IMD and Anosognosia-Whaat?

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

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

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

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

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

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

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

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

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

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

A life, falling apart

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

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

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

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

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

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

Unaware of illness, refusing to get help

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

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

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

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

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

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

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

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

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

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

Dissecting your own thoughts

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

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

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

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

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

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

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

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

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

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

Helping families help their loved ones

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

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

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

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

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

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

Grieving, remembering, and advocating for change

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

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

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

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

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

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

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

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

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

 

 

Remembering Newtown

 

 

Police_at_Sandy_HookThree years ago, while out doing errands, I listened to my car radio in horror as the announcer talked about a gunman shooting a bunch of elementary school students and their teachers in Newtown, Ct. I couldn’t believe what I was hearing. I had to pull over and catch my breath.

Sandy Hook elementary School was only about 15 miles away from the elementary school my two grandsons attended. What if someone did something like this at their school? What if I lost them?

As the news of the shooting unfolded, I realized that the shooter suffered from an untreated mental illness, and I had a second thought: Thank God it wasn’t my brother, Paul. With all he did and the family went through, at least he never did anything like that. As the “Anarchist Soccer Mom” wrote in her blog, her son could easily have been the boy with the gun. And my brother could easily have been the man with the gun.

For 32 years Paul suffered with a severe form of schizophrenia, labeled “persistent and treatment resistant.” If he had gotten his hands on a gun while he was in some delusional, fearful state, there’s no telling what might have happened. Despite attempts to medicate him, Paul had few days when he had any clear notion of where he was or what was really happening around him. In the midst of a conversation with him at a diner, I might ask what he would like to eat and he might shush me and respond that the man at the next table was trying to steal his soul. He could shift from happy to angry and paranoid in seconds.

In the years since I published my book about Paul, I have attended conferences, given talks, and listened and learned about the total disfunction of our mental health system. I have heard about spellbinding new insights researchers have discovered about causes of the disease. And I have heard from countless parents and siblings of people who suffer with severe forms of mental illness, about how they have been denied access to these breakthrough treatments, and our mental healthcare system has failed them and their loved one. New cures won’t help people if no one will treat them.

The system has failed families like the families in Newtown, as well. Because when someone like Adam Lanza shoots 27 people and then himself, who is to blame? The mentally ill man? The mother who is trying to cope? Or our mental health system that refuses to admit someone to a psychiatric unit until they are a danger to others? By the time they are a danger, it is too late.  We need a different definition of when to enforce care.

Please remember that 28 people died that day, December 2012. Not only the children and teachers. Also the shooter and his mother. None of it had to happen. None of it needs to happen again in the future if we will finally put in place a system of care advocated by the National Institute of Mental Health, the Treatment Advocacy Center, and many others.

We need to lift the “IMD Exclusion” which prevents Medicaid funds from being used to care for people with serious mental illness in psychiatric hospitals. We need to put in place and enforce Assisted Outpatient Treatment plans, which allow seriously ill patients to live outside a hospital setting if they will agree to take their medication. We need to eliminate wasteful spending of SAMHSA and focus spending on care that will deal with the small percentage of the population that is so seriously ill. We need to reform the patient advocacy system, the patient privacy laws, and so much more.

In my brother’s memory, in the memory of all who died in Newtown, I am asking everyone to contact their congressional Representative and Senators and tell them to vote for improved care for the most seriously ill.

 

 

Katherine Flannery Dering holds an MFA in Creative Writing from Manhattanville College. Her memoir, Shot in the Head, a Sister’s Memoir a Brother’s Struggle, which recounts the family’s efforts to deal with her brother’s schizophrenia, was published in 2014.  Her poetry and essays have appeared in Inkwell Magazine, as well as The Bedford Record Review, Northwords Press, Sensations Magazine, Pandaloon Press, Poetry Motel, Pink Elephant Magazine; River, River; Six Hens; and Stories from the Couch, an anthology of essays about coping with mental illness.

The Sisters of Perpetual Determination

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Sunday after Sunday, year after year, our Mother drove the one hour ride from our home White Plains to the Wingdale Psychiatric facility to visit my brother Paul and to prod the staff to take good care of him. Paul, the eighth child of our family of ten children, suffered his first psychotic break at 16 and for the next thirty two years, despite all treatment attempts, he never had more than a few moments of sanity. As our father sunk into a deeper and deeper depression, unwilling to face what had happened to his young pride and joy, Mother just gritted her teeth and did what had to be done. Dad died. Paul got sicker. But sun or snow, rainy or blustery day, Mother drove the two hour round trip and gave Paul his one day per week of almost normalcy. Picnics for sunny summer days, diner or pizza shop on bad days, an occasional excursion to a pool or bowling alley. Mother could recite every gas station, burger joint, antique shop, hardware store, exit, entrance, diner, motel, bank, putting range or ski equipment shop along the 50 mile route.

When Paul was 34, Mother died, very suddenly, of a burst aortic aneurism, and the ten of us “kids” were in shock. We stumbled through funeral preparations, copying what Mother had done for Dad. She had sung in the church choir for years, and her pals did a great job singing at her funeral mass. During the priest’s homily, he spoke repeatedly about what a determined mother she was in not only raising her ten children but also for ensuring that her mentally ill son was properly cared for. After Mother’s burial, the choir and at least 80 other friends and family members gathered at Mother’s house for a funeral luncheon.

At some point that afternoon, four or five of my sisters and I went for a walk around her neighborhood to escape the crowd of mourners who, fueled in part by a large quantity of bourbon and wine, had progressed from munching on catered chicken parmesan and crudités to singing show tunes around her baby grand piano. It was a beautiful, sunny fall day.  A short way down the block, realtors were holding an open house. Since we would have to sell Mother’s house, we decided to check it out. Recalling how the priest at Mother’s Mass had gone on and on about what a determined woman she was, we signed in as a group of nuns looking for a new home and called ourselves the Sisters of Perpetual Determination. It became our family joke. The next year, after I’d settled Mother’s will and distributed everyone’s share, my siblings gave me a plaque inscribed “To the executrix extraordinaire, with thanks, from The Sisters of Perpetual Determination.”

As the months and years went by after Mother’s death, we siblings took up the mantle of trying to look after our brother.  However, this was the age of the deinstitutionalization movement, and despite the lack of a suitable half-way facility to care for him, we were unable to prevent his release from the psychiatric facility. Without constant supervision and tweaking of his medications, he went steadily downhill. His schizophrenia was severe and persistent. He was unable to make it through the maze of “freedoms” he was given, and he cycled in and out of hospitals and group homes. We had always hoped we could keep him safe until some new treatment was discovered that would bring him back to us. But poor diet, constant smoking and general aimlessness caught up with him. Despite our efforts, he died six years ago at the age of 48.  We miss him still.

Current laws, meant to protect people from unjust confinement, now condemn many people with serious mental illness to a shadow life of delusions, confusion, and homelessness, horrible group homes and/or early death. Despite promising advancement in early intervention and new cognitive treatments, many with schizophrenia never really recover.  The care of a family member in this age of almost no long term mental health care puts a tremendous burden on people trying to keep their loved ones off the streets and out of jail.  In consideration of all these caregivers do, my sisters and brothers and I have decided to share our sisterhood name with all the other families of people suffering with serious mental illness.

To the Mothers, Fathers, Sisters and Brothers of Perpetual Determination, we salute you.  We have pledged our support for legislation like HR2646 and vow to fight for improved care for our loved ones.

picture:  to r back row: Pat, Charlotte, Sheila, Paul, Ilene; front row: John, Katherine, Julia, Grace, Monica.

For more information on HR2646 and a letter you can copy and paste and send to your representatives go to www.shotinthehead.com and click on the advocacy page.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To order my book, please go to Amazon.com.

Christmas Past and Present

all I want for christmas is hr2646-2About five months after my family moved to Switzerland in 1959, 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 Occupied Japan a few years before.

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 eventual ten) 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 our brother, Paul.

To order the book, please go to Amazon.com.

Little did we know back in 1966 when the five little kids posed for this picture – Charlotte, Monica, Paul, Ilene and Julia – 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 HR2646 was passed, and rolled into the 20th Century Cures Act, it 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 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 feel 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.

To learn more about schizophrenia and what is needed to improve our mental health system go to http://www.paulslegacyproject.org

To learn more about possible supportive housing  options, see my blog with that title on this WordPress address.  Let’s make 2019 the year we help the mentally ill homeless off the street and out of hell-hole “adult homes.”

 

 

 

 

Visiting Day

Paul says Grandma died in his arms.

He felt her spirit leave as he carried her up the stairs.

The girls were wailing where she had collapsed,

Mother was calling for an ambulance.

Dad hovered on a lower step,

waving his hands like a symphony conductor.

“Gently now, she’s not a sack of potatoes!”

But Paul says Grandma was already gone.

“I know because her spirit spoke

to me as it slipped by.”

He confided this news to me

twenty-five years after the fact,

in the visitors’ lounge of Rockland Psychiatric Hospital

just moments after demonstrating

(palms pressed against his brow,

eyes and mouth a Halloween grimace)

how a famous neurosurgeon had squeezed

little, tiny, baby Paul right out of the top of his head.

“You won’t have to worry about

that brat anymore!” he promised.

“What did Grandma say?” I asked.

And he just looked at me

with those sky-blue eyes and laughed.

“I couldn’t hear her. Ain’t that a killer?

“But I still carry her here,” he said,

and he pressed his hand to his heart.

My younger brother Paul, from his first psychotic episode at age 16, never escaped his delusions and confusion for more than a few minutes at a time. Yet he carried a sweet and loving person within his toothless, disheveled exterior. This loving side helped us, his siblings, deal with his not so loving moments.  There were many visiting days at many institutions and various adult homes, as our non-system of care failed him repeatedly.

More than 25% of people diagnosed with schizophrenia are still not helped appreciably by available medications and treatment methods. Without supportive, supervised housing for people like my brother, our mental “health” system condemns many without family support to cycle in and out of hospitals and jails, dying on average 28 years younger than the non-mentally ill population.

I tell the story of my family coming together to care for Paul in my memoir, Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.  Also, I advocate for improving care for people like my brother – especially for better long term housing – in his memory. I blog at deringkatherine.wordpress.com as well as on the book’s Facebook page, and on twitter @katforwomen.  And I carry him in my heart.

Note:  This poem was previously included in my book, Shot in the Head and was also published by PASMI Action at:

https://pasmiaction.wordpress.com/2015/11/11/by-katherine-flannery-dering/

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The Great Emptying

My involvement in my brother Paul’s care began in 1981, when I moved to New York. I was the second of the ten Flannery children, Paul eighth, and there was a twelve year gap in our ages. I had been living in the midwest for several years and had hardly seen him since he’d been committed to a psychiatric hospital in 1977 at age 17. He suffered from a severe case of schizophrenia that could not be controlled with modern psychotropic drugs.

By 1981, New York State 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-1980’s. The United State had 340 public psychiatric beds available per 100,000 in population in 1955; by 2005 there were only 17 beds per 100,000. 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.[1]  Paul was on this medication for many years. But the number of people still needing hospitalization did not shrink as much as the hospitals did.  Experts today estimate 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. That leaves us 65% short: 23 of every 100,000 people in this country suffer from serious mental illness and have no hospital setting where they can be cared for.

The excessive zeal to release all mental patients in the seventies and eighties had as much to do with funding and misconceptions about the causes and treatment outcomes of mental illness, as it did with the new medications.  By the mid-1980s, the doctors treating Paul were well aware that a biological component was primary to the disease.  It was a misfiring in the brain; the wrong messages were getting through.  But despite the rapidly growing body of knowledge that pointed clearly to biological causes, old stereotypes persisted.  At the onset of Paul’s illness in the 1970s, psychologists still tossed around terms that blamed the mother in some way. Although falling from favor, the terms “smothering mothering” and the “schizophrenic mother” were bandied about in pseudo-scientific literature. Sometimes mental illness was blamed on repressed homosexuality or an oedipal complex – Freudian beliefs still popular in some circles.   And in many peoples’ heads it was linked to the sufferer’s own sinful ways or to some God-assigned stigma.

Because of the many false beliefs, 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.

Meanwhile, well-intentioned do-gooders, as my father called them, had sued the states to close down the huge state institutions, made infamous by investigative reporting on places like Willowbrook, on Long Island, where developmentally disabled people were being mistreated.  Medicaid reimbursement schedules[2] were written to withhold payments to large mental institutions, accelerating the closures. Trying to make sure the bad patterns were not simply replicated in new buildings, new laws called for smaller, more humane, residential facilities for patients needing long term care.

One by one the hospitals closed; a few homes were built for people with Downs Syndrome and the like, but no one wanted crazy people in their neighborhood, and almost no smaller facilities were built for people like Paul.  The shrinking population of those suffering from serious mental illness rattled around on a few floors of hulking, ancient hospitals, many of them built a hundred years before as sanitariums for people with TB.  The rest were simply released, often to 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 ago would have been humanely cared for in an institution.

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 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.

Mother visited him every week, and made sure we included Paul at all our family gatherings, making the long drive to pick Paul up for Christmas and Thanksgiving dinner herself, and ferrying him to my house or my sister Monica’s for the afternoon. My house was about halfway between Paul’s hospital and Mother’s home in White Plains.

Despite all her protestations, however, shortly after Mother’s death, the unthinkable happened. Paul was released. With inadequate care, he soon spiraled downward till his physical health also deteriorated.

This is an excerpt from my book Shot in the Head, a Sister’s Memoir, a Brother’s Struggle.  It is available on Amazon.  Please read it to learn more about what it’s like to care for a family member with a serious mental illness. Our family learned a lot about love, caring and determination.

[1] The Shortage of Public Hospital Beds for Mentally Ill Persons, A Report of the Treatment Advocacy Center, E. Fuller Torrey, M.D., et. al., http://www.treatmentadvocacycenter.org

[2] 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.   A little known part of that law 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 22 and 64 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 this 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 extinguished 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.  In other words, it is virtually impossible.  See http://www.nami.org, the website of the National Alliance on Mental Illness.

See also other posts on this blog in the mental illness category.

Indie Go Go: From family caregiving to a documentary

My brother, Paul, developed schizophrenia at age 16. Seemingly overnight he became psychotic, going from charming, handsome high school junior to someone unable to differentiate between reality and horrifying delusions.  He could not believe that he was actually mentally ill, and often told people his brains had been damaged when he’d been scalped, or that someone had shot him in the head. He once cut a large gouge into the flesh behind his ear, trying to find the radio someone must have put into his head. He was carried out of the house by EMTs, bleeding heavily. He needed psychiatric care for the next 32 years, but often suffered needlessly, due to the shortage of hospital beds for mentally ill people. Hundreds of thousands of our fellow Americans are suffering, often homeless or incarcerated for the simple crime of having a brain disease.

The Meeting of Activists

Not everyone realizes how difficult it is for families who are struggling with the often impossible burden of caring for someone like Paul. I wrote about caring for my brother and the impact it had on our family in my book, Shot in the Head, a Sister’s Memoir a Brother’s Struggle. Ilene, his twin sister, travels and writes to promote changing laws to enable families to get better care for the loved one.  We are not doctors, but we have faced this illness on a personal level.  Both of us have become mental illness activists.

A psychiatrist named Dr. Stephen Seager came across my family’s story in a blog written by Ilene.  Steve met up with us when we were in California for a NAMI conference–a large convention for the National Alliance on Mental Illness–in SanFrancisco.  He then interviewed us for a documentary he is producing called Shattered Families, the Collapse of America’s Mental Health System.  Dr. Seager is convinced that if America sees how devastating serious mental illness is for the whole family and how our current system of care doesn’t help properly, that our lawmakers will become convinced to change things. He is interviewing people across the country and contributing an account of his own chilling experiences at a state forensic hospital, which he has also described in a book called Behind the Gates of Gomorrah.

Our stories are heartbreaking, but Dr. Seager has ideas on how to make it better. Won’t you help us get the message out?

This is where Indie go go comes into the story, and your chance to be part of it.

https://www.indiegogo.com/projects/shattered-families#/story

Getting the family stories on film is only part of the project.  The rest is getting some post production work done and then doing the marketing.  Making copies, traveling to talk in person with distributors.  This is totally different from going to a bank for a loan or applying to some government agency for a grant.  This is a grass roots, please help us fight a terrible terrible disease one-on-one effort. Dr. Seager has brought our documentary to the crowd sourced funding world.  I hope you will join us.

 Everyone who contributes to the cause will get their name included in the credits at the end of the film.

Please join our cause. Go to the indiegogo web site or click on our video on youtube.  Listen to Ilene talk about Paul, and make a contribution to the Shattered Families cause.  Put your name next to mine, and join our effort to make the world a little bit better place.

Katherine Flannery Dering

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