When it comes to the mentally ill, sometimes the greater insanity is on the other side of the desk.
This weekend, I found myself standing outside the bathroom door while my husband was locked inside with a knife, cutting his wrist.
He has been having issues with medications for his schizophrenia. Treatment is antipsychotic medication, which comes in pills to be taken once or twice a day, or injections that last up to four weeks. He has to be on both due to increasing tolerance.
The Dude is sweet, loving, and gentle when properly medicated, but combative and suicidal when delusional and hallucinatory. Over the past few months, his injection has become less and less effective to the point of not working at all, with oral med use now testing the limits. (For those of you who are familiar with these medications, he is on the highest dose of Invega injection, 20-40mg Zyprexa, and 10-30mg Haldol. These are massive doses, but are necessary to keep him out of danger.)
His doctor seems hell-bent on landing the Dude in the hospital. He refused to address the medication needs at all until the fourth visit, at which point he said he wanted to speak with him alone. After the Dude explained that I was his advocate and he needed me there, he relented.
We insisted on something different. The doctor agreed to start the Dude on Abilify, which is prescribed for depression, bipolar, and schizophrenia. First oral meds, and then an injection in a couple of weeks. And this is where the story takes a nasty turn.
This doctor held that prescription hostage until we turned over to him all the Zyprexa and Haldol we had. The ones that were our property. The ones that were just barely holding the Dude together. When I protested, he said that if things got bad, we should go to the ER. It didn’t make a difference when I said it would absolutely get that bad. Just go to the ER.
It isn’t that simple. First, the Dude is very resistant to the hospital after having been institutionalized in the past, and he refuses to go when psychotic. I would have to involve the police, and he becomes belligerent with them and is at risk for committing suicide by cop. And as some people have found out through heartbreaking tragedy, the outcome of any police involvement can sometimes be disastrous.
Not to mention that the hospital in the network does not give any treatment to psychiatric patients without admitting them, and you already have to be actively suicidal or a danger to others. That’s a mandatory 72-hour hold. The Dude has had experience with this before. They do not provide any individual therapy there, nor will they even allow you to see your own therapist. They put you in groups where a highly intelligent, private, paranoid person like the Dude is going to sit quietly and anxiously, listening to everyone else’s problems and groaning inwardly at the platitudes. You have to share a room with someone else, and you are only allowed visitors for short periods on just a couple of days a week.
In short, our goal is to stay out of that situation entirely because it’s not only unhelpful, but it can actually be harmful.
As for the Abilify, we’re still waiting for it. It was not called in until the second day after we turned over the meds, requires prior authorization from Medicaid (which can take a few extra business days), and we’ve discovered that the 5mg prescribed dosage is completely inadequate. The manufacturer’s stated starting dose for schizophrenia is 10-15mg.
This is where my rebellious streak comes in handy. We actually hadn’t turned over most of the medication, just a token amount. The Dude is still taking it. Thank goodness, because he would have been unmedicated for a solid week otherwise. Even so, he did become psychotic over the weekend, and within just a couple of minutes was screaming at me and dashing into the bathroom with the knife.
Thankfully, I know the best approach to dealing with it. I stood outside and told him gently that I loved him, I knew he was scared, and I was going to protect him and make sure he was okay. I asked him to open the door so I could hold him. And he did. He handed over the knife. Then I got him to take another pill and lie down while I held him and stroked his head. Once it kicked in, he was back to his sweet, gentle self.
I know that some of you are saying, “He was going to commit suicide! Why didn’t you take him to the hospital?” Aside from the issues outlined above, it was no longer an issue after the psychosis was gotten under control. And his wrist was not cut badly enough to require any medical attention.
Of course, we recognize the seriousness of this, so one of the things we’ve been doing is looking for a new doctor. This is not easy. Medicaid in our area funnels people into community health centers, so you have very little choice, and if you want therapy, you have to see a doctor at the same place. The Dude has the best therapist he’s had in a long time after a couple of bad experiences, so it’s pretty important that he stay. She's working on finding a solution for us.
Whatever happens, I will make sure he gets the treatment he needs. But the sad fact is that not everyone with a serious mental illness has an advocate. They’re the ones who are more likely to end up unnecessarily institutionalized, homeless, in prison, or dead, as victims of an often dismissive and insane system where doctors who are unsympathetic or have God complexes can easily take advantage of the vulnerable.