Dementia, A Father, A Son, And The Long Goodbye

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(6-19-22)

A FATHER’S DAY GOODBYE

Published in THE WASHINGTON POST  on Sunday, June 22, 2014

 By Pete Earley    

Father’s Day found me with a man who often doesn’t remember who I am, although we have spent much of his 93 years together. My father has dementia.

Five years ago, I persuaded my parents to move from Spearfish, S.D., into a second house that my wife and I own that doubles as my office. Leaving a community where they were well-established was difficult. But they enjoyed seeing grandchildren, spent Saturdays at garage sales and played Upwords with me at lunch time. It was good.

I first noticed little things. Forgetfulness, confusing names. It’s part of aging, I thought.

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I Care For My Blind & Seriously Mentally Ill Brother On The Streets: Not The Pretend Mental Health Care System

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This is James Mark Rippee. He has lived on the streets of Vacaville, California, for fifteen years. He has schizophrenia. Thirty-five years ago, Mark Rippee suffered a motorcycle accident that left him blind, with head trauma, brain loss, and a shattered right leg that is kept in place with a metal rod. He has endured more than sixty surgeries. He is beaten and robbed regularly. (Photo courtesy of Author Ron Powers)

(6-13-22) Guest post today by Linda Rippee Privatte.

WHAT DO YOU CALL ME?

I have been a caregiver on the streets of my hometown of Vacaville, California, to my brother, Mark, who is disabled, blind and has a serious brain disorder with anosognosia (lack of insight). He has been left untreated by the system and homeless for 14 years now.

Lately I have been wondering what title I would be given. That is if our U.S. mental health system even acknowledged and valued the family members who go to the streets to care for their homeless untreated seriously mentally ill (SMI/SBD) loved ones?

I have thought long and hard about the many things I try to be to my brother. Treatment will never be in his reach while the sickness in his brain tells him to say “no” to all offers of help. Lack of insight further complicates care given out on the streets.

I take him water, food and clothing, and each time he has nothing with him again. I show him love and human kindness. I remind him about family memories and make him laugh. I hold him when he is sobbing with delusions. I try to calm him when he is raging in psychosis. I am his substitute for an In-Home Supportive Services Caregiver, nurse, therapist, and social worker.

My responsibility goes even further as I am also expected to answer to my community about their expectations of removing my brother from their streets all the while I am out on those streets caring for him.

Rather than reform HIPAA, LPS, and mental health laws, mental health professionals do not want to acknowledge that they intentionally send the SMI/SBD to U.S. streets. We have advocated for my brother, Mark, unsuccessfully for 34 years due to California legal blockades. He has not had mental health treatment or services in more than 3 decades. The sad truth is that there is no true mental health system in the United States for those with serious brain disorders.

Rather than acknowledge this, mental health professionals and legislators will blame and shame the families.

Through HIPAA, they will blindfold, silence, and handcuff our hands, and still expect us to do the heavy lifting for them. Our family has been my brother’s mental health care system. I am his lifeline. If a loved one of yours develops a serious brain disorder you will become their lifeline too. If the title has not yet been claimed… I will boldly do so now.

I am an American Curbside Caregiver, and I am not the only one!

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Two Experts Explain How To Stop Jailing Americans Whose Only Real Crime Is They Got Sick

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Image by Gordon Johnson from Pixabay

(5-31-22) Norman Ornstein lost his son to mental illness. Judge Steven Leifman, a hero in my book CRAZY: A Father’s Search Through America’s Mental Illness, has become a leading, national expert on how to stop the inappropriate incarceration of Americans with serious mental illnesses. 

Locking People Up Is No Way to Treat Mental Illness

If we stopped using prisons to warehouse psychiatric patients, we could heal people and save tax dollars.

By Norm Ornstein and Steve Leifman
Published in The Atlantic Magazine

Mental illness has touched nearly every family in America in one way or another. Recent reports suggest that the coronavirus pandemic has only exacerbated this situation, particularly for young people and children, as well as for health-care workers. Despite the ubiquity of mental illness, our ability to help those who have behavioral disorders recoup lives interrupted by them is deeply inadequate.

One of us has encountered the broken system firsthand, through the experience of following a son who had a psychotic episode at age 24 through a 10-year struggle with his brain disease, which was intensified by anosognosia, hampering his insight into his illness. The other, a Miami-Dade County judge, has worked for more than two decades to transform the criminal-justice system and how it deals with those with serious mental illnesses such as schizophrenia. Together, we documented this effort in the film The Definition of Insanity, which showcased reforms that have saved both lives and money. Our experience proved to us that even a broken system can be mended.

President Joe Biden’s recent announcement of a new package of measures building on last year’s American Rescue Plan and aimed at tackling the country’s crises of mental health and substance use is extremely welcome, if overdue. The provision of services and treatments for and care of these conditions is antiquated, dysfunctional, and, in places, nonexistent. But throwing money at the situation won’t alone solve it. Without a comprehensive overhaul of the system, we run the risk of wasting not only valuable tax dollars but a once-in-a-generation opportunity to fix it.

The failures in services for people with mental illness and behavioral disorders associated with substance use have resulted in mass incarceration becoming the country’s de facto mental-health-care system. People with mental illnesses in the United States are 10 times more likely to be incarcerated than they are to be hospitalized. Those who don’t end up in prison are likely to cycle repeatedly through patchy psychiatric care, spells of homelessness, and emergency rooms. And every year, about 2 million arrests are made of people with serious mental illnesses.

As a result, the makeup of our prison population tells its own tale: More than 70 percent of people in American jails and prisons have at least one diagnosed mental illness or substance-use disorder, or both. Up to a third of those incarcerated have serious mental illnesses, a much higher rate than is found at large. On any given day, approximately 380,000 people with mental illnesses are in jail or prison across the United States, and another 574,000 are under some form of correctional supervision.

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“Spare Me The BS About Mental Illness,” Sen. Murphy Knocks Down Straw Man. Don’t Blame Mass Murders On SMI

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(5-26-22) The moment I heard about the 18 year-old shooter in Texas, I knew mental illness would be blamed.

This always is what happens and Texas Gov. Greg Abbot was quick to prove me true. (See: Texas Gov. Greg Abbott blames mass shootings on mental-health concerns, despite noting that there’s no evidence that the Texas-school gunman had mental illness)

Yes, there have been horrific incidents caused by a shooter who has been diagnosed with a serious mental illness and in many of those incidents, the shooter’s parents had tried to get their child psychiatric help without success.

But studies show the most common killers are not being driven by a mental illness – not hearing voices or having wild mood swings. Instead, they are motivated by racism, hate, and feelings of revenge or a desire to be famous. Here’s a list of reasons published in a major study of mass shootings.

Whatever the style of killing, the motives for mass murder are organized around
five primary themes that can occur singly or in combination (Fox & Levin, 1998).
Specifically,
1. Revenge (e.g., a deeply disgruntled individual seeks payback for a host of fail-
ures in career, school, or personal life);
2. Power (e.g., a “pseudo-commando” style massacre perpetrated by some mar-
ginalized individual attempting to wage a personal war against society);
3. Loyalty (e.g., a devoted husband/father kills his entire family and then himself
to spare them all from a miserable existence on earth and to reunite them in the
hereafter);
4. Terror (e.g., a political dissident destroys government property, with several
victims killed as “collateral damage,” to send a strong message to those in
power); and
5. Profit (e.g., a gunman executes the customers and employees at a retail store to
eliminate all witnesses to a robbery

I was pleased to hear Sen. Chris Murphy, (D-Conn.), who helped push through one of the most important mental health laws in recent years, knock down Gov. Abbott’s straw man.

“Spare me the bullshit about mental illness. We don’t have any more mental illness than any other country in the world. You cannot explain this through a prism of mental illness, because we don’t — we’re not an outlier on mental illness. We’re an outlier when it comes to access to firearms and the ability of criminals and very sick people to get their hands on firearms. That’s what makes America different,” Sen. Murphy said.

Thank you Sen. Murphy for speaking out against the further stigmatization of those with diagnosed mental illnesses. They have enough trauma in their lives without being blamed for mass murders.

Speaking Out Matters: Sens. Cassidy & Murphy Hope To Improve Historic Mental Health Law

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Sens. Cassidy & Murphy

(5-20-20) How important is it for us to tell our personal stories – to put a human face on mental illness?

Six years ago, Senators Bill Cassidy (R. La) and Chris Murphy (D. Conn.) got Congress to pass a major mental health bill, Now they want to improve their legislation by addressing concerns their first bill didn’t cover. In a recent interview on NPR, which consistently covers mental illness, they spoke about their agenda. They also mentioned how my book helped bring them together.

This is why I believe telling our stories is the only way we can make the public aware of how badly we treat individuals with serious mental illnesses and their families in our country. Speaking out can make a difference and you never know who might be influenced by your words.

Two Senators Are Working Across The Aisle To Address The Mental Health Crisis

8 minute listen

Transcript of NPR broadcast 5-19-20

AILSA CHANG, HOST:

Mental health care in the U.S. has long been riddled with the same problems – not enough funding, not enough programs, not enough providers. And the pandemic has only worsened this crisis. Rates of depression and other mental illness have soared.

BILL CASSIDY: Everybody has a personal experience with somebody who has had serious mental illness.

CHANG: That is Republican Senator Bill Cassidy of Louisiana. He and his Democratic colleague, Senator Chris Murphy of Connecticut, are working together to renew a mental health reform bill in Congress.

CHRIS MURPHY: So Bill and I kind of found each other six years ago and developed, you know, what, at the time, was really the most comprehensive piece of mental health reform legislation that Congress had seen in a decade.

CHANG: That bill, which was signed into law in 2016, is set to expire this year. Now the two senators are working across the aisle to get Congress to reauthorize what they say is an improved version of the legislation. And this increasingly rare bipartisan partnership, well, Senator Cassidy says it emerged from a well-worn book.

CASSIDY: I was reading a book by Pete Earley called “Crazy,” a journalist who had written about his son’s travails with mental illness and in the criminal justice system. And, Chris, let me turn the story over to you.

MURPHY: Well, so I was interested in working on mental health but needed a partner. And I ran into an advocate on a bus who told me that I should call Bill Cassidy because he saw Bill Cassidy walking into a hearing the other day with this worn out, dog-eared copy of “Crazy.” And that’s what I did. I read the book first. I reached out to him. He had just gotten to the Senate. We found out that there’s a lot of things that Bill and I disagree on.

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“Why did this happen?” Naomi Judd once wrote about suicides. “We don’t have very good answers.”

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(5-3-22) On the final page of my book about my son and mental illness, I write: “Mental illness is a cruel disease. No one knows whom it might strike or why.”

I thought about these words this past weekend when I learned that Naomi Judd, the iconic country star and one-half of the mother-daughter duo The Judds, had ended her life at age 76.

Why?

She was striking, famous, talented, successful and well-loved. Perhaps the answer can be found in her own words. In 2018, she talked openly in a People magazine story about her struggles with depression .

“Nobody can understand it unless you’ve been there. Think of your very worst day of your whole life – someone passed away, you lost your job, you found out you were being betrayed, that your child had a rare disease – you can take all of those at once and put them together and that’s what depression feels like.”

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