The Following is a message someone shared with an advocacy group that was later published. I share with you to hear this story of resilience.
All identifying names and identifying information have been changed.
Hello to all of you who have been on John’s journey in some way,
I have been thinking about writing to you all for a while. While my motivations have shifted along the way, I now feel compelled to reach out and fill you all in with an update, some thoughts and maybe some helpful feedback. Some of you may read all of this and some may not. That’s ok. I’d like to think most of you will finish it at least out of curiosity and maybe the desire for it to help you in your work.
I want to thank you all for your efforts whether they worked out or not with John. Hindsight is always 20/20. Everyone is here to learn something. There are several of you on this email. Some of you have had more recent contact with us than others. Some of you are more aware of the happenings of the past 2-5 years than others. My goal here is to fill you in and maybe enlighten you in some way, should “another John” and his family come your way. I don’t doubt all of your experience and qualifications. But in my nursing career, I was always grateful for feedback from family regarding patients I cared for in the hospital or students I cared for as a school nurse. So I hope you will indulge me-because you are the ones who help not just the “John’s” but their families and I think our experience could be of help to others.
This journey has been brutal for everyone in our family-but no one more than John. Looking back, had I known about things like Schizoaffective Disorder, prodromal phase, the prominent focus of many “dual treatment” centers, guardianship, the drug called Clozapine, APA guidelines, listening to my gut, etc maybe he would have gotten what he needed sooner. But what parent educates themselves about that just because? When John went to Legacy, I had a bad feeling. Steve admitted to me recently that he did too. But we were so beaten down that we took well meaning advice and didn’t listen to our own parental instincts and intuition, which were better than we were led to believe. Plus, at that point we didn’t know what else to do. When I saw that first picture of him on top of a mountain in Utah my first thought was, “He’s really sick!! What is he doing up there?”. But I continued to ignore that nagging feeling in spite of his letters begging to come home, which we were told was manipulation. So he (and we) suffered for almost 3 months until he was tested and diagnosed. I appreciated it when more than one of you told us “it is a marathon not a sprint”. And one of you encouraged us to get our own support. Another of you told us that family support for John would be important. But I still didn’t realize the seriousness of the diagnosis. I had a lot to learn-the hard way. By then he was exhausted and also not properly medicated and so all the therapy in the world at Legacy, Discover, Providence Farm or anywhere was not going to help him. He wasn’t in a headspace to accept it. I believe his suicidal ideation was there all through Legacy (and before, maybe even when he was at Bradley) up until he got to treatment in Arizona in 2021 and was finally medicated with the right medicine. I also believe that he, as do up to 50% of people with Schizophrenia, had anosognosia. I hope you all know what that is. If you don’t, no judgment, I find many professionals don’t, but look it up. He didn’t believe he was sick and would never stay on his medication. Lack of insight. So when he left Providence Farm and came home, we couldn’t get him to keep taking it. John has been hospitalized 8 times since this all started.
Here is some of what has been going on for John and all of us.
8 hospitalizations
Several appearances in court by Steve and me to get a writ, only to have him discharged from the ER in time for lunch
Covid and all that came with it in the ER’s, hospitals, limitations, etc
Back and forth always prescribed Abilify or Risperdal, no interest from hospitals in our input
Verbal and physical abuse of his parents and brother
Orders of protection
Blank County jail-we dropped battery charges when we saw this was not panning out to be an avenue to get him the help he needed
6 months, we put him in different hotels, which led to 6 different destroyed hotel rooms
Developed relationship with local police department and wonderful social worker, Mary connected us with a Home Health Care-social worker, amazing. They were huge supports and got John Medicaid and connected us with wonderful lawyers and she also visited John, among other things. Mary was always there supporting us in our interactions with the legal system.
Got guardianship-wow, suddenly within hours healthcare professionals are giving us the time of day!! So wrong, those “HIPPA handcuffs” as I have heard parents like us refer to HIPPA.
One Residential Home for 6 months-There, he was medicated on Abilify oral and injections and Topamax. We did not see much improvement except he wasn’t aggressive. He refused to come out of his room except to use the bathroom and get his meds. We tried to work with the home to let him get his meals in his room or eat before or after everyone was in the cafeteria. They were not very responsive. Even though food was “not allowed in the rooms”, they turned a blind eye to our bringing him big grocery bags of non perishable food every week because it took the responsibility off of them. I doubt many other people there had families that really even cared enough to visit. We visited John once a week and took to a home where we all had dinner. It was clear he was still psychotic and delusional. He would shower at home because he was too afraid to shower at Clayton. My relationship with the psychiatrist there was difficult and strained, even though we had guardianship. His case worker was very kind but overworked. I just knew this medication was not right and Rispardal hadn’t been much better. I was also sure he was still suicidal. He kept asking to come home to “take care of business”, and talking about the nearby train station.
At some point during all this, I gradually took back some of my power, reading all I could about Schizophrenia and listening to podcasts. I have now been going to Families Anonymous for 5 years. I couldn’t have gotten through this without these people. Someone at Families Anonymous recommended NAMI. We took the NAMI Family to Family course. I learned many important things, 2 of which are that family members of mentally ill people are not always in the same place of acceptance and also that “dual diagnosis” treatment centers are NOT always dual diagnosis. I realized that John’s next treatment place was going to have to emphasize the mental illness part FIRST. That meant that their website would need to speak to it clearly and visibly, specifically naming Schizophrenia/Schizoaffective disorder as something that was treated. Also, if there wasn’t a psychiatrist on site or at least very close by who would see John on a regular basis, then the place wasn’t even open for investigation. I also became very friendly with both NAMI class teachers. One of them recommended a great therapist who I still see. During this time, I found a Facebook support group called Support Group For Family and Parents of Bipolar or Schizoaffective Disorder. This led me to another group that I highly recommend you check out as it is not just for family. It is called Team Daniel and the Clozapine Community. You could also check out Team Daniel Running For Recovery From Mental Illness .
I also learned about the drug called Clozapine. I learned about the difficulties in getting it and the reasons it fell out of favor. It can cause agranulocytosis so it is part of the FDA’s REMS system which has been responsible for many problems for people like John who desperately need this medication. Bloodwork is required weekly at the beginning and then monthly, pharmacies must be certified in REMS and it is more work for psychiatrists to prescribe. But the American Psychiatric Association recommends it for treatment resistant Schizophrenia. In fact I am part of a group called The Angry Moms that protested at the capitol in DC on May 24th (unfortunately I was not able to go) to get rid of the REMS requirements for Clozapine. I just put in an email to Congressman Brad Schneider and sent a snail mail letter to the FDA, as we are as we are pushing this from all angles. We are all hopeful about this-the FDA seems to be listening. Also Clozapine must be very slowly titrated and side effects managed with other meds. John is on Metformin and Topamax along with a couple of other adjunct meds. How do I know any of this? Dr. Robert Laitman’s son Daniel (Team Daniel) has Schizophrenia and he and his wife Ann also a physician have become experts in managing Schizophrenia Schizoaffective Disorder and Bipolar with this med. Their backgrounds are not in psychiatry, but they have a son who suffered for years from Schizophrenia until he started Clozapine. I suggest you check out some of these resources, or at least pass them on to the parents you help.
Meaningful Recovery from Schizophrenia and Serious Mental Illness with Clozapine (Lewis A. Opler, MD. Phd. , Robert S. Laitan, MD., Ann Mandel Laitman, MD., Daniel Laitman, B.A.)
The Clozapine Handbook (Jonathan M. Meyer and Stephen M Stahl)
I’m Not Sick I don’t Need Help: How to Help Someone Accept Treatment (Xavier Amador, Gary Chambers)
Team Daniel Facebook Community (this Facebook group is not just for parents-it is for those with illness and professionals as well)
On the Team Daniel Facebook Group, I also learned about a treatment place called Viewpoint Dual Recovery in Prescott, Arizona. (Yes, this place is the type of dual recovery I was referring to) They are experts at what John needed. Viewpoint IS certainly dual recovery-but the mental illness aspect does not come second there. It is right up there with the addiction. He saw a wonderful psychiatrist every week, had a therapist he connected strongly with and went to groups every day. He also got along well with all the guys in his house. We visited John every 3 months and each time saw more and more improvement.
In Prescott AZ, John worked at McDonalds for 3 months-it ended on a bit of a sour note, but we were proud of how he handled it. When the job ended he was about to have surgery for a broken lower fibula and talus bone in his foot that he injured playing basketball (silver lining-he was playing basketball!!!). It had not healed properly. Unfortunately, his leg will require another surgery. So we brought him home on July 1st. Viewpoint felt he was ready and in a good place. We decided it is too hard to manage surgical care long distance. It may surprise some of you to know John is doing well. He seems to have developed some amazing insight. We spend time with family and they all comment on how well he seems. He is kind and easy to have around. We will take one day at a time as they say, but today he is good. He is seeing a therapist here that he likes and a PNP who is prescribing his meds as they did in Arizona. He and his therapist are investigating IOP’s and we are navigating the orthopedic stuff. He goes to Lifetime a few times a week by himself (no cardio just weights) or with Steve and works out. We have gotten him on SSDI (disability) but are hopeful that he can go back to work in some capacity after his leg is better. As they say at FA-one day at a time.
OK, for those of you who are still reading this, I know it was wordy. Thank you. I am grateful for all your work with John. I hope you don’t think I am telling you how to do your jobs. I just really feel strongly the need to tell you our and John’s story. Because I know there will be others like him who could be helped by it.