Why We Write

an interview with Katherine Dering, Author of Shot In the Head: A Sister’s Memoir, a Brother’s Struggle

by Max Ellendale

KD: Best wishes on the launch of your newest book, Max. Writing has led me through quite a zigzag course; I hope your journey is a good one.

If someone had told me twenty years ago that I would retire early and be writing a paranormal mystery when I was almost 70, I would have laughed in their face. I was the chief financial officer at a community bank, a position I’d attained after a hard fought battle against the sexist nonsense that was so common in the 70’s, 80’s and into the 90’s. But almost on a whim, I signed up for an introductory creative writing class at SUNY Purchase the semester after my youngest child went off to college, and I’ve been writing ever since.

It took a long time to get out my first book. First I was trying to write part time, evenings. I found it very difficult to sustain the mood of a piece for the amount of time it takes to put together a long story. I managed to get some poetry published, and a couple of essays, but my writing life was sputtering.

Eventually I decided to retire early, and thought, Now I’ll write my book.

But family obligations derailed my memoir about my travails in the business world. Eventually, I gave up on that project, turning to writing about caring for my younger brother, which was taking up much of my time. Two years later a small press – Bridgeross Communications – agreed to publish Shot in the Head, a Sister’s Memoir, a Brother’s Struggle, my book about caring for my younger brother, who suffered from treatment resistant schizophrenia and then lung cancer.

I cannot say enough about what I went through, first as I took care of Paul, and then as I wrote about the experience. It was transforming, not only for the introspection and reflection I went through, but I was totally unprepared for how I would feel about the response from readers. Every time someone reads Shot in the Head, they feel like they have to hug me or write to me and tell me how much they came to love my brother and my family, that they cried when they read it, yet wished it would not end. All of which has tended to push me back into the experience of losing my brother – not just once, or twice – first via his mental illness and then his physical death of lung cancer – but then again and again as I have received readers’ condolences.

It’s been an exhausting journey, both spiritually and physically, one which I could never have predicted when I was embroiled in fighting for my place in executive management.

Which leads me to my paranormal mystery. Max, you’ve been working in this genre for some time now, while I was doing the memoir thing. And now I find myself drawn to the genre, too, perhaps sensing in the un-lives of the mysterious enemy a way to place a face on my worst fears, pouring my sorrows into the hapless victims of those unexplainable, unpredictable horrors. And because it’s fiction, I get to decide how it will end this time.

So again, best wishes on the launch of your newest book, I’m sure it will be a fabulous ride!

~~~~

For more information about mental illness, visit: National Alliance on Mental Illness, the Treatment Advocacy Center, and/or Mental Illness Policy Org.
If you or anyone you know is struggling with suicidal thoughts, call 1-800-273-TALK or visit http://www.suicidepreventionlifeline.org/.

This interview appeared on the blog of Max Ellendale.  Please visit her blog  at maxellendale.wordpress.com

 

Two Poems

Visiting
– for Carolyn

I’ve come for coffee,
a visit with the other grandma,
who needs some company.

I think we’ll chat
for an hour or two.
She knows she’s dying.

Cannulas hiss. Pulse ox
we watch. She nods
and gives a thumbs up sign.

I’m OK for now, she mouths,
then coughs from the effort.
Morning passes into afternoon.

We talk of respirators and
ministers. I call her daughters
Thank you, she mouths again.

Our grandson plays
quietly in the next room.
Rain pelts deck furniture.

Here in the den old friends
wait, hold hands, think of
childhoods and parents

long gone, siblings,
husbands and children
we’ll leave behind.

[Death waits just outside.]

 

 

Doric Loop

I.

It’s a simple casket, its wood polished to a high luster, the lid edged by a pleasing curve. Something simple; only needed for a couple of days.

Casket: 1. a small case or chest, as for jewels or other valuables. And what could be more valuable than this boy, this almost man, this never to be a man? 2. a coffin, possibly an alteration of the old French, cassette. An endless loop? Is this an endless loop of foolish choices and bad judgment leading to inevitable tragedy?

Not a cask: (a barrel, a cylindrical container that holds liquids.) Nor a casque, so famous for Poe’s The Casque of Amontillado, and poor, vain Fortunato, left chained to a moldy brick wall behind an archway, deep beneath the river. (Fortuna: Spanish for fate, the inevitable, nothing to do with fortunate, meaning lucky.) In ancient Greece the three fates, Clotho, Lachesis and Atropos were thought to control human destiny. I’ve met them in the Sunday crossword every now and then.

A casket. A tisket a tasket – a green and yellow one would surely stun this assembly, a bizarre mix of family and my nephew’s druggie friends – black-clad boys with ear plugs and tattoos on their necks and a girlfriend/baby mama with the obligatory nose ring, a spray of red roses tattooed across her chest and black latticework along her arms.

The classic curve of the wood, the inverse of the fluted columns on the simplest of Classic Greek styles. Is this an ogee curve? Another crossword puzzle word.

II.

An old man told me once about the worst funeral he had ever attended. It was across the river in Haverstraw, back in 19 and 36, he said, a very cold winter in these parts. As cold as this one? As he spoke, I pictured Depression era men in overalls carrying a casket like this one across a snowy field on a cold, blustery day like today. The cemetery was on a steep hillside looking out over the Hudson, and when one pallbearer lost his footing, the coffin dropped and slid – to the horror of the assembled family and friends and well-wishers of one sort or another – and took off down the steep incline like an Olympic luge, till it rammed a tall monument erected some years before in honor of the town’s former mayor and sprang open, flinging the corpse in a perfect 10 of an arc to land in a seated position a little further downhill, leaning against the headstone of a Mrs. Mary Ellen Hitchens, may she rest in peace, before it (the corpse, not the headstone) fell over on its side.

Women screamed. A flock of crows flew up into the winter sky cawing excitedly, a black cloud circling and blocking the sun. Friends moved to shield the horrified family from the ghastly sight. Funeral employees and pall bearers hurried to recapture the elusive body. With each step as they ran down the hillside, their feet broke through a thin crust of ice into softer snow below, which proceeded to fill their black dress shoes with clumps of icy crystals that melted into frigid pools. Embarrassing wet spots appeared on their pants where they fell. It was some time before they could get the deceased positioned back in the box and the box placed into its resting place.

I don’t really believe this story, though the old man promised it was true. But then, again, Santa Claus was supposed to be true. God was supposed to be true. I’d like to think that the spirit, at least, flew through the air, to meet with dear ones again on God’s golden shore, as the Soggy Bottom Boys sang. Though how our spirit selves will recognize each other without bodies, still trapped down there under the snow, I don’t know.

III.

There’ll be no snow for this casket. My nephew will find a warm welcome tomorrow at the local crematorium, a small brick affair, absent of any decorative moldings, smooth Doric style or otherwise.

This afternoon, aunts, sisters and friends of the boy stutter out sad stories. The boy’s uncle, my brother, plays his guitar and an aunt holds her hymnal and sings, “In the sweet bye and bye. We shall meet in the sweet bye and bye.” And my sister sits and wrings one wad of tissues after another till this crowd of weeping mothers and fathers and friends finally goes home.

The lovely curve of the lid is almost hidden under the spray of roses and carnations, all white for the boy, white for his youth, white for… I don’t know what for.

And we scoop my sister up and get her some food at Cappola’s down the block, in a brick building that has been partially stuccoed to resemble a Tuscan villa, with stone Italian-style arches, like those where poor Fortunato found his eternal rest.

*

These two poems first appeared in the Manhattanville Review in January, 2016.

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, was published in 2014. Her poetry and essays have appeared in Inkwell Magazine, The Bedford Record Review, Northwoods Press, Sensations Magazine, Pandaloon Press, Poetry Motel, Pink Elephant Magazine, Six Hens, and River, River. A narrative non-fiction piece, which later became a chapter of Shot in the Head, was included in Stories from the Couch, an anthology of essays about coping with mental illness. She is a member of the advisory board of The Katonah Poetry Series.

What motivates her to create:
Most often a sudden inspiration while I am driving requires that I pull over to the side of the road and jot it down. A phrase, an urgent new expression of a belief or attitude toward the world, a moment of sorrow, a truth. Scraps of scribbled paper beg life as a poem or essay. A series of inspirations becomes a book. I love beautiful sentences, a carefully crafted images, and I strive for the aha! moments when writing something I never knew before.

My Shadow

My shadow wears a leather mini-skirt
over a black body stocking, which clings
to her slender body. As she moves, her hair
wafts sandalwood incense, and dangling
earrings tinkle, like wind chimes
in a soft, sing-song breeze.

My shadow is an unrepentant beatnik,
who snaps her fingers instead of clapping,
and spouts Kerouac at chic Village nightspots.
She’s an actress and painter, spending months
at a time in her ancient stone cottage on the
isle of Ibiza, where she whiles away
her Mediterranean days counting
turns of windmills
stray clouds at the horizon
and lovers at her doorstep.

My shadow and I have been one, for
a few cherished weeks at a time.
Years ago, outside Valencia, we spent days
watching citrus trees grow,
listening to melancholy guitar, and
zipping down dirt roads and cobbled
streets on a Vespa with Pepe.
We lit bonfires on the beach one night,
then hid from the Guardia Civil.
And at the saint’s day fiesta, Pepe gave
me the bouquet, as he entered the plaza
for the novillada. We danced
the Pase Doble until dawn.

Lately, my shadow’s been urging me
to rejoin the world tour, but the me
in business suit and sensible pumps demurs.
She insists, though, that I save travel brochures,
and is planning a journey for us to watch
the sun set over Macchu Pichu.
From there, we’ll head to the Galapagos,
and on the back of the giant sea turtle,
Urashima Taro, we’ll be whisked away
to its crystal palace under the sea
and count the seconds of eternity.

 

 

 

What the Lucky Can Do

Looking for a way to make an impact? Here’s something that takes little work but can make a big difference.

My story

I was visiting with my younger brother in yet another crisis psych ward one day when I met up with a woman who was visiting her son, my brother’s roommate. Her son, probably about 20 years old, had just bolted into the bathroom to run water over his head, “to keep it from exploding.”  My brother was gobbling left-over Halloween candy that I’d brought as a treat. Only 40 years old, Paul had no teeth and was gaunt, with disheveled gray hair, and was mumbling to himself and rocking back and forth in his chair, candy crumbs falling to the floor.  He’d been brought in the day before because he was  pacing up and down the streets downtown and screaming that he’d been scalped.

“He’s your younger brother?” the woman asked, incredulously.

“Twelve years younger,” I answered.  “Since our mother died, I sometimes feel like his mother.”

She shook her head slowly.  “I thought he was your father,” she said.

IMG_1343Schizophrenia is hard on a person.  When a serious mental illness like schizophrenia hits, it is hard on the whole family.  We never know what will happen next.  We fight to get our loved ones cared for, in a system that often criminalizes them.  Or they are sent home after a few hours in an ER, sedated, with medication that may or may not quell the recurrence of whatever their delusions are.

There are so many stories like mine.

In the words of Diana, a mother in a private group I belong to, “It is just day after day, month after month, year after year of the same dashed hopes, the same struggle to get them in, only to get them on meds that don’t last but a few months, if that long, before they are right back where they were. It is so frustrating, so tiring, so exhausting, and now, so scary as I realize that I won’t always be here to do this, and then who will do it for her?”

And this, from Cheri, a woman in another family shattered by serious mental illness:

“My husband and I will always work to keep our son safe, but the person he’s become, due to his poorly treated illness, is not anyone I can spend much time with. We must survive, too, in order to protect him as long as we can. The constant stress of fighting for everything is just too much. This old body is just wearing out. The decision makers in our state aren’t moving fast enough for our family. I pray without ceasing, that we outlive him, because there isn’t anyone left that can tolerate his behavior anymore.
Rant over. After 20 + years everyone’s just too tired.”

I feel their pain, their desperation.

What the lucky can do

You can help, by being aware and being humane.

What we say matters. Serious mental illness is not like it looks in One Flew over the Cuckoo’s Nest.  My brother was not like the kooky guy on a sitcom. And he was not some nameless terrorist, either. The homeless guy babbling to himself on the street corner is a real person, with a family who care for him. He once had hopes and dreams, now shattered by untreated psychosis. This is a real medical condition that drags on and on; he needs help, not your disdain.  You can make a difference if you will please be kind to people who are dealing with this disease–both the sufferer and the family. Sometimes it feels as if we are in never-ending mourning for the loved one we once knew, while we try, usually thanklessly, to protect the delusional person we know now.

And please think twice before using words like “crazy” and “psycho.”   We don’t make fun of someone with cancer.  If someone in your family has cancer, or suffers a terrible head injury in an accident, neighbors call and ask what they can do for you. They bring casseroles and offer to take a shift helping the patient get to treatments. See if you can do the same.

Casserole, anyone? If the opportunity arises, if you are aware that a family is dealing with someone as sick as my brother, his roommate at the psych unit that day, or the son and daughter described above, please do something nice for them. A kind word, an offer to do an errand for them, even just a word of compassion, like. I’m so sorry. Is there anything I can do? It will mean a lot. And if the opportunity arises, let your elected officials know that you think we need to do a better job of caring for people like my brother.

My brother’s struggle is over now, but so many others are fighting this battle.  I often wonder about the young man and his mother that I chatted with that day. I hope their journey is a smooth one.  And I hope people around them offer them help and support along the way.

***

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 look after her brother, was published in 2014. Her poetry and essays have appeared in Inkwell Magazine, as well as The Bedford Record Review; Northwoods Press; Sensations Magazine; Pandaloon Press; Poetry Motel; Pink Elephant Magazine; River, River; Six Hens; The Manhattanville Review, Sayitforward.org; and Stories from the Couch, an anthology of essays about coping with mental illness.

 

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/

noname

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.