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Lloyd I. Sederer, MD

Lloyd I. Sederer, MD

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Advice For Those With a Loved One With Mental Illness

Posted: 03/14/11 08:10 AM ET

My lecture had just ended when a carefully dressed woman asked me if I had a moment. I could see the distress and exhaustion in her eyes. Her name was Ellen, she said, and her 18-year-old son had become a constant source of worry and fear for the family--that he might do something terrible to himself, or might in one of his angry outbursts attack his sister, grandmother, father, or even Ellen herself. Tony had always been shy and awkward, she explained, but he had never had any behavior problems at school. When Tony turned 17, Ellen said, "...he began to change before my eyes. He became so hard to talk to, always wanting to be by himself, avoiding us and his friends. The school called to say he'd been absent a lot, and when he was there, he wasn't paying attention. I told him I was worried about him and thought he needed to see a doctor, and he said, 'I'm fine. Just leave me alone.' The family doctor said to give him time, but he's only getting worse."

Tony's mom was teeming with urgent questions: What should I do? How much time should I wait? What is the matter with him? Is he safe? Will he ever get well? And then there were the questions I thought she probably wouldn't even know to ask: what types of treatment exist, how to find them, and how to pay for them. How will she know that the treatment is right and working? And perhaps most important, what can she do to help him get the help he needs? All too frequently, people with a serious mental illness, like Tony, insist that they are fine and resist help, frustrating those closest to them. Not only does not getting treatment cause needless suffering, it can be associated with behaviors that are dangerous to the person himself, or to others.

I recall the wife of an attorney whose husband had become severely depressed after some business setbacks mid-career; the older, adult sister of a teenager whose weight had dropped from 120 to 90 pounds and who was constantly exercising and saying she was too fat; the spouse of an Army Reserve soldier back from his second tour in Iraq and drinking heavily, unable to sleep, plagued by nightmares and saying his family would be better off without him. Like Tony, the loved ones of these family members wanted no help. Their illnesses left them convinced that nothing was wrong, or feeling ashamed or hopeless, or all of the above.

More than 50 million Americans, youth and adults, are diagnosed each year with a mental illness like major depression, panic disorder, generalized anxiety disorder, PTSD, OCD, eating disorders, bipolar disorder, schizophrenia -- and alcohol and drug abuse, which frequently co-occurs with serious mental disorders. Their parents, spouses, siblings all worry about what to do to help them and what will happen next. While the most alarming instances of violence are truly rare -- usually the product of untreated mental illness and active drug and alcohol abuse -- they dominate our news. These are tragic illustrations of how not intervening early and effectively for problems that had broadcast themselves for quite some time can escalate into events that scar our national consciousness.

I have talked with thousands of family members like Ellen in my 35 years as a psychiatrist. Their pain and confusion is indelible in my mind. For them, and the millions of others who have a loved one with a mental illness, I can report good and bad news.

The good news is that improvement rates for serious mental illness like major depression and bipolar illness are as good as or better than those for chronic physical diseases like diabetes and heart disease -- provided the patient receives the right treatment consistently. The bad news is that an astonishing 80 percent of people in the U.S. -- tens of millions of people -- with treatable mental disorders do not receive proper diagnosis and effective treatment. One of the biggest challenges families face is often not the disease itself but the fight their family member will put up against getting any help.

Mothers like Ellen want and need to understand what has happened to their once happy child. Like other parents, spouses and siblings of anyone who suffers with depression, or an eating disorder, or PTSD -- mental conditions that are more common than any of us want to believe -- they are each trying to understand and help their loved one through the pain and dangers of their illness, and relieve the entire family of the burden these diseases create.

Every family (and friends and co-workers) with a member who has a mental illness encounters the same formidable problems. These families ask the same critical question, "What should I do"? I usually begin by saying four things:

Don't go it alone. Mental health problems, including addictions, are among the most common medical problems that exist! This means that many others, in your family and among your friends, have been down the same road you are on. Who can you confide in, trust, and ask to join you in thinking through the problems you face and the solutions you will need to find? Turn to your family doctor and trust your judgment; if necessary, don't accept a 'give it time' response.

If you know someone who has had a depression, addiction, traumatic disorder or other mental illness and is open about it (and, thankfully, more people are) ask for guidance; you may hear the good, the bad and the ugly but the more you learn the better. Turn to advocacy organizations like a local chapter of the National Alliance on Mental Illness (NAMI) or the Mental Health Association (MHA); they have help lines and may also provide referral information. Whatever you do, don't go it alone. You owe that to yourself and to your loved one. That lesson has been learned with every serious illness, including diabetes, heart disease, cancer, arthritic conditions, Alzheimer's and countless other conditions. Mental disorders are no different.

Don't get into fights with your loved one. This may be the hardest prescription of all. Faced with clear evidence of problems, your reason defied, and your worry and love driving you, you want to push harder, insist on your loved one facing the facts, doing something! That is the moment you need to take a deep breath and figure out how to control yourself.

Getting into a fight does not work. In fact, sometimes fighting will drive them more into their shell of denial and defeat. You need to ask yourself what is my loved one thinking or feeling and if you can't understand then how can I find out? You want to try to understand how their behavior may be serving them, in a way you don't yet comprehend. You also want to consider what leverage you have; for example, in addition to your love and concern, which is not quite working, what supports are you providing (like a cell phone, money, car, even a place to stay) that can be used to negotiate for what needs to be done.

In another Huffington Post article I introduced the concept of 'motivational enhancement', a process that helps a person see why they do what they do, why they might bother to change, and how to go about it. This is but one example of how to avoid a fight, and there are other techniques you can learn. Avoiding a fight is not the same thing as being disengaged; in fact, it is staying just as involved -- in a different way. But don't get into a fight. The battle is usually lost if you do.

Learn how to bend the mental health system to your needs. Mental health care in the U.S. is broken, as you have or soon will see. You will need to learn how to piece together its parts and make it work for your family. Because you are not alone there are others who can guide and coach you -- you can find them among other countless other affected families and in advocacy organizations. Like it or not, you will need to become a vocal spokesperson for what your loved one needs in a system that is fragmented, not organized to be accountable, not funded to incentivize effective care, and very uneven in its quality, despite good people trying to do the right thing. It may not be fair, or right, but health care in general -- not just the mental health system -- now demands informed and self-directed consumers and families.

Settle in for the siege and never give up. Few disorders, mental or physical, come and go in a short period of time. Most persist -- think of hypertension, heart disease, diabetes. The path of recovery is usually not immediate or continuous. The illness may go untreated, the treatment response may not be quick enough, services can be difficult to access and the quality of care may not be good enough. And through it all, your loved one may continue to resist getting help.

Your morale and determination will be tested. Never give up. My profession has learned again and again that at a certain point, often difficult to predict, a person's engagement in care and the course of illness shifts -- and a life is restored. When your loved one (and you) learns how best to manage their illness, and their overall wellness, then life will get back on track. I have seen so many people with serious mental disorders have full and gratifying lives. They may not be obvious in everyday life because fear of stigma has them quiet about their conditions; but I assure you they stand as terrific examples of people who have learned to live with their illness, and get the support they need to do so.

For all the Ellens, families and friends reading this post, start with these four guideposts. In future posts, I will discuss in more detail how to manage the mental health system and how to work with your loved one so they seek or continue to get the care they need.

..................

The opinions expressed herein are solely my own as a psychiatrist and public health advocate.

Dr. Sederer receives no support from any pharmaceutical or device company.

Visit Dr. Sederer's website questions you want answered, reviews and stories --- www.askdrlloyd.com


 
My lecture had just ended when a carefully dressed woman asked me if I had a moment. I could see the distress and exhaustion in her eyes. Her name was Ellen, she said, and her 18-year-old son had beco...
My lecture had just ended when a carefully dressed woman asked me if I had a moment. I could see the distress and exhaustion in her eyes. Her name was Ellen, she said, and her 18-year-old son had beco...
 
 
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Linda from Deerfield
Paying attention
01:29 PM on 03/23/2011
The writer seems to me to be giving excellent advice. Having watched a close relative struggle with two children's afflictions, I would add something about recognizing the problem. There is a tremendous range of human behavior, and I think as a result some of us don't really quite believe that there is such a thing as mental illness, but we would be wrong. A professional can see it and laymen who have seen enough can see it. Perhaps that advice not to go it alone will get past that initial temptation to disbelieve, but I would say it more strongly -- find the voice of experience and ask for help, no matter how nerve wracking it may be.

I also cannot emphasize enough how important I think it is to "settle in for the siege and never give up". I saw my relative's first battle fought with constraint and it did not go well. I saw the fierce determination that the second battle engendered. It entailed at one point a sort of boot camp for the sufferer. Most importantly, it entailed relentlessly demanding from one professional after another evidence that a proper course of action was being systematically identified until the sufferer was seen to be back in control of a good life worth living. I saw how challenging it was to not to give up the fight and how very, very worth while. I have wondered about the fate of sufferers who lack such a fierce advocate.
12:32 PM on 03/17/2011
ILLUM- excellent, elegantly put truth. Tthankyou sincerely-Denice
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senorlou
yep.
10:56 AM on 03/16/2011
I have chronic major Depression.  This last bought I had TRD - Treatment Resistant Depression.  My family, who never understood why I was "so negative" and thought I was doing this on purpose suddenly changed.  They helped me out.  They fed me, talked to me, never criticized me like they had before.  Basically, they saved my butt.  What did it?  A video by PBS's Frontline on Depression.  After watching that, they understood what I was going through.  I wish I had the post, but if you get on Frontline, you can find it.  If your loved ones can't understand what  you're going through, there may be videos.  People love videos.
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DJ Jaffe
Founder, Mental Illness Policy Org.
05:07 PM on 03/15/2011
You will find a lot of info on coping with having a mentally ill relative here
http://mentalillnesspolicy.org/index.html#coping
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DJ Jaffe
Founder, Mental Illness Policy Org.
05:05 PM on 03/15/2011
This article side-steps the issues. The woman fears her child may become dangerous to self or others and the response was largely in the form of platitutdes. The right answer is
1. Call 911 if your child does anything that makes you believe he is danger to self or others.
2. Learn about assisted outpatient treatment http://mentalillnesspolicy.org/aot/overview.html
3. Read this to learn how to force mental health officials to provide your son the care he deserves. http://mentalillnesspolicy.org/coping/better-care-mentally-ill.html
DJ Jaffe
http://mentalillnesspolicy.org
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Ma Lucille
a crack ~ that's how the Light gets in
11:23 PM on 03/18/2011
thank you
12:58 PM on 03/15/2011
My older sister has suffered from schizophrenia all of her adult life. Her county-provided social worker, whose services are free, has guided her (and our family) through everything including, subsidized housing, health care, Social Security, Medicaid, food stamps, etc...My advice to siblings or parents of adults with severe mental illness: start with your local government department of health and human services.
10:51 AM on 03/15/2011
Sorry to jump in again but I have been reading all the comments and want to thank many of you for sharing. It is not that I learned of any "solutions" but that many of the sharing experiences have given me some new insights into how I should respond to my spouse. I think of you as a sort of support group that is certainly lacking where I live and believe me, there are times I need support. So, thank you everyone and I extend my thanks even to those with whom I disagree. I wish others would read this post and respond. Cheers everyone.
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beyondliberal
Forward, never straight.
04:13 PM on 03/15/2011
nami.org has a list of support groups.
06:42 PM on 03/15/2011
Its always helpful to know that you are not alone - that your loved one is not a freak, nor are you. You are having a human experience shared by lots of other people. Please take care of yourself. Its a balancing act to take care of your loved one and to also make sure to make time for yourself. Take good care and stay hopeful.
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playsindirt
So much dirt, so little time.
08:59 AM on 03/15/2011
My son is a high functioning autistic and, consequently, has a lot of "interesting" friends. His girlfriend is a pathological liar and is not an ideal companion. When we try to talk to him about it he gets very defensive and angry so we try to ignore the situation. Her parents, rather than get her psychiatric help, just "pray on it." It is my fear that she will either get him fired (she has almost done this several times with her lies), put in jail, or killed. What people without mental illness in their lives don't truly grasp is that it affects the entire family and community when left untreated.
01:38 AM on 03/15/2011
An entire life with a mentally ill father. A nightmare. Horrid. Cruel. Gaslight crazy making. Hell.
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senorlou
yep.
10:58 AM on 03/16/2011
Sorry.  A childhood with a Depressed alcoholic.  Pretty much the same thing.
10:14 PM on 04/14/2011
If it's a contest, I can best you both. A childhood with a paranoid schizophrenic bi-polar mother and a severely depressed, alcoholic father. What childhood? Although I am VERY thankful I was not physically or sexually abused, the neglect was astounding. That my siblings and I lived in a small town along with all of my father's family members and not one of them ever noticed that perhaps we children could use some assistance, floors me to this day. They can all go suck eggs, as far as I'm concerned.
12:38 AM on 03/15/2011
Animals instinctively fast when sick or hurt.
09:48 PM on 03/14/2011
I live with a bi-polar individual. It isn't easy and sometimes I get angry. But I try and reserve my anger, if you will, towards those who simply avoid interacting with us on a social level. Once they observe a manic episode, they disappear. It hurts as their support could be so helpful. But I am simply being self serving. Suffice it to say, I applaud anyone's efforts to "educate" society, the insurance companies and our "enlightened' governmental reps. If I sound a bit up tight, I am. After 35 years of working with the situation, it does get wearing. Thank you for letting me vent a bit.
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TheMediaRanger
Pull over, buddy, let's see your poetic license
08:55 PM on 03/14/2011
The message that has to get through to policymakers and health insurance companies is that not only is a more pro-active and dedicated response to treatment for mental illness good for individuals and society as a whole, but it's also something that should appeal to the cost accountants running the business side of things. We do NOT save money by making people in need jump through hoops for mental health treatment. So many chronic and acute physical ailments eventually manifest from a state of poor mental health, and -- like other conditions left untreated for too long -- can easily become more difficult to manage and much more expensive to cure.

Take serious alcoholism as one example. The insurance company that takes it lightly is in its own casino, betting that it will never have to pay up to treat cirrhosis or a traumatic head injury from a fall on the sidewalk.
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LadyXoc
08:49 PM on 03/14/2011
It doesn't help that many schizophrenics, particularly with a history of hallucinogenic drugs, see their hallucinations as a free trip - that the manic part of bipolar disorder can feel very good - and that opportunities are limited for those with cv's with large holes in them, so that trading these fun things for education, employment, self-respect and membership in society seems very distant. With patience and family support, good therapy and medications, though, recovery is possible - but it takes all of the above.
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07:07 PM on 03/14/2011
They don't tend to listen or believe people who tell them something is wrong and they often skip their meds so it can become frustrating.
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senorlou
yep.
10:59 AM on 03/16/2011
Very true.  A lot of folks feel like failures, like they're crazy and worthless if they "give in" and get help.  If they finally do, they often realize how much time they wasted on suffering.
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edgarcaycedoc
05:55 PM on 03/14/2011
I have a hat I wear on days things are not really going my way. It says, "Dysfunctional Veteran: Leave me the He11 alone!!