Accidental Advocate

Accidental advocate

Four years ago, I published a memoir about taking care of my Schizophrenic brother. When I was working on the book (Shot in the Head, a Sister’s Memoir, a Brother’s Struggle), I did research into national statistics on mental illness, and I was horrified. My family had always thought the poor care my brother received was a horrible mistake. We thought that his social workers must not have realized that the modern psychotropic medications—reputed to virtually cure psychosis—didn’t really help him. They must not have realized that he needed to live in sheltered, supervised housing, not be expected to take care of himself. But, to the contrary, we found this abandonment of people with serious mental illnesses (SMI) to be a nationwide scourge. He was one of hundreds of thousands, even millions of people suffering from serious mental illness, abandoned by the country’s mental health system, destined to a miserable half life of delusions, homelessness and victimization. More than one percent of our population suffers from schizophrenia (that’s over 3 million people), and more than half of them need the kind of care my brother needed. And they’re not getting it.

Most people with a serious mental illness cannot keep a job. Their families often try their best to help them, but they simply can’t handle them when they’re as difficult as my brother. They depend on social services, notably Medicaid, for health care coverage.  Medicaid does a decent job of  providing medical care to the least fortunate of our fellow citizens if they suffer from diabetes or bronchitis, cancer or eye infections. Medicaid pays for their care for physical ailments, even if it involves a multi-week stay in a hospital. But Medicaid funds, from its inception in the mid 1960’s, were barred from caring for people with a psychiatric illness on an inpatient basis. The legislation prohibits its use in the treatment of adults (persons between the ages of 21 and 64) in facilities having more than 16 beds for the specific treatment of mental disorders, a.k.a. institutions for mental disease (IMD). It also effectively prevents the management of long term supervised housing for people whose mental disabilities prevent them from living independently.

Congress included coverage for Alzheimer’s disease and intellectual disabilities in Medicaid legislation; many of us have a grandmother or other senior relative being cared for in a nursing home because of their dementia, the care being paid for by Medicaid. But when the Medicaid legislation was passed there was a concern that if IMD’s were included in the Medicaid program, the states would continue to warehouse people in hospitals instead of providing services in the community, which was their goal. That reasoning has not lived up to the promise, however. Without funding, most IMD’s have closed. Yet communities have failed to provide adequate comprehensive community-based services to take their place, leaving those with serious mental illnesses without adequate care.  No institutions are helping families care for their seriously mentally ill loved ones anymore. Those who are ill are ferried into ERs, then released with a bottle of pills and no real help—if they are lucky. In many cases, they end up in prison, or shot by police called to help the family when their loved one is acting out.

My brother Paul, luckily, never ended up in jail or shot by police, but he was given desultory care, at best.  He was too dangerous for us to let him live at home with us, yet the “adult homes” he was placed in were inadequate for the severity of his symptoms.

I determined that this had to change. I joined up with organizations of family members like me who were lobbying Washington DC for improved care practices. Organizations like the Treatment Advocacy Center, and advocates from Baltimore, Sacramento & Los Angeles, New Orleans—all over the United States. And things have begun to change. With the implementation of the 20th Century Cures Act last year, the Substance Abuse and Mental Health Agency (SAMHSA) has a new, cabinet level head of the subagency that deals with serious mental illness, and they are revamping its activities to make sure those who are most seriously ill get the treatment they need. I now serve on the communications committee of the National Shattering the Silence Coalition, an organization of activist like my self who are fighting to have the IMD exclusion to Medicaid repealed.

There is much more work to be done.  

And now I have added another cause to my advocacy, another response to my writing.

When my teenaged nephew died of a heroin overdose, I had no intention of getting involved in any further advocacy work. I wrote the poetry which eventually became my chapbook, Aftermath, from my sense of sorrow, not with any didactic interests. I found I had to slow down and let the grief sink in. Everything I saw around me was tinged with loss. I had to make sense of this, and of the changed circumstances of my family.  When more sorrows arose—the deaths of two people close to me—it compounded my grief. The collection became a kind of meditation on loss and a search for renewal. 

Yet again, I have found myself immersed in advocacy. I am appalled at the greed and ineptitude that have contributed to the opioid crisis. I am mystified at how little current treatment standards do to help people with substance use disorder (SUD) overcome their addiction and move on to a productive life.  I now speak out for tighter regulation to hold rehab centers accountable for the efficacy of their practices, including evidence- based practices for rehab treatment.  And I encourage efforts to hold accountable the drug companies whose aggressive marketing of drugs like OxyContin contributed to the crisis.

The news is filled with articles about lives lost to opiates. West Virginia and Kentucky may be the epicenter of the plague, but no town in the U. S. has escaped the scourge.  About 75,000 people died of an opiate overdose in the past year. We also, all too often, are horrified to read about yet another mass shooting, many of them involving a shooter with untreated mental illness.  And for every life lost, an entire family suffers.

Congress appears to have come to the realization that the IMD exclusion is preventing the funding of care for people trying to overcome their SUD, as well as those with a SMI.  So people who cannot afford inpatient care try to deal with their issues using outpatient services. There is legislation in the works that may, at least temporarily, allow Medicaid funds to pay for up to a month of in-patient treatment. The legislation is incomplete, however, as it does not take into account how many people with SUD are also suffering from a severe mental illness. Both conditions need inpatient medical care, using verified treatment methods and holding the treatment facility accountable for statistically positive results.

I speak out whatever chance I get about the need for better treatment of both SUD and SMI. (I’m becoming a master at acronyms!) All kidding aside, I am reminded of the parable of the Good Samaritan, who found a man from another town beaten and robbed in a ditch. He took the man home and nursed him back to health. Growing up, we were taught that we must care for people who suffer, help them back on their feet. I guess the lessons sunk in.

One of my poems in Aftermath includes the lines:

Even then you and I sensed this could happen only once. Our lives/ 

would now have a before and after.

Caring for my brother was an experience like that. Losing my nephew was an experience like that.  Sometimes we go through a difficult time in our life and we are changed. In my case, I became – quite by accident – an advocate. 

***

Katherine Flannery Dering is a writer and mental health advocate and serves on the communications committee of the Shattering the Silence Coalition, (http://www.nationalshatteringsilencecoalition.org) an organization that seeks to highlight the need for better care for the millions of people suffering from serious brain disorders. She believes words can effect change, and she hopes her words help in this effort. She also blogs on behalf of sensible controls over illegal opiates and results-proven rehab programs.

Her chapbook, Aftermath, began during the weeks following the death of her teenage nephew from a drug overdose. During the ensuing months, two other close friends died, as well. This collection is, in part, reflections on the question, How do I make sense of my life in the face of death’s inevitability? How do any of us?  She empathizes with other victims of the country’s opioid epidemic and encourages family survivors to speak out for better, evidenced-based treatment. These poems delve into the sorrow of losing someone to drug addiction and asks the question, where do I go from here?

Ms. Dering has lived in Westchester county, New York for over thirty years. Currently, she serves on the executive committee of the Katonah Poetry Series, is on the board of the local chapter of the League of Women Voters, and is an active member of the Pound Ridge Authors Society.  She blogs at www.deringkatherine.wordpress.com.  Visit her website at www.katherineflannerydering.com.  Her chapbook, Aftermath, is available at  https://www.finishinglinepress.com/product/aftermath-by-katherine-flannery-dering/   and at Amazon. Her memoir, Shot in the Head, A Sister’s Memoir, a Brother’s Struggle is available at Amazon.

Schizophrenia and family caregiving   

A Book Club Discussion Guide to Shot in the Head, a Sister’s Memoir, a Brother’s Struggle

This story can impact the reader at several levels. However you approach it – as personal memoir, curiosity about the reality of schizophrenia, or as a simple story of how a family came together to care for a loved one with a serious mental illness,  I hope these questions will help to stimulate some good discussions.

1.    Some of the scenes in Shot in the Head take place more than fifty years ago.  Others involve emotionally-charged situations.  The author states that the book’s dialogue and sequence of events are her “best efforts to present what really took place.” How is its accuracy important to your experience of the book?  What do you expect when you read a book classified  as memoir?

2.    The author describes her lack of involvement in Paul’s care in the first few years of his hospitalization.  What factors contributed to that distance?  How does she change over the course of Paul’s illness?

3.   As much as this book is about Paul and Katherine, it is also about the whole family, especially the other siblings – Monica, Ilene, Patrick, Sheila, etc.  Did you identify with any of the siblings? Which one?  How did ​their relationship with their brother change during the course of his illness?  Where do you see the changes?

4.     Paul’s care changes dramatically over his lifetime.  How do Federal and State legislation impact his care?  What role do you think public agencies, the medical community and insurance companies should play in the care of someone like Paul?  What role should be played by the family – parents, siblings, children? What help do family caregivers need?

5.    How is the care received by people who suffer from brain diseases different from the care received by people who suffer from malfunctions of other body organs such as the kidneys, heart or pancreas?  What factors have led to these differences?  Do you think a person with serious mental illness should be forced to accept treatment? 

6.    Society also deals with brain disease differently than other types of illness.  For example, if your neighbor has breast cancer or a heart attack, you bake the family a cake or offer to help get the patient to medical appointments.  How do you react if you find out a neighbor has bi-polar disorder or schizophrenia?  Why?  How can this change?  

7.    Which of the stories about Paul- things he did, things that happened to him – touched you the most?  

8.    When Paul begins to suffer pulmonary problems, he is diagnosed first with pneumonia.  How do you think his cognitive impairment impacted the level of care he received?  How did it impact his care from the oncologist?

9.    How did his care change when his sisters had him transferred to a nursing home?  How did his behavior change?  Why do you think it changed?

10.    The author uses several genres to put forward her story – narrative, emails, poetry, pictures.  How do these different genres impact the reader’s enjoyment and understanding of the issues and the characters?

11.    Do you believe Paul is better or worse off when he is released from the state hospital?  Give examples of how his life changes.  How do we balance the trade-offs between a person’s desire for freedom and the knowledge of the medical establishment that he or she needs supervision?  Where else in our lives do we see similar trade-offs?

12.  Has your perception of mental illness changed since reading Shot in the Head?  If so, how?

 

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

Wishful Thinking about Mental Illness

In the wake of the Parkland school shooting, we hear a lot of references to mental illness. But many accounts confuse mental health and personality disorders with serious, crippling mental illness. Because we are unclear about what constitutes serious mental illness and what is some other behavioral issue, our country is conflicted about what and how much to do for whom. So we do very little, and usually too late. I know; my brother suffered from schizophrenia, and I have seen how difficult it is to get care for those who are seriously ill.

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. His own sister-in-law suffers from a mental illness, and he has experienced first hand the insane maze of ineffectual systems that our country has amassed in the past 60 or 70 years that do not do what we want them to do. They don’t help us care for our mentally ill brethren the way that science and social programs could be doing it. And every year it gets worse. Mr. Jaffe points out where it is all going wrong and some ways it might be improved. It is an impressive volume of information. He gives us many facts we don’t really want to hear, but need to.

Wishful Thinking

There is an overwhelming desire in the American public to believe that any obstacle can be overcome, that with enough grit and determination, each of us is capable of vanquishing demons. We applaud wounded Iraqi vets and victims of the Boston Marathon pressure cooker bombing as they struggle to manage their new prosthetic legs. We hold up images of the amazing handicapped athletes at the Paralympic Games and say, “See? Anything is possible. You can do anything, no matter what life has thrown your way.”
This wishful thinking fuels the supporters of the NRA to believe that an armed English teacher can fight off a determined mass shooter with an assault rifle. They want to believe that a series of interlocking and complex regulations involving fifty states as well as federal agencies regarding background checks, will combine with vigilant and well funded social workers and local police (whose usual duties involve chasing shoplifters and ticketing speeders) to stop the next angry would-be shooter. Not to mention arming teachers. They want to believe that something can be done that will stop this horrible epidemic of shootings and still allow them to keep easy access to firearms. In reality, even people as mentally ill as my brother are seldom admitted to hospitals except for 48 or 72 hour holds. And people as ill as my brother would likely never have the logical planning ability to plan an attack such as those we’ve seen at schools. In the meantime, people dealing with anger issues or other behavioral issues that seem to drive many of these shooters would seldom be caught by existing background checks.
It is wishful thinking that also fuels the so-called recovery movement in mental health circles, a movement that holds that anyone, even the most severely psychotic individuals afflicted with schizophrenia, can recover, given the right cocktail of medications, special diet, yoga for stress relief, faith in God, and/or the latest computer training program. Close all the psychiatric hospitals, they say. Perhaps hearing voices is simply another way to experience the world. Perhaps people like living in filth under highway overpasses and on subway grates in the dead of winter. They are entitled to live as they want, to have the freedom to follow their own dreams. Most memoirs or other personal narratives I have found about dealing with a mentally ill family member reinforce the recovery/anything is possible belief system. They were stories written about the lucky few who did recover; this is what we all want to believe will happen. Unfortunately, that result is achieved by very few.
We don’t like it when reality does not comply with our dreams.

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 (he alternately thought he was James Bond or a recently scalped Mohican Indian, and had threatened to rape my daughter) yet unable to take care of himself. Surely the authorities would see their error and move him to a facility where he could be cared for humanely. It certainly 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 medication, but only if first — they actually get treatment,  and second– also with a great deal of community support. Perhaps 50% of people diagnosed with a serious mental illness can achieve a modicum of recovery this way. 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.

But how do we relate to these cold statistics? Clinicians and researchers can recite statistics and probabilities all they want. The problems families like mine face are personal. It is personal when your brother is released from the hospital and you find him hours later in the bathroom, blood all over the place, trying to cut the radio out of that spot in his head just behind his ear. It is personal when a loved one cannot care for him or herself, and no one will help, and when you fear what they might do next.

So if not quite anything is possible; what should we do?
With knowledge, such as that compiled in Mr. Jaffe’s book, we can approach an approximation of that mythical anything if we build the right mix of that knowledge and humane care into our mental health policies. And the first step in finding the right care is to face the truth about what is possible and how to achieve it. 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. With the right mix of medicine and supervision, many more of the people currently suffering might have a much better life. And for the most seriously ill, comfortable supervised long term housing would make their lives much, much better.

Follow up
Mr. Jaffe’s book goes through many of the obstacles and wrong turns and 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.
For a personal account of my family experience, read my book, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.
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

Learn more about the health problem afflicting 10 million Americans that no one want to deal with. It will not just go away on its own. And wishing won’t make it go away. We have to face it, with a mix of remedies tailored to the type and severity of illness.

 

Memoir of caring for a sibling with Schizophrenia

Using prose, poetry, emails and family photos, Shot in the Head a Sister’s Memoir, a Brother’s Struggle, is a mixed genre memoir by Katherine Flannery Dering that follows her family’s efforts to care for her younger brother, who first exhibited signs of schizophrenia at age 16. It is a personal tale of trying to make sense of our country’s disintegrating system of care for mental illness, while dealing with the aftermath of her loved one’s struggle.

It has earned 4.5 out of 5 stars from 19 ratings and 12 reviews on Goodreads and a 4.8/5 stars rating on 25 reviews on Amazon.

“enlightening and educational work!” New York Journal of Books

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Here are links to three web  pages with more information:

Click here for:    Publisher’s information about Shot in the Head

This is a direct link to  Amazon Reviews, (which were great) The book is on sale for the gift buying season.

This site provides several pages of information, including where to buy the book, some reviews, information about the book’s cover art, and additional pictures and information about the family:  www.shotintheheadbook.com

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