Christmas Then and Now

About five months after my family moved to Switzerland in 1959, my mother went into labor early, with what we thought would be her eighth child. After three weeks of complete bed rest, the surprise twin babies – eighth and ninth – were born Christmas Day.

How auspicious!  Paul was so beautiful, with his blond curls and long, lanky body!  Even his fingers were long and elegant.  Ilene, two pounds smaller than Paul, was tiny and had straight dark hair and intense dark eyes set into a little round face.  She looked like the Japanese dolls friends had sent us from Japan in the early ’50’s.

The twins were baptized a few weeks later in a tiny, Medieval stone church in the nearby town of Versoix, each of them dressed in a piece of the Christening gown my father and the older seven children had been baptized in.  My older sister Sheila and I (first and second of the brood) held them for the service, filling in for the official godparents, who were back in the States.

On Christmas mornings, for all the years that the twins were growing up, the ten of us kids (our tenth – and last – child, Julia, was born two years after the twins) woke before dawn. We waited at the top of the stairs in our pajamas, our dog Charlie whining and whimpering in the excitement, until Mother and Dad went downstairs and turned on the tree lights.  Once they gave us the go-ahead, we all rushed down to the living room, big kids looking out for little kids, and opened our presents in a frenzy of ripping paper and squeals and barking and the beeping and clanking of new toys.

Someone put Christmas music on the record player.

O little town of Bethlehem/How still we see thee lie./Above thy deep and dreamless sleep/The silent stars go by.

 … Our one perfect day of the year.

After presents had been opened, we older girls helped Mother fix a big breakfast of bacon and eggs that we ate in the dining room.  The candles on the Advent wreath, changed out from their pink and lavender to red in honor of the day, blazed all morning.  There were too many of us to go to church together, so those who hadn’t been to Midnight Mass drifted off to Mass in twos and threes.

From noon on, Christmas changed over to the twins’ birthday. Following family birthday tradition, Ilene didn’t have to help with dishes or set the table, the usual girl chores.  Both she and Paul got to laze around in the living room and ask other people to bring them a soda or a glass of juice while they played with their new toys or watched some old movie on TV, which they got to choose.  At dinner, while Dad read the gospel from the Christmas Mass, Paul and Ilene got to relight the red candles on the Advent Wreath.  Mother carried in the roast beef with great ceremony and placed it in front of Dad, and the twins got their pick of the roast – they usually chose the ends, valuable mostly because there were only two of them – and they were served first. Our ten sequined, red felt Christmas stockings hung from the dining room fireplace mantle.  Above them, the little brass angels of the Swedish chimes, pushed by the rising heat of little candles, clanged against bells as they swung by.

Dessert was always the same – two layer-cakes in the shape of a Christmas tree, one white, one chocolate, both of them made from Betty Crocker mixes and decorated with green frosting and little globs of red, blue and yellow frosting made to look like Christmas tree ornaments.  After the dinner plates were cleared away, Sheila, Mary Grace or I would go out to the kitchen to light the candles on the cakes. The twins would squirm and grin kitty-corner from each other at the long table.  When we gave the signal, Johnny or Patrick would turn off the lights and start the singing and we’d deliver the cakes and birthday presents by the light of all the candles.

Fast forward to today

The above is an excerpt from Shot in the Head, A Sister’s Memoir, a Brother’s Struggle, my memoir about my family, and more specifically about taking care of my brother, Paul.

Little did we know back in 1970 when the ten of us posed for this picture – that’s Paul petting our dog, Charlie – how it would all turn out.  Our beautiful baby Paul grew into a handsome teenager, full of promise…

…until he succumbed to a psychotic episode at age 16. Christmas was never the same again for our family.  Despite frantic efforts to get him psychiatric care, Schizophrenia killed the brother we knew and left in his place a confused, delusional man, who had no more than a few scattered minutes of sanity ever again. And his situation worsened over the years, as most of our psychiatric facilities were closed and fewer and fewer facilities were available for the care of those most seriously ill. 

Our system of care for people with serious mental illnesses in our country is simply not working.  4% of our population suffers from a serious mental illness, and many of them, like my brother Paul, never really recover, even if they stay on medication. Only about one-third of people diagnosed with schizophrenia recover, a third cycle in and out, and a third never achieve any appreciable recovery. Many of these are homeless or in jail, due to the lack of appropriate care facilities and supportive housing.

Ilene’s Christmas Birthday Wish

Over the past few years, the families of people like Paul came together and let our congressmen and senators know that we wanted them to end the IMD exclusion, a provision of Medicaid that prohibits providing benefits – i.e. funding – to people being cared for in an “institution of mental disease.” So far, even when the 20th Century Cures Act was passed, it did not address this issue. But although the provision has still not been repealed, Alex M. Azar, Secretary of Health and Human Services has recently released instructions allowing the States to apply for a waiver to the provision, which will allow them to care for seriously mentally ill people in the hospital, if that is what their illness requires.  This is a step forward, but not enough. The most seriously ill, like my brother, however, need supportive housing. It is as important a component of their care as their medications. But because of the IMD, long term housing for mentally ill people still cannot include supervisory and medical staff.

A psychiatric nurse who works in a county upstate told me once that they saw the same mentally ill patients cycle onto their ward over and over again. “It’s David again,” they’d say to each other when the call came in that a psychotic man had been brought into the ER. Or Cheryl, or John… They knew what drugs worked the last time, so they’d get him or her stabilized in four or five days, then release them to a taxi with a paper prescription, $25 and one night prepaid in a local motel. They would be back in a month or two.

Hospitalization, stabilization, release, decline,
psychosis, fights, rehospitalization or jail.
No day clinic, no pretense of psychiatric care.
You’re in charge of yourself.
Let someone know if you’re feeling bad.

Nothing to do and no supervision.
300 men and women living in one building,
Delusions, mania, confusion, despair.
Somebody crashes, now there’s another
Police car stops. They’re off with my brother.

Hospitalization, stabilization, release, decline,
psychosis, fights, rehospitalization or jail.

My best wishes to all for a happy and healthy holiday season.

To learn more about schizophrenia and what is needed to improve care for people with serious brain disorders, visit the websites of the Treatment Advocacy Center and/or Mental Illness Policy Org.

To learn more about possible supportive housing options, see my blog with that title on this WordPress address.  Let’s make 2020 the year we help the mentally ill homeless off the street and out of hell-hole “adult homes.”

 

Male Myth and Guns

Where does the urge by young men to strap on powerful guns and shoot up a bunch of strangers even come from? Why do young men keep doing it? Why are they so angry?

For a possible answer, we might take a look at our society’s major myths. In the Western world, the familiar myths that help us make sense of the people and events around us glorify male archetypes, heroes who tamed wild, unknown lands. I’m thinking of the notation at the edge of old maps that say things like “Beyond here, there be dragons.” Often the myth that fuels our perception of events is that of the redeemer— the young man who journeys far from his home to fight unknown foes and come back to his home as a hero: Odysseus/Ulysses and Perseus in classical times; the Lone Ranger, Luke Skywalker and Spiderman in ours. This kind of hero uses his superior strength, intelligence, skill with weapons, and the favor of the gods to tame evil giants, one-eyed monsters, and greedy evil-doers.

The problem is that today, most of our worlds have been conquered. And so our continuing reverence for this kind of myth creates a tension that cannot be resolved without making trouble for society.  It no longer serves our tamed and heavily populated world. Yet, to the extent the brave warrior archetype is the one which fills young peoples’ imaginations, men will want to be the warrior and women will want to be with the warrior. All young people want approval, and hopefully admiration, of their peers and parents. But allowing this kind of myth to fuel their approach to the world only gets us all in trouble. this kind of thinking helps young men up so they face setbacks as if they have just drunk ten cups of coffee. They want to DO SOMETHING NOW!!  They don’t set themselves to studying and planning and working with others. They come to believe that strapping on a semi-automatic weapon and shooting the people at the church or synagogue down the road or their high school will somehow vanquish society’s enemies. Yet the real evil we must face is more likely to be a pervert in the apartment in the next building or a greedy corporate raider–not to mention climate change woes–not a one-eyed giant in a strange, far-away land. 

Now, before you start, YES, we have way too many guns floating around in the U.S.A.—an estimated 400,000,000 of them, including 10,000,000 – that’s millions – assault-style rifles, capable of shooting over 40 bullets in one minute.  We thoughtful people can’t seem to get our lawmakers to hear our demands for sensible gun control legislation.   And YES, some of these shootings are committed by people who are mentally ill. But it is a very low percentage, less than the occurrence of serious mental illness in the population. (And, by the way, we are doing almost nothing to help these people before a tragedy occurs. See my blog Following up on Parkland) And YES, violent video games might give people ideas. But women play video games, too, and they almost never commit mass shootings. 60% of Japanese people play these video games—more than in the U.S.A., but they hardly commit any gun violence at all. Men in European countries and Canada face problems with their jobs and anger over perceived unfairness in the workplace, but they hardly ever engage in shooting sprees.  So how do we make sense of this?

In the U.S. we are seeing the convergence of three problems: the availability of firearms,  the build-up of these economic and social provocations and stressors and a third factor—a lifetime of hearing and seeing this conquering hero archetype projected around them over and over again. The combination is deadly.

We need new myths.

There are still new worlds to explore and conquer. It’s just that they will not be discovered or explored by superheroes, cowboys and adventurers. The new worlds we face as a society will be explored by teams of people working cooperatively, depending on their intelligence, reasoning ability, and support teams—like astronauts, who depend on an extraordinary team of scientists and technicians to make their giant leaps for mankind. It will not be by loners, acting on their intuition, innate skill, and big guns. There are no one-eyed cyclops out there for us to shoot and save the world in an instant. We need great stories that give praise to intelligence and reasoning ability, skills that will fuel the ambitions of young men and women going forward. Our new heroes will be scientists and people who can lead people to work together to solve such problems as infrastructure needs and mitigating the impact of climate change.

How much happier the young men of our society—and the people around them—would be if they were raised to praise and wish to emulate the good father, rather than the man who abandons his family to have adventures. how much happier and better off if our young men held as their idea not Odysseus, but more like the Jimmy Stuart character in It’s a Wonderful Life. Or if they were raised to emulate the idealism and self-sacrifice of Jimmy Stuart again in Mr. Smith Goes to Washington, making a difference without a gun anywhere in sight. Those movies were very popular in the past, but more recently have been replaced by comic-book strong, independent men or X-men who have no family responsibilities and who chase evil-doers with guns blazing. They’re not even pretending to try to get back to Penelope.

I think our society recognizes that the lone hero archetype isn’t quite right, but it doesn’t quite know how to fix it. Let’s all try.

Post Script

And where shall women find heroines to emulate in the old myths? There’s certainly no place for a lady in any of them, at least not as an actor having the adventures. another reason for some new myths. But my thoughts on that will have to wait for another day. Coming soon.

Not Thinking About Schizophrenia

Nobody really knows why the universe exists or how it came into being. But people through the ages have felt obliged to come up with theories and came to call them truth.

Nobody knows if our belated efforts to slow global warming will make any difference in the long run, but great efforts are made in the name of science

Nobody knows what will happen to our spirits at death. But people through the ages have devised theories and called them revelation.

Nobody knows – – so many things.

Do you know how a squirrel can manage to leap six feet through the air to get to the top of my bird feeder?

Or why mothers and daughters argue and so often carry resentment like a badge?

Or how to face caring for a parent or sibling who is slowly dying?

Do you know why 1.1% of the world’s population develops schizophrenia? Or why my little brother Paul–he, of the ten of us siblings–was one of the unlucky ones? Or why as a society we have abandoned people like Paul? Why is out of sight, out of mind, unless it’s your brother? Why are our mentally ill brothers and sisters dying in the streets? Why aren’t we doing more?

Nobody knows.

What I do know is that it is easier to try to figure out how to reduce carbon emissions or to theorize how the Big Bang may have reverberated through space, than it is to search for answers to what drives the human psyche. That may forever be what nobody knows.

 

Mother’s Day

My younger brother Paul suffered from severe and treatment-resistant schizophrenia. He developed the illness at age 16, in 1976, and never really recovered. He was frequently delusional and paranoid, and sometimes threatened violence. But our mother never gave up on him, always believing that one day soon, a cure would be found. It was our job to keep him safe until then.

At the onset of Paul’s illness, psychologists still tossed around terms that blamed the mother in some way for the condition. The terms “smothering mothering” and the “schizophrenic mother” were bandied about in pseudo-scientific literature. At other times mental illness was often blamed on repressed homosexuality or an Oedipal complex – Freudian beliefs still popular in some circles. And in many people’s heads, it was linked to the sufferer’s own sinful ways or to some God-assigned stigma. Mother knew this was nonsense – or tried to believe it was nonsense, and carried on, determined to do her best for her son.

Paul’s care was often hampered by lack of funding and accessibility to good care. Because of the many false beliefs in the general population, insurance companies were permitted to set lower lifetime limits for expenditures on medical care for mental illness and higher co-pays – often 50%. This is how my parents reached the point that they could no longer afford to care for Paul themselves. After about 18 months, after mortgaging the house to the hilt to pay hospital and doctor bills, they were forced to sign him over to be a ward of the state, and he was committed to a state psychiatric hospital. But no sooner was Paul admitted, than hospitals began to close. Little by little, the less severely ill were released.

The nineteen seventies and eighties saw a public zeal to release all mental patients from mental hospitals. I had been living in Minnesota when Paul became ill, but in 1981, I moved back to New York State to be closer to my family after a divorce, and I began to become involved in his care. I found that New York had already begun to empty and close all the state mental hospitals. This wasn’t unique to New York; it was a national trend. Beginning as a trickle, the great emptying had become a torrent by the mid-1980s. The United States had 340 public psychiatric beds available per 100,000 people in 1955; by 2005 there were only 17 beds per 100,000. And hospitals still continue to close every year, across the country. Much of this shrinkage in capacity at psychiatric hospitals during these years was a result, direct or indirect, of the introduction in 1954 of chlorpromazine (Thorazine), the first effective antipsychotic, which made it possible, for the first time, to control the symptoms of schizophrenia and thus discharge some patients. Paul was on Thorazine and similar medications for many years.

By the mid-1980s, the doctors treating Paul were well aware that a neurological component was primary to the disease; it was not a behavioral issue. Doctors were also well aware that not everyone benefitted from the new medications; some still needed long term, supportive care. But despite the rapidly growing body of knowledge that pointed clearly to biological, neurological causes, old stereotypes persisted, and they took form in efforts to release all patients from mental hospitals.

During this time, well-intentioned do-gooders, as my father called them, had sued New York State to close down the huge state institutions, made infamous by investigative reporting on places like Willowbrook, on Long Island, where developmentally disabled people had been mistreated. This movement was intensified by an aspect of Medicaid: its reimbursement schedules were written to withhold payments to large mental institutions, accelerating the closures nationwide. New laws called for smaller, more humane, community-based residential facilities for patients needing long term care. One by one the old hospitals closed; a few homes were built for people with Downs Syndrome and the like, but no one wanted crazy people in their neighborhood. Almost no smaller facilities were built for people like Paul.

The shrinking population of those suffering from the most serious mental illnesses rattled around on a few floors of hulking, ancient hospitals, many of them built a hundred years before as sanitariums for people with TB. Paul’s hospital was one of them, with bars on the windows and double sets of locked doors. We felt bad for him, but we knew he would be unable to care for himself on his own. The former patients who were released often ended up in slumlord- operated single room occupancy buildings (SRO’s) and adult homes, where they were still confused and unable to care for themselves and now had no supervision. The streets of New York and other big cities suddenly were full of mentally ill homeless people wandering around, sleeping in doorways, dying of exposure or getting arrested. Eventually, our prisons filled with mentally ill people who, only twenty-five or thirty years before, would have been humanely cared for in an institution—people who by law should have been cared for in new, smaller, community care facilities.

Every time there was a story in the papers or on TV about one of them, Mother cringed. A mentally ill man pushes someone off a subway platform. A mentally ill homeless person wanders the streets of New York City pestering passers-by, is killed in a bar fight, is found frozen on the streets…

Mother would steel her mouth into a thin line. This will not happen to my son. I couldn’t stop him from going mad, but I can try to make his life as good as possible, within its limits. She volunteered at the hospital library. She stopped by the ward on non-visiting days. My son is not alone, her presence said. I am watching. She joined NAMI, the National Alliance on Mental Illness, a new organization which advocated for both patients and their families. Her focus at that time was always on making the remaining hospitals comfortable for Paul. We couldn’t imagine that he would ever be released.

Determined to keep her son safe, Mother stayed tuned in to public hearings and release meetings – sort of like parole hearings – at the hospital. She showed up for all of them, ready to insist that Paul stay hospitalized. “You can’t just release him. Transfer him to a nicer, smaller place, yes. But I can’t handle him. He’ll set fire to the house. He’ll get into bar fights. He’ll hurt someone,” she told anyone who would listen. She wrote letters to our Congressman and State Assemblyman.

Sunday after Sunday, Mother made the one-hour, forty-five mile, drive up Routes 684 and 22, from White Plains to Harlem Valley Psychiatric Center so often, she could recite every gas station, restaurant, fitness center, farm, antique shop, motel, bank, diner, lumber supply store, army surplus store, church, fast food joint, office park, bakery, school, ice cream stand, car dealership, nursery, and garden supply store along the two-lane state road. My house was about halfway between Paul’s hospital and Mother’s home in White Plains. She would visit Paul in the early afternoon, then stop off at my house for dinner. Her Sunday visits to Paul and me became a ritual.

Mother also made sure we included Paul at all our family gatherings, often making the long drive to pick Paul up for Christmas and Thanksgiving dinner herself, and ferrying him to my house or my sister’s house for the afternoon. For his birthday she made cupcakes for the ward. He’s your brother, she would say to us. We can’t abandon him. He needs us.

Our mother died in 1993—too young, at only 71, leaving advocacy for Paul in the hands of his siblings. I  have often thought that if she had taken half as good care of herself as she tried to do for her son, doctors might have dealt with her cardiac condition before her sudden death. I’m ashamed to say we were not as diligent about Paul’s care as she had been; within a year after she died, Paul was released—delusional, confused, and unable to care for himself. We siblings tried to advocate for him with social services agencies, etc., but what he needed was supervised care. It didn’t need to be at the hulking psychiatric hospital, perhaps, but there were no smaller, community-based long term care facilities for him. And so began his downward spiral—group home to ER to group home. We siblings did what we could for him, tried to make sure he got medical care, and stood by him when he developed cancer. Unfortunately, he died at age 48, in 2008. Eleven years later, we still advocate for better care and speak out in his memory.

And on Mother’s Day, I remember my mother and thank her for not only her unstinting efforts to care for her son, but also for teaching her children our responsibility to care for those who need help.

Afterword

When Medicaid was passed into law in 1965, it took on from the states about 50% of the burden of caring for indigent people like Paul, who until this time had been housed in institutions funded completely by the states. But a little known part of Medicaid was something known as the “IMD exclusion.” Medicaid will make no payments to any institution for mental disease, or “IMD.” An IMD is defined as any facility of more than 16 beds where more than 51% of its patients between the ages of 21 and 65 are being cared for by reason of severe mental illness. Nursing homes caring for elderly Alzheimer’s patients are not impacted, nor are institutions caring for young patients suffering from mental retardation or illnesses.

While the IMD exclusion may have been meant to ensure that mental patients were not warehoused in huge institutions, in practice it made it impossible economically for state facilities to care for the people most severely afflicted with diseases of the brain. Not only is a facility precluded from being reimbursed by Medicaid for the individual’s day-to-day care, but individual patients’ eligibility for Medicaid is canceled while they are inpatients in an IMD. Consequently, to receive treatment for medical disorders not related to their severe mental illness, they must be discharged from the IMD, have their Medicaid eligibility reinstated, be treated in a medical/surgical setting, and then be readmitted to the “IMD”  Not do-able.

The number of people still needing hospitalization did not shrink as much as the hospitals did. Many people, like my brother, were not helped significantly by the new medications. They remained delusional and unable to take care of themselves, and often too prone to violence to permit their care at home.  Experts in 2016 estimated the U. S. still needs about 50 beds per 100,000 people to care for those suffering from the most severe forms of mental illness. With a population of 310 million, that means the United States needs 155,000 psychiatric beds but had only 53,000. Those seriously ill people have no residential setting to care for them. Many of them have ended up in prison.

In 2014, as part of the implementation of the Affordable Care Act (ACA, or Obamacare), demonstration projects in 15 states temporarily lifted some of the IMD restrictions. Under new leadership at SAMHSA, the Substance Abuse and Mental Health Services Administration, more temporary stays are underway. Hopefully, the relaxation will help demonstrate that our current system of non-care, pretending that people like my brother Paul don’t exist, makes no sense. What needs to happen is a complete elimination of this arbitrary exclusion.

Who knows? Perhaps one day soon, a cure will be found. It is our job to try to care for our loved ones until then.

Further information regarding the status of Federal legislation and treatment standards for serious psychiatric illnesses may be found at  SAMHSA and The Center for disease control CDC

More information can be found at Mental Illness Policy Org. MIPO

To join the effort to advocate for better care for our mentally ill loved ones, visit the National Shattering the Silence Coalition website NSSC

Note: This essay draws from The Great Emptying, a chapter of my memoir about taking care of my brother, titled Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.

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.