Ten Things We can Do to Help People with a Serious Mental Illness

Here are ten things which could be done to get people with serious mental illnesses– like schizophrenia and serious bi-polar disorder– the care they need BEFORE they hurt themselves or others.

My brother suffered with schizophrenia for 32 years. He, like about a third of all people with that diagnosis, did not get better with existing treatment methods, and lived out a sort of half-life, cycling through hospitals and adult homes. The following steps could have made a big difference for him and our family, and could make a big difference for those still suffering with disease symptoms.

1. Repeal the Medicaid IMD Exclusion, which prevents Medicaid funds from being used at “institutions for mental disease.” This prevents mentally ill people from getting the inpatient care they need at psychiatric facilities. It is discriminatory and is behind much of our failure to care properly for people with SMI.  For more information on the IMD, please see the website of the Treatment Advocacy Center and/or the position statement on the IMD at the website of the National Shattering the Silence Coalition.

2. Modify commitment laws to include grave disability instead of dangerousness. Treat people before there’s a tragedy. Recognize that the sufferer’s own need for treatment is as valid as the danger he might pose to others. This is especially true for those who lack insight and therefore can’t/won’t seek treatment voluntarily. Treading that fine line between loose commitment laws and a person’s civil rights is sometimes difficult to manage in a broad law. In recent years, the laws have been interpreted so narrowly that even when someone is obviously disturbed, authorities don’t believe the person is dangerous enough to commit. People who are falling apart with the onset of serious mental disease are not committed, and we end up with many private tragedies, as well as the more publicized ones, like the shootings in Thousand Oaks, California or Parkland, Florida.

3. Reform use of HIPAA  privacy laws so that valuable family care givers aren’t left out of treatment plans. Parents are often expected to take in their dangerously ill adult child, yet are denied access to changing diagnoses or treatments.

4. Implement nationally the RAISE program, an early intervention program with wrap around services that is now in use in some parts of the country.

5. For people diagnosed with schizophrenia, use Clozapine earlier in treatment rather than having a person wait until they’ve failed on other drugs…it works! The medication has been linked to a dangerous side effect, but that link has come under serious scrutiny. Again, as with HIPAA implementation and commitment laws, well-meaning restrictions on this medication cause it to be very much underutilized, and lives are being allowed to suffer when they could be greatly improved. My brother finally was treated with Clozapine and it did help him.

6. Use cognitive enhancement therapies as soon as possible. Get it covered by insurance. Most of the difficulties a long-term sufferer of serious mental illness encounters, even after psychosis has subsided, is due to cognitive damage. CET  may help them recover.

7. Municipalities should make sure that training such as that included in LEAP training is provided for all medical and police personnel, to prevent tragedies when they are called to help.

8. Follow up repeal or serious modification of the IMD exclusion, with permanent supportive housing–-not just once-a-week social worker visits–-for those most seriously disabled from mental illness, people like my brother.

9.  Make sure your school system has trained counselors and senior staff in how to recognize the signs of onset of schizophrenia and bi-polar disorder, and that they maintain a list of professional to refer parents to for help. The onset of these diseases is usually late adolescence, and educators are often in a position to help parents seek help and the student’s inclusion in programs such as the RAISE program, noted above.

10. Petition legislators to provide funding for education of more neuropsychiatrists! This could include straight out funding and/or school loan debt subsidies. Often families can’t find a therapist who can take on another patient. The shortage leads to care for the SMI being administered through well-meaning, but ill-equipped social workers, etc. Use telehealth for those who can’t get in to see a psychiatrist. First line care providers should link families to this source of information and counseling.

Be aware. Tell your representative you want them to do something to fix this. Call your members of Congress. Congress has set aside a large pool of funding to help deal with the opioid crisis. Make sure they know we want them to work on improving the care of people with serious mental illness, as well. Click here: Link to find your representative’s contact info

Please note that this list  builds on one developed by my sister, Ilene Fannery Wells, and which is posted on her website, Paulslegacyproject.org. (Note: the legislation she was advocating for here, was passed and included in the 20th Centuries Cure Act passed in 2016.)

I have written about my family’s efforts to care for my brother. The book is called Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

 

Following up on Parkland

If the past is any predictor of the future, the horror of the Parkland school shootings will now slowly recede into the sunset.

How do we get lawmakers to do what needs to be done to make America a country we are proud of and feel safe to live in?  Or, will Parkland–like New Town, Connecticut, Aurora, Colorado and all the others–continue to cause a few moments of discomfort when someone mentions it, but nothing changes?

Our United States Congress – people we elected to represent us, do nothing. They blather and bluster and argue, Russian bots put out false narratives, and the NRA lines their supporters’ campaign chests with money. And nothing changes. Well, we voted our Senators and Congressmen and state legislators into office. We can vote them out. Let’s call, write, and demonstrate that to earn our vote, we don’t just want them to “do something,” we want them to do the following:
Improve care for people with a serious mental illness. It’s not clear whether the Parkland shooter suffers from a mental illness like Schizophrenia or Bi-Polar Disorder, but he is certainly a very troubled young man. The Aurora, Colorado shooter definitely suffered from a mental illness. Following my experience of taking care of my mentally ill brother, Paul, who suffered with severe and persistent schizophrenia, I have identified the following ways we can improve care to not only improve their lives, but also save lives:

Reinstate federal and state funding for psychiatric hospitals. Most people with a serious mental illness can’t hold down a job and must be cared for using the Medicaid system. The Medicaid system excludes funding for care in an institution for mental disease (IMD). It will pay for emergency room care if someone is in serious psychosis–raving in the street, but only for a short hold. Congress can change that, eliminating the IMD exclusion and enforcing compliance with the Mental Illness Parity Act, which governs mental health coverage by private insurance companies. My brother cycled through treatment, release, decline, re-admittance, over and over again. Many people who are severely ill end up in jail, through no fault of their own. Wouldn’t it be better if they had #abedinstead in a medical facility or supportive housing?

Review and update the definition of when we may intervene when we see that someone in our community is mentally ill. If a person must have already proven themselves to be a danger to others before they may be committed, then by definition social workers and doctors can’t hold someone like the Parkland shooter until after they have already done something horrible. Both Federal and State lawmakers likely have to address this, and then fund and enforce it.

Revise HIPAA—the patient privacy laws—to allow families to play a greater role in their loved one’s care. Families can support the care process and be the early warning alarms, both to onset of problems and to worsening of them. Congress again.

Fund—and support in other ways—community out-patient mental health care and long term supportive housing. This includes anything from early intervention in schools and having more school counselors, to follow-up support for patients released from hospitals. Dr. Stephen Seager’s second documentary (link below) describes a system in practice in California that seems to be working post release. The main thing to remember is no one single thing will help the mentally ill homeless get off the streets and out of our prisons, except treatment and providing long term housing.

See also Paul’s Legacy Project  by my sister, Ilene Flannery Wells.

Secondly, Congress must act to reduce the availability of dangerous guns.  There is mental illness all around the globe, but no other first world country suffers from the gun violence we have, with our lax gun laws. Try googling “mass shooting statistics” or “gun violence.” It is  intuitively obvious that we don’t need to have so many guns floating around, so easy to buy, especially not semi-automatic assault rifles. Remember, President Reagan was shot, and he was surrounded by trained Secret Service men. Giving a gun to the good guys is not necessarily a recipe for safety.

Anyway, is owning so many guns really bringing people life satisfaction? When they have to worry if they will be shot while at church, or their children shot while in school? Or be shot while innocently sitting in a car at a stoplight, caught in the crossfire of a gang  gun battle? (which happened in NYC a couple of days ago)

Call, write, demonstrate. Let them know that we want better background checks, enforcement of laws already on the books, and sensible new gun laws, including restrictions on where guns may be sold, restrictions on who can buy, licensing, etc.

And let our elected officials know that accepting contributions from the NRA = our vote for their opponent.

Another way to reduce gun violence is by educating and supporting the people our economy is leaving behind. Automation is taking many of the jobs people without much education have performed over the years, leaving them feeling hopeless and angry.

We must fund our community colleges and trade schools to prepare people for real jobs of the future.
We must also develop and implement curricula to teach young men how to deal with setbacks in life and that their masculinity is not defined by shooting powerful guns. (See a recent article on toxic masculinity)

Our federal and our state legislators can be working on this. (Call, write, demonstrate.)

If you go through a list of the mass shootings, you can see that no one thing would have stopped every shooting. And no one thing will stop the shootings that take place in our streets on a daily basis. Focusing only on mental illness is not the answer. It will take a multi-pronged attack to slowly turn this around.

Wishful Thinking
In my essay “Wishful Thinking about Mental Illness” I discuss how our tendency to hope for the best has contributed to the perfect storm of gun availability as well as untreated mentally ill people going without care and getting access to those guns. I have also read some insightful opinion pieces by others—about male feelings of entitlement and how many men may be feeling left behind by our economy—that are a disturbing read. That trend, also, will not just right itself on its own. It will need attention.

We don’t like it when reality does not comply with our dreams; we tend to hold onto them, believing instances that don’t match our dreams were anomalies. But facts are facts. We need to face them and develop realistic strategies to fix things.

Over the years after my book about my brother was published in 2014, I participated with many family activists in many group efforts to support legislation to change the Federal approach to the care for Mental Illness and Substance Abuse. The 20th Century Cures Act was passed about a year ago, and some of the improvements are just starting to be felt. It was a start, and it took several years and the efforts of many, many people. And much more needs to be done.

My Family’s Story
When my brother was released from the New York State Psychiatric Hospital in Wingdale, New York, back in the early 1990’s, I thought the hospital administration had simply made a mistake. I thought that, unlike everyone else the hospital was releasing in the deinstitutionalization effort, my brother was still profoundly ill, too troubled for me to care for him in my home yet unable to take care of himself. I thought the authorities would see their error and move him to a facility where he could be cared for humanely. It didn’t need to be an enormous brick Dickensian hospital with bars on the windows—this was the 21st century, not the 19th—but he should not be on his own.
Over the next 20 years, I learned otherwise. Many of the mentally ill people released from hospitals—or, as the years passed, who were never admitted to hospitals—were just as confused and delusional as my brother. Our country had crossed through the looking glass; anyone who should have been helping to reopen appropriate facilities was, instead, reciting platitudes about self-directed care and consumers adhering to medication schedules, as if schizophrenia was like having high blood pressure. Take this little pill every day and you will be fine.
Many people do respond to treatment. But not the rest. And without adequate psychiatric care, hundreds of thousands of Americans are sentenced to a cruel cycle of crashing, ER visits, release, and decline, till returned to the ER – or to jail.

Finding Solutions That Fit
The first step in finding solutions is to face the truth about the problem. What possible solutions have we not yet tried? Sometimes the solutions are not perfect, but they’re the best we can do. The Iraqi Vet who can walk with her prosthetic leg is happy to have the prosthesis. She knows it is not the same as a real leg, but she is thankful for it. She doesn’t pretend she doesn’t need it. (And no one tells her to just hop.)

Care for people with mental illness is like that. Taking action on gun regulation is like that. Helping our fellow citizens who need job skills for the post robotics world is like that. We need to keep trying solutions. The problems will not just go away if we don’t think about them.
Follow up

For a personal account of my family experience, read my book, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

D. J. Jaffe, in his book Insane Consequences: How the Mental Health Industry Fails the Mentally Ill, goes through the cold hard facts of America’s mental health disaster in a way everyone interested in public health policy should read. It also proposes some of the possible avenues of recourse that can be followed to take better care of the approximately 10 million people in the USA unfortunate enough to be afflicted with serious mental illnesses like schizophrenia or serious bi-polar disorder. So if you want to understand what happened to our mental health system, and what can be done about it, read Jaffe’s Insane Consequences.

Also consider reading Surviving Schizophrenia, by Dr. Fuller Torre, which is out in a new, up to date edition. It is the bible of knowledge about the American mental health care system.
And/or watch Dr. Stephen B. Seager’s two documentaries:
Shattered Families, the Collapse of the American Mental Health System, and
Roadmap, Making a Mental Health System That Actually Works

Our societal problems will not just go away on their own. Wishing won’t change anything.

Ireland 2006107

Supportive housing for people with serious mental illness (SMI)

 

I’d like to address an element of care that was not addressed by the mental health provisions of the recently-passed 21st Century Cures Act. That legislation includes several provisions meant to help people with SMI, but it ignores the hundreds of thousands with Schizophrenia and related disorders who are most ill. These people would benefit greatly from day to day care similar to the care we provide for old people with dementia.

When I think of what kind of housing would be optimum for people with a serious mental illness like Schizophrenia, which my brother suffered with, I start by picturing places where he lived after leaving the state hospital and what was bad or good about them. Mostly, what they lacked was supervision and enough to do.

Paul and his roommate Marty had lived in an institution for twenty years before their release in 1995, and there was a reason they were held to be among the last residents released: they were very ill and couldn’t take care of themselves. In their apartment, they proved incapable of grocery shopping, laundry and cleaning. They were also taken advantage of by drug dealers and other people intent on conning them out of their social security disability income. Most people don’t realize that Schizophrenia is a disease of cognition. Sufferers cannot differentiate between stray thoughts and actual things or activities in front of their noses. On one hand, they have trouble absorbing new information, like rules and directions. Conversely, they cannot ignore voices and hallucinations that give them absurd or even dangerous things to do instead.They find budgeting, remembering dates things are due, and filling in forms next to impossible.

Their place had basic, rough and ready This End Up kind of furniture, and it got pretty beat up; the cushions soon smelled of urine. They were transported, with several other mentally ill people, every day to a day treatment center, where there were psychologists and social workers. But there wasn’t much for them to do there, and Paul tended to roam around town making faces at and pestering people. Social worker types assigned to an apartment near them saw them every morning and supposedly made sure they took their meds.There were times, though, when he was obviously not taking the medication; those were the days when he acted out, smelled to high heaven, and said bizarre things to people, threatening to kill my husband and rape my daughter, among other things. The social workers were not the greatest; they worked for an agency, not the state. Like any service, its effectiveness varied. It depends on the organization and the supervision given to the people with direct client contact.

In the “adult home” where he lived for a couple of years, after failing at apartment living and ending up back in a psychiatric facility for two years, there must have been 200 residents with no supervision or planned activities in what looked like a big cinderblock college dorm. The place was bedlam. The smell of dust and urine, the sounds of police sirens and arguments, an ambulance outside, lights flashing, waiting to take someone back to the hospital, women with empty purses and lopsided lipstick pacing around the parking area. They had beds. There was food served 3 times a day (but apparently they tended to run out; Paul was always hungry). But there was no day program anymore. Without supervision and planned activities Paul ended up breaking down every few months, and suffered very poor health.

So that is a lot of negative guidance. Next, I start at the other end – was anyplace he was housed any good? Good here meaning keeping him out of the ER and reasonably happy.

At the old peoples nursing home he was at for his last year, he was quite happy and even made a bit of sense from time to time. There were lots of staff, and they were pleasant people. There were dumb activities – someone came to the day room and played the piano and the old folks sang along to corny old songs while they tossed a beach ball around, for example. But Paul actually kind of liked them. He chatted with the mostly Caribbean orderlies and smiled at the old ladies. Mostly, it was clean and pleasant, the food acceptable, things to do, and doctors and nurses who monitored his medication and behavior, took blood samples to check the levels of things in his blood and modified dosages accordingly. He wandered off a couple of times so they put an alarm ankle monitor on him and they could retrieve him pretty easily. To keep him busy, we (his family) took him out a lot. And we COULD take him out, because with regular meals and his medication, he wasn’t too unpleasant to be around.

So what would I recommend? For an indefinite term facility, such as people with SMI need:

1. This is their home, not a stay at a hotel or hospital. Paul was assigned a roommate in the nursing home. But for their long term home, they should have some privacy- but not too much. A facility modeled on assisted living facilities for old people or folks with downs syndrome – with private rooms with a small sitting area, not just a bed. A small kitchenette w/ a microwave and small fridge for every four or five rooms. This group of rooms makes up a pod of sorts – for sort of a family unit.

2. Number of residents – the minimum necessary to absorb the cost of supervision and food preparation. Probably more than the IMD number – maybe 30. So five or six pods.

3. Supervision. They need someone to cajole residents to take their medication, at the barest minimum. An on-staff social worker 24/7 for all the pods. And a nurse morning and evenings to distribute meds. And an MD on call to evaluate if anyone looks like they’re about to go off. They might have a van to run residents to psychiatrist visits – and to regular physical health check ups, as well.

4. And there has to be a group activities area. A dining room/multipurpose room where residents can have 3 meals per day and activities such as art, board games, perhaps a separate room for CET and CBT classes. In addition and/or alternatively, there could also be activities at a central location for more than one facility. What Paul really needed and I think all humans need is a sense of purpose. He said sadly one day that he realized that no one needed him. And we all need to keep busy and we find community in communal activities. Some of this could be sheltered workshop type activities for people who are able. Paul never seemed to be able to manage that. But maybe with better monitoring of his medication levels he could.

As far as cost goes, how much are taxpayers paying now to keep so many in prison? The mentally ill population in prisons has skyrocketed with the closure of all the mental hospitals.  Surely what I am talking about would cost less than prison. Residents could be required to sign a pledge like going into Assisted Outpatient Treatment (AOT) – obey the rules or go back into a hospital. A psychiatric nurse I interviewed last month (who had actually worked at Paul’s state hospital a short while years ago) said one of the first things she does now when they do an intake of someone who is on the “hospital – release- relapse merry-go-round”, is she asks the patient what do you dream of? What is a goal you’ve always sort of had? Then the treatments that are offered are tailored to helping him or her reach that goal. The carrot side of AOT, if you will. A nice place to live is a frequently mentioned goal. There are models out there for this sort of thing. There were vendors at the NAMI convention in DC a couple of years ago who ran private facilities like this. They were lovely looking and likely very expensive. But there are ways this can be done that are more economical, and surely more humane than prison.

But funding this, even though it will pay for itself by lowering prison costs, may require eliminating something called the IMD exclusion. For more on that, please follow this blog, so you will be notified when I post part 2.
For more about my family’s story read my book about caring for my brother, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

Update: Recently, after posting this blog, I became aware of a program in South Carolina that may be helpful to some people.  Please let us know of others in the comments section, thanks. http://www.state.sc.us/dmh/consumer_housing.htm

 

IMD and Anosognosia-Whaat?

My brother suffered from schizophrenia and also from anosognosia.  His story was recently featured in an article  published on Newsworks and my voice heard on The Pulse, which is broadcast Fridays at 9 a.m. and Sundays at 10 a.m. on WHYY-FM, and can be heard live at whyy.org/thepulse or downloaded as a podcast on iTunes.

About 4% or our population suffers from a serious and persistent mental illness like schizophrenia or bipolar disorder with psychosis.  A very large percentage of these people do not believe they are ill.  This is not a willful act.  It is not anything that they can put mind over matter and overcome.  It is part of the illness.  The brain is not working right.  And this aspect of the illness is called anosognosia.

Schizophrenia is essentially a malfunction of cognition. Sufferers misinterpret what they see and hear as untrue (they are not sick; their medication contains rat poison) as well as what they imagine or daydream is real (a delusion or hallucination- they lost their sanity when they were scalped; their parents are member of Al Quaida and should be shot).  They may have moments of clarity, but then are lost again. We as a civilized nation need to remember this, and remember that these are illnesses – just as diabetes and lung cancer are illnesses. Only this time the disease is centered in the brain, not the pancreas or lungs.

Partly because of their inability to understand their own illness and their need to take medication, people with schizophrenia often need long term care in a psychiatric facility. Unfortunately, a little known feature of the Medicaid laws excludes coverage for care if someone is in an “Institution for Mental Disease” or “IMD.”  So without necessary funding, people with treatment resistant schizophrenia often end up homeless and delusional. They are treated in an emergency room when they are really bad, but then released, still confused and unable to care for themselves.

Advocates like my sister and I know that the IMD exclusion must be eliminated if we are to get good care for the people in our population who have a serious mental illness.  We need to treat them when the family identifies the problem, not wait until after they hurt someone or die of starvation and exposure living on the streets.

For more about my family’s struggle, you may wish to read Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

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The following is the original article published on Newsworks, the interview conducted and the article written by reporter Maggie Freleng.  My thanks go out to both the interviewer and Newsworks for their effort to shed light on this problem. And I hope legislators keep these facts in mind when considering assigning budgets to care for people with serious mental illness.
How to get help when you don’t believe you need it, by Maggie Freleng

Just outside of New York City in a farmhouse in Bedford, New York, Katherine Flannery Dering is looking at photos of her brother, Paul. Paul is one of her 10 siblings, but he stands out among them.

Dering was 12 when Paul was born. She remembers him as the kid who would come running out to say “hi” when she came home from college. She describes him as a handsome boy, about 6’1″, with blonde hair and “startling blue eyes.” He was on the football team, but she said he was also a very sentimental kid.

“He wasn’t afraid to come over and hug you.”

A life, falling apart

Paul died eight years ago, when he was 48 years old. And even when he was dying, he didn’t know he was ill.

“He’d been told he had cancer but he said he didn’t have cancer,” said Dering. “He said he had bad acne, which he swallowed and it got into his lungs and if he would just cough it out, he would get better.”

Paul did have cancer, and he also had schizophrenia. He was diagnosed when he was 16, but he never acknowledged it. He told people he’d been shot in the head.

Paul spent most of his life in inpatient care facilities from the 1970s until the 1990s, when states shut down these psychiatric hospitals. He was released to live on his own where, without constant care and medication, his mental and physical health declined. Dering recalled that he became unstable and unpredictable. He was so consumed with his own thoughts that he lost the ability to care for himself, barely eating and not cleaning himself or his home.

He maintained that his unstable behavior was from external factors, like being shot in the head.

Her brother sufferered from a condition known as anosognosia– the inability to recognize one’s own illness. It’s very common in people with schizophrenia.

Unaware of illness, refusing to get help

Doctors have been aware for centuries that some people are blind to their own ailments, but the person who coined the term ‘anosognosia’ was the French neurologist Joseph Babinski.

In the early 1900s, Babinski treated two partially paralyzed patients, each of whom was unable to move her left arm. When asked to do so, one woman acted as if the question had not been asked; the other insisted that she had done it. Babinski called this lack of awareness anosognosia. Experts now recognize it in conditions as diverse as Alzheimer’s disease, brain injury and anorexia.

Experts don’t know for sure what causes anosognosia, but they have noticed that it involves an imbalance between the two halves of the brain, the hemispheres.

Psychiatrist Philip Gerretsen, a researcher at the Centre for Addiction and Mental Health in Toronto, said the setup is like a twin propeller plane.

“If you think of each propeller as representing one of the brain’s hemispheres, the two work in tandem or work together to help the plane fly in the proper way,” he said.

“Now in a healthy brain, things tend to be smooth moving along in the right direction. Whereas in anosognosia, one of the brain hemispheres is underactive and then veers the brain, or the plane, in the wrong direction.”

In a recent study, Gerretsen and his team asked people with schizophrenia to ungergo brain scans while answering a list of questions. Things like: Do you have schizophrenia? Are you mentally well? Is the devil’s voice real? Do you need treatment?

Those who had the most trouble distinguishing thoughts from reality tended to have asymmetrical activity in their brains, with the left hemisphere working harder than the right.

Gerretsen speculates that a factor in this phenomenon is the brain chemical dopamine. Often called the happiness hormone, dopamine pulses through the brain when people fall in love or eat a satisfying meal. But Gerretsen said that dopamine also assigns levels of importance to our experiences. And when dopamine goes haywire, as in a brain with anosognosia, neutral occurrences, such as the glance of a stranger, can take on too much significance.

“They have these strong beliefs that they are being, say, followed by the Mafia or someone is persecuting them and in those contexts dopamine seems to be assigning a higher level of meaning to these thoughts than it otherwise should be.”

Dissecting your own thoughts

“Sometimes the things your brain is telling you are happening aren’t actually happening,” said Michael Hedrick, who writes about living with schizophrenia for The New York Times, The Washington Post, Scientific American among others.

“For instance, if you walk into some store or some restaurant and you believe people are talking about you or you hear laughter and you believe that laughter is about you,” he said. “Sometimes it is really hard to separate that belief, that paranoia, that delusion from reality.”

Hedrick was diagnosed with schizophrenia 10 years ago when he was 20, and said it’s been a wild ride.

“Even now I can’t trust entirely what my brain is saying to me. It’s kinda like I have two levels of consciousness…I have my conscious self that knows what’s going on and I have my crazy brain which tells me things and I’m able to dispute what my crazy brain is telling me in my conscious brain.”

Michael got on medication when he was first diagnosed and has stayed on his medication ever since. He said he believes it is why, unlike many people, he is able to have insight into his illness. But he also said the only reason he got on medication in the first place was to get out of the hospital after his initial episode.

“I figured if I took my meds they’d see I was improving and they would let me out,” he said. But he actually was improving.

Michael said he has not had a relapse since, and said he feels lucky he got medication at an early age. He thinks it’s why he is able to function better than people like Paul who have had years of inconsistent care.

When Michael was first showing signs of schizophrenia, he believed he was a prophet sent here to establish world peace. He said his parents knew something was wrong when he started telling them about his mission, and he was frustrated that they didn’t believe him.

“I wanted them to understand so badly but they knew something was wrong and they took me to the hospital,” he said.

“It felt like betrayal for them to do that, but I can see clearly now…It’s hard to explain any of that to anyone who is normal.”

Helping families help their loved ones

This is where many families face problems getting help; communicating with a with a loved one when that person is divorced from reality.

“There’s really no reason to keep throwing gasoline on the fire of this conflict,” said psychologist Xavier Amador.

Amador is the author of many books including one entitled, “I ‘m not sick, I don’t need help.” He’s also the founder of the LEAP Institute. Which stands for: Listen, Empathize, Agree and Partner.

Trying to force a person with anosognosia to see things the way they really are only deepens the rift. Instead, Amador encourages caretakers to acknowledge the sick person’s version of events, and to make suggestions, not proclamations.

“I wouldn’t want treatment for an illness I don’t believe I have.”

He said the goal is to find common ground. Once a trusting relationship has been re-established, it’s more likely the person will take advice and make better, autonomous, decisions. Like getting on and staying on medication.

Grieving, remembering, and advocating for change

Katherine Dering said her brother Paul had been out of constant care for so long, she was never able to get him back on track. Eventually his health severely diminished. He developed pneumonia and was put into a nursing home where he was later diagnosed with lung cancer.

“When someone dies, you grieve them,” said Katherine. “But if they don’t die — if they have schizophrenia and they don’t acknowledge they are even sick and do bizarre things and disrupt every family gathering — you’re in a constant state of grieving. You never get over it because they are still there.”

One of the last times the Flannery siblings got together was on St. Patrick’s Day in March of 2008. Paul died a few months later on May 1.

Today, Katherine is doing advocacy work for families dealing with mental illness. She goes to conventions and seminars with her sister Ilene Flannery Wells, Paul’s twin. They dress up as Nellie Bly and Dorothea Dix, two women critical in mental health activism at the turn of the century and carry posters reading: “Schizophrenia: It’s medical not behavioral” with pictures of Paul.

Dering brings posters and signs when she is advocating at conventions. One headline stands out. It says, “I Was A Person.” The poster features two pictures of Paul, one at his 9th grade graduation and the other taken when he was only 48. He looks about 80, scrawny and toothless. But Dering wants people to see the person she loved.

“He was pretty looney at times but he was a person,” she said.

Katherine wrote a book about Paul’s life called “Shot in the Head,” and doctors are taking steps every day to figure out ways to help people like him.

Tearing up, she describesd one of her favorite memories of Paul. One day they drove up to a lookout point to watch eagles together. As they were standing there, Paul brought up reincarnation.

“I asked him, ‘Does he want to come back as one of these eagles?’ And he said, ‘I’d just like to come back as one of the sane ones’.”