I knew it. Involved families always know it.
Wednesday, after a voice-over session- late in the afternoon – I retrieve two messages from Ben’s caseworker. First message: “Ben
forgot to show up for meds this morning. ” (and why did he wait until 4 PM to tell me?) Second message: “I just spoke to Ben. He says he forgot and he will come early for his evening meds.”
Sure he will. I finish my job and drive over to Ben’s neighborhood and the office of his agency. I check all his favorite hangouts – diners, mostly. No sign of Ben. I drive past his apartment – bathroom light on, no changes an hour later. I go and wait at the agency. No Ben. I call my husband and we wait together. 11:30 PM. No Ben. I have called his cell phone about 100 times today. Straight to voice mail.
This is not good.
They tell me: “There’s nothing we can do until tomorrow.”
My husband offers to drive around the streets in case Ben is wandering somewhere. That’s what happened last time he went off his meds, six years ago. Six years since we last went through this, and it suddenly feels like only last week.
“No”, I tell him. “Let’s go home. There is no point. We need sleep.”
The next morning, I call Ben and he – unbelievably -answers the phone at last. Says he’s on his way to take his meds and go to work. He sounds OK, for the few moments we speak. Maybe we caught it in time, I think. I do not hear from his agency so assume Ben did arrive for for meds, did go to work.
At lunchtime, I am scheduled to speak at an event celebrating those with disabilities (including mental illness) who are succeeding at their jobs. Perhaps next year, some year, Ben will be among these honorees, I dare to hope. I deliver my speech, acknowledging that we’d come close to a relapse the previous night but that I think that the responsibility of having a job had actually saved Ben from disaster. This gets lots of applause. Little did I know that while I was on stage, Ben was still in his apartment, refusing to allow his caseworkers – and then the police – to enter. He is saying he lost his keys and is afraid to leave the apartment because he won’t be able to get back in. He is starting to break down. The relapse monster is peeking out from under the bed.
Several hours later, Ben has been brought to the hospital by ambulance and is admitted into the psych unit he swore he’d never see again. He is refusing the only meds that help him. Here we go again.
Two days without treatment – sparked by a transition from group living to independent living sloppily made and with no insight and little thought (don’t get me started. heads will roll.) – and it’s as if the last six years have disappeared. College courses, dean’s list grades, full family participation, and finally employment -erased? Never. Threatened? Oh yes.
Independent living must be introduced slowly. Community cannot be torn away full-force, the way this transition was handled. I am livid. And sad. And ready to advocate. I hope it works again this time. I pray Ben can keep his job – which will only happen if he goes back to Clozaril, the only treatment that works for him. I know it’s not his fault, this lack of insight into his illness, but I can still be angry at the unfairness of it all. At least for awhile. Relapse always calls for a small pity party – acknowledge the feelings so I can let go – and then a move back to action.
There is always this threat looming: Ben may not bounce back. But I will fight like hell to bring him back to life. I have to believe it will work, somehow, again. And know that, ultimately, our only choice may be acceptance. But not yet.