THE STIGMA OF MENTAL ILLNESS CONTINUES
Ryan was getting more delusional, and we had the crisis team come in to evaluate him. Jeff met them at the group home, and told them that Ryan needed to be hospitalized. But this time was a little bit different. Ryan never went off his medications, and what he had in his system was doing some good. We noticed Ryan came in and out of psychosis repeatedly, instead of remaining psychotic. One minute he was talking about his six wives and six children, but later on, he knew that was not true. Yet, the delusions kept coming (and going), and we still felt he was unsafe in the community. During this period, Ryan had signed up for classes at the local university, and was issued an ID with a different name. Nothing ever came out of that.
The crisis team concluded that Ryan wasn't bad enough to be hospitalized. We disagreed. We felt Ryan was tricking them. According to the crisis team, Ryan needed to do something in danger to himself or others, before he could be hospitalized. I believe that the individuals who make these laws are clueless. If they were to experience the unbearable stress this puts on the families — not to mention, the absurdity of inviting danger — the laws would change. Right now, the patients have the laws on their side. But the laws are not always in the patients' best interest, and that leads me to believe that, unless you've gone through it, you can't understand how bad it can get. The bottom line is, we just want to keep our loved ones safe, but the system doesn't let us. We are at its mercy.
We had been through this so many times by then, that we knew it didn't get better on its own. I tried calling Ryan's psychiatrist, but kept getting voice mail. I left a long, detailed message. I explained that the crisis team was not seeing what Jeff and I were seeing. Ryan was able to answer all of their questions, but soon after the crisis team left, Ryan was insisting his real name wasn't Ryan and his birthday was in July, not August. Finally, I totally lost it on the phone. I broke down and cried, begged, and pleaded for his doctor to section him. I asked, "Why do we have to wait for something horrible to happen? Please help us help our son now." I got no response.
So... something horrible happened. I got a call from the group home manager explaining that Ryan had removed and disposed of a bunch of smoke detectors from the group home, and the building owner was pressing criminal charges against Ryan. I was furious. This all could have been avoided, if someone had just listened to us. The worst part of this experience was witnessing how the system set Ryan up to fail — and then blamed him.
Ryan was able to remove the smoke detectors from common areas in the building (he did not remove any from client bedrooms), over a period of several days, and dispose of them in the dumpster. The fact that nobody saw this happening, doesn't say much for the staff. A lot of the time, they are on their cell phones or watching TV.
Finally, Ryan was hospitalized. I got several calls from the administrators of the group home, informing me that Ryan would not be allowed to return. He would have to go to Respite - a step-down program sometimes used for DMH clients when they’re released from hospitals. When I asked who had made that decision, I was told there was a team involved — a team of DMH and BAMSI (group home vendor) administrators. They even threatened to evict him.
While hospitalized, Ryan got in touch with the Disability Law Center and the Committee For Public Counsel Services. He was advised not to go to Respite. I did some research and discovered that Ryan has a lot of laws protecting him. The group home cannot just tell him to leave. That's his home. It would necessitate a court hearing. When I spoke to a contact at DMH, I was told there would be a meeting for us to attend with Ryan. I made it very clear that I didn’t want Ryan moved from his group home, mainly because most of the other homes are in very unsafe areas. I never heard back from DMH, and there never was any meeting.
Ryan appeared at a hearing with a court magistrate about the criminal charges. Ryan apologized to the court officials and the fire chief. He explained that his illness affects his reasoning, judgment, and sense of reality during a psychotic episode. He described how these behaviors are uncharacteristic for him when he is stable. The court decided that the charges would automatically dismiss with no police record in six months, if Ryan stayed on his treatment and stayed out of trouble. We all breathed a sigh of relief six months later.
During every psychotic episode, abusive incident, lack of response from clinicians, or difficult period trying to access appropriate services for my son, my heart breaks a little bit more. The people who are supposed to be helping my son have sometimes made things worse. One of the BAMSI administrators told my husband, that we’re not doing Ryan any favors by educating him on the system. I really didn't appreciate that remark. Jeff explained that we aren’t the ones educating Ryan. Ryan is very smart and educates himself. Ryan has gotten workers suspended and terminated because he knows his rights, and because those people deserved it. For that reason, he’s seen as a threat by some administrators.
We need to remember that people with severe mental illness have been dealt a very tough deal in life. Through no fault of their own, they have a disease that prevents their brains from working properly. They should be treated no differently than a diabetic needing insulin or a cancer patient needing chemotherapy. But, the stigma of mental illness continues, due to ignorance. I hope and pray better days are ahead for my son and others who require mental health services. It's certainly not their fault, and we need to help the public understand that.
Tewksbury State Hospital, Tewksbury, Massachusetts - Ryan's home for more than a year