FROM MY FILES FRIDAY – I originally posted this blog in August 2010 when a distraught friend asked me for advice. I hope you will take a moment to tell everyone what advice you would give to a friend who discovered that someone he/she loves has been diagnosed with mental illness.
WHAT ADVICE WOULD YOU GIVE A FRIEND
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. Mental illnesses 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 serious mental illness and to 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 become well or symptom free but many, if not most, persons with mental illnesses do recover 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 that specifically talked about a person who doesn’t believe he/she is sick. 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 mental illness. 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 told her about the Bazelon Center for Mental Health Law which defends persons with mental illnesses if they face discrimination.
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:
wonderful. I have wrote you in the past when I was going through this with my son. I will have to say reading your book “CRAZY” was so close if not exactly the same of what my husband and I went through with my oldest son. Heartbreaking , scary and alot of emotions. I now have my son back and your right its not an overnight illness but through our love and support and never givng up the fight it was so worth it and I too, would do this all over again . I screamed, fought every channel to get him help and sure found out their’s not enough help out there and I was dying inside as a parent to help him. Thank you so much for advice and your stories. Love reading your post.
Elaine
Toledo Ohio
Never give up hope…don’t listen to those who say he/she will NEVER get better and the situation is hopeless! Even and especially when a doctor says it!!
Hi Pete –
I will give this some serious thought and get back to you if I come up
w/ something I feel may be helpful to others.
Here’s an interesting reality check – food for thought, I guess,
– As mental illness runs in my family, and apparently is present in some in-laws as well, I have observed, that even though I, similar to your son,manage to live meaningfully with and around my serious mental illness, I am not asked for advice, or counsel, or any other remotely familial involvement. It is only when I am in the stigma -driven guise of incognito status ( concealing my mental health diagnosis from others ) that I am able to offer advice or insight to anyone.
When I have disclosed my personal mental health condition as a type of credidation or credibility, I find I am dismissed, and not regarded as an accurate source.
It would be wonderful, if not uplifting and healing, if more folks consulted the well and recovered mentally ill for advice and such on these matters.
There are many intelligent and sensitive people w/ mental illnesses, some in the professional arts and sciences, along w/ mainstream parents and next door neighbors, who if approached with sincerity and respect, would love to impart what healing knowledge they may have.
I agree. I find that I lose credibility when it is discovered that I have a mental illness. I’m a board member and former president of our local NAMI affiliate, and it saddens me that when representing NAMI I have to hide that I have a mental illness or our whole affiliate seems to lose credibility. (I fall back on the fact that I’m a family member as well, with a father, son, and wife who all have mental illnesses)
Pete-I have read your blog for years now and I agree with everything you say. My son has had 7 hospitalizations since he was 17….he is now 23. I have had friends of my friends, who I have never met, who find out their sons also have a mental illness and I also give them the advice you write about. My main saying is “never give up”….no matter how angry you get, how depressed you get, how tired you get….you are the only one who can stand up for your mentally ill child since he cannot. It may take a long road to travel….I started out not believing it, helping him in every way possible as handing him his meds every morning and night, getting lawyers, arguing with doctors….and learned I will stand up for him, support him, guide him, but I will not live his life for him. It almost killed me doing everything for him, along with the worry. Now, he finally learned after his last bad break…left home at 3am…drove naked on a “journey”, totalled his car and walked naked in a big city and finally was found by the police. Luckily, they took him to a hospital rather than arrest him. I will say, our family has been one of the lucky ones when it comes to police and doctors….I had to fight, the very first breakdown with an ER doctor, saying my son was not recovering from withdrawal of drugs….he was having a psychotic break…and I mean I was MEAN…but it got the point across….but police have come to my door at 6am on a Sunday morning saying he brought me son to the ER after finding him walking the freeway….we have been lucky….but it hasn’t been easy. My son was intelligent, athletic, outgoing, popular…..and now I have had to accept that he may never reach all those goals he, and I, once had….but…today he takes his own meds….I never ask I never look. He knows what will happen if he doesn’t take them. He eats well, exercises and is holding his part time job..(who also was fantastic during his last break and had to be finally told all about his illness and has been very supportive) and finishing up his college degree…even though it has taken 5 years so far.
So….I tell people….hang in there. Be supportive, guiding, but let them live their live on their own. It may take years to get there and there probably will be many bumps in the years ahead, but never give up.
I felt your response to your friend covered so many really important
topics. I have also learned in the 6 years since my son became sick
while in college that there are a few issues and situations I want to add. I hope this helps….
My son has become someone I dislike very much, but whom I also
love. He lives with me and the stress of dealing with this annoying, disturbing, unclean, rude, unlikeable person has sent me to counseling, support groups and meds. I feel many times he is a “shadow” of himself. He looks like himself and sounds like himself but that is all.
In the first 5 years specifically, I found myself spiraling through the “cycles of grief” as if I am mourning a dead person who really is alive, but not who he once was. I actually could go through the five stages, denial, anger, bargaining, depression and acceptance in about a day. Even after 6 years my son can seem so much his old self for brief periods that even denial can still rear its ugly head.
He was diagnosed after a brief involuntary hospitalization with paranoid schizophrenia. Unfortunately that is paired up with anosognosia. His psychosis shows itself about every 5 minutes with laughing. This loud uncontrollable laughter can make me feel like I am living in a mental hospital.
Tell her that any future planning she might want to do is a crapshoot. My husband missed a group vacation we had planned to Mexico as my son became too ill to leave.
Tell her not to let him drive no matter how much he wants to as any normal child that age would do. My son wrecked my car and has not driven for over a year. A psychotic person should not be driving. Heartbreaking for all of us.
I think the hardest thing might actually be the inconsistency of my son’s behavior. I didn’t realize how much as human beings we depend on consistency in our lives. It goes unsaid really. The not knowing what will happen next is a very tough and stressful way to live and really can take it’s toll on your health. He can act like a 4 year old and a 26 year old within a few minutes. He will lie.
Stigma. My own son is impacted hugely by it in his own head. He just accused me of thinking he hears voices “like those homeless crazy people do”! He told me saying someone such as him who has an “amazing brain” (he was an extremely gifted kid) of having a “mental illness” and a “thought disorder” is the “most insulting, horrible thing I could ever say or think about my own son”! Needless to say if he had cancer or diabetes we would not have had that discussion.
What happens to him when we die? Still not resolved legally with a trust but who will be there to support him emotionally?
This can and will put quite a strain on your marriage and many families do not support each other much in this situation. You may be on your own. Much of my support has come from friends. I am open about this and have found a lot of people who are same situation I am but usually don’t talk about it. Telling our story has helped me ALOT!
We had an extremely BAD experience with his first hospitalization. It was unfortunate as we pinned a lot of hopes on the idea that NOW WE WOULD GET HIM ON MEDS AND ALL WOULD BE WELL. Instead he was so paranoid and afraid he wouldn’t eat their food or even drink their water. He didn’t sleep. After 3 days he came home not trusting us anymore and ran away 4 times.
So after 6 years he is living in my basement playing video games and watching tv. He has not seen a medical doctor, psychologist, dentist in over 5 years. He is not on meds. He has gained 75 pounds from poor eating habits and no exercise. I consider the fact that he cannot live on his own as a good definition for “he is a danger to himself”. This week I had experiences with him in which I was close to calling 911. He has never been on meds. I am unsure that pushing the hospitalization again is the right move, but how can he ever get any better if not on meds?
My 56 yr. old brother had late onset (age 38) paranoid schizophrenia. We’ve been on this rollercoaster ride for a long time now so my heart goes out to you and your son. Thank you for sharing your story.
you are very kind..my best to you all as well.
Your points are excellent, Pete. I hope you encouraged your friend to read YOUR book, too. When I’m approached for advice (after six years of lived experiences) a few things I share:
** Never discount the experiences/symptoms of the person in crisis. We must learn to empathize, to truly listen and understand without fear and judgement. The illness dynamics changed when our son could finally trust me enough to share his true feelings/thoughts/perspectives and when I, in turn, could listen without fear and judging and with no intent to “fix”.
** Reasoning with a person whose ability to reason has been compromised is UNREASONABLE :). Our son lives with a neurological disorder that has altered his higher thinking executive functions. The symptoms are treatable, but require the motivation and diligence that has been compromised by the illness. Expecting those with untreated symptoms of thought/mood disorders to be reasonable is like expecting a person with compromised wheelchair mobility, to “pull themselves together” to be motivated to walk. Our goal as advocates and supporters is to never cease trying to get our loved ones the help they so badly need and deserve. Our skills of reasoning must be used to fight for mental healthcare rights in a broken unreasonable system that only (and barely) services those able to recognize they need help.
** Your loved one and your family will be judged. Our son suffers with an illness that generally conjures up fear and prejudice among ‘civilians’, or at best gross ignorance, blame, or indifference. Our son suffers with an illness where in some states he is ten times more likely to be imprisoned than hospitalized. When our son was first diagnosed, there were no visits from friends – no casseroles, cards, or flowers. Friendships will be tested – understatement. But incredible, unexpected new bonds will form as well.
** Do not ask advice, and do not listen to your well-meaning “civilian” friends and family who have not lived your experiences! THEY.ARE.CLUELESS. I purchased multiple copies of “Living with Schizophrenia” by E. Fuller Torrey and mailed a copy to every immediate family member. After which, when family offered up their well-meaning (bad) advice, the conversation stopper would come when I asked them if they’d had time to read the book. –crickets– Best $10 a copy I ever spent.
** Set boundaries or the illness will consume you and the entire family.
** Education, networking (mental health professionals, mobile crisis, hospital staff, social workers, law enforcement, magistrates, state representatives, DSS, SSID, judicial system, lawyers & estate planning, pharmacists, etc) and fighting like hell for your loved one are absolutely mandatory.
** Making plans…bahhahaha!! Living day to day, and sometimes hour to hour is surprisingly not as sucky a survivalist technique as it sounds.
** Be prepared for surprising paradigm shifts (for the good).
** With hope comes healing, with healing comes fearlessness – a fearlessness to fight for radical mental health education/services/facilities/resources for loved ones and all persons fighting neurological disorders.
For you to articulate some of the depths of the experiences fathers go through continues to be a source of strength for me. These experiences change your world view completely and utterly. Your writing on this subject is impressive and succinct, thanks one more time! I find the advice I always offer is NAMI Family to Family courses. On Facebook there is the Bipolar Family Support Group. Also for schizophrenia. NAMI support groups have been helpful.
Pete, you gave your friend such great advice. I only wish that I knew you when my son was first diagnosed. I remember when I was going to my first support group meetings, and the deputy director of our county’s mental health department asked all of us if WE had therapists. I thought she had it all wrong. It was our loved ones with the mental illness who needed a therapist.
Today, one of the first suggestions I make is to ask if the caregiver might benefit from someone who is objective and can be a good resource. Most of us caregivers don’t take the time to take care of ourselves!
My mom was going through end of life issues from lung cancer, and between helping my son, helping my mom, supporting my wife who was going through anxiety issues, I thought I was literally falling apart. I sought a therapist and it was one of the BEST things that I could do for myself.
As caregivers, if we don’t take care of ourselves, we will not be able to support anyone else.
The other thing that was SO helpful to me was to find and develop my spirituality. I believe that mankind is fallible and will always be a source of disappointment, but GOD, never gives us more than we can handle. There is always a way. We just have to look, listen and feel.
There was no one to give me any advice. The ER doctor during my son’s 1st trip to the hospital told us to take him home and offered a story about how he, (the dr.) was in a similar situation at my son’s age. We should have never followed his advice. This was the beginning of my son’s rapidly decomposition of his mental health. Little did we realize that we were standing at the gates of HELL!
We eventually read everything we could about our son’s illness and how to take care of ourselves. I was lucky that I had my wife’s support, and she knew that she could count on me.
We eventually started our county’s affiliate of NAMI and we offer support and education twice monthly. We became a non profit organization in 2002.
Ultimately, participating in the support group has helped us and we have met some really wonderful people! We still struggle with our own issues surrounding my son’s illness, and like I once said to a reporter, “It is a life sentence”.
Take good care of yourself so that you can be there to advocate for your son /daughter. Also make sure to have a couple of friends who will be able to give you a hand if you need to go out of town for a short time.
It is important to know in your heart what the disease looks like and who your son/loved one is. Don’t lose sight of that. He is his own best advocate for his health. But he needs to be reminded in the middle of an episode….
Network. You are now a part of a unique tribe and together we are a force to be respected. Read about the history of mental illness/treatment and understand where we are historically and what we still need to change. We are part of a slow moving process…Try to remain the stable one, not as easy as I wish.
I don’t know that I can add to your advise. I do wish that I could have had more support during the initial crisis. I was so unprepared and made so many mistakes. I argued with his delusions, I tried to convince him he was ill, I made him take medication (I’m still not sure if that part was a mistake), I wasn’t able to advocate for any care. Maybe it is important for those of us who have been there to help others navigate the system. Of course after three years I am still trying to figure it out. I think we can offer perspective too. Any reality check must be tempered with hope. Yes, you will grieve the old dream but from the ashes something beautiful is possible.
LESSONS LEARNED? (1) DOCUMENT EVERYTHING: date/time of symptoms, behaviors, stressors, medications, side effects, doctor/ therapist consults, if possible-medical records, hospitalizations, diagnosis, meds given, etc.; any police reports, complaints from neighbors or co-workers, etc. Getting everything onto paper & organized has been incredibly valuable to us over the years & also helps us present a clearer picture to therapists/doctors, especially discontinuity of care when doctors & therapists leave clinics & new doctors/therapists come into the picture- (this lack of continuity has often complicated treatment). Also, our memories faded over time. During a crisis, powerful emotions blocked out our ability to remember things accurately because we were so emotionally distraught (especially when the police had to be called in for hospital transport) (2) “DIAGNOSIS DE JOUR”: It took years to get an accurate diagnosis for my brother as symptoms appeared, disappeared, re-appeared, progressed. Although difficult, try to get a 2nd, 3rd, 4th opinion. Many doctors & therapists often told us to not become too focused on a diagnosis but to treat the symptoms, be pre-emptive/pro-active when we saw decompensation. Find the best psychiatrists; avoid the burnt out psychiatrists, therapists, social workers, ER doctors, etc. (3) LEGAL DOCUMENTS: If possible, get psychiatric advance health care directives paperwork signed, powers of attorney, health care proxy, HIPPA info release forms so doctors can legally & openly speak to you about your loved one’s case. (4) CRISIS INFO: Have all emergency info on hand (carry it in your wallet) Names, phone, cell & weekend/”off hours” for family/friends who can help, treating psychiatrists, therapists, counselors, family doctor, mobile crisis teams, specially trained police community officers, etc. (5) ACCEPTANCE of your loved one’s illness is the healthiest goal to work towards: Acceptance allows everyone to progress & move forward instead of staying “stuck” and in denial which allows situations to deteriorate and repeat themselves over and over; (7) When we feel like “giving up” because we get burnt out, tired, overwhelmed, angry, etc., we remember “There but for the grace of god, go I…”
Pete has said it all. Like his, my advice whenever I meet someone distraught and floundering– “Find NAMI,” and take the NAMI Family-to Family class because you need a support system. When my son was diagnosed I needed to learn what it meant to have mental illness and that the “new normal” of life with mental illness didn’t mean a life sentence of hopelessness and fear. People can and do recover. Like Pete’s, my son is doing well but I know that he needs to be ever vigilant because mental illness is a life time deal.
Having lost my mentally ill son after he walked out of an emergency room where he should have been watched for suicide and he claimed to be homicidal … I can not stress enough the importance of what was posted by – Jas a day or so ago..
1. LEGAL DOCUMENTS: If possible, get Psychiatric Advance Directives paperwork signed, powers of attorney, health care proxy, HIPPA info release forms so doctors can legally & openly speak to you about your loved one’s case.
2. Treatment Team – Get agreement from Doctors, nurses and providers and have them sign off on you being an integral member of the Treatment Team – dont assume that they will engage you . This is where Legal Advance Directives are important.
3. CRISIS INFO: Have all emergency info on hand (carry it in your wallet) Names, phone, cell & weekend/”off hours” for family/friends who can help, treating psychiatrists, therapists, counselors, family doctor, mobile crisis teams, specially trained police community officers, etc.
4. ACCEPTANCE of your loved one’s illness is the healthiest goal to work towards: Acceptance allows everyone to progress & move forward