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?

 

What Survivors Do

Four years ago this past January, a close family member, a teenager, died of a heroin overdose. As you can imagine, the whole family was terribly upset. The boy’s parents were overcome with grief. We’re a large family, and we were all stunned. I knew that the boy had been dealing with an addiction issue, and that he had dropped out of high school; his parents didn’t know what to do with him. But I didn’t know much more that that. His parents had put on a brave face and said he was in this rehab or that rehab and they were hoping for the best. But their hopes were dashed when, less than a month after a year long – and very expensive – stay in a rehab place, he OD’d. (I’ve written about that loss in Aftermath.)

The story is way too common. According the the Center for Disease Control, opioids were involved in 42,249 deaths in 2016; opioid overdose deaths were five times higher in 2016 than 1999. By 2018, deaths rose to over 70,000, almost double 2016. Where does it end?!  And every one of these drug-related deaths left behind many more grieving friends and family. People suffering from addiction slip in and out of rehab centers and detox programs, but they very often relapse. Think of someone like Amy Winehouse: such a promising performer; she entered several treatment programs but didn’t make it. Is this the best our medical establishment can do?

A couple of months ago, I was speaking with a representative of my college alma mater—we’ll call him Allen—who was trying to convince me to donate some money to the university.  Allen knew of the book I wrote a few years ago about caring for my brother, who suffered from severe and treatment resistant schizophrenia. We talked for a while about the advocacy work I’ve been doing to try to improve care for people with serious mental illnesses. And then I described my new poetry collection, Aftermath, which was written in the months after my young relative’s overdose death.  

Allen nodded his head a few times as I spoke, then said that I was the first person he’d met who actually knew anyone who was mentally ill or had died from a drug overdoseHe’d read about the “opioid epidemic” in the newspaper and on line. At our country’s all-too-frequent mass shootings, or in stories about homeless people, there is often a reference to people being mentally ill. But he said he’d never been directly touched by it, himself. Our conversation drifted from one topic to the next, as conversations often do. And then, out of the blue, Allen said, “You know, a cousin of mine committed suicide a couple of years ago. And we had an uncle who suffered from terrible depression and was in and out of the hospital.”  

In half an hour he went from being “not directly touched” to describing two close family members who suffered from mental illness. 

It is likely that in his universe of friends and family there is also someone with an addiction problem. I don’t wish it on him, or anyone, but statistically, it is likely.  Still, people don’t talk about it. Addiction and mental illness are judged as if they are the result of weakness–a lack of willpower or simply a behavioral issue that victims can work their way out of if they would just try harder. And so people don’t talk about it; they are ashamed to talk about it. Only when my conversation had normalized the topic did Allen remember the uncle and cousin. We don’t like to even think about it.

Where we are at the federal level

SAMHSA – the Substance Abuse & Mental Health Services Administration—the government agency assigned to deal with these problems—is overwhelmed and underfunded. And one of the persistent problems they face is limiting their funding to evidence-based practices for treatment.  Elinore F. McCance-Katz, MD, Ph.D., the new Assistant Secretary for Mental Health and Substance Use, issued a statement in January of 2018 regarding the National Registry of Evidence-based Programs and Practices (NREPP) and SAMHSA’s new approach to implementation of evidence-based practices (EBPs). 

She said that SAMHSA has used the NREPP since 1997 to help them decide what to fund. For the majority of its existence, NREPP vetted practices and programs submitted by outside developers – resulting in a skewed presentation of evidence-based interventions which did not address the spectrum of needs of those living with serious mental illness and substance use disorders. They presented programs they knew how to run, rather than the programs people might need more. These needs include screening, evaluation, diagnosis, treatment, psychotherapies, psychosocial supports and recovery services in the community. In other words, programs previously defined as successful don’t, on further study, really get to the heart of the problems. So what is a successful program? 

Defining “Successful Rehab”

I’ll let professionals analyze the entire spectrum of community needs. But I think I share my definition of a successful drug rehab program with most people. A successful program would be one which treats anyone in the community who needs it. One where at least three-quarters of the participants complete the program, and where 80% or 90% of those who complete it are still drug free five years later. Sounds reasonable, don’t you think? But my young relative who relapsed, to deadly effect, was not an outlier. What happened to him is the rule, not the exception.

Treatment results are not impressive. According to one online site, (which I picked because they seem proud of their efforts)

  • Inpatient treatment (combining medication and counseling with an average stay of 31 days) costs $3,200 on average.*** 73% of addicts complete treatment and 21% (of the ones who complete the course) remain sober after five years.
  • Residential treatment (average stay 71 days) costs $3,100 on average. 51% of addicts complete treatment and 21% remain sober after five years.
  • Detox—which is medically assisted, and can go on for and average of  227 days—costs $2,200 on average. 33% of addicts complete treatment and 17% remain sober after five years.
  • Outpatient drug-free treatments—lasting 164 days— cost $1,200 on average.*** 43% of addicts complete treatment and 18% ( of the 43%) remain sober after five years.

     (***I’m not sure what these costs refer to: weeks? the complete program?)

These statistics, as weak as they are on their face, are even worse than they first appear. For example, 21% of 73% is 15%. That means that only 15% of people who start an inpatient treatment program are still clean after five years.  And the stats for detox are much worse: 17% of 33% is 5.6%. In other words, under 6% of people who go into detox are clean five years later. And so on. How can anyone consider this a successful program? And is it the program itself or follow up care in the community? What is going wrong?

In McCance-Katz’s statement, after some analysis she concluded,  “We know that the majority of behavioral health programs still do not use evidence-based practices: one indicator being the lack of medication-assisted treatment, the accepted, life-saving standard of care for opioid use disorder, in specialty substance use disorder programs nationwide.”  What I read her to be saying is that people around the country are paying for, and placing their hopes on, programs that often do not use the practices that actually work. This has to change.

Of course, we can all wish that the drug companies would be more responsible and that criminal drug cartels didn’t exist.  In the meantime, we can put pressure on the medical research establishment to figure out why some people seem to become addicted so easily, while others don’t. We can also ask those researchers to identify treatments that have been proven to actually work. And we can help our addicted loved ones find a treatment program that has been proven to work better than most. 

To do that, we have to talk about it. We have to be willing to face up to the problems we see around us. If we knew a relative or friend had cancer, we wouldn’t hesitate to mention a reputable treatment center for the disease. We can do the same for substance abuse and brain disorders.

And we can demand that our lawmakers fund research to discover causes and better approaches to cures. We voted for them. Our taxes pay their salaries. Let’s demand that they support Dr. McCance-Katz’s efforts to find evidence-based practices that work for the big problems. Sometimes those of us who have already lost our loved one have a valuable perspective on what works and what doesn’t. Those who have seen someone turn their life around also have learned much from the process. Let us all speak up.

Follow Up 

This is the official SAMHSA website that will direct you to a treatment program that at least has a chance of working:  https://www.samhsa.gov/find-help

And this is SAMHSA’s National Helpline

1-800-662-HELP (4357)
TTY: 1-800-487-4889

Website: www.samhsa.gov/find-help/national-helpline

Also known as the Treatment Referral Routing Service, this Helpline provides 24-hour free and confidential treatment referral and information about mental and/or substance use disorders, prevention, and recovery in English and Spanish.

The Center for Disease Control also has several valuable links about substance abuse disorder and an outline for ways for reduce overdose deaths.

 

For more information on my book, Aftermath, click here.

 

Memoir of caring for a sibling with Schizophrenia

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

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

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

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Here are links to three web  pages with more information:

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

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

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

My 2016 Thank You List

 

The week after Christmas has become a time of reflection for me, and with recent events fresh in my mind, I would like to end 2016 with a list of ten things I am thankful for.
1.  To Carrie Fisher and Debbie Reynolds, thank you for finding your way back to each other during your time on this earth. You survived times when one or the other behaved badly and still found a way to show each other how much you cared for one another. You are role models for all the mothers and daughters out there.
2.  To Congressman Tim Murphy of Pennsylvania, Congresswoman Eddie Bernice Johnson of Texas, Senator Chris Murphy of Connecticut, and the dozens and dozens of mental health advocates from D.J. Jaffe, to the folks at Treatment Advocacy Center, to Teresa and Anthony and Amanda and Kathy and Laura and Ilene and Joy and G.G. and Jennifer, and the rest of the gang. Thank you for working so hard to pass legislation to improve the lives of people with serious mental illnesses.
3.  To my siblings. Thank you for coming to my house with your enthusiasm and appetites for Thanksgiving and Christmas. Without you, how would I celebrate the holidays?
4.  And thank you for so thoughtfully leaving me so many of the scalloped potatoes. I admit that I DID complain after you took home almost every last shred of Thanksgiving left overs, leaving me only a little stuffing and pumpkin pie, neither of which I could eat because I am gluten and lactose free. Remembering the locust-like activity of that get together, for Christmas I had prepared two vast casseroles of scalloped potatoes, omitting the onions and substituting rice flour and lactose free milk for the wheat flour and cream that the recipe called for.(The Joy of Cooking said to use three pounds of potatoes for every six people. With 22 people expected, I had peeled and sliced ten pounds of them.) About seven pounds were left for my husband and I to enjoy this week. A nice change from chicken and white rice. So thank you.
5.  To my husband and children, thank you for heeding my request for events instead of things for Christmas. I look forward to our dinners and shows in the coming weeks. (See item #1)
6.  And to the dozen or so agents and small press publishers who declined any interest in my latest manuscript, thanks to you, as well. Even to the three or four who didn’t even send a rejection note, I am sure you were just worried about hurting my feelings. I know that the extra time I will now have to mull over what to delete, what to add, and where to simply try to “elevate the prose” will help make it a better book.
7.  To Comedy Central and Jon Stewart. Thank you for giving me the gift of more sleep. Over the previous year I had stayed up too late watching Jon and Larry. Without those old buddies I am going to bed earlier and getting close to seven hours of sleep per night.
8.  To Bosch dishwashers, for making an appliance that actually gets my dishes clean, and makes so little noise I can hardly tell it is on—although, I do wonder if it couldn’t have been possible to do this in less than two hours. Perhaps in the next model?
9.  To my nutritionist, Amy, and whoever invented the FODMAP diet. Thank you for discovering that essentially everything I eat gives me gastro-intestinal distress. If I avoid not just wheat, shellfish and dairy, but also onions, garlic, apples, peaches, baked beans, honey, and a list of about thirty other seemingly random food items, I will feel great. Of course, this leaves little on my OK to eat list—primarily chicken and plain white rice—but there you go.
10. Which brings me to item number 10. To chicken. To all the chickens—and I should probably add rice plants—who have sacrificed and will sacrifice their lives so that I can eat homemade chicken and rice soup (with no onions, garlic, soy, wheat, MSG or high fructose corn syrup) everyday for the rest of my life, thank you. And now on to 2017

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.

Doric Loop

for Nick and Charlotte

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 his 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 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. Friends moved to shield the horrified family from the ghastly sight. A flock of crows flew up into the winter sky cawing excitedly, a black cloud blocking the sun. 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.

RIP Nick. May, 1995 – January, 2014

 

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.