Schizophrenia: Nearly Everyone is a “Long-Hauler”

We Need a Cure

The scariest thing about Covid-19, once you’ve been lucky enough to survive it, is a set of residual symptoms that are still being discovered. I’ve heard everything from “it’s a year later and I still can’t taste my food” to “I still get winded six months later and can barely walk up a flight of stairs” to stories of teeth suddenly and mysteriously falling out months after recovery.

People experiencing symptoms like these are called Covid long-haulers. There are Facebook pages and groups where stories and support are available.

But my son, Ben, and others like him? Schizophrenia long-haulers. This is the brain illness that just keeps on “giving” - challenges, changes, symptoms, side effects, loss.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

My son is doing okay - actually better than expected - on Haldol now. This older antipsychotic frightens me, because side effects like tardive dyskinesia can be irreversible. Also, it is not known to work on the “negative” symptoms of schizophrenia (things the illness takes away from the person, like ability to feel joy). Still -it’s not too bad.

Some good news: (must mention, Ben no longer lives with us, so some of this may be due to the excellent staff at his group home, and a life less dependent upon our family role as landlords etc)

• I can converse with him. Actual give-and-take conversation.

• We have actually watched an entire movie together.

• He eats my cooking again, after years of saying “smells great, I’ll have some tomorrow” (I think he had some sort of belief about my food that prevented him from ever taking a bite in those years).

• He has also gone swimming again, and plays beautifully with his nieces and nephews. In fact, they have a relationship with “Uncle Ben” for the first time in years.

• Haldol is available as an LAI (long-acting injectable) , so Ben isn’t faced with a daily decision as to whether he “needs” antipsychotic meds or not.

But, some of the sadder news:

• I do see some trembling in his hands now. Would he ever be able to work as a waiter again, the job that kept him afloat before Covid closed restaurants?

• He is suspicious of doctors, dentists and any medical testing. This is fairly new. He will not have his teeth cleaned.

• When he isn’t hyper- focused on something I see the eyes darting around the room again, and wonder what he hears and/or sees. He will NOT talk about this, or admit to it.

• He talks once again about unrealistic plans - like opening his own restaurant, becoming a college professor.

This illness never quits. The residual symptoms sure do beat the active symptoms like psychosis and crisis, but they are still hard to bear.

Everyone is a long-hauler with this brain disease.

We need a cure.

Finally...A New Word About Antipsychotics and Weight Gain

If you were asked to take a medication (for an illness you don’t believe you have) and warned that the side effects might include:

• fatigue

• drooling

• sexual disfunction and

• weight gain,

would you take it?

Silly question. 

And, to paraphrase the famous movie line, “You had me (saying hell, no!) at weight gain.”

Seriously.

Still so much to learn

This has been one of the reasons my son hates to take his meds, and refuses or pretends to swallow them whenever possible.  For years, we have worked around this, but yes. I get why.

Finally, though, there is some explanation about the weight gain, which may lead to more research and better medications.

According to new research,  the problem is  in " blocking certain dopamine receptors, known as D2-like receptors.” This is how most antipsychotics work.

But – and I never knew this before (not a neuroscientist, but I sure feel like one sometimes) - “the body actually has more dopamine receptors outside the brain than within it”.

Whoa! This is according to Dr. Zachary Freyberg, the senior researcher on the new study.

And where are these receptors? Many are in the pancreas, too, and “when the researchers used antipsychotic medications to block the pancreatic cells' D2-like receptors, that ramped up the production of both glucagon and insulin. In the body, unchecked release of those hormones could quickly lead to a loss in insulin sensitivity and chronically high blood sugar levels.”

So – the weight gain my son experiences when on these meds is not his fault.

So what now?

Researchers are looking to find new meds that don’t block dopamine, and find other ways.

Wouldn’t that be nice? Please, yes, more research, new treatments. Save our loved ones.

In the meanwhile, I will add that three things have helped my son keep his weight gain to minimum: physical exercise (he lost at least ten pounds when he began to work as a restaurant server), keeping the carb intake down (not so easy for a vegetarian, but the more he used vegetables and fruits the healthier he got), and keeping an eye on boredom eating.  the busier he is, the better his eating.

This isn’t earthshattering news for any of us watching our weight – but it has been nice to see that even on psych meds these methods can help.  

Still – when he lost his job due to Covid crash (economic, not medical), his activity went down and boredom went up.

So – please – keep that research coming.

And thanks for some good news.

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?

Treatment Pays Off in Schizophrenia, Even if "Unwanted"

One young man with schizophrenia makes the news this week because he attacked his parents with a rock. The Mom says "I am afraid of my own son now." According to the article, their son was refusing the treatment and medication available to him from the Kentucky assertive community treatment program. The treatment was voluntary. The young man said "no thanks." And nearly killed his parents.

My son, Ben, also diagnosed with schizophrenia (and a very severe case, I am told), gently lifts his baby niece out of her swing, sings a silly baby song to her and gets a huge smile from her in return. Then he showers, shaves, irons his shirt, and heads off to work.  He has been a server at the same restaurant - full-time - for over two years.

In Ireland, a man is finally committed to a mental health facility - after killing his parents with an axe. This treatment comes, obviously, way too late.

My son's phone constantly rings with texts from friends, who are trying to arrange a "game night" at home fortomorrow evening. Now he has friends again - but it took years to rebuild relationships, after years lost to hospitalizations and periods of relapse. We hope he never again needs that level of help. If Ben continues with treatment, we may get our wish. But there is no guarantee when it comes to mental health. This we know, all too well.

Five years ago, right after my book Ben Behind his Voices was published, Ben went off his medication and went back into the hospital for the eighth time. It took seven weeks to engage his willingness to "go back on meds", after which he moved back in with us - with strict rules to "follow psychiatrist instructions." Why? There was no other way we'd allow him to live with us.

some of the latest info on schizophrenia treatment

The truth is: treatment makes all the difference. That's why we, Ben's family, "require" it in order for him to live with us. And, yes, we supervise it - staying up until 1 or 2 AM five nights a week to do so. Because, without this, we might have to be frightened of our own son too. Instead, our biggest problems resemble those of parents raising a growing teen - messy bedroom, sloppy compliance with curfews, uneducated financial decisions - even though Ben is 34 years old.  Not always fun, but we'll take this level of challenge. It's annoying at worst. With one in four families dealing with mental illness in a loved one, I know many who would give anything to have "problems" like ours instead of the stigma, guilt, helplessness, grief and fear they experience every day.

Oh, we are not without fear. We feel like our life is lived with fingers crossed - because two days without treatment would change everything. We've seen it happen before.

Ben is still rebuilding his life - and his treatment is a huge part of that journey. Without it, all he has built could topple like that first straw house in the story of The Three Pigs.Treatment works - and in our case it simply cannot be "voluntary." We won't allow it.

We know what we'd have to do if Ben were to suddenly refuse treatment - refuse to allow him to live with us - and it's terrifying.We've done it before, much earlier in this process, before we understood his diagnosis. Ben was homeless for five months when he was 19 - and the threat of having to live in a shelter again is what got him to agree to treatment a decade ago.

Since then, he has slowly reclaimed his life - with the four pillars of community, purpose, structure and (yes) treatment. If any one of these pillars should crumble...well, let's just hope that never happens. Because right now Ben has a life. As he recently said to me, "I finally like who I am right now. I have a life I'm proud of. And if meds have something to do with that, so be it."

…but not disaster, if we catch it in time!

Wahoo! Does he mean it? I can't be sure. He has said this before, right before he'd been placed in his own apartment five years ago and left to "manage his illness alone." The result was the eighth hospital stay, during which his "without meds" behaviors became uncharacteristically belligerent.

So we still will adhere to our process for treatment, simply because it is working. Ben deserves treatment - and he deserves to have it supervised and reinforced if that's what he needs. There are those who will argue that he has a right to "refuse treatment."  Well, I say he has a right to have a life. With treatment, that life is filled with family, friends, love, work, a social life, a chance to mature and make decisions for himself - and a baby niece whose face lights up when she sees her Uncle Ben.

Treatment is far from perfect, but it can work. Keep improving it, make it available, fund it, enforce it. So no family has to ever be afraid of someone they love. 

Chris Harper Mercer: A Preventable Tragedy?

Another merciless, senseless shooting, this time in Oregon. Another troubled shooter with three names. As details of the life of Chris Harper Mercer emerge on news outlets, I expect, sooner or later, to find out what often is uncovered: undiagnosed and/or untreated mental illness symptoms. Duh. And a family left trying to "handle it" alone. Duh, again. Been there - am there. Except we got some education and support so we could try to help our son. We are among the very lucky families. At the moment.

As mother to a young man who has been diagnosed, and is (reluctantly but consistently) in treatment for a mental illness (schizophrenia), my heart goes out not only to victims and their families, but also to the family of this latest shooter. His father, Ian Mercer, of Tarzana, California, told KTLA on Thursday night: "I am just as shocked as anybody at what happened today".

Once again, the system closed its eyes to the need for support and left a family alone to cope.

Chris Harper Mercer was also, according to a NY Times article, close to his mother, with whom he lived. She reportedly had asked neighbors to help her get her apartment exterminated for roaches that bothered her son, who was "dealing with some mental issues."  How else was she trying to help him? Or, like so many other stigmatized families with a "troubled" relative, did she just hope she could keep the situation quiet and keep things under control?

She obviously could not. Neither could Adam Lanza's mother, Nancy Lanza, in Newtown CT. Once your child is a legal adult, the very few rights you had as a guardian disappear completely. But the problem does not. And tragedy, as we have seen way too many times, can result. Though this kind of violence is NOT the norm for those with mental illness, it is the most publicized result of the neglect of our system toward the 1 in 4 families left to cope with mental illness alone.

When will we ever learn?

When will we pay attention to warning signs?

When will we open our eyes to the need for treatment, and put a system in place to help the families left to "figure it out" themselves?

We are one of those families.  For the past four years, Ben has lived with us, because the system failed to realistically help him stay in treatment and rebuild his life.  The minute he started to succeed, budget cuts took away services he supposedly "no longer needed." That is like stopping chemotherapy halfway through, with no follow-up.

We are Ben's family and we love him. So much so, that we're willing to let him "hate" us during the two most uncomfortable moments of the day: times to take medication that he does not believe he needs. We stay up late to supervise when he gets home from his job, often between 1 and 3 AM.  There are nights when I can barely stay awake, and cannot relax until the meds are safely swallowed and absorbed.

But it's worth it. The stability of consistent treatment has helped Ben to rebuild his life. He has a job, friends, and a car and credit card in his name (!). He is starting to feel like he has a life he's proud of. But he hates those two times a day...and I have no doubt that, were we not there, he would stop treatment immediately.  He has his reasons, one of which is he wants to take full credit for his "better decisions" lately. He does NOT want to hear that his good track record "seems to coincide" with times he takes his medications.

He melts down every so often, accuses us of controlling his life, of mistakenly labeling him "insane" (his word, never mine). He then says he wants to stop taking medication -with the best of intentions to keep succeeding, of course - but we have seen, eight times, what happens when treatment stops. It's not pretty. Hallucinations. Withdrawal. Resistance. Mania. Police. Ambulances. Sometimes handcuffs. Hospitals. Work, school, money, friends - all can be lost so quickly . So we let him hate us, twice a day.

Ben has never been violent - for that we are so grateful. He hates guns, and loves people. So, no, I don't fear he would become a shooter. But I do fear for his life, and his future. If we should stop managing his treatment (someday he might simply refuse, or we might be away, and - let's face it- parents do die eventually...) where would he go? How could he function? Would his "case management team" even have an idea what is going on? Would he get in his car and drive in a distracted state?

Every family dealing with mental illness lives on a tightrope, with an anvil suspended overhead ready to fall - because there IS NO SUPPORT.

We cannot close our eyes to the people who live with mental illness. We cannot sell them guns. We cannot deny them treatment - not just medical treatment, but services and support. We cannot play ostrich and "hope things get magically better."

According to a guest commentary, Treatment Advocacy Center, "The number of psychiatric beds in the US has been reduced in the last 50 years from about 650,000 to about 65,000—about equivalent to the number of mentally ill that wound up on the streets or in prison."

Or living with their frightened, hopeful, families. Attention must be paid.  

The Stupidity of Medicare: Saving Pennies, Risking Lives in Mental Health Care

It took ten years for us to find a medication regime that not only works to help manage the symptoms of my son Ben's schizophrenia, but that he is willing to take consistently. Ten years.  Three of those have taken place after where our book, Ben Behind His Voices, leaves off - in what one reader calls "open-ended hope."  At that time, Spring of 2011, Ben was in a group home, stable for long enough to begin to piece his life back together, but still finding any possible opportunity to "cheek" his meds. He hated taking them, didn't think he needed them, was discouraged by the side effects.

Rebuilding Your Life with Mental Illness: Delicate

Finally, though, a few months after the book was published, Ben had a relapse (see Revolving Door post) and it took a lot of teamwork to get him back on the meds that work - teamwork that included Ben himself, and that's why it was effective.

What helped Ben to agree? There is a different form of one of his meds that was much easier for Ben to swallow, literally, and that he swears has no side effects. This is a liquid suspension that has to be created by the pharmacist. Does it have fewer side effects? Who knows? But Ben believes that it does, and that's what matters. He felt like - and was/is - a part of the decision that affects his life every day. The empowerment is definitely a contributing factor in Ben's adherence to his medication regime.

And now, the main medication that Ben takes is no longer covered by Medicare. At least not in the formulation that Ben is willing to take, in the formulation that he can tolerate. In order to save money, they will not cover the extra ingredients needed to create the liquid version. Pills do not work. He cannot take them, physically or emotionally. Without this specific form of his meds, Ben could lose every single thing he has fought for so long to achieve. His job. His social life. His car.

The result of the stability of consistency with his treatment? Ben has continued to rebuild his future; in fact, he has far surpassed the modest hopes presented at the end of my book. Yes, despite the severity of his schizophrenia (many doctors told me that his case is "very severe"), Ben not only continues to attend community college, but now has held a job as a restaurant waiter for ten months! He is one of the best waiters there, the only one who has customers come in and request to sit in his section.

He, also miraculously, has started to have a social life. He has friends. And he is driving a used car that he saved very slowly for. It's not fancy, but it has added to the fact that he is now feeling like a man. Though he now lives with us, he has earned the position of no longer feeling embarrassed by his life. Sure, he has to be home twice a day for us to supervise his medication, but it's a small price for us all to pay, for the fact that he is feeling good about himself, realistically, for the first time in forever.

All it takes, as we know all too well from experience, is two days without his treatment and he will be back in the Emergency Room, waiting for a bed in the psych unit. (This has happened eight times before.  Trust us. Only two days to go from employable to certifiable).

We Need Foresight, not Band-Aids!

So - I offered to pay for those extra ingredients myself. $80 per month. Not so bad - for me. But what if Ben were alone, no family to support him, living on the meager disability payments that are supposed to cover room and board but do not? Do you think he could find $80 per month? Can others in that situation? No. So the result would be: not taking the medication. It's one step off a very steep cliff - and the fall is not pretty.

Unfortunately, my relief that $80 per month (challenging to find, but we'd manage) would solve our problem was short lived. The pharmacy called back to tell me that it is illegal to charge me for part of a medication. We have to pay for the whole medication - hundred of dollars per month. The only other choice? He has to take the pills, and Medicare will only cover one formulation of those: the ones that Ben finds impossible to swallow. We do NOT have hundreds of dollars available per month after bills are paid. Most families don't. But what choice do we have? This is NOT FAIR - to Ben, or to us.

Why did Medicare make this coverage change? To "cut corners", to "save a few bucks." But, in doing so, they are risking - no, endangering- my son's life.

How stupid and shortsighted can you get? While Ben is not violent by nature, others with untreated schizophrenia can be. Or their intentions are good, but the "voices" convince them that violent actions will lead to the good outcomes they desire.

How many shootings in movie theaters do we need to know that we need to provide treatment for mental illness? How many news stories of untreated schizophrenia (despite desperate families begging for hospital beds, enough days of help, enough support for staying in treatment and taking steps to recover one's life and dignity) does it take to get smart? To provide support for a chance at recovery?

Deeds: “The system failed my son”

When mental illness goes untreated, lives are endangered. The lives of those living with the illness (who wind up in jail, homeless, or dead), and the lives of those they could hurt in the attempt to obey their hallucinations. Aurora: untreated mental illness. The attack and suicide of Senator Creigh Deeds' son Gus: no beds available in psych units for the help they begged for. Virginia Tech shootings, the Unibomber's plans, the list goes on and on.

Treatment could have helped them. Treatment could have prevented tragedy. Saving pennies is not the answer. Provide treatment, structure, community, and purpose: the four pillars of recovery I will explore in my next book, Ben Beyond His Voices.

Meds alone do not change lives challenged by mental illness. But, for many, they sure do help provide the stability that is needed to rebuild futures. Take this away from my son - or even change the routine - and his carefully structured rebuilt life can come tumbling down faster than you can say "tax break."  Too many federal and state budgets are cutting mental health funding to make the numbers look better. And look at what happens every single time you try that ploy. Lives are lost, and much more money is spent on the tragic results of this lack of foresight.

Prevention is cheaper than tragedy. Medicare, Don't be stupid. Let my son, and others like him, have the treatment they deserve. Give him back the meds that work. Let him continue to be the taxpayer he has fought so hard to become.

Encouraging Treatment: Loving Parent? or Cruel Dictator?

(repurposed from my final blogpost on "Mental Illness in the Family" on HealthyPlace.com)

Two things happened last month that stirred me to revisit an often-examined question:

Am I too involved in my son’s life? Have I “stolen his manhood and his rights” by insisting on treatment?

One reminder came in the form of a reader’s book review on Amazon.com forBen Behind His Voices, calling it a “Testament to Abuse of Power and Parental Authority,” the only one-star review in a sea of 5-star praise and gratitude. Clearly, a man with an agenda, so I didn’t take it too personally, but this is not the first time I’ve been called an over-involved parent. On the other hand, I’ve also been criticized by others  for not “stopping” Ben from dropping out of high school, for “allowing” my son a period of homelessness in Idaho and “letting him fail” when he gained and then lost five different jobs after he returned.

And then there is — the question of “forcing” Ben to take medications to help restore balance to his brain. The second reminder came from a voice student of mine, who shared how well his son with schizophrenia was doing without meds, having “learned to recognize the voices and deal with them” instead. Of course, that’s wonderful. Some people, I understand, can do that — but often it takes all of their energy just to keep those voices at bay. And then there are those, like Be, who cannot, in a million years, manage the full-time job of keeping his inner thoughts (or voices, or whatever they are) quiet enough so that he can attend to the outside world. Elyn Saks clearly outlines her unsuccessful attempts to get off meds in her memoir The Center Cannot Hold; in our family, we have seen, all too frighteningly, what Ben’s life becomes when he doesn’t take his medication — wildly wandering, constantly mumbling, lost in his own world, relentlessly pacing, capable of lashing out. He is lost to us then and, I believe, to himself.

In the Name of Love. (mask created by Young Adult with Schizophrenia)

But with the treatment we “insist upon?” He is working at a job he loves, is finally having a social life with some friends who enjoy his company, is studying at college part-time, and enjoys riding his bicycle, taking walks, and even cooking. He lives with us now — which is the parenting contract lasting a lot longer than we’d ever planned. But he has a life. He tells us how happy he is. But he does not ever credit the medication for his success. He needs to feel he is “totally responsible” — which he is, of course. His ambition, personality, charm, intelligence are what has helped him to succeed. But without the treatment, his illness clouds those wonderful qualities. Treatment has allowed him to shine through. Ben, no longer “behind” his voices all the time.

We applaud his independence, and hope he has a car and home of his own someday.  We’d like our lives back, too, believe me. But not at the expense of Ben’s life. And right now, being part of the family is something he loves. He had his own apartment once, a recipe for disaster though we’d had high hopes.

So, dictator Mom makes sure he takes his meds and does his chores. We also provide rides to and from work when we can — which is most of the time (one of the reasons I often work from home). If we can’t, we trust him to figure it out.  We are parenting the way many parent adolescents: let the rope out, carefully, a step at a time.

Some, including the reader reviewer above, advocate for “patient’s rights” to refuse treatment. We advocate for Ben’s right to have a life, to rebuild his future. He is happy, adores his job, participates in activities with family and friends -  and it can all fall apart if he stops treatment. We have seen that happen at least ten times in the past, and are happy to be called “dictators” if it means that Ben will be in the world, able to have a life.

It's his right.

How Families Slip to the End of the Rope: Mental Health System Cracks

As we approach the third Anniversary of the publication of Ben Behind His Voices, the big question remains. How would Ben be doing without family support? Have there been any improvements in the system that failed my son, and our family, so many times in the past?

Want an update? If you missed it in an earlier post, here is the progress since the last page of the book (where Ben is still living in a group home, back in college classes, and doing some volunteer work). Many of the details are outlined in earlier posts (check category "How is Ben Doing Now?"), but here is the current picture, about which I am so grateful:

• Ben continues to take college courses, 6 credits at a time.

• He lives at home with us, and pays rent. (this after a disastrous housing change from the group home)

• He has a JOB! He is a waiter in a chain restaurant, and absolutely loves it.  He is often in the top three for tip-earning, and has often been asked to stay and supervise the closing process. Yes, amazing.

• Although he had a roommate here for awhile, that ended badly (with the roommate's addiction and connected behaviors) - but Ben has managed to salvage the start of an actual social life now. One step at a time.

Help Us before we Get Here!

Still. All of this progress can go away in record time - and often has, in the past - if something interferes with the meds he takes.

Families like ours walk a tightrope, struggling to balance all the elements of progress when someone we love has a "neural difference." And we cannot do it alone.  So it really pisses me off when our competence creates laissez-faire among the people supposed to be our support.

1. Last Friday, I noticed we were almost out of Medication A (Ben takes 3 things). So I called the pharmacy to order more.

2.They could not place the order because they had not received paperwork from the case management team. So I called his case manager, and also sent an e-mail. No answer.

3. Had to wait until Monday for further action. (No one works on weekends). Didn't think it would be an issue.

4. Monday: Called pharmacy again, still no paperwork, which was supposed to have been faxed from the Lab ten days before. Went to the Lab in person. Though they recognized Ben's face and confirmed he had been there recently for bloodwork, this visit somehow was "not in their system". So we did the blood work again, just in case. Thank goodness we did.

5. Meanwhile, we are now dangerously low on Med A. If Ben doesn't have a full dose of it, he will exhibit a  serious behavior change at work tomorrow, jeopardizing everything he has worked so hard to achieve.

6. I call his case manager again. Turns out he is on vacation (no one had told me, and there had been no out-of-the office email reply). Voice message says call the main number, where they tell me to talk to the nurse. I do. He says nothing can be done without the paperwork, which I had assumed had been faxed, and had counted on the case management team to notice if that hadn't been done. Back to the front desk/main number. They then tell me to call another case manager covering for Ben's, but that she is out to lunch. But I can leave a voice mail message.

7. I call the second case manager, leave a message. Her voice mail gives the wrong date and has no mention of not being in the office that day.

8. I wait three hours. No call-back. So I call the main number again. "Oh, didn't they tell you? She's on vacation." No they did not.

9. I call the nurse again. He spends ten minutes telling me why he can't do anything to help me because the NEW paperwork (from this morning's blood test) is "Pending", and the old paperwork had never been faxed. I begin to beg, plead, then finally yell. Why am I supposed to do everything, keep track of everything, supervise the meds, drive my son everywhere - and yet the one or two things I ask his "case management team" to help with - keep track of the paperwork, including making sure his benefits are intact and meds are on track) slip through the cracks? When they are being paid to "manage" his case?

10. Finally, in desperation, I call the pharmacy, which is about to close. They, amazingly, offer to help by giving me enough of the meds to get us through until the paperwork in processed the next day. 

…but not disaster, if we catch it in time!

Crisis averted. But - if not for an empathetic pharmacist - Ben could have severely damaged his reputation at work. And the fallout from that would truly have been devastating to him.

So - case managers - if you are lucky enough to have a family helping in the recovery process (and most of us want to, if we just get enough information, support, and resources) - PLEASE, at the very least:

• Let us know if you are going on vacation, and who is covering our case

• Have the front desk be aware of days off and what else a family can do

• Notice if paperwork is late. Call the family, and your client.

• Hey - please don't wait for a crisis. Call your client once in a while and find out how they are or if they need anything.

We may seem like the "easy case"  because families do a lot of the work - but believe me, we need your support.

Do we have to be a squeaky wheel to get it?

Does there have to be a crisis to get some help? Some answers?

Listen, Ben is my son and I love him. Like any loving parent, show me the way to help and I'll do it. Ditto my husband, my daughter, my son-in-law. But the question for all of us - not just our family, but any others dealing with a family member with special needs: What would happen if we couldn't be here? What will happen when we are gone?

Families cannot do it alone.  The mental health system is complicated, full of red tape, hard to navigate, and full of holes and cracks. Don't let us slip through to the end of our ropes.

Thank you. 

Families: Has the mental health system driven you to the end of your rope? How? Feel free to comment.

"Hearing Voices" Movement...Not For All

As the mother of a beautiful young man who struggles with schizophrenia every day of his life, I am always tempted by magical thinking.  What if Ben's symptoms could be brought under his control without medication? What is he could somehow manage the hallucinations himself, if he only "understood" their origin?

Our Brain -How Much in Our Control?

Oh, how I wish.

There is a growing movement of those who are doing just that, they say.  I have met a few of them, heard their theories, congratulate them on their success, and wish them every happiness.

My son, however, would be harmed by this  "hearing voices" movement - or, in the US, something called Mad In America. I'm glad it has worked for some - but it is not for everyone.

Susan Inman talks about this in Huffington Post,  Canada:

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist "voice hearers," as some wish to be called. Unfortunately, most of these groups don't want to recognize the very different needs of people with severe mental illnesses.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.

Susan is the author of After Her Brain Broke: Helping My Daughter Recover Her Sanity. She is a Mom/advocate like me, with many academic achievements to her credit as well.

My comment to her post follows. A slightly shorter version appeared in HuffPost.

What do you think?

We are all "a little bit mad", if you count a mere touch of some of the symptoms that affect the life of my beautiful son, who has lived with severe schizophrenia for over 15 years.

Sure, we all live with some unwanted thoughts, with superstitions and rituals that comfort us somehow, with moods and desires that vary for many reasons. But most of function. We work, we love, we keep commitments, we plan for our futures. We know the difference between thinking, or wondering, about jumping off a bridge and actually doing it. We have a "thermostat of reality" which seems to save us from disaster.

My son Ben, however, without his medication, has no such thermostat. Trust me. Time and again, when his meds levels drop, he loses jobs, friends, purpose and - most sadly - any sense of joy.

Surely medication alone does not a recovery make. We, all of us, need some level of structure, purpose, and community to thrive. This varies with the individual, as does the level of need for medication.

The "hearing voices" concepts may be a helpful element of recovery once a level of stability is reached, but to assume that the movement is for everyone - much as we wish it were true, believe me - is not only shortsighted but downright dangerous.

Ask any family who has lost a loved one to schizophrenia's voices. Ask any family whose loved one has been a victim of someone who listened too hard to the voices, and could not stop. Ask the folks who attended a Batman premiere in Aurora, Colorado.

We need research. We need better treatment options. We need the right to find what works for each person who lives with serious mental illness.

Thank you, Susan.
Randye Kaye - author, Ben Behind His Voices: One Family's Journey from the Chaos of Schizophrenia to Hope

"Silver Linings Playbook" and Meds: Why the Secrecy?

At the end of the movie Silver Linings Playbook, when main character Pat Peoples is about to embark on the next, happier, more stable part of his life, I think he says something to his ex-wife about doing much better because he is focused, determined, physically fit - and (shhh!)taking his meds.

I think he says this because it's muttered almost under his breath - like it's a big secret we don't need the audience to know. As if he could do it all by himself without those nasty "drugs".

Really? Most of the one-out-of-four families who deal with mental illness will say that, while all those other elements of recovery are also essential (love, purpose, helping others, exercise, structure) , they could be entirely useless without the medications that stabilize the brain. Albeit not perfectly.

Does Pat Peoples Take Meds in Silver Linings Playbook ?

One quote from the book:

"...a woman who knows all my secrets, a woman who knows just how messed up my mind is, how many pills I'm on, and yet she allows me to hold her anyway",

suggests that Pat did, after initial resistance (which we see in the film), take his medications (which we might see in the film, but it's left unclear).

How nice it would be if people like my son Ben, diagnosed with schizophrenia, could see a movie hero who learns to accept that his meds do help, openly swallow them in the movie, and acknowledge that they have been part of his recovery.

Thank You, Pharma Companies and Reps

In the past year, I've had the honor several times of addressing pharmaceutical reps to tell them how much their work matters. These reps have, well, a bum rap. The face stigma of their own, portrayed as money-hungry, aggressive, pill-pushers. I speak to them in my keynote asauthor and Mom, tell our story, and remind them that that without new developments in medication - which it is their job to make available - my son might not be where he is in life.

One comment from a recent attendee:

"Your story inspired our entire sales force to continue working hard to 'bring value to life' for patients and caregivers alike.  I can’t begin to tell you how moved other members of the company from other sales divisions were to hear your story—it really helped put a face on schizophrenia and the many challenges and hurdles faced by all concerned."

So - if you research, develop, work for access, make available, or otherwise help to bring new meds to people like my son - thank you. Keep at it, because many of these meds could certainly be improved. But you give our family hope.

Even if my son still feels he needs to hide the fact that medication is part of his recovery. Even if he wants to think all the success is due to his own willpower and drive.

Recovery Needs Many Things - Internal and External

I am a big fan of drive, exercise, community, purpose, and a positive attitude. But, where mental illness is concerned, those qualities are usually not enough - not without meds, especially in people as young as my son.

Maybe, someday, there will be a popular movie that, loud and proud, gives medical treatment some credit too.

(Still - I loved the movie.)

Beyond Hope, to Promise: Treatment Works

For the first time in years, Ben has spoken to me about goals - and he actually has some, that he is willing to share with me.

When you have a goal, it can be risky to say it out loud. What if you fail? What if your dreams don't come true?

Treatment, the Foundation for Progress

For so long, Ben has been busy getting his life back to where it might have been had his progress not been interrupted by psychosis, hospitalizations, and regrouping. Step by small step, he has returned to college part-time, and recently celebrated a full year of part-time employment. But we have not dared ask, "where will this all lead?" or "What are your plans when you get your degree?". We didn't dare. It has been enough, the reality of these first steps. We tend to stay focused on today.

But Ben must be gaining confidence, as he now talks about wanting to "give back to the world" - as a teacher, perhaps, or an author. Will he get there? He just might. But, not all overwhelming goals, I am encouraging him to take one step toward each one and re-assess as the view gets closer.

But none of this would be possible without the treatment he is receiving for his schizophrenia. None of it. Without treatment, he would most likely be homeless, in jail, in a nursing home, or - let's just say it - no longer alive. Now, with treatment (medical, and also emotional and structural),  we have hope, and have taken one more small step:  his life also has promise.

Treatment is too often denied, not funded, not mandated - and that is a shame. Watch this video from the Treatment Advocacy Center about how Treatment Makes a Difference. Because it does. And we must keep fighting for it.

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.

Schizophrenia and "Perception": Will it be Accurate?

Tonight TNT unveils a new series called “Perception” , in which Eric McCormack plays a brilliant neuroscientist with a full-blown case of schizophrenia.

According to the NY Times, here is the premise:

Colorful characters that only Pierce can see pop up to help him solve murder cases he consults on for his spunky F.B.I. buddy, played by Rachael Leigh Cook. These apparitions badger Pierce with what appear to be non sequiturs and useless information until the last 10 minutes of an episode, when the light bulb goes on, and the murderer is identified.

"Perception" and Mental Illness Stigma

Eric McCormack plays a neuroscientist in “Perception” on TNT. - JanThijs/TNT

The review goes on to say that this is "TV-Fantasy schizophrenia" - so what does that mean? The hallucinations are useful? Cute? Just a manageable feature of a slightly-eccentric personality?

Will the fictional Daniel Pierce take meds? Will he have had any hospitalizations in his past? Does his family stick with him? Does he have friends? Is he stigmatized at all by his illness?

Will this show help spread misconceptions about schizophrenia as a cute illness, handy for solving crimes, rather than an acute illness?

We will have to wait and see. I'm taping it tonight. I've suggested to Ben that he watch it too, but I can see that the idea made him uncomfortable. So that, too, will have to wait.

Richard Dreyfuss on Living with Mental Illness

Bravo, Richard Dreyfuss. Not only one of the best actors of our time, but he is speaking openly about his experience with bipolar. As reported last week in the Herald Tribune in this article by Barbara Peters Smith, Richard recently appeared in Sarasota, FL  to speak on “Living With Mental Illness” for the Mental Health Community Centers. The event was sponsored by the Sarasota Memorial Healthcare Foundation. 

In the accompanying interview, Richard says,

Dreyfuss:On an airplane the Delta magazine had an article about corporate executive depression. It said, “If you have any four of the next 14 …” and I had all 14.I got off the plane and called my psychiatrist and said, “we have to kick this into high gear. We have to start and get a solution. If we don’t, there really is no reason for me to go on.”

Herald-Tribune: About what time was this?

Dreyfuss: This was in the middle ‘90s. He said the wisest thing I’d ever heard. He said, “Richard, somewhere in your head is a faucet that is dripping either too quickly or too slowly, and we can help you.”  I can’t tell you the relief that lifted off my shoulders at that moment.

He goes on to share a lot of his experience, and his feelings about how the disorder has affected his life - from birth. Richard has joined the ranks of those of us - people affected by mental illness as well as those who love them - who refuse to feel shame or blame because of a physical illness of the brain. Someday, mental illness will receive the same respect (especially in research and availability of treatment and services) as other disorders. Each story, we hope, bring us closer to replacing stigma with understanding and a vow to improve the way things are.

Here is the comment I left on the site:

Thank you Richard, for sharing so honestly and openly. The fact that the medication that helped you the most was discontinued due to "lack of profit" is appalling. As the mother of a son who has schizophrenia (and I am so very proud of both my children, too!) I can tell you that while his medications are far from perfect, it is that  certain combination that has enabled him to stabilize enough to become an A college student and a valued part-time worker. As for our love? He always had that - but it is easier when psychosis is kept at bay.  The right medication can begin the process. Add love, support, purpose, community and understanding instead of stigma, and we've got a chance at realizing potential. I love your work - always have. And now I can appreciate what you may be going through as a person. Thanks for telling.
best, Randye Kaye
author of "Ben Behind His Voices:One Family's Journey
from the Chaos of Schizophrenia to Hope"

More than just Meds: Recovery Reminders

It can be so easy to get used to success, then to keep wishing for that higher bar.  I've read that it's a human to forget extreme physical pain - otherwise why choose another bout with labor and childbirth? - but what about the emotional pain attached to crisis periods in mental illness?

All it takes is one gentle reminder and the feeling of stress comes running back in.

We've had, now, almost five months of stability with Ben, ever since the family stepped in to "help" his official care team.  He is blossoming once again after a painful summer reminder that without the right medical treatment as the cornerstone of recovery, the house built upon that foundation can crumble like a house of cards.

Watch for Effects of Change

These days, it's almost easy to forget that Ben has schizophrenia. He just went to his first-ever employee Holiday party, which means he is valuable enough to his company to have lasted this long, even into the off-season. His job has provided so much for him: purpose, community, focus, and a paycheck.  He has something to talk about when someone asks, "so, what do you do?" He loves his job and feels like a person again.

His two college courses, too, have been a source of purpose, structure, and pride. What I wouldn't have given, over a decade ago as his illness was developing, to have heard this from one of his teachers:

"Ben, you did your work with dedication and care for details, you contributed to the class with intelligent questions, comments, and a great sense of humor... You are an A+ student, and your final grade for this class is a well deserved A. It was a true pleasure having you on my class. I hope I'll have the fortune of having students like yourself in my classes in the future."

Wow - yes, I am serious. Those are the comments from one of his professors!

That almost makes us forget that, five months ago, Ben was wandering the halls of a psych unit, talking to the voices he never admits to hearing. The sudden lack of treatment services he had experienced during the summer of 2011 had led to a lapse in his intake of his crucial meds, which in turn led to a refusal to return to taking them at all.

We almost, I must remember, lost him again. But thankfully he returned to what his psychiatrist says is  his "former baseline."  How? Meds in place, the other pieces of recovery could be rebuilt:

Purpose, Structure, and Community(family, friends, co-workers, etc.)

Love helps too. But it didn't seem to stick so well while Ben was in crisis.  Now, Ben is healing - and I see signs of emotional growth I have not seen in years. He cares about school. He is thrilled that, at last, he can afford to buy presents for the family with his own money.

Still,  recovery (or stabilization, maybe a more accurate term) can be fragile. There is so much more to it than the medication cornerstone. This week, Ben seems just a little bit "off" at times.  Is it the meds? Always the first thing we wonder. But I suspect his subtle agitation and occasional lack of focus right now is due more to the thing that affects us all, some more strongly than others:

Change.

In the past few weeks, Ben's school semester has ended, his work hours shifted (holiday closings), and he has been experiencing the excitement of giving/getting holiday gifts. Even as a little boy, Ben was always a little "off" as holidays and birthdays approached. Like many of us, the anticipation and uncertainty was almost overwhelming, disrupting the predictability of life. That's one reason we like this time of year, and also a reason many have an opposite reaction as extreme as depression.

It's good to remember that schizophrenia recovery is not just about meds. Ben was anxious around the holidays as a child, so why should his basic nature change now?  It isn't always about the meds - it can be about life. Purpose, structure, community: these things help shape us all.

So we will keep our eyes open, naturally. But also our minds. When life settles into routine again, I think Ben will too.  That has been his pattern since way before his illness entered our lives.

Happy holidays to all!

The Miracle of Ordinary

"When you've lost the miracle of ordinary, and you get it back, you never forget to be grateful...to say, This is a really good day."

Those are the last thoughts expressed in my recent interview with Mark Herz on WSHU, a Connecticut affiliate of NPR. Listen to the WSHU/NPR interview here ( 4 minutes)

Yes, ordinary can be miraculous. Cooking a dinner together. Driving your child to work. Nagging you son to finish his Shakespeare essay, when only three months ago he was wandering the floor of a psychiatric unit, unable to focus on conversation for more than a moment.

BBHV sighting: Barnes & Noble, Norwalk CT, Psychology face-out next to Jung!

Our tendency as adaptable beings is to adjust to new situations so quickly that we may forget to notice the joys.  Like that first night when you can actually breathe through your nose again after a cold...or the moment the fridge hummed back to life after the power blackout. The first time you see your memoir displayed at the bookstore. Pure joy! But days or hours later we shift our gaze to the next hurdles and may forget to be happy. It only takes a moment to step back and reignite appreciation. I want to remember to do that more often.

Awareness.  And especially this week, which is designated as "Mental Illness Awareness Week." Not just mental illness, but mental health. As I look back on the book launch party on Sept. 20th, the miracle of Ben's attendance at the event, and the support he chose to show, is indeed miraculous to me.  As the next events unfold (more interviews, upcoming appearances - see the news/events page) I hope that while Ben Behind His Voices does spread awareness about mental illness, it will also spread the messages of understanding, respect, hope, and the value of a therapeutic alliance between families, patients and healthcare providers.

And I hope I never forget to value the precious good days that are beautifully ordinary - and that the book helps reignite that spark in its readers.

PBS, ABC, Boston Globe, and the Flu

when mommy's hug could cure

Ben has spent the night - we've all been there - worshiping the porcelain throne.  Either a stomach flu, or spoiled Chinese food (thanks, Hurricane Irene), but who cares why? Poor thing is in pain. No mom wants to see that. Plus, he is whining! Ah, yes, nothing like a 29-year-old whining "Mommy...." - but whenever I'm sick I want to do the same thing, and my mother's been gone since 1994.

There's an additional issue, of course, when your child has schizophrenia. Will he, can his body, keep the meds down? Last night we carefully orchestrated the meds between episodes, and since they are mainly in liquid form we can only hope most of them got into his system somehow. We counted (believe me, we both had one eye on the clock) 55 minutes from ingestion to, um, rejection.

Ben's main concern, despite his pain? "If I throw up, I won't have to go to the hospital, will I?" I thought, at first, that he was over-dramatizing his stomach pain - but then realized he was worried about having to go back to the psychiatric unit for missing one dose of meds. I'm beginning to think this last relapse really affected him - and that maybe - just maybe - he is connecting the stay to his low levels of meds at the time.

I hope so. but - as always - one day at a time. And this morning, thankfully, he is on the mend.  He had to call in sick to work, which he hates, but at least he's staying put on the couch. And his first question this morning, after making sure we called his employer, was: "When should we do meds?"

taping 9/7/11 - watch for airtimes

Meanwhile - The Boston Globe ran a feature on the book recently, and I will travel to Washington DC next week to appear on an ABC-affiliate talk show live at 11 AM, then tape "To the Contrary" for PBS.   First really big-time appearances for the book. What if they ask me what my qualifications are? I wonder that, too, as readers are starting to write to me, asking for advice that I wish I had for them.  All that I know is in the book, and though I wish I could solve others' problems I know I can't. Here's my thought:"

I'm just a Mom who never gave up on her son - but who also learned that, someday, she might have to."

Please visit the new "Press Room" page,  for info and links to more articles and interviews.

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

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.