“Am I a horrible person?”

I received this comment a few days ago, and I wonder if anyone — somebody, please? — has a response for the person who wrote it. This wrenching question seems to me to embody one of the most painful and awful choices that siblings and even parents of people with severe mental illness may sometimes feel they have to make in order to save their own lives and their own sanity….Or not. What do people think?

“I have a schizophrenic brother, he became ill at 27,
and it was a terrible time. My brother is now 54 years old, my parents have long since died. I have no
relatives that care about him or me. I have to tell
someone I don’t know where my brother is, he was in a
group home and was told he could no longer live there
this home was horrifying. I tried all my life to help
my brother, I had no life, I finally just had to let
him go, I pray god is watching over him. Do you think
this makes me a horrible person?

4 Answers from comment section:

#1 Wow.
I want to respond – though I’m sure how. It can very difficult to find the right words sometimes.

You asked: “Do you think
this makes me a horrible person?”
No. I do not. Caring for someone with mental illness is a very difficult road to follow. It can take so much out of you and from you…that there is simply nothing left to give.
If you are unable to care for yourself properly, meet your own personal needs (physically, spiritually, & mentally) – then how can you expect to do it for someone else?

I can’t imagine what a difficult choice this was for you.

Best wishes,
~V.

#2  I ask myself this question as well. My wife is suffering with a serious mental illness. Her diagnosis is major depression with psychotic features, although bipolar has not officially been ruled out. I’ve been writing about my experiences as a care provider. It’s not easy. I don’t want to quit or walk away from her, but it’s not necessarily easy to keep going. I plan on continuing to blog about my experience as the family member who is trying to help, so that people like this reader can hopefully find some encouragement.
And I don’t think that this person is a horrible person at all.

#3

Hi Pam,

No, I do not think that this person is a horrible person at all for detaching from her brother’s problems. Whether we like it or not, we have to find the solutions to our problems. Her brother has to do what we all at some point have to do: reach out for help. He has the ability to do this. I’m sure of it. And I know it isn’t easy, but it is possible. Sometimes the best form of help comes not from family members, but from virtual strangers who have dealt with similar problems or are in the helping professions. The people who are closest to us can carry emotional baggage and this can both get in the way of helping and result in hurt feelings. But the people who are not so involved in our personal lives can often give a fresh perspective and can be genuinely helpful. This takes the pressure off all concerned. Ideally, family members should be able to provide some support, but not if it robs them of their own well being. I agree with V. if you don’t take care of yourself, how can you be of help to anyone else?

#4  The person writing to Pam described themselves as having “no life at all”.  This sounds depressing and sad.  They sound like the quality of their life is so bad, that they couldn’t take on the burden of seeing to the quality of their brother’s life.

I see in my family that my sister is weakened by a slight touch of the schizoaffective disorder that I have, and perhaps my brother as well.  But I am also confident that they would not desert me, as fragile as they might be.  This gives me strength and confidence to live, because I am dependent on the kindness of others, be it the government, or my husband, or my parents, or my siblings.  I cannot provide a roof over my head or feed myself.  I cannot work for a living.  If it weren’t for charity from the people who love me, I would be homeless.

I don’t think this person is horrible, I think that they are in pain, and they have burdened themselves with even more pain by turning their back on their brother.  One of the ways to have a fulfilling life is to do charity, is to be giving, and to go the distance for someone other than yourself.  How proud this person would be if they had saved their brother!  Suddenly, they would indeed “have a life”.  They would have been a hero.

This writer has traded their brother for a large helping of guilt.  I don’t intend to increase or decrease the feeling of that guilt.  But I know that if I had my brother’s life in my hands, I would not trust him to God, I would do what ever I could to tend to his welfare.  My meager resources would be used, my emotions might be stretched, my patience would be tested, and yes, the life of another human being can be a heavy load, but I would take that load and offer if it were the only thing I had, the living room sofa!  I know that social services would come to my rescue, although it may take a long time for them to be mobilized.  I know a schizophrenic in my area that had to wait two years for a government funded apartment.  But the apartment eventually came, and now he is safe and secure.

Doing what is right can be hard.  Following your heart can lead you into a wilderness that is unforeseen and perhaps, terrifying.  But I know my heart, and it would never tell me to turn my back on either my brother or sister.  In fantasizing about helping them, I can only believe the final result would be satisfaction.  And knowledge that the heart has won.

The Mentally Ill in Prison and Out-patient Commitment Laws

Dear Pam,

Thank you for the link to the Dr. Manny Show. There are indeed many faces of mental illness. Some people have mild cases and are able to work and function at the same level as anyone else.

Congress passed mental health legislation in 2008 providing for workers who have psychiatric dysfunctions to be covered under their employers’ health insurance at the same rate as employees with physical illness (certain exclusions apply). That was a positive step. However, acute mental patients do not benefit by that law, because severe mental illness is often too debilitating for victims to work, especially without the psychiatric treatment they need. In fact, people with acute schizophrenia, bipolar disorder, PTSD, and other conditions frequently resist treatment even when it is available to them.

Unfortunately, 1.25 million mentally ill Americans are currently imprisoned for offenses ranging from simple vandalism or disturbing the peace to murders. Last January, Rep. Eddie Johnson (D-TX 30) introduced H.R. 619, a congressional bill to resume Medicaid coverage for inpatient psychiatric care for patients in crisis and for people who require long-term containment in a secure treatment environment (such as patients who have done violence).

H.R. 619 is an important bill that deserves our support. It was largely the removal of Medicaid funding several decades ago that led to criminalizing mental illness. That in turn led to many other problems, such as overcrowded prisons and a burdensome prison budget. Hundreds of thousands of acute patients were “de-institutionalized” in the 60’s and 70’s only to become homeless and/or prisoners. Thousands of acute mental patients continue to be dismissed from mental hospitals and prisons without subsistence assistance and provisions for continuous monitoring and treatment under programs like Kendra’s Law.

Assisted Outpatient Programs like Kendra’s Law have been proved to reduce homelessness, arrests, hospitalizations, and incarcerations by up to 85% (among New York participants, compared to their circumstances three years before becoming program participants). The impressive rate of reduced arrests and incarcerations also indicates that community safety was improved significantly as less crime was done, and it also follows that the prison budget was lessened by helping patients with living arrangements and mandating continuous psychiatric care for ex-offenders and former inpatients who often lack the wherewithal to make wise treatment choices and avoid psychiatric crises.

Assistance to the Incarcerated Mentally Ill (AIMI) supports Rep. Johnson’s bill, H.R. 619, as well as NAMI, Treatment Advocacy Center, and many other mental health advocates who believe resuming funding for inpatient treatment is best for patients and for America. In fact, 100% of police officers I polled agree that prison is not the place for severe mental patients, where they comprise 60% of the inmates kept naked in solitary confinement cells.

I solute Congresswoman Johnson, a former psychiatric nurse, for introducing H.R. 619, and I hope everyone who is concerned about human and civil rights will support the bill and end the discriminatory practice of punishing Americans for being sick. I pray for another bill to be introduced to address the second cause of mental illness having been criminalized in America – the lack of continuous care and subsistence assistance for released prisoners and former inpatients. Kendra’s Law should be applied nationwide so that acute mental patients will be treated, not punished, for having a common, treatable health condition that requires monitoring and care just as diabetics and heart patients receive.

Inpatient hospitalization was not included under the national health care plan, so it is very important to pass H.R.619 as a separate bill. Please write an email to your representatives tomorrow and ask them to co-sponsor the resumption of Medicaid for psychiatric hospitalization and to institute Assisted Outpatient Treatment progams, which would not only be more fair and humane to sick people and their families, but would also save taxpayers billions each year as our prison rolls decrease.

Thank you, Pam, for this forum and for the useful information that WagBlog always has. I will share the link to the Dr. Manny Show with many people at my Care2 Sharebook and at FreeSpeakBlog, where we often publish mental health news as well as other matters that have to do with promoting human rights for prisoners.

Mary Neal
Assistance to the Incarcerated Mentally Ill
http://www.Care2.com/c2c/group/AIMI

PS Please VOTE for H.R.619 to replace prisons w/ hospitals for acute mental patients. The link below will take you to OpenCongress.org where you can use your voice to say to our elected officials, “We care about the least of these, His brethren: naked, sick prisoners.” (Matt.25:36) http://www.opencongress.org/bill/111-h619/show

While many Americans celebrate the health care reform bill’s victory, please agree that millions of citizens should not be left imprisoned or live under the threat of prison because their health care needs were omitted. Put the “NATIONAL” into health care reform by supporting H.R.619: Medicaid funding for psychiatric hospitals instead of prison cells for mentally challenged people – a change that will save money and restore lives!

Thanks in advance for voting. Please invite others!

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Dear Mary

I think you know that I was quite ill until starting in 1996 when Zyprexa came out, but not truly until 2005,  when a complete transformation occurred. However, when I relapse, I “relapse good” — as my medical record from the October hospitalization attests, with nearly constant locked seclusion or restraints for 6-8 days etc. Nevertheless, I am with you, though reluctantly, as I also know how terrible the side effects are of some of the older medications are as well as the newer ones, and the horrible state of affairs when a harried or burned out psychiatrist simply rams them down your throat without consultation at least after the acute psychosis resolves and you are able to discuss such things.

When I was in Manchester Hospital, I begged to be put back on my anti-convulsants and the Abilify/Geodon combination that had served me well for many months, believing, with reason, that I was suffering from a flare-up of my neurological Lyme disease, an illness that had always and invariably produced severe psychiatric symptoms. I needed, I knew, an increase of those drugs rather than a wholesale change to the “old drug” Trilafon. But did the doctor listen to me? No, he did not, despite my  ability to say as much to him, my psychosis consisting not of incoherence but of paranoia and command hallucinations to  harm myself in order to atone for being the Devil…I could and did argue with him, vehemently, and steadfastly, refusing to take the Trilafon, until he instituted a standing restraints order for every time I was non-compliant.

These are the sorts of things that trouble me about  forced treatment and/or outpatient commitment laws. It is not that I think people suffering from severe psychiatric illness do not need or deserve treatment, only that the treatments available are not always effective or tolerable. And until they are, I am not sure that the only way to go is only to force medication on everyone willy-nilly, not, at least against their protestations of extreme discomfort. At the very least every effort must be made to find a medication or medication combo that keep the psychosis at bay while making the person as comfortable as is humanely possible…which is difficult when a psychiatrist is saddled with a hundred patients to see in a week. It took Dr O and me six years or more to find  the right combination of drugs, and to titrate them precisely enough to treat my symptoms,  reducing them significantly while keeping unpleasant side effects to a minimum.

There is much about the treatment of the mentally ill that is so disgusting I cannot begin to cover them all here, though your comment is very thorough, which is why I have put it up  as a regular post. I appreciate your links to sites that do so as well. You did not mention one horrific situation: where under-utilized supermax prisons now house “uncooperative mentally ill prisoners” whose lack of compliance or cooperation is due solely to their illness. Though it is well-known that such brutal conditions drive “normal” or reasonably sane prisoners to insanity, can you imagine the brutality of forcing a psychotic individual to reside in such isolation? (Note however that in years past, as you know, isolation and seclusion of disruptive patients in hospitals was also the norm, since “overstimulation” from the outside world was considered to cause their agitation…I have been in hospitals where, in bare seclusion rooms, I was not permitted access to letters or phone calls, visitors or even reading material. As for restraints, they too were inhumane as I was shackled SPREAD- EAGLE, to the four corners of the bed and not, as even then was considered proper, with my legs straight and my arms in position by my side. This treatment moreover was considered normative for agitated psychotic patients rather than cruel in the extreme  as recently as the 1980s in some municipal hospitals in Connecticut.

I  recommend the book, THE DAY THE VOICES STOPPED, by the late Ken Steele, who wrote of his experience as a 14 year old with the savage isolation policies in NY hospitals in the 60s and 70s,  treatment that today seems literally incredible.

Well, I thank you for your contribution to my blog, Mary. You are welcome here at any time. I will post as many of your comments as I can.

Sincerely,

Pam W

Jane Crown Poetry Radio

Okay, all you poetry fans of mine, and anyone out there who reads this in general! This is a rather late announcement, but this Sunday at 5pm Eastern time (you will have to make the proper adjustments if you live in other time zones) Jane Crown, at http://www.janecrown.com will be doing a 90 minute interview with me http://www.janecrown.com/archive_radio/Pamela_Sprio_Wagner.mp3 that will be part personal interview and part poetry reading  both from WE MAD CLIMB SHAKY LADDERS as well as new poems, and she may possibly include some reading and/or discussion about my memoir DIVIDED MINDS: Twin Sisters and their Journey Through Schizophrenia. I hope as many of you as possible will listen, and if you are not interested in poetry will listen out of interest in schizophrenia, as we certainly will speak of that.

By the way, Jane tells me that the show will be archived and “available forever” so if you cannot sit and listen for 90 minutes this Sunday, do not worry as you can do so at any time and for any length of time. Just follow the link or do a search for Jane Crown and radio or poetry and you should find it without trouble.

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Now for an update: Well, first of all, let me say that I want to write an update but first I need to start my review of the poems I am going to read on Sunday, and read a little of DIVIDED MINDS, so I can recall what got into the book out of my 400pp original manuscript and what was cut. So forgive me if I put the update and rest of this post off for a few hours and get back to it maybe after 11 pm tonight. Or if not then, as I must get up early tomorrow, then I will write a new post tomorrow. For now, suffice it to say that I feel extraordinarily HAPPY!

Book of the Year Finalist

Hi All,

Apparently We Mad Climb Shaky Ladders (CavanKerry Press, Feb 2009) my book of poems about living with schizophrenia, has been nominated a finalist for ForeWord Magazine’s 2009 Book of the Year (in the Poetry category). I dunno what this means, and I doubt highly that it will win, but I am very happy and grateful to have been made a finalist at all. The results will be announced on May 25th  at the BookExpo American, wherever and whatever that is. I’ll keep you posted, or perhaps you can keep me posted…

Here’s the cover of the book just in case you don’t know what it looks like:

Schizophrenia: Dr Manny Show on FOXNEWS.com (new link)

This is a link to the Foxnews.com Dr Manny show episode that was filmed in January. I think it is self-explanatory. Credit goes to Jessica Mulvihill, who did the interview, which was one of the best I have ever been “subjected” to (I have not yet found a word that adequately describes the process of being an interviewee…What do you call it when you have been interviewed, besides subjected to it? Any suggestions?) Anyhow, it was, despite the word, a very interesting and enjoyable interview experience.

http://video.foxnews.com/v/4056071/the-many-faces-of-mental-illness/?playlist_id=86899