Tag Archives: supported housing

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?

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.


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