Ten years ago, I toured a community with the following mission:
To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.
This community is called Fellowship Place, and it represents what can happen when people come together to look past medical treatment alone – and add housing, purpose, structure, and community to the picture.
At the time, I wished Ben might be interested in living in such a caring, well-thought-out community. He wasn’t. But now, ten years later, he is open to the idea.
The only problem is: it could take a decade before a place opens up. I wish I’d put him on the waiting list ten years ago. It might take that much time.
My son. He is trying to hard to get his life back. If he weren’t trying so hard, maybe then I could detach – let go just a little bit more than I’ve already trained myself to do.
But it’s heartbreaking. For me, sure – but mostly for him.
The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.
I can feel why, sometimes, it may feel easier to just fall down the rabbit hole of non-treatment and go back to a problem that’s more familiar: getting out of the hospital.
Square One (or two, or three), when you’ve climbed so far ahead of it in the past, is really a hard spot to land back on. Ouch.
The trouble with regaining some sanity (or sobriety, for addicts) is that your vision, when examining your life, clears. That, unfortunately, can hurt like hell.
That’s part of why a fresh obstacle to Ben’s renewed recovery journey (after the Covid-19 fall) is now: getting clean. He has returned to smoking pot – never a good sign – which brings all the usual “side effects”: lies, denial, the illusion of accomplishment, poor decisions, loss of money, lack of motivation.
Shit.
Road to recovery…Far from Clear
The first signs were during a home visit – halfway through a fantastic visit, after Ben “took a walk to Starbucks”, he returned home completely stoned. And denying it. I took him back home and told him he could lose his placement in the group home, and also I would not be allowing him to visit until the truth – and a plan of action – came through.
One day later, a very contrite Ben called to apologize, in tears, and ready to tell the truth and “get clean”…and he did – for 35 whole days. He even went to meetings, and shared for the first time ever. Yeah, maybe “it’s only pot”, but for Ben it spells disaster.
Then…a relapse. He took 2 hits from “some girl on the street corner” (after refusing once, but then he caved) because “I thought it wouldn’t really make me seem stoned, and it might make me feel better about my life.”
Another call from his Group Home.
Another frantic message of denial from Ben
He can lose his housing. He lost his home visit. I feel stuck in a cycle of Groundhog Day-like repetition.
I gave Ben a day to come clean with the truth – and he did. We talked for over an hour. He is so angry with himself. He regrets giving in to temptation. He says all the right things…but he has said them before.
Still – what breaks me apart are two things: his voice, cracking with tears and emotion (rare for those suffering with schizophrenia), and his statement:
It has been almost four weeks since I picked Ben up, curbside delivery (not allowed to enter the unit due to Covid) from his over-five-month stay in a “behavioral health center” (AKA psychiatric hospital). He was so full of hope, the day so full of promise – but we family members know to enjoy the moment, and prepare for a fall.
Man, I hate to be right about this. But I knew – I knew – he was on the wrong medication, and it was only a matter of time.
Thursday, Feb 4th – pickup, home to pack, delivery to new housing I’ll call B Home (very very grateful for that arrangement, don’t get me wrong). Ben seems excited and open to his new life.
Friday, Feb 5th – I drop off a few items he forgot, and already Ben seems off. He’s on a time-release injection of Haldol, and wasn’t kept in hospital long enough to observe how to time the next needed dose.I call to inform the psychiatrist via Ben’s case manager (who can ever get the actual doctor on the phone?) and am told he’ll get back to us on Monday. That’s three more days that Ben can deteriorate.
Monday, Feb. 8th – the doctor has done nothing. No oral boosters prescribed, no change in the next injection date. Ben seems not much worse, which is good, I guess – but he is still not good. Families know.
Thursday Feb 11th – I drop off a few shirts to Ben at B Home. He holds it together enough to talk to me through the car window.
Good news: he is wearing a mask.
Bad news: he has gone on a shopping spree for hoodies. He has about 60 hoodies already, folded neatly (by me, while he was hospitalized) on a shelf in his old room.
Man, I hate to be right about this. But I knew – I knew – he was on the wrong medication, and it was only a matter of time.
He is stable (ish), but it’s like the nine years he spent getting off Disability and working up to full-time employment have been erased completely, like an extended version of the plot of Groundhog Day.
We still have not heard a peep from his psychiatrist.
“Dear Mom, and whoever else may or may not be listening. This goes out to my mom with deep heart-feltedness. For whatever I’ve done in the past, I’m extremely and genuinely sorry for, and will forever be.”
I have this recorded on my iPhone.
Why? Because one of the first things Ben did after I picked him up from West Hills Behavioral Hospital a few days ago was to apologize.I was so shocked I asked him if he’d say that again, into the phone, and make it official. He laughed (laughed!), and said sure.
It was a good moment. I’ve learned to treasure those, since they tend to be fleeting.
I was right. Unfortunately. Shit.
Ben had been in the hospital for over five months this time. It was a nice vacation for us (sounds cruel, but if you e been there you get it), though beneath it all is my mother’s heart that hurts for my son and all he’d lost after losing his full-time restaurant job to the Covid economy. I’d watched the downward slide for months, as he bravely (in my estimation) held on to hope and tried to fill his days with purpose. That’s didn’t go so well. Marijuana use increased, and so did his determination to not take his meds. All kinds of tricks, and we were powerless to do much except supervise, nag, accuse, try to outmaneuver him. It had worked…for awhile.
Now, after the hearings giving us right to treat and commit “over objection”, Ben finally stabilized – but not on the medication that had brought him back to a place where he could work as a restaurant server….and fool people into not knowing he has this devastating brain illness: schizophrenia.
No. Because he “doesn’t like the side effects “ of that medication (and I don’t blame him, but still…), he has chosen (and had the right to) an old antipsychotic, Haldol, which works okay but can have even worse (and permanent) side effects.
Yes, even in the hospital, we can win the right to treat, but not to choose the right medication. He has “rights” , which cause him harm.
One week from today, Ben will be discharged from the longest hospital stay of his life. Five months. Five months! Believe me, I am grateful. Grateful that he was safe, cared for, and somehow has returned from the abyss of his illness. Again.
Not gonna lie, though: we’re also very grateful for having had a break from living with him. What a blessed empty nest. No staying up til 3 AM to make sure he takes his meds. (Up until Covid hit, Ben had worked as a restaurant server, thanks to those meds he hated). No cigarettes on the front porch. No huge messy vegetarian cooking marathons. And, mostly, no tension in the house from secrets kept, delusions hidden, resentments festering.
How, after nine years of success, did Ben wind up at square one, delusional and certifiable? I can blame Covid-19 (see this earlier post) for the job loss, the structure crumbles, the community scattered, his purpose stolen – but, truthfully, he was teetering on the brink of the rabbit hole even before that. Excessive pot use, self-caused financial stress (he leased a Lexus? Really?), and mostly – mostly – resenting and cheeking the medications that provided the foundation for his ability to function in reality. Every night my husband or I could feel the hatred coming from Ben as we supervised his medication he desperately wanted to not need, all his charm having been used up at work and none left for his family.
But there’s only so much you can do if he backwashes into the water and then swears he didn’t.
We got by. We all squeaked by. Until August 29, 2020. Another night spent in the police station, calling the on-call psychiatrist, watching my son disappear before my eyes. Again. Talk about the worst Déjà Vu ever.
Yesterday I had the pleasure of swapping stories, issues and tips with Susan Schofield, Host of Bipolar Nation on LA Talk Radio, and her husband Michael, author of January First: A Child’s Descent into Madness, and Her Father’s Struggle to Save Her. (reviewed in my last post)
Sure,we were talking author-to-author, host-to-guest, but mostly we were talking parent-to-parent.
We need each other. I can’t tell you how inspired, informed, and encouraged I have been by the hundreds of families I have met and shared with in the years since Ben’s first symptoms. Some of these encounters have been at NAMI Meetings and Classes, some by e-mail, in media or live appearances, others in the pages of books.
Without you all, I don’t know how we would have survived. Thank you – for the courage to speak up, the willingness to ask questions and fight, the empathy to reach out.
This is what I hope to give back to you in the pages of Ben Behind His Voices, and in meeting you too.
Together we can make a difference. My favorite cliche – because, like many cliches, it is true.
Ben has been spending a lot of time with us lately; in fact, this is the closest we’ve had to daily contact since he lived with us prior to his first hospitalizations in 2003. It’s different now; he has grown. Eight years in a group home have taught him independence, respect and self-esteem that he’d have never gotten under our roof, safe within our wings and safety nets.
But there is a limit.
Since his episode this summer (right after the too-swift move to unsupported housing), we have had to step in and help guide Ben back to the self-sufficiency he’d earned before. Now, though, I don’t trust the services he is receiving – and, I think, he doesn’t like living alone as much as everyone said he would. So, much more often than before, he spends the night with his family. We drive him to school, to work, to meetings – feels like high school years all over again, pre-drivers’ license. It’s fine for now, because it’s what Ben needs. But we encourage as much independence as we can, to boost him back up to the mental illness version of young adulthood.
Two nights a week, therefore, he stays at his apartment after school and then takes the bus to the “anonymous” meeting he has attended for six years. Last week, to our horror, this solo journey into a questionable area of town resulted in near-disaster. Ben was mugged. His cash, his beloved backpack (containing precious cargo: textbooks, school papers, handheld video games, poetry, the ipod he had saved for for over a year), his keys – all stolen. Psychically, it could have been so much worse – he was thrown to the ground and threatened with what they said was a knife , but he got away with a wrenched shoulder, a red mark on his neck, and some scrapes. Whew. But now he is, understandably, skittish. Continue reading Risk: The Price of Independence?→
Details have just been announced for the book launch event for “Ben” – and I couldn’t be more proud to be associated with Laurel House, who will be the event partner.
Laurel House stands as an amazing example of what can happen when those diagnosed with mental illness receive the respect, support, and opportunities they need. Please take a moment to visit their website to see what they do, and read some amazing stories.
I spent a wonderful afternoon last visiting touring Laurel House, and was so inspired by what I saw. This quote from their materials sums up what they do – and what is, still, so sorely needed for others who have not yet found a place like Laurel House.
“Laurel House restores hope by giving people a chance to regain what they have lost: employment, education, housing, companionship, health, ties to their community. Self-respect.”
Laurel House is based on the “Clubhouse Model” that is, thankfully, a growing field – but still greatly in
Clubhouse Model
need of support. My hope is that Ben Behind His Voices will help spread the message that recovery is possible, and that the costs of such support for recovery far outweigh the much more expensive cost (financially and emotionally) of untreated mental illness. (over $100 billlion yearly in the US alone).
Tomorrow we finally have the discharge meeting. Ben is, at last, responding to his meds and is well enough to have completely clobbered me and my husband Geoff in a game of 500 Rummy last night. Time to think about next steps.
It has now been 5 weeks since his relapse. I have no idea what will happen in tomorrow’s meeting, but I know this: Ben, of course, wants to return to his independent apartment, scene of the aforementioned relapse. There are pitifully few other options right now. If this is currently the only choice, I will not leave that meeting until some clear plans have been set in place to safeguard Ben’s recovery. Will keep you posted.
Last night I visited Ben with an orthopedic boot on my ankle. Cat bite. Long ridiculous story. I will recover, but right now can barely walk. I limp so slowly that I couldn’t use the hospital’s automatic revolving door (too fast). Let’s hope Ben never uses it again either. That’s what we are working towards. How to combine greatly reduced outpatient support with the goal to stay on meds, in a program, and out of the hospital?
That said, I now want to bestow an award: Employer of the year goes to Ben’s employer. The support they have given us during this difficult time has been exemplary. They have signed and sent a “get well” card to Ben. They sent him gifts: a company T-shirt, the little toy in the pic above. I keep the toy in my office for now (things can disappear in the hospital), and will give it to Ben upon his release. This stuffed crocodile has reminded me that I’m not the only one pulling for Ben’s recovery, not the only one who cares. So I added the post-it-note you see in the picture: “Recovery is Always Possible.” It has cheered and encouraged me over the past few weeks, and reminded me that Ben is – and always will be – in there behind the voices waiting to come back to us.
I’m so grateful that, once again, he has. And now we see what tomorrow’s meeting brings. I may bring the crocodile with me for moral support.
Ben is getting closer to release from City Hospital – this time. Some of you have asked about the audio excerpt I posted a few days ago – when did that take place? That excerpt is from my book, the incident dated one week prior to Ben’s first admittance in 2003.
This year, 2011, marks Ben’s first hospitalization in over six years, and this post is about the current setback. What’s different now? Mostly this: we’ve had six years of evidence that Ben can thrive in a group home setting, and a devastating one month of evidence that moving him way too quickly into independent living, without
Treatment Advocacy Center, for info and advocacy
appropriate transition “person-centered” services, was not well thought out. Simply put, the new staff did not take the time to get to know Ben, his needs, and especially how to properly supervise his medication intake. The result? Over one month now, in the hospital. And now, grateful he is starting to respond once again to his meds, we face the next big question: Where will he go once he is discharged, and how to avoid another relapse?
They have planned a meeting at the hospital re discharge, and I plan to be there. But, just in case, I drafted a letter to all concerned. Here is part of what I said:
“I want to be perfectly clear about what Ben needs, not just as a patient but as a person – for a successful post-release program.
I am aware, of course, that restrictions exist due to legal and financial restraints over which you may have no control – but as you can see, an ounce of forethought can prevent a very expensive (both financially and emotionally) hospitalization.
First of all, let me state for the record that Ben clearly is not – and was not, at the time of his transfer – ready for independent living of the sort arranged by your agency in May. This should have been clear from his obvious resistance to medication at the time of his intake meeting. A vital part of his recovery process – and the reason he was doing so well in a group home setting – is careful, unwavering supervision of his meds. Even though his success and recovery grew in the past SIX years before his sloppy transfer to the low-income-housing that was arranged, it could only be built upon the foundation of careful supervision of his meds. Continue reading “Person-Centered Treatment”: Yes, please!→
To serve adults living with mental illness by offering a full range of therapeutic support and rehabilitation services that promote independence, wellness, and a meaningful life.
