A family friend stopped by unexpectedly and began to cry the moment she entered our house. She explained that her son had been diagnosed with a serious mental illness. 
She asked me for advice.
It’s easy for those of us who have been dealing with mental disorders for many years to forget how we felt the first time we learned that someone we loved had a brain disorder. But seeing my friend in distress instantly reminded me of how confused, angry and hopeless I had felt when Mike first became ill.
What advice could I share with her? What advice do I wish someone had given me?
The first suggestion that I offered was that she should not expect to solve her son’s mental problem overnight. Brain disorders are not like common colds. You can’t go to the doctor, take a pill, go to bed and wake up healed in three or four days. It takes time and patience to diagnose a brain disorder and develop a successful strategy on how best to manage the symptoms.
My second suggestion was that she needed to understand that her life and her son’s life had changed and things were never going to return to how they had been — which is what she kept saying that she wanted. I remember that Mike had said much the same thing after he became sick. “Dad, I just wish things would go back to like they were.” It would break my heart whenever he said this, and it took me time to understand that there “was no going back.” Ever.
Mike’s illness had changed both of us. The past was the past, and we both had to deal with the reality of his illness. Wishing otherwise was counterproductive and a waste of time.
My next piece of advice was difficult for her to hear. As a parent, you cannot fix what is happening. A parent can be supportive and, a parent can become an advocate (which is what everyone with a severe mental illness needs to survive.) But no matter how much you love your child and how willing you are to sacrifice for your child, you can’t control what is going to happen anymore than you can heal cancer.
Please do not misunderstand me. I have been through hell with my son and I would gladly go there again, and, I may, in fact, have too. But I also had to accept that Mike is his own person. I cannot control his life. And his illness is a relentless and a cruel adversary that can turn him against me in a heartbeat. As a loving father, I have to understand that I might have to endure having my son hate me, in order, for me to help him when he is psychotic, and even then, my efforts to help him might not be enough.
My fourth piece of advice was this: never give up. After four major breaks, Mike has been doing great for the past three years and, in many ways, his life is now better than how it was before he became ill. It is better, not because of his illness, but because of how he has grown, learned, and matured since becoming sick. Not everyone is as fortunate as Mike and, of course, I wish that Mike had never gotten ill.
But the point here is that he has found a way to control the symptoms of his disorder and he has found a way to live a blessed life despite his illness.
This is why I believe in recovery. I have seen my own son recover. Sadly, not everyone will recover but many, many, many persons with mental disorders do and can get better. This is why it is important to never give up hope. Never stop advocating for your son, I told her. And always remember that your son needs your support and understanding even when his disorder has tricked him into believing that there is nothing wrong with him and that you are the enemy.
My friend asked about helpful books so I recommended that she read “I’m not sick, I don’t need your help” by my friend, Dr. Xavier Amador. It offers practical advice about how to deal with someone who is psychotic but doesn’t think there is anything wrong.
I also suggested that she read a book that explains what it is like when you have a brain disorder. Two of the best are Dr. Kay Redfield Jamison’s An Unquiet Mind and The Center Cannot Hold by Elyn R. Saks.
I suggested that she join either a National Alliance on Mental Illness or Mental Health America support group. I am a lifetime member of NAMI and I always urge other parents to join because its members are a wonderful resource. I explained that she was not the first mother to have a son with a mental illness and other parents could advise her on how they handled problems with their own children. NAMI’s Family to Family course also teaches parents to discern between enabling and helping a child.
I told her that she needed to be prepared for the worst too.
She needed to find out about our community mental health treatment center. Where is it located and what services does it provide? Does it have a mobile crisis response team that she can call if her son becomes threatening? Is there a safe house were her son can go if he needs a quiet place to spend the night under supervision?
I told her that she needed to familiarize herself with Crisis Intervention Teams (CIT) so that if she needed to call the police, she could ask for a CIT trained officer. I also warned her that calling the police can create a dangerous situation that can quickly escalate into criminal charges being filed against her son or worse. Getting the police involved sometimes is necessary, but should never be the first step.
I suggested that she visit the Treatment Advocacy Center’s webpage because it has a state-by-state breakdown of involuntary commitment criteria. This warning terrified her, of course, because she said she wanted to help her son get treatment, not get him involuntarily committed. I explained to her that oftentimes persons who become sick do not realize that they are ill.
During the next half hour, I tried to familiarize her with the involuntary commitment process and the legal rights that a person who is ill has, if he/she wishes to be “crazy.” I spoke about Peer to Peer support, jail diversion, and mental health courts.
In my desire to help, I was overwhelming her with information and much of what I was saying was frightening her.
We ended our chat with me giving her the name of several therapists and psychiatrists.
She gave me a hug and seemed grateful, but our discussion left me feeling dissatisfied. Surely there was something more that I could have said — some wisdom that I sould have passed along.
So I would like to hear from readers of this blog what advice you offer when someone asks for help? I’d especially like to know what helped you or what you wish someone would have told you when either you or someone you love got sick.
Please help someone by speaking up. Thank you!
About the author:
How things are handled in the beginning can make such a difference. I have to say that I was so lucky to find people to help me when my son was first diagnosed. In October it will be two years since we started to see a problem and in January two years since we heard schizophrenia associated with him for the first time. After four breaks and hospitalizations and at least two suicide attempts in the first year I am grateful to say that he is med compliant and in a stable situation right now. Like you I know that can change at anytime but I try not to worry about that and take a “one day at a time” approach to life.
I do remember that I was devastated and could barely function, at one point I not only wanted to die but thought it would be better if I could gently take my son with me into oblivion so he would not need to suffer. I couldn’t stand to watch what was happening to him. I told a friend how I was feeling and she introduced me to someone who was her acquaintance, also with a son with schizophrenia. She had been dealing with it for twenty some years and her son was very sick. They did not have the treatments for him like they do now. She told me it was all going to be okay and she would help me through it. She didn’t overwhelmed me but let me ask questions and let me cry, mostly she told me that there would be good days and bad days but even with how sick her son was they had happy times and most importantly it wasn’t always going to be the way it was “now”. She also assured me that with better treatments there was a much better outlook.
I was already seeing a therapist because I was having some depression, she was wonderful in explaining the actual medical issues to me and when he was hospitalized she sorted out some of the information and explained why things were happening. So valuable to me. I recommend to anyone who is dealing with a loved one, with any kind of chronic illness, to begin therapy. I also saw my Dr. and requested an antidepressant. Both of these things helped me to settle down enough to take advice.
I also read The Unquiet Mind and The Center Cannot Hold, both great books. Through the course of the last year or so, as I become more accepting, I have read other books that may not be for the newly diagnosed. Crazy was also recommended and I have the book but someone else mentioned that it would scare and upset me (in the beginning) so it is next on my reading list. I truly believe that educating me is important, because I can then educate my son.
Another thing I think is so important is letting our loved one know we love them no matter what and accept their illness. When my son felt he had to hide his symptoms from me it only made things worse. As he continues to get better I am never embarrassed if he laughs or talks to himself in public, I don’t push him to explain to me what is going on with him, but I do make myself available to him if he needs me. When he was in the hospital I would walk the hall, that was what he did most of his day, and when I visited we just walked and walked. I think he appreciated that.
The social workers at the hospital, where he was inpatient for so long, have asked me to communicate with other families who are going through these experiences. I tell them what I heard, things will get better and it won’t always be the way it is today. Family support and acceptance is a crucial part of recovery and treatment. My research shows that those individuals who have this support go on to have much better recovery and success at long term stability. So I generally tell people – have your freak out, but then pull together to get well. It’s not easy and it isn’t quick so patience, hope and faith are all important to hang onto.
Marcie
Call your local NAMI (National Alliance for the Mentally Ill) and get to a Care Giver's Support Group meeting as soon as one is offered. If you have to travel an hour, travel an hour.
By the time you've gotten a diagnosis for your loved one, your life's landscape already is filled with debris. Broken dreams, bank accounts, expectations, relationships are frayed, strained; you are so confused, feel helpless, angry, horrified of what the future will hold. By getting to a support group meeting, you will at least learn you are not ALONE. And that, Dorothy, is the first step in “finding home again”.
While you are at a NAMI Care Giver's Support Group meeting, ask about the next available 12 week, completely free, one night a week, 3 to 3 1/2 hours of class called “Family to Family”. Here, you will not only bond with other care givers of loved ones with mental illness, you will learn mental health vocabulary, what areas of the brain have been effected by the illness, communication skills to use with doctors, hospitals, and your loved one. You will role play, you will map out solutions to problems that are SO unique to your new world, that without learning these skills you'd be Christopher Columbus truly falling off the side of the earth.
WHILE you are learning these new skills, WHILE you are forming new relationships with other caregivers, l o w e r your past expectations of your loved one.
This is all going to take time. Breath. With knowledge and the resources NAMI has to give you, you will navigate, you will begin to see your “new normal”. You will become less passionately fearful. (A year from now, you will understand that sentence completely.)
Consider attending AlAnon meetings. You don't have to say a thing in the meeting. Your loved one may or may not be a dual diagnosed individual (meaning: substance abuse and mental illness). What you will learn at AlAnon is how to “let go” of what you can not change. How to rebuild your self esteem, your courage, your life.
NAMI. Find yours. http://www.nami.org
Wow, I am learning a lot from the comments that I am reading here. The most important is that I AM NOT ALONE!
Thank you. I thought my feelings and fears were mine alone.
Sometimes the person seeking help is the “well sibling” instead of the parent. For siblings issues are similar – yet different.
For years I tried to get my mother involved in NAMI and she resisted. She said It was too hard for her to hear – so that left me to be the one to find information and resources – 30 years later, and long after both my parents have died, I am still the one trying to help and find resources.
Advice?
I agree with AliceM – Knowing you are not alone is so powerful. Connecting with others in similar situations is empowering.
Reading – becoming knowledgeable is so important.
For siblings – Read My Sister's Keeper by Margaret Moorman.
Pete — My mother has schizophrenia. I wish you would write about what it is like to have a father or mother with a mental illness. There are many of us out there who have been through hell because of our parents. I'd like to hear from others like me. How have they handled trying to live a normal life with a parent who is anything but normal?
Connecting with other parents who have 'been there, done that' was immensely helpful for me. I was so overwhelmed and terrified when my 9 year old daughter was diagnosed with bipolar disorder. I was relieved to finally have a diagnosis so that we could start moving forward on helping her to stabilize but I didn't know where to begin. My online support group friends literally took me by the hand and walked me through the medication trials, the IEP process (special education services) and most of all my feelings of being all alone. I learned that I wasn't the only one going through what felt like hell.
Educating myself and my family was critical as well. Knowledge is Necessity is the name of the blog written by a good friend, John McManamy, and he is absolutely right. In order to advocate for my child and to be able to make informed decisions about her care and treatment, I had to learn as much or more than her clinicians.
Lastly, taking care of myself had to be put near the top of my priority list, not shoved to the bottom. The same held true for nurturing my marriage. Relationships take a beating when a family is in crisis mode or caring for a chronic illness. We can't help our kids if we are falling apart at the seams.
Thankfully, although we have been through a roller coaster ride, my daughter now at 17 has learned a great deal about her illness, how to manage it (rather than letting it manage her) and has become an advocate for herself and for others with brain disorders. The road ahead may be rocky, but I am confident that we will get through whatever lies ahead.
I have been the person who has sought help for someone else (my mother who has Bipolar Disorder), and a person who has desperately needed assistance herself (for Schizoaffective Disorder, first diagnosed as Paranoid Schizophrenia). Speaking from the point of view of the person with the diagnosis, I think it's crucial that family members do not desert the ill person, do not decide that it is too much to deal with and they need to simply cut her out of their lives. I've had people do that to me, and it was very painful and not exactly helpful. On the other hand, my mom did everything she could to help with the limited information she had. I think the best thing that ever happened to me, and the thing that saved my life (which I talk about when I speak to police officers in Pinellas County Florida's C.I.T. trainings) is my forced five-month hospitalization after numerous serious suicide attempts and many short-term, useless hospitalizations. Then I was put into a housing program run by a community mental health agency, which was also helpful even though I did not think so at the time, and I did not enjoy the experience. I needed these things to help me get back into a mode where I could live on my own again. My family wasn't the kind of family I could live with. It would have been helpful if they had been more educated about the illness. My mom isn't educated about it even now. She doesn't go to NAMI meetings, though I do myself. Those meetings have helped me. They would help her too if she was interested. They would also have educated my dad, if he cared enough to want to know what was going on with me, but he doesn't. I recommend NAMI, and books such as The Quiet Room, Elyn Saks The Center Does Not Hold, Pete's book Crazy, Kay Redfield Jamison's books, and others. NAMI Consumer support groups can help your family member who is ill, as can the NAMI consumer councils that exist in many cities around the United States in which consumers such as myself do advocacy work for those of us with mental illness. NAMI chapters also frequently have educational meetings that are very useful. There is also the DBSA (depression and bipolar support association), and since some people have dual diagnosis, in those cases Al-Anon family support groups may be useful for the family members and AA/NA for the person with the addiction. I've gone to Alanon because I have many alcoholic family members, and those groups teach you some useful things. I think that the most important thing you can do to help someone with a severe mental illness is to let them know they are not in it alone. To visit them in the hospital, or send letters, cards. To call them on the phone. To simply ask them how they're doing. You may also be able to help them a great deal acting as an advocate, especially if you can help them get into a community mental health center where they can get treatment or get an appointment with a good therapist or psychiatrist. You can't cure the illness. You can't fix the situations that will result from the illness. You didn't create the illness. But you can help. Just be there and tell the person you love them and that no matter what happens you will not run away and ignore them or write them off as your disappointing crazy family member.
Jennifer – Thank you for your comments and suggestions. I would like to learn more about the housing program run by the community mental health agency. You mentioned FL – and that is where my sister is now (an ALF in WPalm Beach). My email is MargaritaMBianco@gmail.com
Although my sister has been there only a week – and I think it has the capacity to meet her needs (if she avails herself of what they have to offer), I am having a real challenge finding affordable alternatives. I am currently having to pay several hundred dollars out of pocket to offset her SSDI amount for rent alone – PLUS contribute several hundred dollars for her to have spending money…. I am going broke and trying to find affordable ways to help. Any suggestions greatly appreciated!
I have a son accused of vehicular homicide because he drove his car through a red light and hit a person crossing the street. He was delusional at the time. Any advice on how we can get a judge or jury to understand his mental illness?
Sally, Contact your nearest NAMI office. Ours, in Greenville, SC, will accompany consumers to court. And/or, call your police department, and ask to speak to or go see a CIT officer. Pete speaks of CIT officers in the above blog. Perhaps the “Crisis Intervention Team” Officer can get you in touch with someone who can help, since this a situation involving a person with a mental illness. God bless. Lynda
I feel I have been on both sides; both very sick and very healthy. I feel it is very, very important for people who have a loved one who is mentally ill understand the big picture. We tend to care only about our “own world” and not the world at large. How many would like to go back to how things were before their loved ones were ill and just never look back. That is selfish and will never resolve things. If your loved one suffers from a mental illness, you know what it is like. When your loved one didn't suffer, you didn't really care, not really. If your loved one no longer sufferered, eventually you would return to not caring. You would not have learned anything if that were the case. I sufferred so badly in a way that very few understand. I lived in the Hell of Hell's. We all suffer, some suffer in a way that takes them to the end of suffering, where those who go any farther are dead by suicide. What I learned is that as long as one person suffered in this world, my work would never end. I can be happy but only knowing that I will never forget others that occupy the Hell I was in and that someday I will help them out of it. Don't ever think your work has ended. The job is huge but that does not matter. The very tiniest improvement will eventually win the day as long as we refuse to give up. Don't ever give up on your loved ones that suffer or any others that suffer in the same way. Peace to all of you.
My son had a psychotic break about 5 weeks ago. I am used to solving problems – and it is so difficult to understand that he has to be the one to recognize the problem and want the help. I am so, so sad that his life has taken this turn. He is 24 and should be having fun and preparing for a great life – instead he is concerned about the Matrix, Sacred Geometry, The Truman Show and Black Holes. He tells me he is not crazy – he is the only one who understands what reality really is – he doesn't need to sleep because he is pure energy. i am trying – it is so hard – where can I find the strength to keep going? How can I help my son find the strength to know his reality?
I am so sorry you and your son are going through this – It is SO VERY HARD. Can you get to a NAMI group – or call your local NAMI family?
I wish someone had told me it was okay to grieve. I was grieving, but felt it was on some level disloyal. In some respects I still grieve, I probably always will in little ways. I will never have the life I dreamed of for my family. My son will never be “normal” in the sense of white picket fences and apple pie. What my son will be is spectacular. He will think in new ways and he will develop amazing talents. The road is and will continue to be bumpy. I wish someone had told me from the very beginning I was not alone. I wish someone had told me upfront that family doesn't always understand. I wish someone told me I would have to find a new and deeper way to love. Loving someone who hates you is hard. Loving a child who hates you is worse. I wish someone had put their arms around me and told me I would survive. I wish someone would have told me I would make it through. Then I wish they would have told me how to get a break and recharge. Mental Illness requires a change in perspective. Instead of hoping for “A's” I hope he won't throw a desk at a teacher. Instead of getting the lead in the school play, I hope he can stand still in the choir. I wish someone would have told me how excited I would be at little victories and how much I would need the support of others. If I could ask for one thing other than an instant cure, I would ask for a clear vision of the future and where we are going. I wish someone would have told me how hard it would be to see in front of the here and now.
I then I wish someone would have held me while I cried.
I wish I had encountered people who both knew the truth about life and had taught that truth to me. Instead I, along with most others, was taught a version of life which took me further from the truth. A fairy tale. Because fairy tales are not true, when you are hit with the reality of what life really is all about, you feel both devestated and defeated. Remember however the old addage that “the truth will set you free”. Because we are not taught the truth about life when we are young, when we first encounter it it often comes as a disturbing shock, one in which we do not think we will recover from. If you can hang in there eventually the truth will set you free. Some things to learn: we all suffer in life in someway. We develop compassion for others as we learn that as we suffer, so too do others. No one escapes the reality of hardships in this life. We all suffer from the loss of loved ones to disease, poor health and ultimately death. There is no escaping this. The truth of life is that there is good, bad, ugly and ultimately happiness. Do not envy others for what they have, they too will not escape suffering. Someone may envy you from a distance, as you may envy them from a distance, but you know the truth of your situation and they of theirs and ultimately that truth is that we all suffer in some way, we all have a path out of that suffering, and if we persist on the path out of suffering we will eventually return to real happiness, a happiness that involves love and compassion for one's self and all others. John Lennon wrote that “all you need is love” and in the beginning, middle and end this is the ultimate truth that will reveal itself to you. So it is with true love that I hope you will embrace what life teaches you and that love will be with you always.
Beautiful sentiments, beautifully expressed. I cried when I read them.
I wish someone had suggested that I contact a lawyer since my daughter was neglected and denied treatment repeatedly because she lacked insight of her illness and stopped taking medications that helped reduce her psychotic symptoms whenever she was released from her much-too-short hospital stays. I wonder if possibly the hospital administrators, psychiatrists, social workers, mental health providers, county delegates making the decisions on whether or not my daughter fit the “clear and present danger to self or others” criteria required for admission into a hospital, and others who made decisions about her treatment would have acted more promptly if they might be faced with a law suit for negligence. Of course, those responsible for providing treatment are protected by our laws that usually require some proof of dangerousness or violence, but I would like to think that the people who have chosen to work with those with severe mental illnesses would want to do what is medically and ethically correct and not allow a person to suffer needlessly when medications have proven to be effective. To me that is negligence, pure and simple, and maybe if families start contacting lawyers for this neglect we will see our laws change and sustained inpatient and outpatient treatment the norm. Until then, families will only be able to grieve and join support groups, which certainly can be helpful to ease some of the pain of watching a loved-one with untreated mental illness. However, when effective treatments are available, why shouldn't families be pro-active and demand that those charged to care for our loved ones with severe mental illnesses do their jobs and provide the services and treatments that will make a difference. Then we won't need to only grieve and look for support, we can exchange ideas on which treatments are the best and how to find supportive employment and decent housing because once an individual is receiving proper treatment, their whole world opens and they are able to move forward with their lives. It is a shame to think that one would have to use a lawyer to get the attention of those in charge, but to sit by and watch our loved ones who lack insight to seek treatment lose any possibility of a regular life makes no sense to me at all! It is time for a wake-up call to change outdated treatment laws and require effective treatment for all who have a severe mental illness. Hopefully, those who are in the mental health fields will join the advocacy efforts of those who are working to change laws that prevent timely, effective treatment to be provided. Once individuals with severe mental illness are receiving adequate, sustained treatment, watch how stigma will disappear because the public will not be exposed as often to stories about individuals with untreated mental illness who are homeless or committing crimes or, more often, being victimized. And so, I would encourage everyone to not just accept untreated mental illness but work to change what is wrong with our current mental health system including our laws and services provided.
I'm the aunt of a mentally 38 year old nephew. My brother, his father, attempted suicide 2 1/2 years ago and now is in physical pain every waking moment as a result of the injury he sustained from this attempt. He does see a pain specialist but nothing completely alleviates his pain. He made this attempt after approximately twenty years of dealing with his son's condition. He thought he couldn't handle it anymore.
I have a totally disabled husband who is bedridden but I am trying to help in ways that I can. My nephew is in a state mental facility about two hours away from where I live. I speak with him on the phone frequently and I try to visit once a month. A home care worker has to be hired while I am away from my husband. My brother is a now a broken man and can't handle the situation as well as he once did. So, I do what I can.
Now to the point, I wonder if my nephew is getting the right treatment.
He has been there 1 1/2 years where he got better but a few weeks before sending him to a group home he got worse again. They said that his blood platelets dropped and they had to reduce his meds. Does anyone else have any experience with the blood platelets dropping? I find myself wishing that those platelets would hurry up and get back to normal. I wonder also if there are other effective meds that could be used even with the lower platelet level. Does anyone know?
Hi Advocate4change,,,wow can I understand what you are feeling! My son is 33 and bi-polar, he self medicates with alcohol. The past three years have been a nightmare.
When he has an “episode” and starts seeing and hearing things he usually ends up in the emergency room. I have been there with him when he was suicidal, delusional, raging, and crying out for help! Did he get it? NO I was usually told to take him home and he'd feel better in the morning. I usually feel as though they do not want to deal with the likes of these???
Lets face it without great insurance, he's not going to be able to get dual diagnosis in a good facility. He has been sent to a state hospital Morris Village in Columbia for addiction, which was a complete waste of time.
One visit that totally blew my mind in the er was a night that he was suicidal and begging to be sent somewhere for help. I also feared that he was a danger to others. What happened? They said that he was just too agitated to be evaluated so they sent him to jail? What would have been wrong with sedating him and evaluating him in the morning?
He is now in the detention center (which I read on the internet has a very low grade) due to back child support, he has been deeply depressed and could not leave the house. He has been going to mental health, but the wait for appointments is long.
His first night in the detention center he was attacked in his sleep by an inmate who had scuffled with him earlier by trying to take his meal? I guess the inmate was mad for being written up, so he waited until night, woke my son up and beat the hell out of him. Broken tooth, black and blue face, stitches, etc.
I went to see him yesterday. He is lost and it broke my heart. He needs a hospital, not jail again. I'm tired and feel hopeless.
I could handle the jail time, if he had committed a crime,,,what I cannot handle is knowing he is sick and will be thrown into solitary confinement any moment.
Sad and brokenhearted mom in Greenville, SC
Could not agree w/you more…..do not understand after years of “services” for our loved one…..the mental health system of our state -Michigan- has turned away from the SMI who lack insight to their illness….have proof of injustice within the CMH, DCH, RR's, Governor and on and on…… no one will step up and be accountable to the SMI who are unable to have insight to their brain disorder…..I have strongly noted over the years the need for assistance from organizations such as NAMI, TAC….in assisting families to make changes for our loved ones…..sorry to say it has fallen on deaf ears w/these organizations…..a class action suit by the families is the only answer we can see in bringing change for our loved ones experiencing SMI w/lack of insight (anosognosia)…. I know so many in NAMI have what I call “NAMI hearts” and truly mean well and do so many wonderful things for those who will accept help…..but for those w/lack of insight…..WHERE IS THE HELP?????…..it's been our experience if our son did not have his parents he would be in jail/prison….rather than a state hospital……by the way a state hospital not in the state in which he was raised and lived…..be aware of hopping across state lines issue for gaining services when your own state shuts the door on your family member. Again, thank-you for your above comments….
I met you Pete many years ago. I purchased your book and listened to you speak. What I remember most was how kind you were. You spoke with so much love regarding your son, and when someone in the audience asked how he was doing, you dropped your chin a bit letting us know with few words.
As a woman with more than 10 family members with mental illness, father, mother, myself, 3 children, etc. I have believed for a long time that there is more silence than advocacy amongst those of us who are consumers. And since writing a book which I spoke to you about, and bringing my voice out, I feel less uncomfortable and more empowered. As I tell my audience, we've done nothing wrong. It is not our fault. It is a chronic, persistent, severe illness. I want to thank you for all of your advocacy. Your book detailing some of the criminal justice issues was heartbreaking and infuriating at the same time. FYI – My book is titled “Lies In Silence”, and it is about multi-generational mental illness. I wish you well in your continued journey of advocacy. – SJ Hart
In thinking about this question that you pose about what I wished someone had told me, my answer is according to where we are in the timeline. I wish the false hope had not been so overwhelmingly present, leading me to believe that “this would pass”. Once we realized this was obviously not true with so much pain and suffering, we were more prepared for our next two children.
I wish someone would have had the ability to say not everyone makes it. That this is a marathon not a sprint. I wish someone had told us, when everyone (if) is in bed for the night, and there were no police in our home, no psychiatric crisis at the hospital, no drug overdoses, no 1000th medical provider suggesting they knew better about our family then we did, that if all of this did not occur then it was a day we got through without no one dying, and a day the illnesses “lie in silence”.
I wish people would have told us that our life would never be the same. Things like soccer, dance recitals and trips to the park would all be according to illness. our friends and family would fall away never offering dinner, a tissue, or any interest in trying to understand.
Though every one of our journey's is different we share grief and suffering along with our loved ones that is catastrophic and much too
complicated to explain. The last thing I would want to know is to create a
support net and a crying team. People who get it. People who are there 24/7, create strong advocacy in the schools, and never believe that this chornic illness or any is gone regardless of how long stability moves into your home. When the grief returns it hits much harder.
I could likely write a book about what I wish I had known. But the truth is I wish I did not have to know any of this. Mental illness as you know is in charge. It is aggressive, stigmatizing, and pervasive. My only hope at this point is that I someday see a paradigm shift so that we may address this with accuracy. – SJ Hart
What we need is more support groups.
You can find 10 AA (alcoholics anonymous) meetings in one day, try finding support groups for mental illness. Is not alcoholism a form of mental illness?
I think the worst thing about mental illness and the stigma is to call those afflicted “consumers”. Are we not people? Why do we need to hide behind a different word for our condition?
We also need to advocate for proper treatment and diagnosis. Psychotropic drugs are dangerous, addicting, and do not treat the problem, only the symptoms. Then there is the trial and error. Ever feel like a lab rat? Try finding a psychiatrist who will keep you as a patient if you reject medication. Try finding a behavior therapist. Try finding a doctor who will listen to your concerns without disregarding you as having delusions or paranoia after you tell them you have been diagnosed with a mental disorder.
What we need is each other. It is not always a family member who can help, sometimes it has to be the kindness of a stranger who will become your friend, forever.
God help us all!
(Diagnosed delusional because of religious preoccupation)
1ST STEP (MOST CRITICAL):
Contact your Crisis Intervention Team (CIT). Schizophrenia-like symptoms and psychosis hit my brother out of the blue when he was 38 years old. He had a normal, happy, successful lifestyle up until then and never exhibited any signs of the slightest hint of any form of mental illness; he had a great sense of humor and a ton of friends. We went from numbing shock & confusion to crisis to crisis to crisis with no breaks in between to catch our breath; (911 call to 911 call), etc., until we found the CIT which is run by the county we live in. This CIT is a lifeline for you and the mentally ill (MI) person.
2ND STEP:
Find THE BEST doctors/hospitals/social workers; we ran into ALOT of indifferent, incompetent psychiatrists and social workers–I could write a book about the catastrophic fumbles, mistakes, and indifference that happened with mediocre to shockingly incompetent doctors. God bless the good ones who are caring, competent, experienced and not burnt out. Sadly, it’s been our own personal experience that they are in the minority….
3RD STEP:
Medication is everything. It can make a difference between life and death. Med. adjustment is the trickiest and most riskiest part of treatment. Sometimes it’s simply hit or miss. Trial and re-trial. Sometimes it’s like a crap shoot or a roulette wheel. This is when your vigilance and gut instinct is critical and absolutely necessary. Speak up and out to the doctor if you have any doubts or concerns about med adjustment or if the MI person is not being compliant.
4TH STEP:
Read Dr. Xavier Amador’s book mentioned by Pete Early: it’s the best, more insightful book to understand what’s happening inside the minds of the mentally ill and what you need to do to help them… and we’ve been reading mental health books for 20 years. Read and web search every chance you get. Know about the privacy laws for adults with MI. Privacy laws can block you from knowing the status of the MI patient, but there are “loopholes” or “ways around” this type of roadblock.
5TH STEP: Get yourself help. When possible, detach from the situation by taking time for yourself: see a movie, take a walk along a beach, join friends for dinner…. do anything that will help you get respite from the situation. Join a support group but attend only if it helps (not depresses you even more). Allow others to help. Go to therapy yourself. Do not be ashamed or embarassed to tell your family, relatives, friends, etc. who are reliable, emotionally able to handle the situation or have to deal with the MI person. Talk to the doctor about this.
6th STEP:
Acceptance of the situation is a necessity; it is a survival tool for both you and the mentally ill person. The sooner you accept the situation, the faster and better you’ll be able to focus on making good decisions, strategy plans for both yourself and the MI person. Accept that sometimes there is only so much you can do. In our experience, this is by far the hardest thing we’ve had to accept. We humans all have our limits and emotional thresholds. Forgive yourself for being human. Remember that the MI person did not bring this on him or herself; they are not to blame for their illness. We remember this saying when we get mad at our brother: “There but for the grace of god go I…”
7TH STEP:
Always be prepared with phone numbers, contact names of doctors, ER hospital numbers, CIT numbers, emergency off hours numbers, police precinct phone numbers and chief/commanding officers names. Know which hospitals in your area have specialized psych wards and highly trained staff and which ones don’t.
8TH STEP:
Have a quick 30-second “current status/meds/history story” memorized so if police, doctors or others need to handle the MI person, they will know what they’re dealing with. Talk to the doctor about what to say, because in the chaos of a mental breakdown emergency, you might be too emotional or mentally scrambled to relay the critical info like meds, behavior, patterns, history, etc. about the MI person. We’ve had many experiences with police: there were petrified cops, confused cops, brave cops, understanding cops, shocked cops, angry cops, macho cops, compassionate cops, inexperienced cops. Our experience with police called in: they first and foremost want to know two things: are there any weapons available to the mentally ill person? Is he/she on illegal drugs, medications or alcohol or a combo of the three? We even considered stopping by the police precinct to “debrief” them and let them become familiar with our brother’s situation and profile so they would know how to handle him and become familiar with him. We never did get to do this.
9TH STEP: In our own experience, it helped us to think 10 steps ahead. Know that being prepared makes a HUGE difference in how things work out. But also remember that things may not go well even with the best of gameplans. Always expect the unexpected. Write out a checklist of things to be done and have a Plan A, B, C, D and E because psychiatrists change and leave for other jobs, medications get readjusted,sometimes with severe consequences, the pharmacy closes right when the meds run out, patients don’t follow doctor’s instructions and many patients will not understand and/or accept their diagnosis and the list goes on and on…
10TH STEP: Make use of your gut instincts; your intuition. Nobody knows the mentally ill person better than his/her family and friends. Know that a diagnosis can change; doctor’s opinions vary and often change. Sometimes it’s best to focus a little less on the diagnosis and more on the symptoms, patterns and meds that work and don’t work. The “diagnosis de jeur” may change month to month, year to year, and even the symptoms may change as well… but the reality of the symptoms will not.
11TH STEP:
Remember that your loved one, your family member has a part in them that you still love and will always love, no matter how angry and frustrated you may get at them. It may seem like the person you knew is gone and you’d do anything to have them back. Know that the person you knew is still inside that body. Remember the essence of that person and know what they would want for themselves if they could be in their “functioning” mind.
12TH STEP: Know that you are not alone and that we are here with you. We are parents, spouses, siblings, children, grandparents, aunts, uncles, nieces, nephews, step families, friends, coworkers. You will find freedom if you embrace the truth — (no matter how hard it may be to hear) — from those who have walked it before you: This road is long and difficult and there’s no turning back. We remember when we first heard these words and how angry we were at the person who said them to us….and how much we didn’t want to hear them. We remember the psychiatrist telling us that there will be other “breakdowns” and “setbacks” and how it felt like he just punched us in the guts. We remember how angry, afraid and alone we felt… like the world had just come to an end. But it didn’t. We survived. There will be a morning after… Our loved one survives and in turn, YOU WILL SURVIVE THIS. You may in turn even become a guiding light, a voice for others who will also have to walk this lonely path. We wish you and your loved one the best; we wish you luck, strength, hope, faith and courage. Our prayers are with you.
My greatest wish has been for guidance in dealing with nonrelatives, where you don’t have much leverage with the courts, etc. Before I married, I had a roommate who was very ill, refused treatment, and eventually suicided. In my last job, I had a boss who appears to have been bipolar self-medicating with alcohol … ended up getting fired because of her behavior in the middle of a pretty rampant mania. As helpless as I can feel sometimes in the face of my relative’s schizophrenia, it’s really nothing compared to how I feel facing the illness of someone that I have no legal power to get to the doctor.
MY ADVICE: *** MOST CRITICALLY IMPORTANT ADVICE (A): Health care privacy information release forms. When possible–(when your loved one is lucid and not sick and able to sign legal documents) — Try to get the following medical info privacy and directives release forms: Health care proxy forms; Advanced directives forms; HIPPA information release forms and clinic/hospital or doctor privacy information release forms; power of attorney for finances, real estate, etc. This was the biggest mistake we’ve made: not getting access to our loved one’s medical records and their case details. (B) Be hypervigilante about and read up on what negative and positive symptoms look like and if they start to show up DO NOT HESITATE to take immediate action steps: talk to their doctor, check to see if meds are being taken or thrown out, check with friends, co-workers, keep emergency phone contact numbers in your wallet, be respectful to doctors, therapists and clinic workers, but also be persistent as the squeeky wheel gets oiled because the clinics, hospitals, case workers, etc. are ALWAYS underfunded, overloaded, overworked and sometimes just plain burnt out. Remember that no doctor knows your loved one the way you intimately know your loved one, but the doctor might be hearing info from your loved one that they would never tell you about; be a team with your loved one’s doctor, therapist, etc. Trust your gut instincts as they’re usually more often right than wrong. Also, those who are ill have an uncanny ability to “fake” things: everything from taking their meds to “pretending” they’re OK or hiding” what they’re really thinking so do not blindly trust what they say; it may or may not be the truth. We were shocked and stunned by all the “faking” our loved one did as he was the most honest person in the world before his disease started, he never lied about anything to us before the illness started, then we were in shock about how much he was lied to us.
(1) Read books like “Crazy”; find websites; become knowledgeable, esp. about medications; be careful about generics-hear from alot of people about problems with generics; (2) Seek out the best psychiatrists; in my 17 yrs. in dealing with my brother’s schizophrenia I’ve witness outrageous incompetency that nearly got my brother killed; burnout and simply a lack of effort in some psychiatrists. The best are able to make a “connection” with your loved one; are proactive in treatment; are good diagnosticians; are open to family members’ input/information; someone you instinctively know you can trust. Remember, there are doctors who graduate at the top 10% of their class and doctors who graduated at the bottom 10% of their class-find the top 10% (3) Make a binder of all medical records; you’ll need them somewhere down the line, esp. when your memory fails you due to stress; the more “paper documented” the patient, the more likely you’ll get better help and be able to get police emergency transport to hospital if necessary (4) Always be prepared for emergency crisis; have phone numbers and secondary doctor contacts if main doctor is unreachable or away; (5) Find out if police dept. has a unit or police officer trained in mental illness crisis intervention; seek advice from authorities about what to say to police about your loved one so police can get a clear picture of what they’re dealing with; you don’t want police sirens coming down the block as your loved one might panic and run; you don’t want a person who has heart problems to be tasered (6) Try and “step outside” of your loved one’s disease and crisis whenever possible; a mental vacation or time out away from the stress and drama can revitalize you; in crisis do your best to stay calm, centered and focused; being emotionally detached temporarily could help you think clearly; (7) Know that you are doing everything humanly possible to help your loved one and be at peace with this; (8) Try to remember when your loved one pushes you over your limits: There but for the grace of god go I…