What role should a family member play when someone shows symptoms of a mental disorder?
It seems like an easy question. If someone becom
es sick you would assume their family would gather around and help them get well. But as we all know, mental disorders are not like any other illnesses and families…well, if you want to know how complicated family relationships can be just read a recent comment by Leslie Khalsa on my August 2nd post on facebook. She wrote poignantly about how she feels her family has abandoned her and doesn’t want any extra “drama” in their lives because of her mental issues.
It would be easy for me to dismiss what Ms. Khalsa has written if I had not heard similar comments from other family members. I remember a couple in Iowa who approached me after I had given a speech and asked if I could help them find their son. He had been diagnosed with schizophrenia and had turned against them. Occasionally, he would telephone and that was a mixed blessing. While his mother was happy to know that he was alive, he would always end their calls with psychotic and hurtful rants reminding her of how sick he was.
From a man in Oklahoma, I heard a different viewpoint, more similar to what Ms. Khalsa described. His parents told him that he was weak because he suffered from major depression and that he needed to stop complaining and “pull himself up by his bootstraps.”
My relationship with Mike has not always been easy. Those of you who have read my book know that I lied about him threatening me in order to get him taken into a hospital rather than to jail. Later, I called the police and he ended up getting shot with a Taser twice. Another time, I ordered him out of my house when I discovered that he had stopped taking his medication.
Two sources that have helped me better understand Mike and myself are Dr. Xavier Amador’s book, I’m Not Sick, I Don’t Need Help, and the National Alliance on Mental Illness’s Family-to-Family course.
As parents we often wonder if we are doing the right thing when it comes to our children and when you add a mental disorder, the terrain gets rocky. I’ve had people tell me that I needed to get tough with Mike and not intervene until he hits bottom. What does that mean exactly? After all, he was arrested and shot with a Taser? Short of allowing him to go homeless — what’s left? Suicide?
Other times, I know my fears have caused me to be an enabler. It helps that Patti is Mike’s step-mom. While she certainly loves him, she sometimes can take a step back and see how Mike and I are engaging in destructive behaviors that are not good for either of us.
Of course, siblings have their own issues with an ill family member. I’ve heard of sisters who were jealous of all the attention that was being shown someone with a disorder. I’ve heard of brothers who got so frustrated they severed ties in order to protect themselves. That’s happened with spouses too. One spouse simply dropped her psychotic husband off at her in laws and said, “I’m done with him.”
I remember talking to Bebe Moore Campbell, the late novelist who specialized in writing about mental illnesses, and listening to her explain how she never was critical of anyone who walked away from a family member. Sometimes, she told me, it was the only way for that person to save themselves because severe mental disorders can be so caustic and devastating. “I’ve see how these illnesses can destroy relationships,” she said. “No one can judge anyone else until they walk in their shoes.”
My friend, Joel “Buddy” Wier III, a fabulous NAMI advocate in South Carolina, has been a leader in stressing the need for families to be included when it comes to therapy and discharges. Not only ago, Buddy sent me a note about a father whose adult child had been in and out of a local mental ward three times. Each time, he was discharged to the parent’s home, but the parents were never included in the discharge planning and not even told that their son was being released. Of course, the hospital blamed HIPPA.
I also remember a counselor at the Miami Dade County Jail who told me that his sister, who had schizophrenia, had seen more than a dozen doctors and literally hundreds of therapists during her thirty year struggle. Yet, the family was seen as part of the problem, ignored and often treated rudely. “But who was there when all of those others moved on?” he asked me rhetorically.
Which brings me to the point of this post. What role should the family play? Tell me the good experiences that you have had and the bad ones. I’m especially interested in advice that can be used by parents struggling to understand their suddenly disrespectful child or consumers who feel their families have abandoned them. How do you mend families broken by an illness? And how do you deal with mental health experts who don’t understand how important families are in recovery?
Perhaps by sharing your stories you can help someone else avoid the pain that you went through. I hope so. Be well and have a great week.
About the author:
My husband and I are not there…yet. Our son, who has bipolar disorder with very persistent psychotic features, Asperger's, ADHD and other learning issues, is almost 13. When he was about 11, I stopped focusing on exclusively special education-related issues and started looking toward the future, and this included reading your book, Dr. Amador's, and others. We have had to hospitalize our son and he has spent some time in residential treatment. We are at the very beginnings of researching things he will likely need in the future, such as SSI. Our son is on the decade-long waiting list for our state Medicaid waiver programs, and we are also planning to look at various guardianship options, special needs trusts, and other such things that I never would have heard of otherwise. There is a very high likelihood, barring some incredible medical breakthrough in the next five years, that we will be having to put this groundwork information in practice. I don't know what we will do for sure or what the future will bring, but we worry about it and there is a small part of us that envies parents who watch their children grow up and leave home as self-sufficient adults, leaving those parents able to pursue activities again as a couple. It's kind of like parenthood itself. You try to prepare yourself and think you might know what to expect, but when it happens, you realize that you didn't have a clue. Thank you for your insights in your book and your blog – you are one of the bright spots we are using to try to see down the road ahead of us.
One passage I remember in your book is when a couple tells you that a parent has to be willing to have their child hate them in order to save them if they have a mental illness. You have to love your child enough to have them hate you. Incredible. That is insane and that is what you must do.
My high-functioning autistic, biopolar, ADHD, sensory dysfunctional son is now 22 years old. The period between ages 18 and 21 was toughest. He had done well in early adolescence, compliant with meds and therapy. Then overnight he became “an adult” at which time he abruptly stopped his meds stating “he didn't need them anymore”. In the ensuing months, he was made to leave home for aggressive behaviors toward me and his younger brother (I am a single mom) and he dropped out of high school a month before graduation. All of this occuring while I was pleading for help at the top of my voice. Some listened but no one could do anything. Finally four years later he is back on meds and stable thanks to an understanding District Attorney and a “creative” mutual agreement by which he now receives weekly visits from a case manager. Not exactly AOT, but as close as you can get in Tennessee (we remain 1 of 6 states without a Kendra's Law). But it took homelessness, learning to self-medicate with drugs and alcohol, several misdeameanor arrests, a brush with a felony charge that was dropped, a tasing episode, repeated victimization and loss of personal property … for him to say “mom, I need my meds”. My experience has led me to become a passionate advocate for AOT Laws in Tennessee. Thank you, Pete, for your encouragement along the long, dark way. It has always reassured me to read your book and your blog entries and know that there are others of “us” out there.
Wow, thank you Pete for addressing this painful problem among family members. Our entire extended family have alienated my son for years now … they simply do not want to learn how to support him, especially when he is in crises. My son also refuses treatment and since he was diagnosed as a child, we know he benefits from just a small amount of medication. Now as an adult, he receives very small amounts of supports/services due to his “right to say no”. It is “crazy” indeed that we family members have to make our own sick children “hate us” in order for us to help them stay well, out of jail or attempt to keep them alive! For more info read here:http://changementalhealthlawsinky.blogspot.com/
I have the triple wammy! My mother is bi-polar and schitzophrenic. She has spent most of her life hospitalized in Virginia's State mental health hospitals, yet she mangaged to have 5 children. All of my memories of these places are pretty much horrible. Often it would take up to three years to stablize her meds, she would come home, commit some kind of minor crime(stealing shoes) or eating neighbors flowers, trying to trade her used chewing gum for an icecream, that would land her right back in the facility. Once when I was about age 12, she escaped and came home to my grandmothers house. I convinced her to let my uncle take her back and rode along. At Eastern State, I watched through the car window as 5 big male attendants fought her to the ground. She was never violent.
At the age of 21 my super intelligent brother succumed to the disease. He had been a straight A student, he even aquired a full scholarship to VMI. He could not handle the stress of the school and dropped out. Joined the military? who knows why he did that. He was eventually discharged dishonorably. He ended up in Panama City Beach, where he was charged with being a Peeping Tom. Then he went missing, it has been 15 years since he was last seen. I call the social security office every 6 months to see if they are sending him a check. They wont confirm that they are, but they tell me that do not show that he is deceased. Yet. I have sent letters through them and they have always been unanswered. Everyone in his entire family has moved. So even if he wanted, he probally could not find us.
Then my daughter at the age of 22 started to show signs of illness. At least I had the experience and she has some knowledge of the family illness. She sought help right away. It has been a rocky two years though, with the ups and downs. She is schizo-affective. She was overmedicated for a year, almost non-functionional and gained 70lbs on Zyprexa. Major depression because of it. Went off meds, started drinking. Been to alochol treatment, been to drug treatment. Changed meds. Lost weight. Got a job. Lost it. Got a bad boyfriend. Moved in with him. Left him. Went back for a week, left again. Changed her meds again, did not go well at all. While visting an aunt during the med switch she stressed out and was hospitalized overnight in Jacksonville, FL Mental Health Hospital. She was tearful when she called, explaining that it was a horrible place. Funny thing, she was not so much sad that she was there, she was sad because she realized that her Grandmother has spent much of her life in places like it. When they let her go, her aunt would not allow her back at her house. So I had to get her a plane ticket home. She stayed with me for a week. Wanted to go out with friends drinking, I put my foot down. She left. Living with one of her friends mom right now. She aspires to do things with her life though, so I have hope. She has registered for a web design class and has found another part time job. The hardest thing for her has been that she wants to be a normal 24 year old. Free to do whatever she wants. I know that she can have the freedom, but drinking for her messes up her balance very easy. Staying up late and not getting her rest messes up her balance too. I try tell her that diabetics cannot eat everything they want. There must be lifestyle changes for her to stay healthy. But she does not want to hear that from her mother. At least, not as much as I say it. LOL. We are working on our relationship. It is not easy.
When my son became ill with schizophrenia we were lost — we knew nothing about mental illness, only because we never had a reason to learn about it before this. That very week I saw an add in our local paper about an organization called NAMI (which I never heard of) and they were having a Family-to-Family class to teach family members how to deal with their loved ones illness. That class made all the difference in the world for my husband and me. We learned many, many helpful things — one of them being that we should not take it personally when our son turned against us. When he became delusional and said I was not his mother and started calling me by my first name and spoke to me in a terrible way I had to remember that it was not him speaking, it was his illness speaking. I NEVER gave up on my son even when so many people (even other family members) told me to just let him go that he didn't want us involved. If I had I don't even want to imagine where he would be now. It has been about 6 years since this all started and we have gone through some really, really hard times but I am happy to say we are currently in a good place. Things are going better than they have in a long time and I pray it stays this way but I am pretty sure by what I have learned that it won't stay this way. One thing I do know though is that if it gets bad again I will still be here to do what ever I can do to help fight this illness, the mental health system and what ever else I need to do to help my son through this life of mental illness “he” has to live with. WE MUST NEVER GIVE UP HOPE!!!! Whether they want to admit it or not—they do need us because nobody loves a child like a parent does.
Thank you, Pete, for your excellent post and this opportunity to share. I have two things to recommend family members do:
First, take NAMI's Family-to-Family program. It's excellent (and free). It educates you, plus it gives you the support that comes from talking with others who are encountering similar problems.
Second, read “A Balanced Life, 9 Strategies for Coping with the Mental Health Problems of a Loved One” by Tom Smith.
In my case, I became a 'spectator' from an 'advocate' once my son became an adult. He had decided he did not need meds because his diagnosis was incorrect: he had no mental illness, in his opinion. Now, as an adult with “no mental illness”, the longest he has kept a job has been 6 months, and he is currently unemployed. Plus, he is now facing pending fatherhood at 21.
There is a cost to society that is not being captured in his situation and in other similar or far-worse situations of others. The long-term prognosis for him is not good, plus there is risk to his child.
(an excerpt from my journal. I have a 22 year old prescription drug addict who has suffered from life long mental illness including depression, anxiety and ADD. He was diagnosed with a serious pituitary gland disorder age 11 and is still under treatment. He is currently facing serious legal problems as a result of his problems)
My husband I received a call from the nurse in the critical care ward that we would be permitted a visit that afternoon. We had been unable to see our son since his admission several days before for a drug overdose, his second in 6 months. That horrible night we listened with disbelief as his ER doctor told us that our son was one of those “hopeless cases” whose lost soul was eternally damned and if we wanted to salvage any kind of life for ourselves we should turn away from him and never look back. The doctor went on to describe the predicament he was in, rescuing and saving these pathethic lives, only to see them return again in the same state days, weeks or months later, a massive waste of money, time and resources trying to help people who refuse or are unable to help themselves. Better to leave them to the devil and the consequences of their own death wish. I watched as the small gold cross on the doctor’s chest heaved excitedly as he described the harrowing power of addiction as a battle between sin and salvation. I nodded mutely, unable to formulate an adequate response to his rant and not wishing to prolong the dialogue. I was silently hoping this doctor would uphold his oath to provide good medical care in the face of his disgust of the patient.
I was familiar with the distain, even hatred, that people have for addicts. My own neighbor, friend and occassional dinner partner approached me after my son was taken into custody in front of our home and admonished me that he “moved to this community to get away from people like us”. Being a pariah in a social context was unavoidable. But hearing this rant from a treating physician in a professional capacity was alarming and unexpected.