Question 1

Lesson 1: Trying to Find Treatment is a full-time job

Accepted Answer

When my daughter's mental health challenges became more significant, and we discovered that she was self-medicating and using multiple substances, that is when things really came to a head. She agreed to go to inpatient treatment, but only if the treatment center was for young people her age. I naively thought all I had to do was review the list of centers in my health insurance's provider directory and select one, but I quickly found out that even though the directory said they were accepting new patients, they rarely were. It was so frustrating and felt like false advertising. I ended up having to take several days off work so that I could call pretty much every provider within 200 miles to find just the handful that were options. ​​I also soon discovered that my health insurance didn't cover the treatment centers specializing in care for young adults—those were all out of network. I finally found a place that sounded perfect up near Seattle, but we had to wait a week until my daughter could get an intake appointment. I spent that week keeping her as busy as possible to distract her and to keep her from changing her mind about going. However, what I thought was going to be a positive outcome led me to Lesson Number Two...

Question 2

Lesson 2: Treatment Centers Don't have to Accept Your Child even if you have insurance and/or can pay

Accepted Answer

When the day finally came for my daughter's intake interview, it sounded like everything went well from both my daughter's and the intake person's perspectives. They gave us a list of things for her to pack for her stay and said they would get back to us after the full team reviewed her information. I was stunned, however, when I got a call the next day to say that they wouldn't be accepting her into the program. Because she was a legal adult at that point, they couldn't tell me why she wasn't accepted, just that they didn't think the program would be a good fit for her. She must have said something during the interview that concerned them, but to this day, I have no idea what it was. That left me frantically calling around other places that didn't fit her "young adult"criteria, but I didn't have any other choice. My exhausted daughter then had to do three more intake interviews, each of which was emotionally draining for her. These were all facilities that had mediocre reviews at best, but I didn't know what else to do. That's when I got to Lesson Number Three...

Question 3

Lesson 3: Insurance Decides when your Loved One Leaves Treatment, not a Doctor

Accepted Answer

When I finally checked my daughter into a residential facility in Washington, I felt relief that she was somewhere safe. They told me she would be there about a month. I got a call from her once she was out of detox, and she sounded like she was doing well, so I was optimistic. She continued to call me every few days, but when she told me they were planning to discharge her just shy of being there three weeks, I stupidly thought, "wow, she must really be doing great if they're letting her out." It turns out that insurance had just decided that's all she needed. Three weeks is not enough for anyone to get better, especially for their first rehab stay. That's when I got to Lesson Number Four...

Question 4

Lesson 4: Relapse (or a recurrence of symptoms) is Often Part of Recovery

Accepted Answer

When I picked my daughter up and brought her home, I thought she would want to continue her sobriety and get her life back on track. But, like most teenagers, she wasn't ready to be responsible or sober. Within a few hours of returning she met up with her friends and relapsed. She also refused to go to the outpatient program she was supposed to go to. I was so stressed that I barely ate and lost 20 pounds. That's when I got to Lesson Number Five...

Question 5

Lesson 5: There is no coordination of care once your loved one leaves rehab

Accepted Answer

My daughter was discharged with about nine medications that she was supposed to take at various times of the day, along with a phone number for the outpatient program she was supposed to sign up for. Oh, and she was also supposed to find a sponsor on her own; they didn't connect her to one. Expecting a teenager to manage that themselves, not to mention one that had poor mental health, attention issues and social anxiety, is ridiculous. She could barely take a shower on her own. Once the treatment center discharges your child, they are done with them and on to the next patient. I later found out that rehabs aren't always reimbursed from insurance or government contracts for providing transition services after discharge, so no wonder many of their clients are left flailing on their own.

Question 6

Lesson 6: If You Can Find the Right Treatment Center, it can have a hugely positive impact

Accepted Answer

My daughter was at least functional the first few months after that initial rehab stay, but at about the six-month point, she was at a dangerous low. She was experiencing extended psychosis and was using multiple substances. After many arguments and raised voices, she finally agreed to go to residential treatment again. However, this time I found a program that specialized in young adults with co-occurring disorders that was a full three-month program. First she would do a week of detox and then a month at a residential facility on the Washington coast. Then she would transfer to the young adult outpatient program in Oregon and stay in sober housing. My daughter often said that the residential program she stayed at on the Washington coast turned her life around. There she found a wonderful and supportive community where she had access to drug counselors, psychiatrists, peer meetings and group outings/walks on the beach. It was there that her mental health disorder was finally diagnosed (schizoaffective disorder), and she received the appropriate counseling and medicines to treat both diseases. I saw the light come back on in her eyes and she was very committed to working on her sobriety and mental health. When she was transferred to sober living housing, that's when I learned Lesson Number Seven...

Question 7

Lesson 7: Many sober living situations may not meet the needs of people with mental health disorders

Accepted Answer

Some of the symptoms of schizoaffective disorder are social anxiety and sensory overload, so the transition from her peaceful rehab into a crowded sober living home was extremely challenging for my daughter. Plus, many of the people staying in the home with her weren't committed to staying in recovery (some were court-ordered to be there or they were just doing it to make their parents happy), so they often encouraged her to party with them and break house rules. I also learned that drug dealers tend to congregate around rehab centers and sober living homes, as they find it a great way to get new clients. My daughter finally called me after two weeks to say that she couldn't take it anymore and needed to leave. I didn't want her to run away because the street is a very dangerous place for young women—especially those with mental health disorders—so I agreed to let her move back in with me if she still followed her prescribed program of care (i.e., attending her IOP, taking her medications, regular urine tests and attending doctor visits). Yes, that was a risk, but it was the best decision I ever made. If I hadn't, she definitely would have relapsed again. We were able to create our own supportive housing environment that wasn't available through the standard rehab programs at that time. Thankfully my daughter really wanted to get better and followed all the supportive housing rules, and we grew closer than we ever had. My point of telling you this is that 12-step programs and sober houses may work well for substance use disorder, but not so much for people with co-occurring disorders.

Question 8

Lesson 8: Taking Care of Yourself is Just as Important as Caring for your Loved One

Accepted Answer

As I mentioned earlier, I lost about 20 pounds from the stress I was under trying to help my daughter. When she went into the three-month program, I realized that I needed to take care of myself so that I could better support her when she got out. I started counseling, joined a Nar-Anon group, and spent a lot of time out in nature. The combination of these things allowed me to recenter and regain my health. The Nar-Anon group was also immensely helpful in learning to understand my daughter's disease and how to support her with love and boundaries without enabling her. This allowed me to stay calm during stressful times and find ways to connect with her. She was so appreciative that I went to my weekly group, as it showed her that she mattered.

Question 9

Lesson 9: Recovery is a Lifelong Journey

Accepted Answer

Schizoaffective and substance use disorders are lifelong diseases. There is no cure, but both can be managed with the appropriate care and attention. As I mentioned above, relapse (or a recurrence of symptoms) are often a part of recovery, and your loved one may need to go to inpatient and/or outpatient programs numerous times throughout their lifetimes to help manage their diseases. This does not signal that they are failing. Recovery is not a linear path. You should celebrate that they are recognizing they need to get back on track and support them.

Question 10

Lesson 10: Don't Get Complacent

Accepted Answer

Because co-occurring disorders are lifelong disorders, there are going to be ups and downs. After a long period of ups (my daughter had a year of sobriety, a job that she loved, living mostly independently and was outwardly happy), I began to relax and didn't notice the early signs that she was struggling again. Then she let me know that her anxiety was really high and she had been trying unsuccessfully for months to find a psychiatrist that also did counseling, but no one had any openings. Instead, she had a psychiatric nurse practitioner for medication management along with a revolving door of online counselors because she couldn't find a permanent one. She used to tell me that she always felt safest when she was in residential treatment because all of the doctors and supports were there and she was away from all the negative influences. "Being on the outside is what scares me" she would say.So, I suppose I wasn't completely shocked when I received a call from her friend to let me know that my daughter was having a psychotic episode. That led me to Lesson Number eleven...

Question 11

Lesson 11: The Stigma Around Mental Health and Addiction Affects the Care Your Child Receives

Accepted Answer

My daughter was afraid to go to the doctor because she told me she was treated poorly at urgent cares and emergency rooms because she was an addict. I got to experience this firsthand when I went to help her after her friend called me. When I arrived at her apartment (in the the same building as me), I called the mental health support line, and they directed me to take her to a walk-in clinic for immediate care. However, my daughter was experiencing catatonic psychosis, which means that she wasn't able to move on her own, so I had no choice but to call an ambulance to transport her. The EMTs that arrived were so disrespectful toward her. I asked them to bring a gurney because she couldn't walk, but they said the gurney wouldn't fit in the building elevator, which was total bullsh*t. I asked them to use the freight elevator then, but they still wouldn't do it. I had to hold her up and try to get her down the stairs myself. Once we finally got her into the ambulance, it only got worse at the hospital. They did an initial intake exam for vitals, but then we sat in the emergency room for several hours before the nurse finally called us in and took blood. Then they sent us back out to the waiting room where my poor daughter was starting to become more aware of the loud noises and sirens which were really upsetting her. I begged the nurses to please let her lay on a stretcher in a hallway somewhere quiet until the doctor could see us, but again, we were refused. Once they saw the blood test results that showed she had ingested multiple substances, she had landed on the bottom of the priority list. After almost five hours, my daughter was alert enough to walk out because she knew they wouldn't help her. I cared for her for two days until I had to check her into a behavioral health hospital. That's when I got to Lesson Number Twelve...

Question 12

Lesson 12: Understanding the Legal Options when there's a crisis

Accepted Answer

The wonderful folks at the recovery center in Washington had connected me with a behavioral health hospital to treat my daughter's psychosis before should could return for another residential stay with them. When I got her to the hospital, she had little connection to or understanding of what was going on around her. The doctors examined her and determined that she should be admitted immediately, and then handed me about a dozen forms for her to sign. Because she was an adult, she needed to sign them herself. They were kind and let me take my time and read each form to her and steadied her hand as she signed each one. Had she not been able to do that, then who knows what legal process we'd have to go through to get her admitted.​After a few days of treatment there, my daughter became lucid again. However, she realized that she was in a mental health hospital and became frightened by the people around her. I received a call from her at 9:00 at night telling me that she was scared and didn't feel safe and she asked me to come get her. I hurriedly drove the 45 minutes to the hospital, but when I arrived, they wouldn't let me see her. As soon as she made that call, it started a legal process where they put her on a "hold" until an investigator could come the next day to see if she was able to make decisions for herself. He determined that she was, and let her leave with me to drive her to the residential rehab where she would stay for another month.When she got home from rehab, I asked her if she would be open to me having a limited power of attorney so that I would be able to make sure she got the care she needed if she wasn't aware of her surroundings. She gladly agreed, as she knew I would keep her safe. Please, please talk to your loved ones about this, as well as consult an attorney or appropriate professional about healthcare directives, releases of information, POAs and other options available in your state. This is so important, otherwise they will get sent who knows where when they need help and get lost in the system.  (Note: If your child has anosognosia (i.e., they don't recognize that they have a mental illness), it may be difficult to get their agreement.)

Question 13

Lesson 13: Hope For the Best, but Be Prepared for the Worst

Accepted Answer

I knew that the treatment success rates for people with schizoaffective disorder and co-occurring substance abuse disorders were low, but I was hopeful after seeing my daughter thrive during some of her up periods. However, after going to three in-patient programs, a stay at a mental health hospital, and attending numerous outpatient programs before she had reached the age of 22, she was tired. I saw the light go out. Every day was a fight for her, and she seemed to lose the energy for it. Even though she was still going to work and taking her medicine and going about her life, I could tell she'd given up. A few weeks later she relapsed hard, and overdosed on fake Xanax that was made of bromazolam and clonazolam (fentanyl isn't the only thing killing our loved ones).Although my beautiful daughter didn't make it, there are many who do every day. She was very proud of her periods of recovery and always tried to reach out to others. So that is why I created this site—to continue her mission so that other families may achieve a better outcome.

What I Learned

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