His Drums Fell Silent, the Voices Still Speak

In November of 1990 we opened our first Ladder Home. I convinced Jon to move there where I knew he would get support and live in a quality, affordable, appropriate home. Since I was co-founder I did my best to stay out of Jon’s business and let the house managers support him. Unfortunately by this time Jon’s illness was so severe that nothing much could be done for him. No medication alleviated his voices/delusions. It seemed that all hope was gone

On Easter Day 1991 Jon and I joined the family at my parent’s house to celebrate. Jon stayed for only an hour or so and then asked me to take him home. In the car he said, “I really want to be with my family, but it’s so depressing to be around my cousins who seem to be happy and successful while I’m just stuck. If things don’t change in the next month or so, I’m going to take my life by shooting myself.” This was not an unusual statement for him. He often indicated similar thoughts.

Several weeks later Jon admitted himself to the hospital on his own without my assistance (or insistence). For the first time since the onset of his illness he had decided to work with the doctors in terms of his medication, believing that the haldol needed to be increased. I was encouraged and felt that this might be a turn for the better.

I was surprised when, on April 29, 1991 I received a call from one of the support team members, stating that the hospital psychiatrist had requested a meeting with me, the support team, and the mental health system psychiatrist. I indicated that at the time I had not planned to request a meeting, but if the psychiatrist thought it necessary, I would make arrangements to get off work. The meeting was to be held at 9:30 on Tuesday, April 30.

While I had never met the hospital psychiatrist prior to this meeting, I had heard about him from members of the local NAMI (National Alliance for the Mentally Ill) support group. He had spoken to the group earlier in the year and had infuriated them with his outspoken criticism of family involvement in the treatment of persons with mental illness. Regardless of this, I was impressed that he had chosen to call a “team meeting” regarding Jon and went into the meeting determined to do my best to keep an open mind. I believe that I approached the meeting with a cooperative attitude, as I had done throughout my involvement with both the mental health system and the hospital. I had no reason to expect anything less from the other participants in this meeting.

Initially the hospital psychiatrist addressed the issue of Jon’s medication. He had decided (over Jon’s protest) that Jon was not capable of consistent oral med compliance and would be starting him on monthly injections. Jon did have a history of this, although the whole point of admitting himself to the hospital at this time was based on his recognition of needing more medication. Jon had come a long way in the previous six months in accepting his mental illness. While I was a little disturbed at the doctor’s rather arrogant and inflexible attitude, I nevertheless simply asked several questions about side effects of the meds and the length of time it should take for the meds to take effect. The psychiatrist then asked me what I thought to be a strange question. He said, “Are you comfortable with the mental health system psychiatrist and Jon dealing with his meds?” I couldn’t understand why the question was asked, but answered, “If Jon is comfortable, so am I.” Jon just sat there in silence.

Then the attack on me began. The hospital psychiatrist brought up the issue of Jon’s living in the Ladder House. He said, “Jon doesn’t need the structure and rules and regulations of the Ladder house. He is perfectly capable of independent living. Your involvement in the house is a problem for Jon.” When I began to question the basis for his opinion, especially since he admitted he didn’t know much about the Ladder program, he brought the rest of the “team” into the conversation to substantiate his claims. From then on the conversation deteriorated into an argument for over an hour, with the team questioning my involvement in Jon’s life and my defending both that involvement and the Ladder House. The hospital psychiatrist remained in control of the meeting, treating me in front of my son in an arrogant and condescending way. I was told that my involvement in the house was allowing Jon to get away with breaking the rules, that I was too involved in Jon’s life, and that I could not be both a mother and an advocate. They said, “Every time you get involved in advocacy it makes it awkward for Jon.” This was denied by Jon, which they ignored. It was also denied by me, which they refused to accept.

I finally just shut up, tears falling down my cheeks. (When I am really angry my response is usually crying instead of shouting.) Clearly I was upset as was Jon. He had admitted himself to the hospital because of suicide ideation and desire to get help and a day later he was subjected to watching his mother being harassed by the very people who were supposed to be helping him. In addition, his own opinions on meds and on the issues brought up were ignored.

Finally Jon stood and said, “Come on, Mom. We’re getting out of here.” He took my hand and led me out of the room. Jon spent one more night in the hospital and then, against the doctor’s recommendation, signed himself out. Any trust he had in the hospital or mental health system was gone. He wanted nothing more to do with any of them. He had, in effect, lost any little bit of hope he had that things could get better.

I hugged my son and told him I would pick him up in the morning and take him back to his room at Ladder. I tried to keep it together in front of him. But when I got to my car I closed the door and just lost it. Once again the “system” had failed my son. Once again they thought they knew what was best for him without listening to him (or me) and at least taking our opinion into consideration. I was so agry. We were treated with such disrespect. After years of fighting for my son, of trying to work with the “professionals” to help my son, I, too, felt helpless, hopeless. My anger and frustration and my deep love for Jon David engulfed me and screams poured out of me as I slumped in my car. My anger and pain pushed out the tears that had so often been held inside as year after year I fought for my son. Now what?

As I’ve said before, if I had known what I know now I would have fought harder against the system. I would have refused to accept the passivity and negligence of those who were required/paid to help my son, but too often let him fall through the cracks. I would have been much more of a “mama grizzly.”

Would it have changed anything? I don’t know. That is my regret. However, I have come to peace with my failures. I know I did the best I could with what I knew at the time. And I know I loved him unconditionally and would have given my life for him.