I was listening to Representative Joe Kennedy on WGBH Radio on October 11, 2018 (https://www.wgbh.org/news/national-news/2018/10/11/rep-joe-kennedy-ted-cruzs-unpopularity-is-the-one-unifier-in-washington ) and I was struck by his comment, “only in mental health/behavioral health do we force families to wait for their loved ones to be at the equivalent of stage three cancer before receiving help in a timely manner.” Incidents of family violence due to undertreated and untreated mental illness is rampant.
The recent family violence in Acton MA in which a father was stabbed to death (with scissors), mother injured and released, and girlfriend and stabbed and strangled, perpetrated by 25-year-old Benjamin DiCrisitina experiencing a psychotic break, is another incident of inadequate mental health intervention. Sadly, mother and son had gone to the ER the day before due to the increasingly psychotic behavior of the young man. He was released with a list of programs to look into. Now he is a murderer.
In spite of repeated police intervention, including a merry go round of emergency evaluations and hospital discharges, Jeffrey Yao, the Winchester man who stabbed a 24-year-old woman at the public library, was diagnosed with untreated schizophrenia. This is a condition that was known by his parents and the community at large, however there was no recourse to providing care to an unwilling patient until he committed a crime of harm to another or himself.
Nikolas Cruz, the Parkland shooter, has a long history of mental illness. He had been involved in JROTC and had access to guns. We all know the rest.
Family members are on the front lines, providing care and resources to their adult loved ones who are often too ill to function as independent adults. Individuals with serious mental illness (SMI) confer great burdens to their families in particular and their communities in general. Within the scope of the work, there is the first priority of developing a safety plan (https://growastrongfamily.org/safety/ ) to defuse crises and promote the well-being of all. This usually includes developing a profile of their loved one and making it available to the local police (for if and when they are needed to intervene) as well as whatever community mental health resources are available. Families understand, all too well, the potential for violence when their loved ones are untreated or under-treated. Family members are often handcuffed by a system that excludes their feedback and maintains a stance of the “civil rights” of people with SMI over family investment. That is the current scenario. So, we ask, what is the relationship, if any, between violence and mental illness?
The research evidence conclusively shows that the large majority of people with SMI are never violent and that most interpersonal violence in the US, 95–97%, is not attributable to mental illness (Swanson, McGinty et al, 2014; McGinty, et al, 2018; emphasis mine). What are we talking about here, in terms of numbers of adults impacted with SMI? The Center for Behavioral Health Statistics and Quality (2015) published from the results of a 2014 survey indicates, “1 in 5 adults aged 18 or older (18.1% or 43.6 million adults) had any mental illness in the past year, and 4.1% (9.8 million adults) had serious mental illness.” These numbers are consistent with those acquired over the past decade.
Cook & Goss (2014) and Jaffe (2017) note that “Untreated serious mental illness (SMI as in schizophrenia, bipolar disorder, and depression), especially when paired with substance abuse, are at increased risk of committing violence against others. In over 20 studies, SMI tends to be three to five times more likely to commit violence than are people without such a diagnosis. Most of the violence perpetrated by these individuals tend to be directed at those they know and in private spaces. Furthermore, they tend to commit suicide rather than commit homicides by more than two to one and this is estimated to be a factor in 80-90% of self-inflicted death. To reiterate, “Epidemiologic studies show that the large majority of people with serious mental illnesses are never violent. However, mental illness is strongly associated with increased risk of suicide, which accounts for over half of US firearms–related fatalities (Swanson et al, 2015).” In addition, the research has identified that more than half of the mass murders in the past century, have been committed by individuals with an SMI diagnosis.
The most comprehensive response to this issue comes from DJ Jaffe (2017), the Executive Director of Mental Illness Policy Org, and the author of Insane consequences: How the mental health industry fails the mentally ill. This well researched volume is a must-read for anyone who is interested in the issues related to mental illness and violence. This well-researched tome is significant in that it poses solutions to reduce the adverse impact of violence by the untreated individual with a co-occurring diagnosis of serious mental illness and substance use disorder. The other piece that is so important to understand is the impact of these individuals on their families; the interpersonal violence that is perpetrated and the trauma of suicidal behavior or success that these families must manage.
In addition to diagnosis, Jaffe recommends the following: use the term “mental illness” in nomenclature in order to establish the focus on illness that can be treated. Ensure that criminal justice leaders are on mental illness policy committees since the criminal justice system has become the mental illness system. Preserve hospitals by eliminating limits on the length of hospital stays for people with SMI. Redefine HIPPA and other privacy acts so that parent-caregivers are members of the healthcare team. Invest in research and treatment for this population. Instead of treatment after violence to self or others, enable involuntary commitments to Assisted Outpatient Treatment. Involuntary treatment criteria include those who are gravely disabled (provide own basic needs); likely to deteriorate without treatment; lacks capacity (unable to understand the need for treatment); consider past history. Screen civilly committed patients and mentally ill prisoners who are about to be released since they are most at risk of violence when untreated. Train law enforcement. Create and expand mental health courts. Enact a “Guilty due to Mentally Ill” plea mandating long-term mental illness treatment in order to minimize risk of repeat offense due to mental illness, including time served in a hospital. Fund programs that have evidence that they work for this population including access to doctors, medications. Create supported housing and group homes. Establish intensive case management and assertive community teams. Open clubhouses.
For now, I urge families to develop safety plans. Purchase the soon to be released handbook by Nancy Pizzo Bucher (2018) called, “Defusing the mental health triangle: Safety procedures for families during crises at home.” Attend our free Replanting Lives support groups, visit our website regularly for strategies, and call or text us at 781.405.8376 with any question at any time. You will get a response within 24 hours usually sooner.
Tuesday, October 9, 2018
For every large pizza you order, share with your family and friends, we will be given a nice percentage of the cost! Help us support families uprooted by mental illness!
There will be FREE materials for you!
Let us know you are coming! Flatbreads Fundraiser GASF
A 50/50 raffle with tickets sold (until we are sold out!) at $10/ticket!
Drawing will be on the next day at the “Replanting Lives” support group at the Bedford COA at 7 pm!
We are looking forward to seeing you!
Our panel discussion on Aug 29, 2018 went off without a hitch! Oh, there were hundred degree temperatures outside. Inside, however, there was cool air and a panel discussion with very knowledgeable people. Visit our “Panel” page (https://growastrongfamily.org/panel-discussion/) to see and hear the conversation in its entirety. For now, enjoy the opening which features the founder of Grow A Strong Family succinctly detailing the many benefits to families that are offered by this organization!
|Free photo slideshow personalized with Smilebox|
Dog Days of Summer Supporting families 24/7. Find out what makes August so special!
A website by Dede Ranahan
Dede is asking for those of who have loved ones with serious mental illnesses to share our very personal stories on her site, Sooner Than Tomorrow (http://www.soonerthantomorrow.com/dede-ranahan-contact/) in order enable advocates to put names on numbers. As she says, “Serious mental illness is still not receiving the attention it deserves. Let’s put faces on the numbers. Thousand of suicides, incarcerations, homeless men and women, people without services, and families stressed beyond their endurance are difficult to visualize. But one story of real life struggle is moving and impossible to ignore. Please send me your story about mental illness in your family or your own mental illness. You can use your name or write anonymously.”
In my case, I came to the realization that although very much impacted by serious mental illness in many of my family members, I rarely talk about what it looks like and feels like – to me. It is, of course, the biggest motivator towards my founding, “Grow a Strong Family” and developing an organization FOR family members to receive the information and support so desperately needed. I realized that there is a healing power to sharing these deeply felt emotions and as is said in 12 step programs, a problem shared is a problem halved.
When I was 5, my family moved from a veteran’s development in Flushing NY to live in my grandparent’s two family house in Bayside. This was a big move from a relatively crowded neighborhood to a quiet suburban community. My grandfather was retired and became a founding member of AA in Queens NY. My grandma was manic-depressive and in and out of the hospital. The move meant that my mom would take care of us (2 little girls, 5 and 9) and her mother. It was the time when Lithium was first introduced and little known about it. The state hospitals were colonies where the very sick would live out their lives. In the middle, there were the occasional “regulars,” like my grandma, who would become too sick (manic and not sleep for a week before plummeting to suicide attempts and then immobility or stay in bed for weeks on end) and return home when stable only to return as another episode would strike. It became our job to monitor grandma, call mom, mom would have her hospitalized, and then grandpa would get her when she was ready to come home, Mom would visit; us kids rarely. Throughout this, we did not talk about grandma or the impact her serious mental illness was having on us.
Fast forward, I went to college to become a social worker. Although my education has since taken many turnings, the influence of the suffering of my grandmother and the family silence left a deep scar in my soul. I wanted better services. I really wanted more efficient communication and understanding for our family. I wanted solutions that would support the whole family.
I danced around my calling, even with education, professional training, community work, and a strong focus on family until my beloved daughter was diagnosed with a serious mental illness at age 25. In the interim, other family members have been diagnosed, treated, and nowhere had there been a conversation about symptoms, treatment, or the impact on the family unless brought up by me and even then, rarely.
My daughter and I were very close; she was a velcro child. She was sensitive, sweet, creative, bright, had a great sense of humor, and she knew that she was loved and supported no matter what. Ours was a bond I’d dreamed about since I was a child and wanted to be a mother! We had similar interests, played games together, went on trips, shared music, and enjoyed a convivial relationship. There were times, of course, when there were family issues, and our family addressed them openly and honestly. We knew how to ask for and receive help. For example, after graduating with her BA, it was hard for her to find work. We supported her need to be independent while managing depression by providing financial and emotional support. Even with all of that, serious mental illness has a way of distorting relationships, causing confusion, and can tear loved ones apart.
When she was first diagnosed, she relied on me in ways that had never been needed before. There was a plea to “help me understand.” “Come to my med appointment with me.” “Help me with graduate school.” “Help me with my assignments.” It was hard for both of us since we were assuming roles we were not comfortable with.
At the time, she had an awesome prescriber who was excellent at explaining the symptoms, the illness, how to manage it, and recommended several pathways to health. She had a strong support system and the odds looked good for recovering from this first manic episode with little negative consequence. However, she was also making medication decisions that prolonged her instability. During this period, she recognized that she needed more frequent therapy sessions and her current therapist was unavailable. She needed me to help her find a therapist, which I did, and I made sure to emphasize that the work needed to be around this diagnosis and how to manage it.
By the time she finally ended up on lithium, to which she responded, “Why did I wait so long????” the nature of her therapy work changed and focused on historical family issues. Why any therapist would do this kind of work with an unstable client is beyond me, however, that was what was going on. Since my daughter was getting more clear, and the focus was essentially rewriting the past while in this state, a rift was nurtured between us. It went from, “I need space,” to “I hate you! You have never kept me safe!” The “space” grew.
After 6 months, I started a campaign to reconnect by sending funny cards and postcards, cookies and other care packages. She would email me and tell me to stop after about 4 months. She said, “I hate your attempts to buy me off. Don’t waste my time. I just throw everything away.” So, I stopped. At another point, my husband, her dad, was in the hospital and I texted her and her response was, “I don’t care.” A year later, her uncle died and I emailed her to let her know. Her response, “Send my condolences. I really don’t care.” In spite of all of this, I held onto the hope that she would stabilize and return. Her responses were very hurtful. I found myself alternating between extreme anger to deep hurt to overwhelming compassion because I knew that as much as I missed her, she had to miss me even more; I was the “always there” person for her and her illness pushed me away.
After a couple of years of silence, and then her defaulting on the graduate loans I co-signed on her behalf, I tried to call her to see about resolving this loan issue. With no response, I decided to send her the things that I held in storage for her. I did not want her to lose her childhood mementos just because I sent them. So, I used the name and address of someone she was in contact with as the “return address.” Oh, my! It caused such a ruckus. She took a restraining order out on me and dragged me to court to defend my self! That is also when I found out that she had changed her name! When I fist received the restraining order, I said to the officer, “It is very easy to stay away from someone you don’t know!” Alas. So, I brought a lawyer and we went to court and of course the order was vacated since there was no threat involved (except between her ears). As we left, my attorney said, “Stay away. No more contact. She’s not safe for you.” And I have. It has been another 2 years since that incident and there has been no contact.
I think about her everyday as I accept that for her, this is what her illness looks like. She has no family support. She has no ties to her own foundation. She has behaved unconscionably towards me. The illness has had her morph into a person I have no connection with, with a moral center that I do not recognize, and a way of being in the world that is anathema to me. And yet, I miss the daughter I knew and loved. I grieve for her everyday. And this is the way that it has been for me, with her. I want her to find her way back to me. I do not know where she is, what she is doing, or how she is doing. I don’t focus on it.
On the other hand, since I still have so much work to do, I am the primary support and case manager for another family member with serious mental illness. It is an uphill battle, and every day is a gift. Nonetheless, the work itself is made that much more difficult by models of care that do not acknowledge serious mental illness and the many needs it brings to the forefront due to lack of insight, resources, and ability.
I founded my organization because I needed to understand what was not being made clear to me as a family member. With so much focus on the identified client, the system she comes from is ignored. Can’t do that. The outcomes are much better for all when there can be open communication, factual education, and an understanding of how to manage illness effectively.
There is a shift going on in the delivery of services for adults (age 19+) in our state, Massachusetts. In addition to being more clinically focused with evidence-based programs, there is a bona fide “family focus approach and emphasize role of peer support.”
The new model intends to promote (my comments in italics):
The video below explains how the reforms were identified and the shift to this model which promises to be more effective than the previous community based model. Let’s hope so, anyway.