in the USA, or Europe that can be paid for we would be open to that as well, finances are in a good place. The EMU he was in last time said they would do their best to put him in one of the three more secluded beds in the unit but there's no guarantees and also I don't know if he will even agree to that, he's currently not speaking to us. I only just convinced him to speak with a therapist and he has had two sessions, I'm hoping he will attend another one before we get a call for an open bed.
So basically, I'm looking for any kind of advice or help that will either help us talk to him about it, or private clinic options, or literally anything. Please help.