Tag Archives: supported housing

The Parents Network: Eyes, Ears, Heart and Soul

bipolar nation schofieldYesterday 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. Continue reading Risk: The Price of Independence?

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

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).

Come and celebrate!

Focus on Hope: Can We Stop the Revolving Door?

Baby Croc Toy
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.

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!

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

mental health bandaidsToday: 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. Continue reading One Small Glimmer of Hope: We’ll Take It

Families and Mental Illness: Listen, please.

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.

one constructive thing...

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. Continue reading Families and Mental Illness: Listen, please.

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. Continue reading Relapse: The Monster Under the Bed

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?