Tuesday, November 27, 2012

Is There any Hope?


Over on Pete Earley's blog, he's posted a letter from desperate parents who can't get help for their son.  Pete, as you may know, is a former Washington Post reporter, author of many books, and a mental health advocate. Yesterday, Pete answered the letter with 10 suggestions.  He solicited a panel to take turns responding, and today, I'm the one with suggestions.  Here's the letter, then do surf over to Pete's blog and check out the responses, more will be coming all week.

Dear Pete,
We have tried to get our son professional help. I think he has bipolar disorder, although he possibly could have schizophrenia. We know he has an alcohol addiction. He has not cooperated with hardly anything, and we’ve been unable to get him to go to our local mental health center, although officials there said he is eligible for treatment.

We feel like our hands our tied. The few times that we’ve gotten him to a psychiatrist, our son denies that he is sick, won’t take his medicine, and is extremely hostile to doctors for the short time he’s being seen by them. We’ve had him in our house for several months with his erratic moods and high level of anger. Yesterday he asked to go to a homeless shelter and he is now on the streets. If we try to visit him, he runs away.
His dad and I are at the point where we feel resigned that there is no hope nor help for our son. The system has worked against us at every turn … and he needs help. People have recommended “he needs to hit rock bottom” and that we need to wait for him to *want* help. We simply don’t know what to do. Do we wait for him to hit rock bottom on the streets where we know he is not safe?
In our view, the mental health network has been ineffective at best, and is rolling the dice with people’s lives. Now we can see how barriers in the mental illness system keep people from receiving basic services. This has been hell for his dad and me, and I’m sure worse for our son.
If you have any advice please let us know.
-A concerned parent.

27 comments:

roblindeman said...

Uh-oh. I feel coercion coming on. But hey, it's for his own good! (Sorry, I haven't had enough coffee and I'm crabby - I'll step out of the living room)

roblindeman said...

[From Dinah's post at Pete Earley's Blog]

"If someone is obviously ill and obviously dangerous, meaning they are either violent, threatening suicide, or are dangerous to themself or others, then there really is no choice but to involve the police. (italics added)"

Of course there's a choice. There is always a choice NOT to coerce a free citizen who has committed no crime. You can show love, concern, compassion, food, warmth, shelter. It simply does not follow that you must have him incarcerated.

Jen Daisybee said...

I thought you gave excellent advice, Dr. Dinah Miller. As someone who lives with Schizoaffective Disorder, and has been homeless several times, and was floridly psychotic for seven years *(undiagnosed), and has been and is still misunderstood by her family, I can tell you that there is a lot a family can do to help. Then there are also limitations. I think one thing I would add would be for families to check the National Alliance on Mental Illness, where we hold Family to Family courses, which are free and held throughout the U.S. in many NAMI affiliates, that last for twelve weeks and teach families how to cope with their loved one's illness. Also, NAMI has free Family Support groups. And then there are groups like Alanon, which I've gone to because of all the alcoholics in my own family, where they teach you that there is only so much you can do.

As far as getting the police involved, if somebody's got a weapon, or they're being violent, then yes, sometimes you do need to get the police involved and there is not always a choice about it. I once bought a gun with which I intended to blow my brains out, and it was the police who saved my life by putting me in handcuffs and carting me off to the hospital. I now, seven years later, have been a volunteer speaker for several years in the local Crisis Intervention Team Trainings for police officers in my community who want to learn how to handle mental health crisis. C.I.T. is an international program, which Pete Earley writes about in his book Crazy, and I highly recommend people check it out.

Anonymous said...

Listen, if he doesn't want it, you cannot force him. As Rob said, you can show him love and compassion and food and shelter, or remove yourself if you feel you can't handle it. But the parenst are writing about THEIR struggle. If the son does not want the help -- you cannot force him (assuming no crime committed or violence realistically threatened against someone else). The resources are better used elsewhere.

Anonymous said...

Expanding on Rob's point, I wonder if the son felt like he was being coerced and that is why the visits didn't go well with the psychiatrist.

I thought this comment by one of your colleagues, Dr Mark Ragins, was applicable to this situation. He had commented regarding the controversy about medications taking a backseat to the recovery movement.

http://www.huffingtonpost.ca/marvin-ross/mental-illness-recovery-movement_b_2164069.html

""Many people who take a long time to engage in treatment have significant risk factors that impact their outcomes in additon to not taking meds. Many places are now using intensive psychosoical interventions with first break psychosis instead of jumping straight to meds to build relationships and coping skills and avoid antagonizing people. Also it's unclear whether meds themselves may have long term negative effects.""

AA

roblindeman said...

Coercion takes many forms, and starts early. There is a CHILD in my practice right now who was threatened with incarceration by his psychiatrist if he did not take meds (not yet prescribed). The child's school threatened to transfer him to another (public school). Talk about choices! What choice does this mother have???

Anonymous said...

Rob,

I keep trying to respond to latest post but words fail. What do you do as a pediatrician when you have a situation like that?

Yeah, coercion is really good for your patient's health. A big fat sigh!

You might want to suggest the mom visit www.ablechild.org

roblindeman said...

I expected responses like anons: How can a pediatrician, who really cares about his patients, not assent to involuntary incarceration or forced medication?

That anon and others cannot understand this only demonstrates the grip-strength of the Therapeutic State.

What I do, since you asked, is I watch and weep as my clients' Liberty is taken away from them.

FWIW, I'm still waiting to meet the first client who has benefited from being coerced.

Anonymous said...

Rob,

My apologies as I didn't mean to imply that you were assenting to this. I can't imagine being in your position and feeling so powerless, especially since I know how passionate you are about this issue.

This is is a wild brainstorm but I was wondering if you had thought about contacting Bob Whitaker and asking if he knew of colleagues in similar positions that you could network with.

Here is a link to this site:

www.madinamerica.com

AA

roblindeman said...

I follow Mad in America on my feed burner, and I've read the book by the same name as well as Anatomy of an Epidemic. I hadn't considered contacting him. I'll give it some thought. Thanks, man.

Anonymous said...

i agree with Rob. There is no mention of the son being violent or committing a crime. People are allowed to feel anger, the last time I checked. Their son is angry, he won't take his meds, hostile with psychiatrists, would rather live on the street than in their house under their rules, in other words their son isn't behaving the way they think he should.

My aunt diagnosed with paranoid schizophrenia is not on the street. Why not? Because her parents made sure that her apartment and utilities are always paid. There are no strings attached, no threats, no "If you don't take medicine, we will try and make you," no police, nothing but parents who love their adult daughter, and while they wish better for her it is the way it is. THey don't make the provision of food and shelter dependent upon her meeting their demands. That doesn't work for some people, and maybe these parents might try a softer, gentler approach. Have the parents in the post tried renting an apartment for their son without any strings attached, because they would rather him be housed than on the street? It doesn't sound as if they have. My grandparents were not rich, and they managed to always pay for a cheap apartment for her, not sure why more don't try that route, rather than all the threats and coercion.

I would probably have done the same thing as the son in the story, if my parents had threatened or coerced me into psychiatric treatment. Someone suggested involving police. If a family member ever did that to me when i had committed no crime, i would move to another state. That kind of thing wouldn't go over well with me. I see a psychiatrist by my own choice, and when and if i decide to stop seeing him that will be my decision to make.

Anonymous Coward said...

My brother got his diagnosis of schizophrenia just before he turned 21. He ran away to live in shelters after threatening my father with a knife. (In my limited, anecdotal experience this is a not uncommon way for a young schizophrenic man to leave home.) He agreed to be hospitalized when he was arrested for stealing a bicycle and threatening police, and the judge gave him the option of avoiding jail by checking into hospital. In this case, natural consequences worked well. (Another young man I know jumped off a roof after assaulting his father and running away, and got treatment for his schizophrenia during rehabilitation for his subsequent paraplegia. Natural consequences ended up with him getting treatment, but on net they don’t seem to have worked well for him.)

My brother is now on disability, living in a rooming house. He has a mental health social worker who takes him for his depot injections every other week. For several years he did well, working up to three days a week as a dishwasher.

Now he’s looking for work, but he smokes so much weed that his meds barely keep him together. He can focus on the outside world for several minutes at a time, but it’s obviously a huge effort. (Which he does make, and which we appreciate.) The rest of the time he’s looking around, giggling at things we can’t see, and listening to his TV or his ipod as loud as he can make them, whether to cover the voices screaming at him or to provide a socially acceptable reason for his distraction and giggling. Because of the amount of weed he smokes, he has problems with reflux that have twice landed him in hospital with a perforated esophagus.

He’s a good guy. We want to help. We’ve seen him do better and we’d like to help him get back to a place where he can. He wants to work and have a girlfriend and go places like any normal adult, but he’s too disabled right now.

On the other hand, he’s not on the street, he’s not getting himself beaten up, he’s got enough to eat. When he needs help he asks for it.

He doesn’t have a phone because he can’t manage his finances, so I’m going to get him a basic cell phone and pay for it for my own peace of mind.

We try to motivate him to cut back on weed. We point out that it makes his schizophrenia worse, which makes it hard to get work and a girlfriend. If he can save money for something he wants, we’ll match the money. But really, he’s safe and an adult and making crappy decisions like a lot of adults do. We’re working on accepting that.

Much of hope is identifying something to hope for.

Susan Inman said...


Family caregivers for people with psychotic disorders
face many unnecessarily difficult circumstances.
I explore some of these in my latest huffpo article.

http://www.huffingtonpost.ca/susan-inman/mental-illness_b_2197789.html

007 said...

The letter is very vague. And no one can offer these parents very much useful advice without knowing more.

I do wonder how the parents knew so much about the son's reaction to psychiatrists. Were they in the room with him? That could have fueled the hostility. I don't like having other people in the room with me when I go to any doc...especially a parent. I could see myself getting vey edgy pretty quick if one of my parents was in the room with me. Who wants to be interviewed with their parents in the room? Personally, I was a failure at family therapy. The whole thing was very annoying.

It does sound like the parents are holding this over his head. They exert an ususual amount of control if they are able to get him to see a pdoc and be prescribed meds when he is not interested in treatment. Did they even try getting him psychotherapy or another form of treatment he might potentially be more interested in?

I think this is another tip off that they were in the room with the son: they knew he was prescribed meds that he will not take. How would they know anything about unfilled prescriptions? I once had an adult friend whose parents found out about his bipolar diagnosis when his sister found his medicine bottle. But that was the extent of the info they could get, because the pdoc wouldn't talk to them about his case.

How do these parents know so much.

007 said...

And I synpathize with Rob. Personally, I think schools should not be involved in medicating children. And I am uncomfortable with the amount of control they have in this matter.

I remembe hearing once about a teacher who called social services on some parents for not giving him his meds (ritalin or something). He was showing up to school acting hyper and out of control. The problem turned out to be that they WERE giving him his meds...that the school was demanding he take.

Anonymous said...

Since the term, Anosognosia, is constantly used by psychiatrists, to claim patients are in denial of their illness when they don't want to take meds, I thought I would provide a link to an article by a psychiatrist who has a different take:

Anosognosia: how conjecture becomes medical “fact”

http://www.madinamerica.com/2012/08/anosognosia-how-conjecture-becomes-medical-fact/

AA

Joel Hassman, MD said...

When it's your child, it is incongruent to give up. Sometimes caring has to hurt, it is the big picture you have to try to maintain.

Holmes and Rahe were wrong in their scale back in the 1960s, the loss of a child is equal if not greater than the loss of a spouse, in my opinion.

Anonymous said...

Like 007, i wonder about how involved the parents are with their son's psychiatric appointments. Is the son a minor? it would drive me up the wall to have my parents monitoring my psychiatric appointments. I love my parents, but if they had made my appointment with the psychiatrist i would never have gone. i would definitely have resisted their attempts to control that situation. (My therapist actually made the appointment with the psychiatrist the first time).

I also don't tell my parents what I discuss with the psychiatrist. I think it's natural that most adults don't want mom and dad that involved. Maybe they need to give him a little breathing room.

roblindeman said...

Today I consulted with the mother of a 9 (NINE) year old girl who was recently incarcerated in a mental institution for one week against her will and against the will of her mother. The institution had requested a three-week incarceration but this was denied by Medicaid.

The girl's infraction was responding to a bully in her class who threatened to stab her with a pencil. She told the boy if he did so she would kill him. The girl was taken to the nurses office where she was asked to write her feelings down. I have a copy of her note. She said she was angry, upset, and felt down. As a result she was forcibly hospitalized, or face expulsion from school.

At this hospital, the girl was forced to take citalopram, also against her will and against the will of her mother.

After release, the girl's new psychiatrist, with whom she had no previous relationship, asked that she stop citalopram and start aripiprazole, because the opinion of this psychiatrist is that my client has the bipolar disorder.

Thus a bullied child becomes a mental patient. I swear every word of this story is true. You can't make Shi'ite like this up.

Joel Hassman, MD said...

Just wait until the DSM 5 is out next year. Actually, if you think about it, should someone be diagnosed with something that really has not met criteria to be published and there are documented consequences from the diagnosis and what clinicians deem the treatment interventions without full accountability, wouldn't the DSM 5 creators be liable?

Worth considering. The negative press such a suit would create might frighten some at the APA.

Anonymous said...

Rob,

That is horrible about the kid who was bullied. I know I keep saying I am speechless but it keeps being applicable.

I mean, I knew kids getting bullied weren't being protected generally. But to put a traumatized kid in a mental hospital and force her to take meds against her will? WTF? I don't think even communist Russia did stuff like this when they put dissidents in mental hospitals.

Where is the outrage among the psychiatrists on this board? I mean, do you all think this is acceptable and is simply business as usual?

Dr. Hassman, and you wonder why people hate psychiatry so much?

If I were that mother, I would be looking to see whom I could sue. If that didn't work, I would write every media person I could think of and wouldn't stop until I got justice.

Shame on the school system and shame on psychiatry for traumatizing a kid for life. Yeah, that is really helpful treatment. NOT!

AA



roblindeman said...

AA,

This would not have happened had the mom been white and wealthy. I'm surprised to hear myself say these things, but after 16 years of practicing in the Commonwealth, it is clear that involuntary incarceration and forced medical treatment of children falls disproportionately on the poor and on ethnic minorities... and more generally on people who cannot advocate for themselves.

That there is no outrage might have something to do with this.

Anonymous said...

Rob,

Sadly, I am not surprised that your patient is a minority.

A big fat sigh!

AA

007 said...

school systems disproportionately target any kid thats different. they went after a bush once: Ws nephew pierce was pressured to go on ritalin for adhd. then his parents discovered he was dyslexic, put him in a school for dyslexics, no more ritalin, and he turned out fine.

too bad if ur not a bush and private schools are too expensive...

Anonymous said...

Anyone here heard of Motivational Interviewing? CBT? CPT? Psychoeducation for the whole family? Oh, yes, this is "by psychiatrists for psychiatrists"... Not much training on evidence based treatments there... Sure, you see psychiatrist by your own choice, but there is an approach well studied that can move individual through stages of change and from ambience to action and adherence-they call this Motivational Interviewing -"empathy" by therapist accounts for two thirds of variance-perhaps a hard task for DOs MBBSs from India and MDs from the Caribbeans-sorry, but that's just the current state of psychiatric education... CPT codes and billing first, pt. secondary...

Anonymous said...

Too much weed may lead to amotivational symptoms + he may not get that many benefits from meds if he's smoking pot...

Anonymous said...

Indeed! You have to consider very sad state of state psychiatric hospitals who struggle to recruit psychiatrists, sometime hire per diem 80 y.o. psychiatrists, who even if they're well meaning simply comply with whatever hospital administration asks of them, which often is just a signature to make it "official"-no wonder so many hospitals are under DOJ investigation... Sad...