Appendix 1: Family and Consumer Illustrations of Co-Occurrence Treatment Needs
A Parent's Story
When my son was in high school he began smoking pot almost daily and experimenting with other drugs as they were available to him. As parents, we attributed the mood swings, erratic behavior, and change of lifestyle to his addiction. Once evaluated and diagnosed bipolar at age 17, the mental illness took precedence in his treatment. Other than an occasional AA meeting during his inpatient hospitalizations and cursory discussion about his drug use, there was no recognition of how addiction complicated and compounded his mental illness. While as parents we tried to hammer this message home, it was not apparent that the mental health community of providers were validating our efforts and reinforcing this concept.
My son plays one illness against the other, just like a child plays one parent against the other. For example, when confronted about the exacerbation of psychiatric symptoms, he will dismiss this, saying,I relapsed.' More frustrating from a parent's perspective is how you persuade your mentally ill son to comply with legal drugs that have, on more than one occasion produced horrifying side effects, when simultaneously you are trying to promote abstinence from illegal drugs and alcohol.
It would be eight years before BOTH illnesses were equally acknowledged and addressed. At the time, Genesis House was the only game in town when it came to recognition of the interplay of addiction and mental illness. For the FIRST time, the counselor took a complete drug history. The interview process was a catharsis for my 25 year-old son, as he held so much guilt about the drug use. One wonders what a difference it would have made if BOTH serious brain disorders had been treated aggressively from the beginning.
Shelley's Story
As I picked up Shelley in front of the office (nicely dressed, articulate, and eager to start her new position as residential counselor at Foundations Associates in Memphis), it was hard to believe that six years ago she faced a time when she was labeled by her AA group as the hopeless case' in the Big Book. Never say never,' she says as she smiles and begins to relate her story.
At the age of 15 Shelley began drinking alcohol and using drugs on a regular basis, and by the age of 18 she was using heavily and rarely had a sober day. Her first emotional breakdown happened at age 21 and, at the time, no one knew whether the symptoms were drug induced or a true mental illness. This began her 5-year journey through the system -- with a prescription for lithium and a devout denial of her problem.
A hazy six weeks in an inpatient mental hospital followed, where Shelley describes herself as reverting to ababy' in every way: I couldn't even take care of myself; they had to dress me and bathe me.' After finally becoming stable on medication and being properly diagnosed as having bipolar disorder, Shelley spent the next two years seeing a psychiatrist on an outpatient basis. Shelley remained relatively stable for the next year and a half, until a visit to a relative's house prompted a serious downfall. Thelittle bit of rum' in her Coke started the drug and alcohol abuse over again. Medication was only taken occasionally, and any family efforts to intervene were seen as an attempt atcontrol.'
Shelley's angry outbursts and manic episodes caused a great strain on her living arrangements with her mother, and she was eventually given an ultimatum ofget help or get out.' While thehelp' she got was a 28-day Alcohol & Drug (A&D) program that Shelley prematurely ended after 15 days, she learned of the concept of dual diagnosis from a psychiatrist who reported that 50% of individuals in A&D treatment also have a mental illness. Treatment remained ineffective, however, as Shelley recalls that her mother's threats, rather than her own motivation, were the reason she pursued services.
Shelley continued a relapse cycle:Sometimes I didn't take my meds because I wanted to have that manic feeling. I lied to my Mom, and started using all over again.' Eventually Shelley made it through a 28-day stay at an A&D inpatient facility and started going to AA meetings on a regular basis after she got out. Believing alcohol and drugs were here sole problem, Shelley felt that maintaining abstinence would help herhave this thing licked.'
After maintaining sobriety and psychiatric stability for almost a year, Shelley stopped taking her medications. A series of manic episodes, including many tattoos andmaxed out' credit cards, followed. Shelley met afriend' who was also in recovery; he introduced her to crack cocaine. Again, the addiction cycle followed, as did another ultimatum from her mother. Shelley resumed another series of treatment in multiple facilities, each of which focused either on A& D or mental health services -- rarely ever together. While the concept of dual diagnosis was re-introduced to her during a four-month stay in one facility, it never occurred to her that co-occurrence was her problem. After six months of sobriety, another relapse landed her in jail and on a five day using spree: 'No one knew where I was or whether I was dead or alive and, honestly, I didn't care.' For the first time,a spiritual awakening' helped her appreciate the impact of her situation on her family: 'God spoke to me and let me know I could be dead and made me think about whether or not I wanted my family to have to go through my actually being dead.' Although her mother refused her return home, Shelley began her own journey for recovery: 'I was looking for long term treatment, which was hard to find. I finally heard about Foundations from my case manager, and I called them every day (for 3 weeks) until they took me.'
Shelley recognized she needed the structure of long-term treatment, and identified its impact on self-discovery and leisure -- 'I learned how to have a good time without drugs. I started using drugs in the first place to have fun and because I could be a different person with them. I had to learn how to be myself.' While she reports that the support she needed was provided through the program, she identifies the dual diagnosis meeting as the most beneficial element: 'It was the first time I had ever talked about the two together. Everywhere else (I had been), you kept them (A&D and MI) separate. It was so good to see that there were other people that had the same problems.' Shelley learned about what it meant to be diagnosed with two illnesses. I never thought it (being addicted to drugs) could happen to me.' She confesses that the stigma of both illnesses made them hard to accept, and she acknowledges that taking meds everyday was not a routine she found easy. After six months of treatment, she went home. This time she knew it was different.
Her eighteen-month anniversary in recovery just passed and, as we sat at a restaurant and talked about what finally helped her into recovery, she recounted a story about someone who believed in her. One of the leaders at Foundations always said that if he could help just one person, it was all worth it. I remember him saying this over and over again, but what I didn't realize, until someone close to him told me, was that I was that one person. Tears streamed down my face.' She knows she will always be in recovery, but her whole outlook on life has changed. She loves herself today and is able to give of herself, something she could never do before.
'I believe there comes a time in recovery where you realize how good your life is without drugs or alcohol and if you stay on your meds. Drugs and alcohol honestly don't even appeal to me anymore, and every time I want to stop taking my meds'I just put it in my mouth and deal with it. I don't even want to take a chance at messing up again.'
Today Shelley is active in recovery meetings; she takes her medication every day, has had a stable job for ten months, and is in her second semester of college. She is not the old Shelley anymore but the young Shelley, and definitely not ahopeless case.' She knows she still has a long road ahead but she's making it ---- one day at a time.
My Story
My story is reflective of the struggles many addicts and manic-depressive types endure. I experimented at age 14 with LSD and Budweiser, and always kept secrets from my family. I maintained my own little fantasy world, and even achieved honors in high school and college. Pushing myself to beunique,' I developed a Jeckyl and Hyde personality that lit up when I was.
Venturing into nightclubs and late nightraves' was my favorite venue for scoring drugs and releasing the power ofmania man.' I loved the rush of dancing all night and then following my moment-to-moment instincts of how to make it home and crash out. Along the way I wound up in several mental hospitals and various drug treatment programs, but I still believed I could maintain my using when I got out.
Finally I hit my bottom when I was arrested for assaulting a close member of my family while high on crack and ecstasy. I spent 4 long months incarcerated, with no available options to escape my consequences. I saw the light when my case manager discovered a program that treated dual-diagnosis, and she recommended to my public defender that it might provide a successful regimen for me to follow. I had previously never completed any type of structured program, and thus I always feltincomplete.'
Over the last year and few months, I have secured a screening position with Foundations Associates, a job as Manager of my halfway house, and active participation in Narcotics Anonymous. I still take medication to ensure that my moods remain stable, and I follow all the guidelines set forth by doctors, mentors, and advisors. I believe that I had to have both of my problems under check before I could start to build a real life. Now I get to help other people every day and am realizing thatone day at a time' goes far beyond just a slogan. I thank my sponsor and extensive support system for keeping me humble and focused on gratitude for each moment that I am granted to grow and share and help.
A Family's Story
My forty-one-year-old brother-in-law is incarcerated in a federal prison, due in large part because he never had proper diagnosis and treatment for his co-occurring psychiatric and substance abuse disorders. From the age of eleven when I first met him, it was apparent that something was not right with him. He was already using drugs (LSD, marijuana, amphetamines, barbiturates), drinking alcohol regularly, and committing petty crimes to support his habits. His teachers didn't recognize that he had dyslexia or that he was verbally and emotionally abused and neglected at home by an alcoholic mother who provided no structure, supervision, or discipline beyond screaming. The teachers added to his despair by punishing him for having a learning disability and what was an obvious case of attention deficit hyperactivity disorder (ADHD).
All his siblings began using drugs and alcohol before they were ten years old, partly to self-medicate their uncontrollable feelings and to feel normal,' a description commonly used by addicted persons about the effects of their drug of choice. The stress of their lives was contributing to, possibly even triggered, their psychiatric symptoms.
His father was a poly-drug user who had abandoned the family when my brother-in-law was a baby. Both parents exhibited symptoms of serious mental illness throughout their adulthood, although neither was ever officially diagnosed or treated. The impact of their erratic behavior and emotions left lasting scars on all four children who now have diagnosable psychiatric disorders that have negatively impacted their own lives, that of their spouses, children, and the larger community. All have also used drugs and alcohol to excess. Having co-occurring disorders is a family trait.
One brother has been diagnosed with ADHD and obsessive-compulsive disorder. Fourteen years ago he entered a 30-day treatment program for severe substance abuse. Due largely to the intensity of the treatment, the family education (one whole week!), and three years of weekly family aftercare, he has been sober ever since, one day at a time. His oldest daughter was diagnosed with the milder form of bipolar disorder.
By the time my brother-in-law was fourteen, he was sentenced to live in a group home 180 miles away. In the intervening years he has lived in the community less than six years, most of those only while as an escaped prisoner or on the run in violation of parole. We have noted a pattern. When he is released from jail he then immediately re-offends, usually in a way that is certain to result in his being caught; because he is institutionalized, jails and prisons are the only places that he feels safe and has structure in his life.
Unfortunately he is not safe from drugs or alcohol behind bars, because he tells us that access is amazingly much easier from within than from the outside. He has tried to help himself. He was the president of his prison AA group, until a social worker introduced a program that taught the inmates that they could learn to use alcohol responsibly. After that training, he couldn't wait to get out of jail to prove that he could control his drinking. It didn't work.
Within weeks he was back to the point of addiction he'd once experienced, ingesting quantities of alcohol and cocaine that would kill most people. His judgment was so impaired by the substances and by obvious manic delusions that he could perform humanly impossible feats. We tried to do a family intervention, but the family erupted during the session with old hurts surfacing, and he ran out of the building angry and defeated.
Eventually he did get treatment and even live in a halfway house, but his psychiatric illness still hadn't been diagnosed, so only half of the problem was being treated. Understandably he relapsed trying to control his mental health symptoms with alcohol and was kicked out of the halfway house.
The last time he was between incarcerations, the correction system released him at the gate of the rural prison at which he had served his time. They gave him instructions to report within three days to his parole officer in Knoxville to be fitted with a tracking anklet bracelet. With his history of flight, the action was irresponsible. We believe they hoped he would leave the state, so they wouldn't have to deal with him. That is what happened.
However, he didn't stay away long, because he had two options in his mind- suicide by cop or a promotion. He had told us before that federal time was like a promotion. How sad that in his culture and state of mind that is the case. He had also bragged of going down in a blaze of glory some day. We knew he was depressed and desperate at that point.
Then he robbed a bank. A few hundred yards away he dropped his backpack with his identification and most of the money inside, on purpose, we are sure. We were concerned that he intended for the authorities to kill him and felt that with his history that might be their intention as well, to rid society of this pariah once and for all. So we called every head law enforcement official in the area- the Sheriff, the Police Chief, the FBI and warned them of his state of mind and to take care how they caught him. The man was sick and had been for many years. He was reduced to being tracked like a scared rabbit or a dangerous predator.
Certainly he has graduated to crimes that demand he be kept locked away from society. The reasons he is there are rooted in his childhood, when he literally cried out for help and no one answered. Over time, he lost all hope of having a normal life. The only place he felt he belonged or had status was in jail.
In the 1970s in his late teens he was sent to a psychiatric hospital for evaluation. Because he feared being labeledcrazy' and was sure he would be (and that he would end up at Lakeshore), he persuaded his mother to bring him home before a diagnosis could be made. A few months later he began using heroin and moved out of the house. Before long he had robbed both his mother and older brother of property totaling more than $200,000. We all knew he was sick, but we didn't know what to do. The jail offered no treatment
My brother-in-law has a sentimental, loving side that I have seen. But a gentle spirit traumatized from birth needs mercy and grace. All he has ever received is punishment. He has deserved his separation from society, but why don't we help people like him while they are inside in an environment we control? I don't understand. We are paying for our lack of attention to his psychiatric and substance abuse disorders, integrating treatment so he can have hope of a measure of relief and recovery.
From my own experience as a person with bipolar disorder and because of the strong genetic history of his family, I know he has a severe form of the illness also known as manic depression. Many children with ADHD eventually are diagnosed with bipolar disorder. Without early intervention, treatment, and support, the result can be an adult much like my brother-in-law, who has caused so much pain to his victims, to his family, while his own deep pain continues unalleviated to this day.
He has no contact with any of us and no friends. He is alone. Imagine the anger that must burn inside because of the injustices he has suffered. With no way to deal with thoughts that descend into madness at times or his feelings of frustration, shame and grief of a life lived largely without hope or love, he needs intense integrated treatment, including therapy, medication, coping skills, and Dual Recovery Anonymous support to ever have a chance at a normal life on the outside
As a state, we have paid dearly for not assessing his disorders and treating them appropriately. The cost of his trials, the police time spent tracking him, his incarcerations of about 30 years so far approaches a million dollars! The human cost is beyond estimate.
