After Mental Health Treatment - What? Fellowship Place Gets it Right

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.

We need more places like this.

Hear why: 

"Mom, My Future Seems So Bleak": Feeling the Heartbreak

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:"

Mom, My future just feels so bleak."

Oh. My.

He has lost everything he works for years to build - his work, his car, his friends, his sanity, his place in our home -- and months of his life. Unemployment is a huge blow - I've been there, and so has my husband, and maybe so have you - but imagine going through it when you've also "woken up" from the longest hospital stay of your life, to find that your world has fallen apart.

And now - some steps we've all agreed to, to provide more purpose and structure. Yes, he wants to work again someday - that waiter job was everything to him (but can he work? with hands trembling from Haldol? we shall see) - but for now, all I can do is remind him that:

• he has rebuilt his life before, and can do it again

• there are people who want to help

• Getting too cocky, and thinking you can get sober alone, seldom works for him - and is often a  sign of danger.

• We love him

• For now, it is good to sign up for some activities offered to him, even if they fall short of the full-time work he used to have.

Here's where we are. Ben is in a group home. He is rebuilding again after a 5 1/2 month hospitalization.

The Four Pillars, our present day version in this new Recovery Journey:

Treatment: Haldol by injection (different medication for Ben than the one he'd done so well on - in my eyes - before, but he swears he "likes it better".

Plus Side: Injection form much easier to manage (time-release)

Minus side: I am seeing tremors (could become permanent). Ben hides these, and denies their existence.

Structure: Some. Group Home meetings, and now some "Anonymous" meetings. He needs much more structure. Don't we all. He fills his time taking long walks, but his life is too aimless (considering pre-Covid he worked full-time)

Purpose: He was stripped of it when Covid cost him his job. Purposelessness sucks.

Community/Love: Well, he still has us, his family. But now it's weekend visits, and only if he is clean and sober. He has lost the right to visit us more than once - along with my trust.

So - we move ahead. With new steps. One day at a time.

2 days clean/sober, and he has also learned some things. Hopefully they will stick.  

Out of the Hospital, Not Out of the Woods

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.

Timetable of deterioration:

(first few days covered in more detail in the earlier post):

It doesn’t take long to lose ground

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.

Feb 15-19 - I am so grateful that Ben is in B Home, and not with us. I think my heart would break every day seeing him like this. Texting and phone class, even facetime, are helpful. He’s pretty good on the phone.  

I do have a long conversation with the B Home Social Worker, who seems caring and informed. She actually listens to me as I share Ben’s medical and work history. She is amazed that he used to work full time. I’m sure she can’t see that possibility in him, the way he is now.

Meanwhile, the money questions pile up. Did Ben have Social Security reinstated? I’ve been working on this since October.

I speak to Social Security, to DSS, to his benefits manager, to the residence staff….and everywhere there is a different story. 

Ben lost medical coverage...no, wait, maybe he has it.

Who will pay his rent? 

Are his medications covered? Yes, they are. No, wait, they aren't. 

One system says yes, the other hasn’t gotten the memo. 

This is a SNAFU paperwork nightmare. 

I am told that if Ben weren’t on the “fast track” these decisions would take two years. Two years! 

Feb.20-24.

A new wrinkle.

Ben’s case management team is suddenly being disbanded. He has been within them for 18 years.

Now, a whole new team to train. I hope they’ll hear our story. I hope they are better.

I hope the doctor is more attentive, knowledgeable, helpful, caring. 

I am wishing for a lot. As ever.

Meanwhile, Ben’s “rent” has not been paid because no one knows where his benefits stand. I write out a check for almost $1200 and mail it in to B Home. I cannot afford this. But of course I pay the bill.

And, Ben is failing. The B Home staff tells me he is twitching, gesturing with his hands, mumbling, eyes darting off to the side. Also, He’s isolating in his room whenever he can, listening to his music. 

This, my son who waited on a full station of tables just a year ago and kept it all straight and came home full of joy about the social interactions.

I know these signs. The voices are getting louder. 

God, please help my boy.

The psychiatrist has yet to order oral Haldol boosters or move up the injection.

This didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Feb 25 - finally, Ben is scheduled to get his next long-acting Haldol injection. It’s happening tonight.

But no.

At 7 pm I get a call from B Home. The pharmacist doesn’t see any medical coverage and won’t fill the prescription. This just becomes a thing at 7 PM? 

“Don’t worry,” they say. "If he gets more symptomatic we’ll just get him back to the hospital."

What?

But no one even knows if he has medical coverage. The case is still being “decided”, according to the DSS case manager I spoke to yesterday. This has been going on (I repeat, sorry) since October.

And this didn't have to happen! Yes, sorry but it's true, I told you so!!!!

Many many phone calls later (bright spot: the benefits manager calls me back even tho it’s past her workday hours), I am assured this will be straightened out by morning. If Ben gets through the night without full-blown psychosis.

If.

I hold my breath. But I do sleep. The benefits manager told me to.

Feb. 26 (today)

We think he’ll get the injection today. We think it has been straightened out, that the pharmacist will fill the prescription, that the nurse will arrive, that Ben will not run away from her (that has happened before)..

I’ll believe it when I get the final word. 

No, out of the hospital does not equal out of the woods.

And so many others have it so much worse. At least Ben has a roof over his head, staff to manage his care, a family that loves him.

But it could be so much better.

Quoting Willy Loman (again, and just as fruitlessly it seems) from Death of a Salesman:

 Attention must be paid.

He's Out! But For How Long? Family Input Ignored.

It was so much easier then…

“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.

This medication has brought Ben back, sort of - and it breaks my heart to see how hard he's trying to seem like his old self - but he definitely is not the same. As my daughter says, “I look in his eyes and he just isn't there.”

Best - and hardest - decision we made was to have him discharged to a group residence (let’s call it E house)instead of to our home where he'd been living for the last nine years. He is doing his best to be enthusiastic about this. He has not once guilted me, not once complained about his new situation. Yet. I’m crediting the group work he did in the hospital, for that (and for the apology).

Still, it’s such an echo of where we were back in 2003, when Ben was accepted into his first residence. The house seems nice, the staff seems caring. Hard to tell some of the staff from the patients...until you look and listen a bit more closely. Ben has his own room (for now), and I’m grateful there is a plan in place to ease him gradually into independence.

But. And there is always a but.

He is slipping. He’s on a time-released injection of the haldol. This is good, until it starts to wear off. And he wasn’t kept in the hospital long enough to gauge the half-life of the injection. Daily boosters can be given orally, but he hasn’t been prescribed any daily medication except something to prevent side effects (like twitching.)

And every day since I dropped Ben off, he gets worse and worse. And it has only been 4 days.

I’m spared long visits because of the pandemic, (sorry, but it’s true. Visiting is painful when he deteriorates), but when I dropped off his Medicare card the day after he was admitted I could see it. Couldn’t focus, trying too hard to be sociable, repeating things. I know the signs, believe me. And...I’ve seen him when he’s truly functional (or what passes for it when your brain is filled with constant interference) and believe me I know the signs.

We cannot wait for his next injection appointment. It will be too late. We need to fix his treatment NOW.

I call the staff, from their parking lot, to tell them what I see. Even though they barely know him, and have never seen him well enough to handle a restaurant rush and still get kudos on Yelp, they see the decline too. They agree with me. So....I call his case manager.

This is a a Friday.

I’m told the psychiatrist (Dr. K) will check on him on Monday.

I say Monday will be too late.

Case manager says he'll talk to Dr. K and get back to me.

Of course he doesn't get back to me.

The staff at E house tells me not to worry, as they will "get him to the hospital if it gets too bad."

This is exactly what I am trying to prevent.

It’s like I have to train a whole new set of staff.

Hello, please meet my real son. This is the one who, when balanced, can get a 50% tip from a happy family. Who can make a great speech at his sister's wedding. Who can muster some genuine caring and empathy for others.

When treatment works, he is more than just “stable”. He is wonderful.

And right now he is neither. He needs better medication and he needs it now.

It’s such an echo of 28 years ago when he was first placed in a residence after his 5 hospitalizations in that one year.

Only then, he was 21 and I was 51. Now we are approaching 38 and 68. In all that time, are there no other options? Have they not realized that family input matters?

When will this horrible illness get the attention it deserves?

Five Months a Patient (Psychiatric Unit): Daring to Hope Again

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.

Fast forward, I guess…past more court hearings, renewed conservatorship, Ben’s refusal to go back on the meds that work best for him, awkward zoom calls (no visiting allowed, thanks Covid), paperwork trails to get him back on disability and out of debt. Where are we now? 

He finally seems stable again – but he’s on Haldol, a medication that can have devastating – and permanent – side effects. Also, it doesn’t help much with the negative symptom of schizophrenia, so I’m not a fan. But Ben has refused to do the blood draws required to be on Clozaril. So here we are.  And - so far, so good. 

It seems okay. He called me yesterday – three times, as he needed a favor – and we actually had a conversation: about his bank account (yes, I deposited money so he won’t be overdrawn), his car (repossessed, and he’ll have to declare bankruptcy and start over again), his housing (back to a group home, which has thankfully accepted him), about origami (he taught everyone on the unit how to do his favorite creations, something he recalls from years ago), and even about politics. He is aware that we have a new President, and that in itself is a miracle, since five months ago all we got out him was the occasional grunt and suspicious staring and mumbling to his voices.

When Ben learned that I had taken care of his affairs, he said, “Mom, you’re the queen of the world” – and he meant it to be funny, not a delusion. I have my son back – well partially. As always, I'll take it. Better than nothing.

In one week, he gets placed in a residence with a day program included. He has no car, no job, and will be living a half-hour from us. But it’s better for him, and for us. I hope and pray that he doesn’t walk out the door of that place when the nurse is coming with his medication. It had happened before. And then– back to the psych unit.  The revolving door.

I have my son back – well partially. As always, I'll take it. Better than nothing.

But, for now – we hope. And express thanks to the staff that has kept him safe for five months, the medication that seems to be working, and that there was bed available for him.

Can things fall apart again? Oh, heck yes, you bet they can. But dare we hope?

Absolutely. We dare to hope. No use predicting disaster (then we’d have to go through the emotions twice, and all we’d get is the booby prize of having been “right”. (Ugh) – all we can do is our best to prevent it.

Welcome back, Ben. I’ve missed you. Not the illness – I hate schizophrenia with all of my being. But now that I see glimmers of my son again. Yes. I’ve missed that. 

One step at a time. And avoid the rabbit holes. 

The Parents Network: Eyes, Ears, Heart and Soul

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.

Here is the episode of the show where you can download or hear our conversation.

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.

Risk: The Price of Independence?

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. He won't go into that neighborhood again, and he is easily spooked now. Anyone would react that way - but with mental illness complications there is addition worry: will the stress trigger symptoms? will he backtrack in his progress? will pain relievers interfere with his meds?

We count ourselves lucky, of course. He is alive, and somehow we will replace the physical things he has lost. He reacted very sanely to the threats - "take anything you want, just don't hurt me." Thank God. But he feels violated, spooked, and afraid in ways of the independence he has worked so hard to regain.

One day at a time. I think we'll drive him to meetings in safer places for awhile. I'd rather he be safe than independent right now. And the delicate balance continues.

Laurel House announces "Ben Behind His Voices"Book Launch Event!

Laurel House

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.

Want an invite?

Here are the details:  Book Launch with a cocktail reception and reading, September 20, 2011

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 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).

Come and celebrate!

Focus on Hope: Can We Stop the Revolving Door?

My Talisman for the Past 5 Weeks

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.

"Person-Centered Treatment": Yes, please!

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.

Treatment Advocacy Center, for info and advocacy

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 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. Even a med nurse is not the answer. It is too easy for Ben to refuse to open the door, pretend he is not home, or to legitimately not be able to be there because of work, school (in the fall he often has evening classes) or the AA/NA meetings he attends. He needs to be accountable to someone for his med compliance- but also have the flexibility to attend the other things that are vital to his recovery such as family events, school classes, NA meetings. This was entirely workable at Harrison House, where – above all – each and every staff member was aware of how closely he had to be supervised while taking his meds.

Now to the rest of his recovery needs, his “Person Centered Treatment.” Ben’s prior success, while based on the foundation of his medical treatment, was based on three other vital elements:

• Community – staff that truly knew him and - in most cases – actually cared about him, applauded his achievements, served as parental figures; housemates who, while not his best friends and often less functional, still provided someone to eat with, watch TV with, go to meetings with. At the apartment building that was arranged, he can’t even smoke a cigarette in front of the building. No "loitering." Isolation is encouraged there. Wrong!!!!! Yes, there are options for socialization, but Ben, as is often the case with mental illness, does not have the self-motivation to go to these places, is apprehensive about the first steps, and finds it easier not to try the unknown. Making an “exercise class” available is not enough.
• Purpose – school, chores that help others, groups to attend, feeling needed. In this lonely apartment? He is lost. No one needs him, except at work – and that is not enough, as you saw.
• Structure – being home to do chores, a schedule for daily living, requirements for NA/AA meetings etc. – but NOT expected to self-motivate. The negative symptoms of mental illness include a reduced ability to plan a productive day, and to self-motivate. At Harrison House, the requirements – and the fact that others were required to do the same (community, again) – gave Ben the structure within which he could spread his wings to other goals (additional meetings, school, etc) himself.

You have told me there are “no beds” anywhere else. I know there is a long waiting period. I know Ben thinks he is happy in this isolated, roach-infested apartment. Maybe our choices are limited now – but if Ben returns to this apartment without the support he needs, he will be back in the hospital before you blink your eyes. So let’s prevent that.

Person-Centered treatment, penny-wise-pound-foolish budgets, required assisted outpatient services, and support for medication adherence are all hot legislative issues, and I know that in CT you are especially limited by the lack of power they allow for case managers as well as families.

But Ben is a person, and there is still a way to work together, and with him, for the treatment he needs to stay functional, while honoring the fact that those with mental illness don’t always “know what’s good for them”, especially while impaired."

Thank you.
Randye

NAMI National Convention:Where We Need to Be

Chicago. Ben is still in the hospital back in Connecticut, and I am here - at the NAMI National Convention.  This isn't the first time I've had to make this decision. Six years ago, in 2005, I left Ben to go to St. Louis for another NAMI function, so I could become a state trainer for the Family-to-Family program. Then, as now, I don't regret my decision. Ben is in good hands (City Hospital staff is wonderful, and Ben is responding - knock wood - to his meds at last) and his sister and brother-in-law are nearby to visit and, well, just to be there.

And, as one speaker reminded us yesterday, Ben has to take care of himself too. I can supply the support, the framework, put the pieces into place - and will continue to do so - but this is Ben's journey too. And, for now, my best decision is to take care of myself. So, husband Geoff and I hit the road on Wednesday and drove 14 hours to be here.

The right decision. Here, I am surrounded by a couple of thousand of people diagnosed with mental illness (including Jessie Close of BringChange2 Mind),  families of those diagnosed (including newsman Bill Kurtis and journalist Pete Earley, author of Crazy: A Father's Journey Through America's Mental Health Madness) and friends both personal and professional. This is where we all need to be right now - talking about everything from proposed budget cuts for Medicaid (talk about crazy!) to the need for Assisted Outpatient Treatment (the lack of it in Connecticut - one of the only six states without it - is the reason Ben has had his relapse).

We all need to be here. We all need to share, advocate, learn - and, yes, laugh. So much has been done, so much needs to be done. I'll share more when we get home. Right now there's a workshop on Supported Housing and I'm on my way.

One Small Glimmer of Hope: We'll Take It

Today: a "discharge meeting" with City Hospital's psychiatric team, and the case managers for Ben who come in with an alleged treatment plan. The hospital's Chief of Psychiatry informs me that Ben's self-talk is now so strong that he shouts back at his voices at times, and it has taken three tries for a group leader to get Ben back to reality. He is decompensating. The meds he is willing to take are not working. We knew that.

Ben's new case manager, who had supervised (ha!) the transition from supported housing to independent apartment a month ago, does not look me in the eye. Not once.

Thankfully, the Doctor rejects the caseworkers' new treatment plan for now - because Ben is simply not ready for it. I breathe a sigh of relief, and together we all work (well, mostly the hospital staff and me) to see what we can do now, while Ben is still in the hospital, to adjust his meds. This is not easy due to the confines of state law, but it does help that I am conservator. What also will help is the way we, as a united team, choose to phrase things to Ben. I remind them that too many options is never a good thing. The simpler the better.

We go to Ben's room. He is asleep, and right upon awaking he seems like his "good self" - sweet, happy to see me, coherent. The meeting itself goes well, mostly because this Chief of Psychiatry has beautifully executed the conversation with the simplicity we'd agreed upon, and with utmost respect for Ben. Remarkably, presented with only two possible choices, Ben agrees to at least add some Clozaril to the meds he is currently taking. He feels validated, and a part of the plan, and yet we didn't give him enough options to confuse the issue.

It's a step. I'll take it. It's the best news I've heard in weeks. I can breathe again - for today.

Families and Mental Illness: Listen, please.

one constructive thing...

I woke up early this morning, grateful to have slept at all. It's finally Monday, and the main players on Ben's so-called recovery team are back at work. Maybe - just maybe - I can do something today that will help Ben, repair some small part of the damage that has been done by the recent, blinders-on, money-saving (ha!) way his recent transfer from group living was handled.

The sleepless night came by surprise. After a Fathers' Day filled with blessed distraction, I found myself with physical exhaustion but a wide-awake brain when my head finally hit the pillow. The body knows. Sleep would not come. Too many thoughts.

Today I awake in the family room, where Ben usually sleeps when he spends the night with us. The pillow and blanket are the ones he uses, and they smell of him even though he hasn't stayed with us much since moving into his new apartment. This scent, I think, is what finally lulled me into the three hours of sleep that came at last.

Ben's laundry is clean and neatly folded in the corner of the room. That, at least, was something I could do for him yesterday when the treatment world was asleep. In these three days since his relapse I've revisited the earlier stages of emotional recovery for families (introduced in Class 1 of NAMI's Family-to-Family class), as we all do when crisis suddenly rears its ugly head. Crisis, hoping-against-hope, shock, fear, guilt, sadness, anger - and now I must return to acceptance and advocacy in order to make the calls, have the meetings, figure out a way to fix this if I can. Look out. I'm about to pick up the phone.

Most helpful during last night's insomnia? I reread the latest issue of the NAMI Advocate, reread the insightful comments on this blog and my companion blog for healthyplace.com, and then wrote an entry on the latter, reviewing the four cornerstones for mental illness recovery as I see them: Medical Treatment, Community, Purpose and Structure. Ben had all that (not perfect, but still present) a month ago; now all four have been shaken to the core by the sloppy, extreme and trigger-happy transition that shook his familiar world.

Writing these posts has a calming effect, as though by taking the ideas out of my head and piecing them together on paper or screen frees me from their hold.

It suddenly comes to me that Ben does exactly the same thing when he writes - in one of his many spiral notebooks, on scraps of paper, on his hand. Maybe, for a moment, it gets the voices out of his head and into another place where he can begin to make sense of them, have some control over them. 

We are not so different, after all.

Thanks for reading this blog, and helping me feel like our story might somehow be of help.

Relapse: The Monster Under the Bed

…and it has come out once again. After six years of progress, Ben is back in the hospital again. Insert four-letter words here.

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.

Independent Living and Mental Illness: How Much, How Soon?

When a hug could fix everything...

I've spent a good part of this afternoon yelling at the people who are supposed to be supporting my son as he completes his first two weeks in "supported independent living." This was determined to be the next logical step after doing so well in his group home - that's what they told me, anyway.

Yeah. sure. Where is the support? In these two weeks, he has become isolated when not at work, has clearly (to us) somehow cheecked his meds twice, and has "forgotten" to show up for morning meds once.  He also missed an appointment with his caseworker. This, too, he "forgot"  - and they caseworker let it slide. After the initial move-in rush, Ben has not finished unpacking. I'll bet there are roaches crawling over unwashed dishes in his sink.  I hope not, but let's just say I have concerns.

Why? Well, it could be the stress of too much change too soon. After seven years in Harrison House - where he had 24/7 staffing, 7 housemates, required chores and meetings, and someone to be accountable to - Ben now is expected to live alone, and "take responsibility."  Except for showing up twice a day to take meds, he is left to his own schedule, his own decisions, his own life. Ben has lost his community, his sense of purpose, his structure and his parental figures.  All without gradual steps. It's like they threw him down a flight of stairs and said good luck.
And, oh sure, we'll take you to the hospital if you break a leg. But we won't bother cushioning your fall or providing a handrail.

Add to that the fact that Ben's school semester ended during this time, he no longer has required meetings to go to, and he has no one to play cards with, say good morning to, watch Iron Chef with. Yeah, he said he hated Harrison House and couldn't wait to get out - but even the things he did to get away from there (extra NA or AA meetings, community Clubhouse, nights spent with his family) were good for him. If not for his job, he'd he alone all the time. And that is not good for anyone.

On June 9th, I'll be the keynote speaker at Fellowship Place in New Haven CT, where they provide community to those like Ben who so desperately need it - and cannot get it elsewhere. I wish Ben lived near their program. If he would go. Things we're required to do sometimes help us the most.

Several calls to the office later, I have spoken to every possible staff member about Ben's tricks for not keeping his meds in his system. If they have to tattoo it on his arm, I don't care. Watch him taking the meds - every second - and make sure he sits afterward according to doctor's orders. No bathroom, no cigarette breaks. Come on! How hard is that? Why doesn't every per diem staff member have access to that info?But - more than that - where is the plan they promised to make this transition easier?  When I asked his caseworker, I got this response: "Well, we do a plan after 30 days, after we get to know him."

Really? When and how do you plan to know him? Do you know how a kid can fall through the cracks in 30 days? How will you know if he's isolating himself?

Will it be too late when you finally notice him?

Quote from the Fellowship Place website: "It is possible to overcome the effects of severe mental illness and move from homelessness, poverty, and despair to a life of hope and self-sufficiency"

Yes- with love, a good plan, a sense of purpose, and the right meds. What if I were not there to step in? What about the people whose families have given up?

Spreading Hope: Speaking and Submitting 28UFDXR7Y75H

My potential book publicist just described Ben Behind His Voices, and its message within, as "a beacon of hope" for those who are going through any similar challenge with a disability in a loved one. I hope so. Oh, do I hope so. That is my dream for this memoir, and for this blog: to spread hope, to reduce stigma, to open dialogues, to increase understanding and respect for those with mental illness and for their families.

I've submitted this blog to Technorati so that others can find it. To do that, I must include the code here: 28UFDXR7Y75H.  (It's in the title too - just in case)

Meanwhile, on June 9th, I will be the keynote speaker for Fellowship Place in New Haven, Connecticut.  Fellowship Place is a shining example of how important community is to those in the mental illness recovery process. NAMI reminds us that essentials for recovery include, among other elements:

• a safe and stable environment

• an educated, supportive family

• something to get involved in: work, community, advocacy

• sustaining hope and a vision of what is possible.

My Ben would not be where he is without his community - his job coach, caseworkers, house supervisors, doctors, family a friends. It takes a mental health village.  Kudos to all who serving as a beacon of hope, and to all who are absorbing it all so they too may someday advocate as well.

Fellowship Place Community

always a wrinkle: the problem with State Budgets

The wide spectrum of developments when your child has a mental illness.

Plus side -wonderful weekend with Ben. Family game of Boggle as we hunkered down in the rainstorm. Ben beat us all, soundly.  His brain when balanced: amazing.

Minus side - Monday surprise: suddenly, the group home where Ben has been living for over five years has announced that Ben will have to leave soon; after all, they are "transitional housing".  No matter that the other residents have been there even longer than Ben.  Also, despite requests, his agency caseworkers have not moved at all in those five years toward getting him on a waiting list for another program.  So now everyone will have to move on this.

If Ben were to live here at home while in transition (not a good move anyway, as I am a much better mother when I am not a policeman/caseworker too), it would mess up his benefits (meager as they are).  This is what can happen when the State decides it has to make budget cuts that make absolutely no sense in the long run for those with mental illness who are STABLE.  At last. Weigh the cost of supervised housing/stability to homelessness/repeated hospital stays. Should be a preventive care no-brainer.

Grrr.

Good news for the memoir, though! some interest!
Ben Behind His Voices: One Family's Journey through Schizophrenia to a New 'Normal'

represented by Claire Gerus Agency