Dear Supporters, There have been a lot of questions about how we arrived at the percentage of 4% to define the population we are discussing in our open letter to NAMI. The number is based on the definition of serious mental illness provided by the National Institute of Mental Health, https://www.nimh.nih.gov/health/statistics/prevalence/serious-mental-illness-smi-among-us-adults.shtml . Since we started the petition there has been discussion about whether or not we should identify ourselves by such a small percentage. When the families of the 4% convened in Washington DC in May 2015 to tell our stories on Capitol Hill, we were told that politicians don’t like to focus on such small numbers and that identifying ourselves this way was not a good strategy. So, we created the video called “The Voices of 10 Million” which is posted here on the petition in order to make our families seem bigger. Pete Earley reported that NAMI considers us a “vocal minority.” To some of the families of the 4%, this stung and implied that we don’t count. In an attempt to quantify and qualify how big our "vocal minority" is, I asked Deborah Fabos to let me share a blog she wrote 3 years ago that described her "family's number." I also asked her to write an update. Deborah Fabos is an amazing advocate, family member and founder of a Facebook group called Circle of Comfort and Assistance (CCA.) Here is the link to her blog: http://familyfabos.blogspot.com/2013/12/what-are-your-familys-numbers.htmlshe While we are often dismissed as the "vocal minority" we do count and we really are a much bigger number. Please comment, share, tweet and continue #ShatteringSilence with us. Best, Teresa WHAT ARE YOUR FAMILY'S NUMBERS? My son suffers from bio neurological brain disorders. Without the right treatment and support that he needs, his medical condition prevents him from realizing that he has a serious illness. The untreated symptoms of his brain disorders controlled his thoughts and his actions. His untreated symptoms also controlled our lives. My son has schizophrenia, anosognosia (in laymen’s terms "lack of insight" or "lack of awareness" that he is ill), a history of Capgras Syndrome, a history of command hallucinations, and PTSD. So what does all this translate into? A preventable tragedy that was almost impossible preventing. What are our numbers? 1:6. That’s our family’s conservative ratio. Now what does this ratio mean? It means that my son represents the one (1) who is suffering from his illnesses. The six (6) are the other people in our family who are directly connected to him. Our lives have been significantly affected by his untreated or treatment resistant medical illness through the constant emotional stress of the daily trauma and drama of the severe symptoms including psychosis and crisis evaluation teams. Having situational mental illness like depression or PTSD due to the overwhelming hopelessness and isolation of caring for someone with such a severe brain disorder when they are not being properly treated and their symptoms are not under control. The loss of wages from jobs we have had to give up or lost due to having to care for our loved one. Having to follow one crisis after another perhaps having to move from one place to another due to stigma. Missed chances of advancement at work or taking lower paying positions in order to be available to the needs of our loved one. The overwhelming family stress can lead to divorce and further financial and mental decline of the entire family. It means that my son’s illness affects more than just him. It also, greatly impacted his school system, our local sheriff’s department, the juvenile courts, our relatives who helped to provide financial aid to get him on the ‘fast track’ to treatment and the needed legal procedures we had to secure. His illness dictated his and our lives. How we spent our time, our money, and our emotional resources. There was nothing left over f or our needs. We were all consumed trying to save him! But we are among the lucky ones. In spite of the odds against us, our family stuck together and did what we needed to do to secure his compliance to the right treatment for him. What was the cost for his intervention and treatment? Here is a start at some of our other numbers: • Lost wages: I quit my job at DreamWorks and later at Disney on a union job that paid me $70,000 a year with full benefits. I was the only one who could care for my son. Mental Health: I didn’t have any. I lived in constant high stress of being attacked and threatened by my son along with the stress from the fear of losing him. The stress of not being able to find timely treatment for him. I paid not only with money, but also with my mental and physical health. • Probate Conservatorship: $6,000. One month in a dual-diagnosis facility before his SSI started up: $6,000. Qualified therapist who didn’t take insurance: $160.00 per hour once a week. Equine therapy, which worked the best from all the therapies we tried: $160.00 per session per week. ‘ • Fast Track’, by passing waiting list for medical recipients‎ and getting into an outpatient treatment facility that held the most promising form of treatment for him and they didn’t accept our insurance: $250.00 per appointment for two years until they finally accepted his Medical. • Blood monitor company: $150.00 per month. We’re going on our seventh year now. • Licensed nutritionist: $120.00 per visit. • Independent blood test for mercury and other toxins: $180.00. The list just goes on and on. He was in therapy since he was in second grade to work with the behavior we were trying to deal with daily. We spent and lost thousands of dollars. We have little retirement saved and my husband and I are 57. It was worth every penny and every sacrifice. When we look and enjoy our son today, there is no price we can put on his life or on how close we all are now. The problem is, why should we have to pay such a high price for medical treatment for our son? What about the families who do not have the resources we did to secure early intervention and his compliance to treatment? What happens to them? What are their numbers? How much worth can you give to a life? What if my son decides to be noncompliant in the future? What would our fate be then? All this effected and still concerns my whole family. My son’s illness isn’t just his illness. It’s a 1:6 ratio in our family. I’m not counting my brother’s suicide at 15 or my mother’s issues and how they impacted me and my family. What are your numbers? There are no statistics that include our numbers in their studies. We are the ones they don’t know about. They don’t talk about. We are more invisible than the ones we advocate for. It’s up to us to unify and speak out in one voice for what we need and for our rights to be able to get the needed treatment for our loved ones medical condition. It’s their illness but it affects us all. What’s a Mother/Caregiver to do? I wrote the blog, ‘What’s Your Family’s Numbers?’ http://familyfabos.blogspot.com/2013/12/what-are-your-familys-numbers.html, over three years ago. My son (now 33 with a diagnosis of schizophrenia with severe symptoms from Dr. Marder at UCLA Schizophrenia Clinic on clozapine) is still enjoying a lasting remission from his severe symptoms. It’s been over 11 years now without psychosis and approaching 15 years since he had to be hospitalized. We are ever grateful!!!! Me? Well, I am still paying the bill emotionally and physically. Gratefully so, but the cost has been and continues to be too great for my mind and my body to sustain. Additionally, in the past four years, my adult daughter (age 37) has been given the diagnosis of anxiety, depression and it starting leaning toward schizophrenia when she stopped seeing her therapist and possibly her psychiatrist. She lies to me, so I have no way of confirming that she continued to take her meds and continued to see her therapist. Her symptoms tell me otherwise. About four years ago, she had a psychiatric break. One day, instead of working through difficulties, she left her full time job of 10 years, and never went back. She hasn’t been able to work since. Three years ago, almost four, she and her family moved into our home because the loss of her income was crippling, as she was the main breadwinner. Last year, I had her hospitalized due to psychosis and acute paranoia from what was discovered to be dangerously low potassium levels. Today, my daughter is in the hospital and will remain there for at least a week due to acute alcohol cirrhosis of the liver from a long-standing and hidden addiction to drinking. Her paranoia was in control of her thoughts and actions. She and her husband had the delusion that I was plotting to control not only her life but her son’s as well and eventually take him from them. It was only in the past two days that she started seeking my comfort and advice due to her dire circumstances but this could be only a temporary reprieve from her symptoms. Only time will tell. Her son, nine years old, has been diagnosed with ADHD. The same diagnosis my son had at this age. This is my fault, too. Even though her husband has the long-standing diagnosis of ADHD as well. Our family’s ratio of 1:6 is quickly tipping! Today, our ratio has increased to 5:11. Five who suffer and live with a brain illness to eleven whose lives are directly impacted by what these illnesses bring with them. I’m now among the 5. As caregiver to my son, my grandson and then for a time my daughter, I did not have the support I needed to do what I needed to do without being stressed out emotionally, financially and socially. My diagnosis is clinical depression. Back to my daughter.... after being admitted into the hospital immediately after being seen, she had 6 1/2 litters of fluid pumped from her stomach. We are told she is also suffering from acute anemia and has received two bags of blood so far. They may give her another one today. She is receiving Vitamin K injections along with other supplements. She looked to be 6-7 months pregnant for at least the past three months. The one question that we all keep asking, including hospital staff, is, “Why did she and her husband wait so long before seeking medical attention?” So many of us pleaded for her to see a doctor! To me, the answer is clear. We cannot expect those who are unable to have a rational thought to behave or think in rational ways. So, I ask this question, ‘What is a mother/caregiver to do?” Watch from the sidelines while they die a certain but slow death? Or sacrifice our all? I can tell you with deep conviction, that prayers and good wishes alone won’t change anything enough to make a lasting difference. Action is required. Swift and carefully calculated action. Until we can change the current HIPPA laws that prevent caregivers from organizing interventions and access to treatment on behalf of their loved ones, outcomes will not change. Until caregivers can have the right support we required from medical and behavioral professionals for our loved ones and ourselves, outcomes will not change. Until psychotic disorders are classified under neurology, so that a person will have access to treatment based on lack of capacity to understand informed consent, outcomes will not change. Until a neuropsychiatric diagnosis is approached with standardized medical procedures, outcomes will not change. Until the rights of caregivers are recognized and upheld, this will not change. While there are cases of adverse environmental circumstances in the home that could exacerbate symptoms, these circumstances do not cause the brain illness itself. The concept of the ‘Frozen Mother” needs to be buried with other outdated and harmful attitudes, or outcomes will not change. I reflect often about how there is much discussion and debate over the civil rights of our loved ones when it comes to ‘forced’ treatment. Yet, there is almost no discussion or debate about what is ‘forced’ onto caregivers. Are we without rights? Are we to remain complacent about the dire circumstances we find ourselves in because our loved ones are too ill to be able to determine the severity of their illness? Surely, this cannot stand this way much longer! Outcomes MUST CHANGE!!!! Today, our family’s ratio has increased to 5:11. The price for time sensitive access to treatment and support for all of us is set at an impossible amount... and yet, what’s a mother/caregiver to do? So all of our ratios continue to rise.