A Loving Son Cares For His Ill Mother: Struggling To Navigate System & Deal With Her Voices

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(6-22-16) I asked Mike Gaeta to share a blog with my readers that he had written about caring for his mother.) 

Benevolent Neglect: My Mom and Her Serious Mental Illness 

By Mike Gaeta

This week marks a month since my mom moved in with me. I knew it’d be challenging. In actuality, it has been damn near overwhelming.

On top of being her caretaker seven days a week, I also play the role of counselor, social worker, case manager, advocate and her main peer and family support person. Among other things, I’ve spent countless hours just trying to find a clinic or doctor for her (Many are not accepting new Medi-Cal patients, due to the increase in insured people from Obamacare.).

Interpersonally, challenges also abound. I’ve been trying to bond and build trust with my mom. That has been made exceedingly difficult, though, due to her delusions and hallucinations. These affect her moods, comprehension ability, level of social engagement and just her ability to have a conversation with me. In my estimation, she hears voices around 80% of the time.

As is common with people who hear voices, the voices can vary in the emotions and associations they arouse. Put simply, there are “good” voices and “bad voices.” For my mom, they take a religious form. There are “godly” voices and “evil” voices. The godly voices look out for her and protect her, she says. They can be biblical figures and/or prophets, while the evil voices can be evil spirits and/or witches. The evil voices torment my mom by telling her various things like they want to kill her, that she is getting ugly and old and even sexual things.

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Violence and Mental Illness: An Uncomfortable Subject But A Grim Reality For Some Families

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Public fears of violence on the street by discharged (mental) patients who are strangers to them is misdirected. The people at the highest risk are family members and friends who are in their homes or in the patient’s home.

(6-23-16) In a study released this week, the Treatment Advocacy Center investigates a subject few like to discuss: family violence, specifically homicides committed by persons with mental illnesses. 

Because of stigma, we always begin every conversation about violence by explaining that individuals with mental illnesses are no more violent than the general public and, in fact, are more likely to become victims than perpetuators.

And that is exactly how the authors of RAISING CAIN: The Role of Serious Mental Illness In Homicide begin their 48 page study.

But they quickly explain their rational in writing about murders committed by persons with mental disorders:

It is…politically incorrect to study the relationship of family homicides to serious mental illness, especially in the United States, where the concept of “recovery” is the dominant theme in writing about individuals with mental illness. (But) …it is not discourse about family violence and homicides that is a major cause of stigma against all people with mental illness; rather, it is the family violence and homicides themselves. Until we confront the causes of family violence and homicides directly,  the stigmatization of persons with serious mental illness will continue to be an enormous problem. Yet, to ignore that a small percentage of persons with mental illness can be violent seems disingenuous.

This reasoning should not surprise anyone who is familiar with TAC, which is one of a few advocacy groups that speaks openly about violence. What did the authors of the report find:

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Advocate Argues Local CSB Erred In Defunding Top Peer Job: Chilling Impact

 

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(6-24-16)  A local peer advocate asked if he could respond to a recent blog that I posted about our mental health board’s decision to defund the top peer job in our community. Yesterday afternoon, three Fairfax groups asked residents to sign a petition calling on the Community Services Board to restore funding for the Director of the Office of Consumer and Family Affairs. )

By Michael Pendrak

The Fairfax/Falls Church Community Services Board’s recent decision to save money by not filling the position of Director of Consumer and Family Affairs (DCFA) has devastated the peer/consumer community.  It has caused a chill in relations and mistrust between those who deliver and receive mental health services. Instead, of recognizing and appreciating the voices of peers/consumers, we feel the CSB board is practicing tokenism.

Eight years ago, Fairfax County undertook a detailed examination of its mental health services and issued a list of recommends in what is known as the Beeman Report. One of its highest priorities was to “Establish an Office of Consumer and Family Affairs with well-defined responsibilities and a leader who reports directly to the CSB Executive Director.”  (At the time, persons with mental health experience were more commonly known as consumers as in, ‘consumers of mental health services.’)

The Beeman Commission urged and the Board of County Supervisors agreed that there should be an office dedicated specifically and exclusively to representing the interests of consumers and their family members in Fairfax-Falls Church.  That office was to be free from interference from anyone below the level of the CSB Executive Director.  The Beeman Commission noted it was vital that there be peer leadership at the highest and all levels of the CSB.

At present, there are leaders among peers, but there are no peers among the leaders in the CSB.

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DisAbility Agency Sends Letter of Complaint: What Kind Of Response Is That?

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(6-20-16) Here’s a quiz.

Choose what you would expect an agency — created to protect persons living with disabilities — to do when a Virginian with schizophrenia gets arrested for taking $5 of snack foods without paying, is jailed for 101 days, and found dead in a feces covered cell from a heart attack caused by starvation?

(A.) Investigate the death and conditions in the jail to determine why that inmate lost 40 -50 pounds while supposedly being checked daily by a nurse.

(B.) Join the ACLU, Bazelon Center for Mental Health Law, NAACP, the National Alliance on Mental Illness, Virginia Chapter of Mental Health America, and the Washington Post in asking for a federal investigation.

(C.) Hold a press conference to denounce the death and file a lawsuit under the Civil Rights of Institutionalized Persons Act against the jail and state.

(D.) Write a letter of complaint to the governor.  

If you answered (D.), you have correctly answered what the Richmond-based disAbility Law Center of Virginia, an organization that contracts with the federal government to act as legal advocates for Virginians with disabilities, has done in the tragic case of Jamycheal Mitchell, the 24 year-old, African American inmate who was found dead last August in the Hampton Roads Regional Jail in Portsmouth.

A letter.

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Another Mentally Ill Prisoner In Virginia Dies: State Officials Won’t Answer Questions About It

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(6-17-16) The Richmond Times-Dispatch has learned that a prisoner died at Central State Hospital, a mental facility in Virginia, after being sent there from the Hampton Roads Regional Jail in Portsmouth. This happened between May 25th and June 8th.

This is the same jail where Jamycheal Mitchell, who had schizophrenia, was found dead last year from a heart attack caused by starvation. The National Alliance on Mental Illness, Virginia chapter of Mental Health America, the NAACP, the Judge David L. Bazelon Center for Mental Health Law, and the ACLU have asked the U.S. Justice Department to investigate Mitchell’s death pursuant to the Civil Rights of Institutionalized Persons Act. In a strongly worded editorial, The Washington Post also has called for a federal probe.

The Justice Department has been reluctant to investigate individual deaths unless those fatalities reflected a pattern of civil rights abuses. If this new death resulted from how the inmate was treated while being detained at the Portsmouth jail, advocates could argue that there is a pattern of abuse of prisoners with mental illnesses inside the jail.

Unfortunately, Virginia mental health officials, the jail, and state bureaucrats all declined to answer basic questions about this second death when asked by investigative reporters Sarah Kleiner and K. Burnell Evans. Instead they claimed the federal Health Insurance Portability and Accountability Act (HIPAA) prohibited them from talking about the death.  A HIPAA legal expert in Virginia was quoted in the article saying, “People take a more aggressive approach to restriction (under HIPAA) than they really ought to.”

The failure of state officials to answer questions should not shock anyone who has been following Virginia’s shameful actions in the Mitchell case.

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Local CSB Hiring More Peers, Committed to Getting One On Its Board, Director Says

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(6-15-16) The Fairfax-Falls Church Community Services Board, which provides mental health services in my Virginia county, plans to hire at least one addition peer specialist in fiscal year 2017 and another in 2018, in addition to continuing to fund ten Diversion First peer spots through outside contracts, CSB Executive Director  Tisha Deeghan told me in an email.

She was responding to a blog that I published that questioned why there was no self-acknowledged peer on the 16 member CSB board and why the CSB recently decided not to fund its top peer management job after the retirement of Dave Mangano. In her email, Director Deeghan reiterated that the CSB and its management consider peer support essential. 

She explained that Mangano was specifically hired to introduce peer programs into the county. Those programs are now so well-established that the board does not believe it can justify paying a Director of Consumer and Family Affairs manager at a cost of $147,815 annually (pay and benefits) to oversee them when it has other pressing program needs that require funding. Mangano’s responsibilities have been divided among other senior managers, but none of them is a self-acknowledged person with lived experience. 

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