When Riley, who is diagnosed with schizoaffective disorder, goes off his meds it’s usually coincidental with a binge of heavy drinking. His mother, Maika, a parent / contributor to Behind The Wall tells us that during these phases he will disappear for weeks or months at a time. She wrings her hands, fear and heartache are constant companions; she wonders what will happen to him, what dangers he will confront during these distressing episodes.
Riley’s past is marked by a pattern of disappearances, psychosis, and homelessness, often resulting in forced hospitalizations or jail time for public drunkenness and fighting. Once, he was arrested after an incident occurring while psychotic and was jailed for nearly six months where he experienced untreated psychosis, mistreatment, and developed other physical health issues.
Riley is dually diagnosed, a combination of two brain disorders, one of which includes addictions. It’s a complex and confounding mix that for many predicts a life of institutions and early death.
Our dually diagnosed loved ones bounce from rehabilitation facilities to hospitals, from homeless shelters to sober living, from jail to group homes, and back to rehabs. Many drug and alcohol rehabilitation facilities claim qualifications to treat patients with dual diagnosis. What this may actually mean in reality is they have a nurse on staff dispensing medications prescribed by a staff psychiatrist. Some rehabilitation facilities employ a harsh, confrontational style designed to address the addictions. But confrontation is usually detrimental to people who live with mental illness because such interactions can cause stress, a well-known and primary trigger for launching a mental illness crisis.
But where hospitals and residential facilities treat the mental illness, the substance abuse issue is often ignored. In one of our earlier blog posts, Just Another Friday Night in Lockdown, (July 26, 2013) a mother describes her experience with Scott, her dually diagnosed son who had been checked into a well respected ER hospital that treats many mentally ill patients experiencing psychosis. Having advocated for Scott through the many years of his illness, this mother knew that doing everything she could to support his sobriety was an imperative to getting him well and keeping him well. When the attending physician ordered an addictive drug, a benzodiazepine, to calm his mania, this mother protested, explaining how a benzodiazepine could trigger her son’s addictive brain and undermine his hard fought year of sobriety. She knew the drug Haldol alone would be enough to settle Scott, who hadn’t slept well for weeks. And yet, the doctor on staff simply ignored this mother’s request.
… for the dually diagnosed, life can be fractured with education paths and careers constantly interrupted.
For a person with dual diagnosis, illness management is challenging and treatments, when administered by medical professionals trained in one area of mental health but not both, which sadly, is often the case, becomes at odds. Because of these complexities, for the dually diagnosed, life can be fractured with education paths and careers constantly interrupted. The person with a dual diagnosis often feels isolated from community, society, and feels failure for the inability to manage both facets of their illness. And like Maika, the parents live with constant worry, fear, and grief.
So, What Would Effective Treatment for Dual Diagnosis Look Like?
In over 20 years of research, Dr. Robert Drake of Dartmouth and his colleagues have devised evidence-based practices for this unique and treatment-complex population. Ideally, treatment is integrated community-based and delivered by well trained providers using positive motivation and counseling, peer group support, supported vocational and life skills training, and medication management. Families are also included in this equation and also receive valuable support and education.1
Recovery looks different for each person with a dual diagnosis and it can be a long jagged journey. Maika wants her son to stay on his medication. She wants him to live at home where he will be safe and well fed. He won’t stop drinking but she asks him to at least use ‘harm reduction’ – that is, cut back on his alcohol consumption and stay on a good sleep schedule. She is grateful for every sign of progress and hopes one day he will be able to return to college or a part time job.
In general, a person in recovery works with a treatment team and learns to manage symptoms. This includes good sleep hygiene, nutrition, exercise, and knowledge of one’s medications. The patient participates regularly in support groups and self help groups. Recovery may include independent or group living, or living with one’s family. He or she may be able to volunteer, work, or take college classes. She has sober friends and feels she belongs in her community.
Parent / contributors to Behind The Wall have learned that being supportive and understanding of their dually diagnosed child’s complex challenges offers their best chance for recovery. And, there is hope.
1 An abstract of Dr. Robert Drake’s important work can is posted on psychiatryonline.org: http://ps.psychiatryonline.org/article.aspx?articleID=85734
For further and more comprehensive reading on the subject of dual diagnoses treatments, we recommend starting with the following resources:
Drake, Robert E. and Kim T. Mueser. “Psychosocial Approaches to Dual Diagnosis.” Schizophrenia Bulletin, Vol. 26, No. 1, 2000.
Friman, PhD., A.B.PP, Patrick C. Dual Diagnosis: Adolescents With Co-Occurring Brain Disorders and Substance Abuse Disorders, Fact Sheet. National Alliance on Mental Illness (NAMI). http://www.nami.org/Content/ContentGroups/Illnesses/Dual_Diagnosis_Fact_Sheet.htm
Jackman, Tom. Dual Diagnosis: Substance Abuse and Mental Health. The Washington Post. Washington, DC, July 28, 2009. http://www.washingtonpost.com/wp-dyn/content/discussion/2009/07/28/DI2009072801297.html
Thesis, Evelyn. “Addicts Often Battle Mental Disorders.” Sun News, Cleveland, Ohio, September 14. 2012. http://www.cleveland.com/healthfit/index.ssf/2012/09/for_many_addicts_recovery_mean.html
Additional Sources for Dual Diagnosis Evidence-Based Practices:
Drake, Robert E., Kim T. Mueser, Mary F. Brunette, and Gregory J. McHugo.
“A Review of Treatments for People with Severe Mental Illnesses and Co-Occurring Substance Use Disorders.” Psychiatric Rehabilitation Journal, v27, n4, p360-374.
Drake, Robert E., Susan M. Essock, Andrew Shaner, Kate B. Carey, Kenneth Minkoff, Lenore Kola, David Lynde, Fred C. Osher, Robin E. Clark, and Lawrence Rickards. “Implementing Dual Diagnosis Services for Clients with Severe Mental Illness. Psychiatric Services, v52, April, p469-476. 2001.
Regier, D.A., M. E. Farmer, D.S. Rae, B.Z. Locke, S.J. Keith, L.L. Judd, and F. K. Goodwin. “Comorbidity of Mental Disorders with Alcohol and other Drug Abuse. Results from the Epidemiologic Catchment Area (ECA) Study.” Journal of the American Medical Association, v264, n19, p2511-2518. November,1990.
As always, your comments are welcome!
What we learned from parents through our interviews for Behind The Wall is that parents and their child often have difficulty accepting a diagnosis of serious mental illness.
Sometimes the diagnosis comes with the mixed feelings of relief—for having a name for what it is that makes the ill person feel unwell, and also grief for what the illness portends. And because of the stigma of mental illness, even the most well-informed individual may choose to deny the diagnosis for a deep desire for it to be untrue. Most people understand to some degree that a mental illness diagnosis signifies a life with challenges, and for some, unnecessary shame.
But parents we interviewed can attest there is no shame in mental illness. A person with mental illness may have challenges but they are capable of living a full life, finding happiness, stability, and fulfillment. They are capable of meeting expectations, provided these are realistic.
How does one get there? As one mother put it, “As soon as I accepted it, my son’s life got better.” This is good advice for any parent. In life, most of us have learned that an obstacle cannot be overcome without identifying what it is, exactly, to be overcome.
When a friend of mine learned her newborn was diagnosed with Down syndrome, she was filled with grief. She hadn’t expected to have a child who would have such profound challenges. But years later, she and her husband stood before his classroom on parent night and explained their son had a syndrome, and yes he looks different, and please explain it to your child because that will make it more comfortable for everyone. There is nothing to hide, nothing to be ashamed about. And what she has observed is that the children whose parents are open about the boy’s challenges are the ones who are most accepting and, well, friendly towards him.
Well, Down syndrome is not mental illness. And maybe the rest of society has a more difficult time understanding mental illness. But the example is apt in this regard: being honest and informed with your child and those in your child’s life can help him or her accept the illness and manage it better. Being honest with yourself, as a parent, can help you be more direct in finding the best treatments and solutions to the difficult day-to-day challenges. Bianca, a parent we interviewed told us that when someone asks her why her son is not attending college or a colleague asks about her son, she now just says, “He’s been diagnosed with schizophrenia.” She says, “Let them deal with it!”
What parents need, and often want when their child has been recently diagnosed with a serious mental illness —any illness– is honesty. Reality.
Since we couldn’t say it any better, here’s Kerri’s advice. She’s the parent of a young man in his late twenties who was first diagnosed with mental illness at the age of twelve.
To a parent whose child has been recently diagnosed I would never say, “Oh, it’s going to be fine, don’t worry.” I would be empathetic. I would say, “This is hard. I remember when Thomas…” I would draw upon when Thomas was first diagnosed. “I was devastated. It was hard. Take it one day at a time. Time will tell.”
I would give advice on what to do: “Make sure you have a good psychiatrist with whom you can communicate well, somebody you can trust. You need support. These are the things you should be doing. I hope you can come back to our support group next month. Do you have good friends there for you?”
I would give tangible advice on how to take care of himself or herself as a parent, make sure they have the information they need. If there is a good book for them, I would lend it. Websites, articles. I might even say, now that I know more about the medication piece, “Medication is really tricky…if you are ever concerned that your child is either over-medicated or on the wrong medication, you should watch for these signs…”
I would give concrete advice. I would never be like, “Oh, don’t worry. It’s all going to be great, wonderful. I’m sure your son or daughter will overcome this.” I wouldn’t go there. I’d be in the here and now. I would never, ever say anything negative because I would never want to discourage a parent. I mean, there’s always hope and there are some people who do fine.
And what do parents of children diagnosed with serious mental illness want from the rest of us? To listen. To understand that parenting for them is different, poses more challenges than most parents have. They need us expect them to be late to things, not be able to show up sometimes. But most of all, they need people to be there for them.
More from our amazing super-parents to come…
As always, we are interested in your comments: