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My Schizophrenic Brother


chisa
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I hope it's okay to just post a link, but for quite a while now I've made posts about the ups and downs of my brother's life and its impact on the family. It may or may not be of interest to some people here, but I thought I'd share it for anyone interested.

As a warning, it's not always sympathetic to his sufferings. I generally feel more for my mother and sister and grandmother than my brother himself. Parts of it may or may not offend others who deal with the disease, but it's just about this one person we know and his impact on our lives. It doesn't apply to everyone who is schizophrenic.

So, if anyone's interested, please check it out. Insights and feedback are greatly appreciated as well.

http://www.theforumsite.com/blog.php?item=72123

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Hello chisa,

I wasn't able to read whatever was posted at that other site -- the page wouldn't load at all. Would you feel comfortable cutting and pasting some portions here?

As a warning, it's not always sympathetic to his sufferings. I generally feel more for my mother and sister and grandmother than my brother himself. Parts of it may or may not offend others who deal with the disease, but it's just about this one person we know and his impact on our lives. It doesn't apply to everyone who is schizophrenic.

I'm someone who comes at this experience from two angles. I'm someone who has experienced what would be called psychosis in this culture and I've also been a caregiver to someone who has experienced various forms of extreme states, including depression, mania and psychosis.

As a person who has experienced psychosis, I learned a lot. As a person who has been a caregiver to a family member undergoing a similar crisis, I learned some more. One of the things I learned was that neither position is easy. These sorts of life experiences greatly affect the individual in crisis but they also deeply impact those they are connected to. All people benefit from support but it can also be helpful to gain some insight into the experience of the other and find ways to talk about the distress that can be involved as a means of enhancing connection.

I feel that last point is of vital importance. People who have gone through these kinds of experiences need to be able to emotionally connect once more to the significant others around them as a means of rebuilding their ego identity. There is a great deal that goes on within family and therapeutic environments that serves to actually drive a wedge between family members and thus, increase their isolation from one another. As but one example, within some therapeutic settings, family members are treated as if they are quite unimportant to the entire process of treatment and recovery. They are distanced both by legalities and presumptions of expertise. Rarely however, will a physician have the same degree of insight into a loved one's experience as the family who have known that individual for their entire lives.

I think it's important that everyone affected learns how to talk to one another. Quite often, that is going to involve talking about things that can be difficult to talk about at times. Nonetheless, I would certainly be interested in learning a bit more about your perspectives and sharing some of my own where I feel it might be appropriate.

~ Namaste

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Spiritual--

Well, as far as the two of us communicating, I believe that we have found that connection. The two of us were always the most similar in the family, and though his conversations with anyone seem to be agonizingly tense, I've become adapted to this enough now that it's a sort of pleasant tension when we talk.

And for some reason he never seems to blame me for anything or stay angry at me, even when I've done at least as much "to him" as anyone else in the family.

Everyone else in the family he is absolutely horrible to though. He blames them for every single thing that has gone wrong in his life and has said unthinkably awful things to them. There can be no connections with the kind of intense anger he holds towards everyone.

And I will copy and paste pieces, though only bits at a time. I've written in that journal on and off for over a year, so it would seem kind of rude to post this monstrous block of text.

Luna--

Lol. I'm a total computer moron, so I can't even answer your question.

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Okay, so it's still a massive wall of text, and I apologize for that, but this is only the entries of the past few days so you see why I won't copy and paste the entire journal. I did change the privacy settings though, so perhaps anyone interested can connect now and read it in a more friendly format.

"It really must be hell living his life. Slowly, one by one, every single one of his freedoms are being removed. His actions are becoming more and more watched and instructed. I cannot imagine how suffocating his life has become for him. When I stop and think about it, I don't really blame him for looking for a way out of that.

Everything he had as an adult is gone now.

His license is long gone, and his car totaled, and driving around aimlessly is so calming. That had to be a terrible blow to have lost that outlet.

His home is gone, the home where he was married and was due to start building his life before shit hit the fan. He's yet to find another real home. He can't live alone; part of his parole for the car stunt is that he must remain where he is now, living with three other guys and a house mother to look over their shoulders and make them do the things that they don't feel like doing (eg: hygiene and dressing decently-- all those incredibly basic of independent decisions).

Just a few days ago his funds were allocated on him. He will no longer be allowed the freedom to decide what to do with his money. His bills will be paid and then he'll be given a set living allowance of somebody else's decision. (He was downright scary when he learned of that too. That was another hard blow.)

And everybody knows everything about all the horrible things that have been going on in his life, the horrible things he's done and said. He has no privacy, no alone time. His life is practically on display for every single person he knows. There is nobody left that he can talk to that doesn't know every gory detail of his illness. Every decision he makes is scrutinized. Every mistake he makes is on display. Really, it's no wonder that any conversation with him is so awkward. That's a monstrous, saber-toothed elephant to have in the room.

I don't blame him in the least for trying to get away from it all. I know without a doubt that I couldn't handle living that way. Not only does he have his schizophrenia to contend with, he has to do it all with no privacy and no freedom. I'm not even sure how they expect him to ever get better with everyone staring at him that way. How could he possibly be expected to regrow his life being suffocated the way he is? He literally cannot go anywhere without asking permission. He cannot even decide whether or not he feels like taking a shower anymore. He's never going to come back from all this that way. We need our own time far too much.

I almost want to sneak him out of this place. I want to bring him somewhere where nobody knows him, nobody knows his history, somewhere he would have a real chance of moving forward with his life. Because here, he's doomed. Here too much has happened, too much that one simply cannot move forward from. Here the whole messy spiral will always be hanging over him, holding him back. Some things cannot be fixed. Some things cause permanent and irreparable damage. And he's trapped amidst that ruin of his life while everybody studies his every move expecting him to rebuild it from the rubble.

He's stronger than I am for simply still being alive with such an impossible situation."

"Of course the problem is that he cannot function well enough to make his own choices though. I made it sound previously that his rightful adult freedoms of choice were taken from him unfairly, but really he lost them himself.

The petty things like hygiene should be left mostly up to him, but the big things he did to himself really, and it's in his and everybody else's best interest that he can't choose to do those things.

He lost his license because he didn't pay his tickets. Then he continued to drive, continued to get pulled over, never even registered his car, and then got into a high speed chase and totalled it. As painful as it must be for him to have the invaluable outlet taken away from him, what else could they do at that point?

His housing was forced upon him because... well he has no place else to live. He can't afford anything else, and he couldn't (or wouldn't) take care of a house without somebody making him.

His control over his funds was taken away from him because he frankly can't balance his own checkbook. He no longer has the reasoning abilities to understand that he needs to pay his rent before he spends his whole check on suicidal ammounts of cigarettes, mt. dew, and junk food. And he has this sense of entitlement that allows him to guiltlessly steal from those around him when he runs out of money two days after he gets his check. His money was taken away because of the disgusting ammounts of money my mother and aunt have put towards his bills because he pissed away his entire check without a thought towards responsibility.

I speak of sneaking him out of here so that he can escape all this scrutiny and have a real chance at rebuilding his life, but the reality is that if I were to just open the cage and let him fly, he would spiral to the earth and snap his neck on impact.

He lost his freedoms because he proved over and over again that he could not take care of himself with them. He lost his privacy because over and over again he created these horrible scenes for all the world to see. What the hell do we do when he couldn't possibly be able to rebuild his life surrounded by all the wreckage of the past few years, but would also crash and burn should he try to start one away from everybody who knows what has been going on?"

"He's harrassing my sis/brother in law again. He says that he's "going to get them back" for all the money they cost him. (They had him arrested a few times for coming up there screaming at them, with led to some 3 day psych detentions. They really had to though. What else could they do? They're running a daycare, taking care of other people's children, and here comes this pissed off crazy guy screaming and throwing things outside.)

Anyway, we don't really know what he means by "get them back", and it's a bit worrisome. He was already up there last night, and then wandered around in the fields for a few hours when he saw that my bro-in-law had his cop buddies over grilling.

They're getting a restraining order, but I have a feeling that this is going to be another build-up to yet another climatic episode."

"Tis all good for a few days. He was arrested. He brought the entire climax of the episode to our grandmother's doorstep yet again, but at least it's not ending with my brother-in-law finally snapping back at him and ending up in an altercation that ends his career. At least it's not ending with my brother finally crossing that line between verbally abusive and agressive and really hurting or killing someone. His dangerous position on that line terrifies me; the irrationally intense anger he feels toward my brother-in-law and my dad is so powerful that it's practically tangible. He blames them for every single thing that went wrong with his life. Every time something else bad happens he takes all his frustrations out on them, just making them suffer. (This time it was the allocation of his funds.)

So... yay. Nobody's hurt. Nobody's dead. My grandma just witnessed yet another heart-breaking snapshot of the man her happy baby grandson became. My sister was just left crying and terrified for her family's safety and her husband's job. My mom was just left...

I don't even know what my mom is going through anymore. Torn probably. Her son's life is decimated beyond all repair. Her daughter is scared for her family and considering moving out of state to escape these things. Her 90-year-old loving mother-in-law is being forced to watch all the worst scenes of this. Her sisters and brothers in law are pressuring her and her husband to find a solution to their crazy son to stop him from causing their mother this pain. And everybody is left tense and expectant for this finally to truly climax before it can be diffused as nicely as an arrest.

But at least we get a few days of peace. However this is all going to end, it won't happen tomorrow."

"I was wrong. I guess Joel had just gotten out of jail a few hours before he came over to "walk his dog". He had been in for not seeing his shrink or taking his meds, which are part of his probation. The arrest from the other night is going to last for the next few months according to my mother.

And maybe it's wrong that my own brother being locked up for a period of months fills me with such relief, but I'm not going to deny how much better I feel knowing that. A huge weight has been lifted and none of us will have to pick up the load for months. However it makes me sound to think this, it's good news, the best we will ever get in this bullshit situation and I intend to appreciate as such. "

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Hello Chisa, whatever settings it was that you changed on your journal, it worked. I was able to read it all.

There is a great deal there. No doubt I've missed some critical details but if I understand correctly...

- This all began with your brother about five years ago. The loss of his marriage seems to be the triggering factor that you identify as pushing him over the edge although you've since become aware that some things were happening even before he made the decision to marry.

- You now live in the home that he lived in with his wife when they were married. In addition to his connection to you, you credit this as being part of the reason he has "hung around" the house over the past few years including the times when you've asked that he not do so.

- Your brother has been what might be called a revolving door patient. The past several years have been marked by instability wherein he has cycled between various homes, hospitals, medications and homelessness.

- Whatever treatment he has received from the mental health system, it hasn't done the trick.

- Your brother has a history of irregular medication.

- Throughout this period, his relationships with his family have deteriorated significantly due to the emotional and financial strain of attempting to provide care.

- This deterioration has also been fuelled by his own behavior and the interplay of responses between himself and his family.

- In your account, I hear a great deal of grief, guilt, anguish, hopelessness, anger, blame, judgement and despair. No doubt, the wider circle of your family has wrestled with the same range of emotions.

- Your mother, grandmother and yourself appear to still be very emotionally connected to your brother. Of all the family members, he appears to be closest to you in spite of feeling betrayed by the other members of his family.

- You struggle with some form of ... are you comfortable with the term "mental illness"? I don't recall you identifying it precisely but you mentioned making use of prescription medication. Given the strain of the past few years, depression would be a likely candidate. You also have fears that you may end up like your brother because you were considered so similiar in temperment through your earlier years.

- Recently, your brother was driving an old vehicle of yours. He has no license and when he was spotted by police (who know of his personal history) he took off in a high speed chase. There was a crash and amazingly, your brother came out of that with no serious injuries. As a condition of his parole, he's now living in a shared residence with what I presume are three other men considered to be mentally ill. He is legally required to take medication -- what I assume is a depot injection. The presence of a "house mother" helps ensure that the men tend to basic hygiene and take their medications as required but there is a huge lack of personal autonomy and you feel for your brother in that regard, wondering if he can possibly rebuild his life at this point.

If there's something I've misunderstood, please let me know.

~ Namaste

Edited by spiritual_emergency
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Some thoughts on what's been happening for you, your brother and your family over these past few years...

Chisa: And maybe it's wrong that my own brother being locked up for a period of months fills me with such relief, but I'm not going to deny how much better I feel knowing that. A huge weight has been lifted and none of us will have to pick up the load for months.

I think your response of relief is a normal one. Your cynicism is a symptom of your years of trying to find a resolution and not finding it. It seems obvious to me that you don't really want to see your brother locked up -- it just seems like the only solution right now that might get him off the streets and possibly, aligned with some methods of treatment that might actually help him. What most people want is for their loved one to be better and their own mental health will be inextricably interwoven with the fate of their loved one. People oscillate between loving intently and feeling that they must stop loving at all as a means of protecting themselves. It's tremendously wearing and tremendously stressful. It tears families apart and creates walls between them.

Some of those barriers are related to lack of knowledge and insight into what happens for people who are undergoing these extreme states. Our expectation is that there will be a rational person there, someone who can be reasoned with. When that doesn't happen, the natural inclination is to blame the other person because there they are, right in front of you, and they're not doing the things they're supposed to be doing and you're doing everything you know how to do to help them. It can feel very one-sided and unjust.

In the west, we also separate people in these crisis states from their family members and we treat only the individual in crisis. We should be treating the family because a crisis of this magnitude throws the entire family into a crisis state. How can they not be? They are connected to one another.

Well, as far as the two of us communicating, I believe that we have found that connection. The two of us were always the most similar in the family, and though his conversations with anyone seem to be agonizingly tense, I've become adapted to this enough now that it's a sort of pleasant tension when we talk.

Sometimes only the tiniest threads of connection remain but sometimes, this can be enough. I think there may be ways to still help your brother but you will all need support through that process. That support can come in various ways. Below, is some standard advice I tend to share with people who are reaching for recovery. Caregivers also benefit from getting the same in place for themselves...

Support Teams are comprised of people you find helpful and should include: Professionals; Family and Friends; Peers, and; Mentors. Each member of your team can address unique needs.

  • Professionals provide medical and psychotherapeutic care and may include psychiatrists, psychologists, counselors, social workers, therapists, general practioners, nurses, nutritionists, massage therapists, etc.

  • Family and Friends provide connection, meaning, purpose and are often in a unique position to provide vital feedback. For example, if you are taking a new medication your family will be very much aware if it is working for you. Or if you are beginning to slip into a depressive, manic or psychotic episode, they may well become aware of it before you do.

  • Peers are especially important because, in my experience, they can often provide the best forms of emotional support and understanding -- they have been there; they have walked in your shoes; they know what it's like. Many people look to their family and friends to offer peer support but these people may lack the insight that shared experience can offer. They can also be so intimately involved and deeply impacted by your experience that they lack the ability to provide impartial support and may, in fact, require their own support team. The latter will be especially true for those who are in a position of primary caretaker.

  • Mentors serve in a unique capacity because these are the people who inspire you to reach for your best. Mentors can be drawn from any other area of your support team (i.e. a family member can be a mentor) but more likely, they will be drawn from the larger world around you. It's not necessary that any chosen mentors also carry a diagnosis of any kind of mental illness; rather, they simply need to have been another human being who faced some enormous challenges and either overcame them or turned them to his/her advantage. If your support team does not have at least a few mentors on it, your team is lacking. One point worth emphasizing is that Mentors must be self-chosen. It's also worth noting that they needn't be alive; some of my mentors have included Helen Keller, Viktor Frankl and my own mother -- all of whom are dead.

Support Toolboxes are made up of things you (and members of your Support Team) recognize as beneficial and helpful. Support toolboxes can be quite unique because what we find helpful on an individual basis may vary considerably. They may include things such as education, exercise, medication, meditation, music, nutritional therapies, spiritual practices, personal journalling, etc.

A strong Support Team and a well-equipped Support Toolbox greatly increases the odds that if you're floundering in any capacity, you'll be able to find the person or thing that is most going to help take you forward. So, choose your team wisely and outfit your toolbox with care.

Most of the people I speak with, the vast majority of whom are considered to be schizophrenic, are lacking Peers and Mentors. I suspect your brother is the same. Something else he is probably lacking is hope and this lack can drive so many seemingly futile behaviors. I have yet to meet anyone who has made any significant recovery without first believing it might be possible.

I'd like to share this link with you too although I think you will find it difficult to read at first: Schizophrenia & Hope It will be difficult for you to read because you've probably been in that place of feeling hopeful before but after being repeatedly disappointed, you're not willing to allow yourself to open to that level of vulnerability again. Sometimes, hope hurts.

This happens for people who are considered "schizophrenic" too. They lose hope. They stop trying. They give up because they feel like they can't win. But sometimes, they're still angry about what happened to them. The energy of that anger can sometimes be turned in a positive direction if they can find a way to get comfortable with hope once more.

For now, I share your relief that your brother is off the streets and hopefully in a safe place. Maybe this time, something will make a difference and he will be able to rebuild his life. It's what you all want. His family can't begin to get better until he begins to get better.

~ Namaste

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An article of relevance...

"Psycho." "Freak." "Jason from the horror movie." These are the answers that counselor Habsi Kaba gets from Miami police officers when asked to describe people with mental illness. Such stereotypes are surprisingly common, says Kaba, and not just within law enforcement. But these misconceptions are especially dangerous when they're held by police, who are often forced to make split-second, life-or-death decisions about mentally ill suspects. "The worst thing you can have is power and lack of knowledge," Kaba says.

Just ask Mike, 31, who knows firsthand. Mike suffers from schizophrenia, bipolar disorder and depression. Since the age of 17, the Los Angeles native has been repeatedly arrested during psychosis for nuisance crimes like disturbing the peace, only to serve his time, fall off his medication and get arrested again. On three separate occasions, his hallucinations were so severe he tried to commit suicide by provoking the police to shoot him. Though he is receiving treatment, rising health care costs and declining federal help mean Mike will likely end up in jail again.

L.A. Police Lieutenant Richard Wall told Mike's story to members of the House Judiciary Committee in March, in support of the 2007 Second Chance Act, which aims to reduce recidivism, in part with better mental health treatment for prisoners returning to society. Prisons, Wall testified, have become the nation's "de facto" mental health care provider. According to the Federal Bureau of Justice Statistics, there are currently 1.25 million inmates like Mike, with debilitating disorders ranging from schizophrenia to post-traumatic stress disorder, abandoned in the U.S. prison system instead of receiving treatment in hospitals.

"If you think health care in America is bad, you should look at mental health care," says Steve Leifman, who works as a special advisor on criminal justice and mental health for the Florida Supreme Court. More Americans receive mental health treatment in prisons and jails than hospitals or treatment centers. In fact, the country's largest psychiatric facility isn't even a hospital, it's a prison — New York City's Rikers Island, which holds an estimated 3,000 mentally ill inmates at any given time. Fifty years ago, the U.S. had nearly 600,000 state hospital beds for people suffering from mental illness. Today, because of federal and state funding cuts, that number has dwindled to 40,000. When the government began closing state-run hospitals in the 1980s, people suffering from mental illness had nowhere to go. Without proper treatment and care, many ended up in the last place anyone wants to be."

The one institution that can never say no to anybody is jail," Leifman says. "And what's worse, now we've given [the mentally ill] a criminal record."

Most police officers aren't trained to deal with people suffering from severe mental illness. But because they are the first to respond to calls involving psychiatric crises, police are in a unique position to fix the crippled system. That effort is now under way, thanks to Crisis Intervention Teams (CIT), which are being adopted by a growing number of police departments across the country. The concept was pioneered by the Memphis Police Department in 1988 after an officer shot and killed a person suffering from schizophrenic hallucinations. Working with the National Alliance for the Mentally Ill and two local universities, Memphis police trained and organized a unit of officers specifically to deal with people in psychosis — a mental state commonly suffered by patients with severe mental illness in which their thoughts don't match up with reality.

In these cases, normal police procedures often increase the chances of violence, confusion and even death. So, police officers are taught to approach psychotic suspects in a different way: by speaking softly, rather than shouting commands, repeating phrases, holding hands palms-up instead of holding a gun or badge, and wearing plainclothes instead of uniforms. These actions may seem minor, says Kaba, who is the CIT training coordinator for the Miami Police Department, but they go a long way in breaking down the barriers — psychological and otherwise — that often exist between the mentally ill and police...

Read more: http://www.time.com/time/health/article/0,8599,1651002,00.html#ixzz1JfA3KbLr

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Pete Earley has been described as one of a handful of journalists in America who "have the power to introduce new ideas and give them currency." A former reporter for The Washington Post, he is the author of nine nonfiction books and three novels. His book, CRAZY: A Father's Search Through America's Mental Health Madness, tells two stories. It describes his attempts to help is college age son, Mike, after he becomes ill with bipolar disorder and is arrested. It also describes a year that Earley spent at the Miami Dade County Jail where he followed persons with mental disorders, who had been in jail, out into the community to see what sort of services they received. His website is www.peteearley.com.

...

LS: I've seen one of your impassioned speeches--what angers you most about the US health care system?

PE: People with mental illnesses are dying on our streets. More than 350,000 are in jails and prisons. Most are people whose only real crime is they got sick. What makes me angry - no, what makes me livid - is that I believe we know how to help most persons who have a mental illness. We just aren't doing it. We know it takes more than sticking pills into someone's mouth. It takes housing, jobs, being connected to a community and I want it all - affordable psychiatric care provided by doctors who are not being pushed by insurance companies to write a prescription and shove a patient out the door. Only two of the nine psychiatrists who have treated my son have bothered to learn more about him than his name and symptoms. That's shameful! We need better medications, but we also need assisted outpatient treatment teams, Housing First, clubhouses like Fountain House, evidence based practices, self-determination programs, jail re-entry programs such as F.U.S.E. in New York, mental health courts, peer to peer programs, Crisis Intervention Teams. Every possible program that helps people recover should be offered to them.

LS: Involuntary hospitalization is one of the thorniest topics inside the mental health movement---how do you define your position on it?

PE: Forcing someone into treatment should be the last step. It's best when someone becomes empowered and chooses to take charge of their own recovery. But Mike didn't realize he was delusional when I tried to help him and the "imminent danger" criteria stopped me from intervening -even after he broke into a house to take a bubble bath and was arrested. This debate is not really about whether or not we should force someone into treatment. That's what involuntary commitment laws do and, as a society, we have adopted these laws because we recognize they are needed. The dispute is over when we will force someone and I think "dangerousness" is a horrible legal criteria that contributes to homelessness, incarceration and death. There's nothing noble about letting a person who is clearly ill die on our streets. We should offer the least intrusive help first, such as Housing First, and then gradually move up the scale as a person becomes more impaired and disabled to involuntary commitment in hospitals and assisted outpatient treatment. Impairment, not dangerousness should be the criteria and families and consumers should be more involved in deciding when someone needs help because they have the most to lose.

Source: What's Driving Pete Earley Crazy?

It's possible Mr. Earley could serve as a form of peer to you, even if you never actually have a conversation with the man. At minimum, you both have the experience of desperately wanting to help someone you love, for their sake and for your own, and discovering that the system you thought was in place to provide that care is, in many cases, severely deficient.

There is a very great deal that is wrong with the mental health care system. It might seem that the fix would be to impose treatment on people who don't want it but that's not always going to bring the desired result either. Meds can help but meds can also harm.

More on that coming up...

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You had mentioned that your brother had put on 50 to 100 pounds. A number of the newer atypicals are associated with diabetes and cardiac complications such as sudden cardiac arrest. It's disturbing for family members to know that because they can feel so desperate at times; they want to believe there is an easy way out and they want to believe medication will provide it. The truth is, sometimes it will but sometimes it will not.

Does someone within your family know which medications your brother is currently being prescribed? It may be helpful to find out and further, to educate yourselves about the risks and benefits of psychiatric medications used as treatments. On the one hand, this can help family members develop greater insight into why some people refuse to make use of medications and why, sometimes, they should refuse.

Yet another reason is, if you are considered to be schizophrenic and you say that your meds are hurting you, your complaints are typically dismissed as an indication of your condition. It may be necessary for family members to advocate on their behalf and negotiate for a change in the prescription if there are verifiable negative effects. That change could include a medication withdrawal, medication reduction, switch to a different drug in the same class or the introduction of a new drug from a different class.

Typically, the drug classes used as treatment may include anti-psychotics, anti-depressants, anti-convulsants (mood stabilizers), and anti-anxiety agents. A secondary line of drugs may also be introduced to help counteract some of the negative effects of the first line of drugs, such as an anti-cholinergics which counteract negative neurological effects (i.e. tardive dyskinesia), statin drugs which help to lower cholesterol, or anti-diabetic drugs which help counteract insulin dysfunction. Personally, I feel it's best if we can help people using minimal or no medications at all but it's far more typical these days for an individual to be prescribed a "chemical cocktail".

The medication issue is one that's exceedingly complex but it's part of the reality of potentially helpful or harmful treatment. For that reason, it has to be looked at for what it really is. That's reality.

~ Namaste

See also: Schizophrenia and Cardiometabolic Risk

Edited by spiritual_emergency
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Chisa, this is a reasonably good video that talks about what happens in the relationship dynamics between people who are in crisis states and the people they are connected to. I don't personally agree with everything Xavier Amador has to say, in particular, I am always concerned by any emphasis on sensationalistic and violent cases that contribute to the stereotype that all people with mental illness are exceptionally violent. That's a bit like saying all men are rapists -- it's true that some are, but the vast, vast majority are not. The fact that some people with mental illness are violent is not indicative of the everyday reality most people experience, either as people with some form of mental illness or those who love them.

We have to bear in mind that Amador is trying to get people's attention and he's also trying to sell a book. Nonetheless, I think he presents a very good framework that could work well with where you are in your own approach, and that this could help you and your family to reduce some of the volatile communication that has taken place, that contributes so greatly to the heartache of all of you, and that has eroded the bonds of trust and open communication between your brother and his family.

The video is due to be taken down on April 29 (I will probably try to rewatch the video myself, take some notes, and post key points here for that reason) so if you want to view it, I suggest you do so soon. It's about two and a half hours long: I'm Not Sick, I Don't Need Help

Notes from the video:

- When my brother, Henry, first became ill I thought I would very kindly and compassionately point out to him all the ways in which he was clearly psychotic. All it did was make him angry, make him stop wanting to talk to me, and make him feel very, very alone because all I did was argue with him.

- My brother was somebody I really looked up to growing up. He was seven years older than me. He taught me a lot of things in life. Our father had died when I was very young and Henry was in many ways, like a father to me. He taught me how to ride a bicycle.. this young man, in many respects took me under his wing and taught me, among other things, how to be humble and how to be self-reflective. Very, very insightful person and he still is.

- When he first became ill and went from being delusional, terrified and terrifying -- he was very frightening because he was so scared he was getting angry... hearing voices... And then going to that first hospitalization and coming out of that hospitalization calm, not hearing voices, not believing any longer those things that terrified him, the delusions he had about my mother in particular and that she had been taken over by the devil and all sorts of bizarre variations on that.

- So he comes back and he's doing great and within two days, the pills are in the garbage. That started about seven years of me fighting and arguing with him, and not understanding him. And thinking that he was actually being really stubborn, immature, difficult... I didn't understand. I thought he was being in many ways, childish and that he needed to face up to the tragedy that he was sick now.

- The prognosis back then was this is a terrible declining illness and you're just going to get worse. The sad part is, there was research that indicated that wasn't the case... we were learning the old descriptions from Kraeplin and Bleuler which were not based on science, not based on empirical data. But that's a different story that is related and we'll touch on it...

That "different story" is something my collection of articles about schizophrenia and hope addresses. For now though, you can probably see why I thought this voice -- the voice of Xavier Amador -- would be a useful voice for you to hear. He's a peer. He's walked a mile in your shoes. He can understand what you're going through because he's been through it too. Like you, he tried to find a way out of disconnection and back to reconnection because he recognized that was something that was going to help rather than hinder recovery.

Meantime, that different story he references... that's a story worthy of exploring too, especially for your brother.

~ Namaste

Music of the Hour:

Edited by spiritual_emergency
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Chisa: ... and the really creepy new thing about this whole thing is that i think he's started hearing voices now... ive seen him just sit and whisper to himself for long stretches of time... sometimes he'll walk around whispering to himself and moving random things around in the apartment, opening or closing doors...

I borrowed that passage from one of your entries because it highlights the lack of understanding on behalf of those around the individual in crisis and often contributes to their fears. They don't understand what's happening and people are frequently afraid of what they don't understand.

As a possible means of helping you "get into your brother's head" (and thus, begin to better understand his experience)... there are a number of indepth conversations that have taken place in this area of the site between people who have experienced psychosis. I suggest you take some time to read through them. It's possible you may recognize aspects of your brother's experience in those other accounts, or maybe not -- every experience can be quite unique unto itself. Nonetheless, I suggest the exercise because this is very likely contributing to the problems (and fears) within your family.

This link may also be helpful: Intervoiceonline.org

I think I'll stop responding for a while. For now, I've left you with quite a bit of information to read and sort through. I would encourage you to share that with your larger family as you feel it's appropriate.

~ Namaste

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Additional (brief) notes from Xavier Amador's lecture. I think these points are some of the most important points he makes because they help us to recognize the patterns of communication that get in the way of establishing bonds of trust, empathy, concern, regard and respect.

Getting the person to understand you believe they're ill is not the goal. The goal is to build a relationship wherein the person feels they are listened to, they are respected and that you care about them enough to want to help them get some kind of help in accordance with the unique goals and challenges they have identified as important to them.

DO NOT SAY:

- Refuses to acknowledge

- Denies he/she is ill

- Doesn't admit

- Won't admit

DO SAY:

- Cannot acknowledge

- Unaware

- Unable to admit

HOW WE USUALLY TRY TO HELP:

- We invalidate the experience of their reality by imposing our view of reality upon theirs

- We coerce by attempting to dominate, control or punish

- We abandon and wait for them to "hit bottom"

MOTIVATIONAL INTERVIEWING- Motivational techniques were common features of those programs that were successful -- those programs that help people get into treatment and stay in treatment were using techniques from motivational interviewing or motivational enhancement therapy.

L.E.A.P.

- Listen actively/reflectively:

- Emphathize:

- Agree:

- Partner:

Listen to fears, frustrations and desires.

Empathize with their experience of the reality of living with that situation.

Agree or Respectively Disagree, focus on the areas of agreement because these are the places where you can...

Partner with them to help them move towards the goals or challenges they have identified as most important to them.

I'd like to add, I am not in full agreement with what Dr. Amador has to say about anosognosia and I've seen that argument used against people to force them into treatment. Forced treatment is always an iffy move -- it may help but as you've discovered with your brother, it can also substantially damage trust between people that serves to reinforce their reluctance to seek further treatment or relationships with others. My own experience and observations have been that:

- Most people are very much aware that something is happening to or with them. They might not use the same terms to describe that experience as those around them. If those around them insist that they adopt their terms, i.e., You must accept that you are "mentally ill, schizophrenic, crazy, wrong, an asshole, etc." they will respond by retreating, by isolating, by creating barriers and occasionally, by lashing out.

- Most people will naturally gravitate towards that which they self-identify as helpful whether it's people, medication, therapy, music, nature, etc.

- How we talk to individuals in a state of personal crisis has a profound impact on how they respond to us and our own fears, concerns and desires.

I would also like to emphasize that I don't necessarily agree with Amador's concept of delusions. I think the term "belief structure' is a less stigmatizing, more benign, and more realistic term. Over the past several years I've spoken with people who firmly believe George Bush was the best president ever; that Jesus is going to come down from the sky and swoop them up in a rapturous embrace; that U2 is a better band than Pearl Jam; that aliens sneak into their room when they're sleeping, or; that they're god. I don't agree that all those things are true but I do agree that some people believe they are. I also agree that opinions are subjective, that I don't have to agree with everyone else's opinions and that people in fragmented states often speak symbolically -- that doesn't mean we should intrepret their words literally. Some examples...

- My own experience was laden with symbolic expressions that could be related back to significant events in my life. It was very easy to call them "delusions" by those who lacked the ability to interpret those experiences on a metaphorical level.

- In my child's experience, one of their concerns was that the house was on fire. I was in the house with them and I was pretty certain it wasn't burning down. But I also understood that a house is a symbol of the self and that psychosis involves imagery related to self-destruction. So, I talked about this with my child and sometimes, that made sense to them. We also walked with our child around the house, encouraging them to look for flames, to smell the air for evidence of burning, and to place their hands on the wall to check for heat within. What we also did was to develop a plan with them of what we would do if the house was on fire, how we would get out and where we would all reconvene to establish that we were all safe. It was only this latter move that truly empathized with the reality they were experiencing and that therefore, truly responded authentically to their fears. There were even times we did that very thing. If addressing their fear metaphorically or via reality testing did not help to calm them, we got out of the house. We reconvened at our chosen spot and we assured them that we were all safe because that's what they were frightened of -- that a fire would come and they would be hurt or the people they loved would be hurt.

- Not long ago I was speaking with a fellow who believes the government is conspiring against select members of humanity, including him. He showed me some articles that substantiated his beliefs and maybe I'm not the best one to determine their accuracy but they certainly raised some valid questions. My own experience of governments is that they're not always honest and they do engage in all manner of undercover acts. I could only conclude that I didn't know what to believe and was able to share that with him without invalidating his experience. I was also able to empathize that it is very difficult to live your life when you believe you can't trust people around you or you believe that someone is trying to hurt or kill you. I was able to honestly say, "You know, I've never had that exact experience and I think that makes me a poor candidate for understanding it the way you do. But I have had the experience of feeling I couldn't trust people or that I couldn't sleep, or that I was terribly frightened so maybe I can help you as you try to figure out who you can trust, or how you can get adequate sleep, or how you can feel more safe and less frightened."

See also: Motivational Interviewing

Edited by spiritual_emergency
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Some possible programs that might be of benefit to your family, Chisa. Note that I recommend such programs even if they're not available in your area because you can learn from them and may be able to adapt them to suit your own purposes in conjunction with resources that are available within your geographical area...

... We include families in our work because family dynamics, attitudes and communication do affect the recovery process, either giving impetus to recovery as part of creating a "sane environment" or impeding it. Family members are deeply and powerfully interconnected. If one member of a family is in an extreme state, all members of the family will most likely find that they are also in an extreme state of some kind in response to the difficult situation and the intense emotions associated with it. The on‑going disruption, grief and anxiety experienced by families, combined with negative cultural attitudes towards mental illness and a fragmented mental health system, constitute major and continuous stresses of many kinds on many fronts. We know that it is a difficult journey, and that all of you have at times been stretched to the limits of your endurance. We know that families, as well as clients, commonly find themselves in a dark labyrinth of grief, fear, conflict and confusion ‑ and that it is hard to know where to turn for guidance.

No matter how great the stress or turmoil, in our experience there are two basic concerns closest to the hearts of most family members: 1) How can I give my son or daughter, sister or brother, husband or wife what he or she needs from me? and 2) How can I and the other members of our family survive and flourish in the midst of all this chaos and heartbreak? These are the two basic concerns to be addressed in thinking about the family situation and how to help. They are completely interrelated and interdependent and cannot really be addressed separately, because the ability of family members to give their mentally disturbed relative what he or she needs from them will be greatly enhanced if they themselves have attained a degree of equanimity and are leading satisfying lives.

In fact, the interconnectedness of these two concerns is an important principle underlying all our work and also extends to the network of professionals and team members involved in the client's treatment. Stated in another way, the first principle guiding our work is that the client, the professionals and significant family members are all inextricably and closely linked in the recovery process and that everything affects everything else, for better or for worse. Consequently, it is of great importance that we all work together with a common purpose and a common vision of what promotes recovery...

Read the full article here: Windhorse Integrative Mental Health: Guide for Families

See also: Windhorse Project: Recovery from Psychosis at Home

The following link leads to another discussion area within this site: Can a Mind Be Well? The program I want to draw your attention to is called Open Dialogue Treatment. Again, it will probably not be available in your area but that doesn't mean you can't learn from it, share and talk about it with your family members, adapt some of those approaches to your own situation, and possibly, find a local therapist who is familiar with the approach or willing to try learning it.

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  • 3 weeks later...

You had mentioned that your brother had put on 50 to 100 pounds. A number of the newer atypicals are associated with diabetes and cardiac complications such as sudden cardiac arrest. It's disturbing for family members to know that because they can feel so desperate at times; they want to believe there is an easy way out and they want to believe medication will provide it. The truth is, sometimes it will but sometimes it will not.

Does someone within your family know which medications your brother is currently being prescribed? It may be helpful to find out and further, to educate yourselves about the risks and benefits of psychiatric medications used as treatments. On the one hand, this can help family members develop greater insight into why some people refuse to make use of medications and why, sometimes, they should refuse.

Yet another reason is, if you are considered to be schizophrenic and you say that your meds are hurting you, your complaints are typically dismissed as an indication of your condition. It may be necessary for family members to advocate on their behalf and negotiate for a change in the prescription if there are verifiable negative effects. That change could include a medication withdrawal, medication reduction, switch to a different drug in the same class or the introduction of a new drug from a different class.

Typically, the drug classes used as treatment may include anti-psychotics, anti-depressants, anti-convulsants (mood stabilizers), and anti-anxiety agents. A secondary line of drugs may also be introduced to help counteract some of the negative effects of the first line of drugs, such as an anti-cholinergics which counteract negative neurological effects (i.e. tardive dyskinesia), statin drugs which help to lower cholesterol, or anti-diabetic drugs which help counteract insulin dysfunction. Personally, I feel it's best if we can help people using minimal or no medications at all but it's far more typical these days for an individual to be prescribed a "chemical cocktail".

The medication issue is one that's exceedingly complex but it's part of the reality of potentially helpful or harmful treatment. For that reason, it has to be looked at for what it really is. That's reality.

~ Namaste

See also: Schizophrenia and Cardiometabolic Risk

I would love if we could even get to that stage. Frankly though, it really doesn't even matter yet which meds he's prescribed; he'll only take them for a little while. And you don't have to have front row seats to understand how indescribably horrible that would be for their mental state.

We would simply never be able to get him to work with us long enough to find the right combinations. He's quite anti-medication. I suspect that in part he's ashamed to be schizophrenic and taking meds means admitting that he's crazy, and his obnoxious stubborness and pride would never allow such an acceptance. If we could only get past that then we would of course help him find something that helps and we have all done our own research (I have a separate thread at the other link that's more informational than personal), but he just won't let us.

There's simply nothing else that we can do for him other than to fight to have his right to decide for himself what treatment is in his own best interests stripped as well. If it were just a matter of his own interests, I would abhor degrading him as an adult in that way, but he just has so much anger and mixed with such irrationality it is making our lives hell. My sister is so close to selling her house and moving states away because she's becoming so afraid for her family's safety. It only took my dad touching his shoulder to set him off enough to grab him by the next and take him to the floor. My mom, my grandma, everyone's interests are so greatly effected by his choices and it's not in anyone's interest, not even his own, for that decision to remain his own to make.

And once we are finally able to get that decision taken away, he's never going to allow any of us to advocate for him. He's anger towards his family is only going to intensify and the only conversations we'd ever be able to have with him to know how he's doing would be his screaming at us about how we've destroyed his life.

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Nonetheless, I think he presents a very good framework that could work well with where you are in your own approach, and that this could help you and your family to reduce some of the volatile communication that has taken place, that contributes so greatly to the heartache of all of you, and that has eroded the bonds of trust and open communication between your brother and his family.

~ Namaste

Music of the Hour:

I've actually read bits of his account, but it's simply not helpful aside from gaining a greater perspective from other accounts. He's never going to forgive my father. Everything that's ever gone wrong for him is going to fall on my father's head as far as he's concerned. And my father is not a patient enough man to ever be willing, or even able, to take my brother's onslaughts. Neither one of them will ever have the temperment to be able to talk about things respectfully.

That has nothing really to do with any illness. That's just who the two of them are. They're kinda grouchy. They're stubborn. They're short-tempered. They were never going to get along.

As for my sister and brother-in-law, they will simply never be able to forgive him for the things he's done to them, for making them fear for their children's safety. And my brother blames our brother-in-law for the big scene that led to his first longer committment, as well as for helping with the committment itself; he's another one that gets all the blame and anger for all the horrible things that have happened to my brother.

And there's simply no way to further communication, even with a greater understanding, when there is such an immediate onslaught of irrational anger.

Somehow I've managed to escape his blame despite my own roles in such things, and we are able to have some tensely pleasant conversations. We were the most similar growing up, and I can kind of simpathize enough about our dad's shortcomings (which don't nearly deserve the kind of abuses he gets because of them), so I can even say some carefully chosen words in his defense. He lets me carefully defend my dad and my brother-in-law, and discuss a few other things carefully without blowing up. If it's not worded carefully he'll still blow up, but he somehow lets it go by the next time I see him.

But I can't convince him to work with treatment. He won't do it. And without that, there's no ammount of understanding that's going to help reopen communication with the family. His anger is just too intense and too irrational to leave us any choices about how to communicate with him.

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http://http://www.theforumsite.com/forum/topic/Chisa-s-Schizophrenia-Thread/399069/0

Link my less personal schizophrenic thread if anyone's interested. It's mostly a random collection of links and thoughts reguarding them focused on various aspects of schizophrenia. Pretty much just whatever I had read or thought that day. I won't pretend that it's ground-breaking stuff or that there's any particular brilliance in any of the insights, but there are some interesting links if anyone's interested in the topic.

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chisa: Frankly though, it really doesn't even matter yet which meds he's prescribed; he'll only take them for a little while. And you don't have to have front row seats to understand how indescribably horrible that would be for their mental state.

I've never been medicated. The people that John Weir Perry worked with, 85% of them, not medicated. The people that Jaakko Seikkula works with, about the same amount, unmedicated. The people that Loren Mosher worked with, also, around the same rate, unmedicated. That should not be interpreted that medication is never going to be necessary but it does demonstrate there are a number of successful ways to work with people who are not making use of medication.

I suspect that in part he's ashamed to be schizophrenic and taking meds means admitting that he's crazy, and his obnoxious stubborness and pride would never allow such an acceptance.

Really? Well, that offers me a thread of hope for your brother -- quite often, it's the non-compliant, the angry, the obnoxious, who recover.

Meantime, it sounds as if the situation in your family is so volatile, there will be no repairing it. My condolences. At minimum, perhaps you could share some information on those programs with your brother so that he will have some resources to follow up on by himself. Here's the link, once more: Can a Mind Be Well?

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