WHAT I'VE LEARNED ABOUT OUR BROKEN MENTAL HEALTH SYSTEM
During the eight-year period of Ryan's many hospitalizations (14, if I'm correct), I got to see first-hand how broken our mental health system is.
After Ryan experienced his first psychotic break at nine years old, nothing prepared me for what was ahead. We had seen his deep depression, knew he had intrusive thoughts, and lived with his behavioral issues. But I wasn't aware of the extent of what his medication was doing. We had never seen a manic episode until he decided to go off his medication at 25. What followed were eight years of pure hell for us.
We soon learned that the only way to get Ryan help was to call the police. An ambulance would arrive with a police car, and the police would begin questioning Ryan. Over time, Ryan got very good at tricking people into thinking he was okay, when he was actually very sick. Most times, Ryan would go into the ambulance, which transported him to the nearest ER. But once, he took off running down the street, until the police caught up with him. Since we were calling the police on a regular basis, they became familiar with Ryan. They knew he had a severe mental illness. Yet, we were told, "You had better do something about this,” — as if we could control Ryan's mental state.
I enrolled in a NAMI Family-to-Family twelve-week, intensive course, to learn all I could about mental illness. When I asked Ryan's DMH caseworker about group homes, she told me, "There are no group homes." That statement was very misleading. Granted, there was no list for getting into a group home. But there were indeed group homes. They were available to those coming out of long-term stays in a state hospital.
Ryan's hospitalizations had begun in private hospitals. There were many. I soon learned that abuse is rampant in psychiatric facilities. Once stabilized, Ryan told me his stories regarding the details, and some things I saw for myself. I have since learned that all of these incidents should have been reported to the proper authorities. But we were new at this, and didn't know that at the time. The following list is what we have encountered:
1) At Faulkner Hospital in Boston, MA, Ryan was placed on one-on-one watch while psychotic. The security guard watching him refused to let Ryan use the restroom. Instead, he made Ryan urinate on the floor and clean it up afterwards.
2) Psychotic patients are known to have outbursts. I'm sure it’s a difficult job to work in a psych ward, but these nurses are paid well, and get to go home at the end of their shift. They, obviously, have the better deal. However, their behaviors are sometimes worse than the patients. Instead of trying to de-escalate one particular adverse situation, a nurse at Norwood Hospital said, "Ya know, Ryan, at the end of the day, I get to go home to a family who loves me. But you have nothing, and you'll never have anything in life."
3) Another time at Norwood Hospital, when Ryan was coming out of mania, he was looking very disheveled. He needed a shave and a haircut, and he hadn’t showered yet. A male nurse said to Ryan, "Oh, well, don't you look like the next serial killer." Ryan was very hurt by the nurse's comment and called me on the phone. I immediately called to speak to the nurse. I told him his comments were hurtful and inappropriate. I said, "Maybe next time, you'll think, and show some compassion." The nurse replied, "You're right. I tried to apologize to him, but he walked off." I explained that I didn't blame Ryan for walking away. I said he did that because he was so upset. I also pointed out how fortunate the nurse was that he was healthy and able to work. I let him know that my son isn’t able to work because his illness is so debilitating. Ryan didn't ask for this illness, but sometimes he’s made to feel as if he did — as if it's his fault.
4) The whole situation with the ER serving as a holding place is a horror show. Ryan has spent up to six days alone in a tiny room, with only a gurney, waiting for a hospital bed. I’ve heard that sometimes insurance companies will refuse patients, if they’ll get paid less by MassHealth (Medicaid). In the psychiatric ER, there are no TVs, yet right down the hall, for ER patients who are not psych patients, there are TVs in every room.
Ryan always gets worse in the ER. It’s no place for a psych patient. It's chaotic, with absolutely nothing to do there. A psychotic patient needs a calm, nurturing environment. I can't imagine living like that for even one day, never mind six. Then, if he acts up, they punish him. There’s not much to take away, but I remember they took away his Bible. They also forgot to give him his medication, and I always feel that I have to hover over the staff.
5) Last summer, Ryan's doctor tweaked his medication, because Ryan was still feeling very sedated. Unfortunately, he became manic. His doctor said this was highly unusual. His doctor hoped by adding in more medication, he could stop the episode. But Ryan's illness progressed. Jeff and I were seeing the red flags. Ryan called Jeff at 2 a.m. saying he was lost in Bridgewater. My poor husband had to drive over to the police station, so they could figure out what street Ryan was on and bring him back to the group home. Then Jeff drove back home and had to be at work at 5 a.m. Not fun. But typical of what we parents go through.
TO BE CONTINUED: PART THREE
THE STIGMA OF MENTAL ILLNESS CONTINUES