This week I am a little discouraged and very sad. Let me start by telling you about the awesome care we received while living in Louisiana.
Brother got all the medication he needed on time, every time. He had monthly meetings with the doctor. And he had weekly meetings with his counselor. And once the counselor got Brother's thoughts on things, I was usually asked to come in to talk about how things were going. I felt like they truly cared about helping all of us cope with the mental illness that we were living with.
Once, when I didn't know Brother had stopped taking his meds, he called the police. His illness and his imagination had gotten a hold of his thoughts and he was afraid. He knew who his counselor was and luckily he told the police his name. The police called the counselor who then called me and let me know what was going on. It was a holiday weekend and he told me to get Brother back on his meds and he set up appointments for both of us the very next day that they were open.
It was scary for me, I can't imagine what it was like for Brother. But we made it through with very little damage to our relationship and that was a relief. It could have been so much worse. He could have run away and I'd never see him again. He could have been arrested and not treated or put into a hospital - which is his #1 fear.
Like I said, we made it through and now we do make sure he takes his meds. We do the best we can with the services we receive. But lately, it just isn't enough.
Now I'll tell you about the treatment we've received since moving to Mississippi.
First, we thought he'd have sort of an adult day care to go to for people just like him. With the government cuts to the mental health system, this service was shutdown the month we moved here. I was no longer a part of the counseling, even though I live with him. His counseling was cut to maybe once a month, his doctor visits, once every two to three months.
Also, his diagnosis was changed from paranoid schizophrenia to schizoaffective disorder...without my knowledge. Now while they are very similar, I still know Brother to be very paranoid. And they do treat these basically the same, but the way most people think of it is different: schizoaffective disorder (as I understand it) has to do more with moods and paranoid schizophrenia has to do more with genetics. Like I said, this is as I understand it. I may be wrong. I'd like for someone to tell me if I am.
Then we were moved to a different clinic when we bought a home out of the city limits. Our first visit there I was asked to come inside with the counselor for his intake. I confirmed our address and phone number and such. Then the counselor said something that broke my heart. She said "The previous doctor noted that a few months ago you were having suicidal thoughts. Is this correct?" I was shocked! I hadn't heard this. I had no idea my brother, whom I lived with, whom I love very much had thought of taking his life. Why didn't I know this?! Why didn't the doctor contact me immediately? Am I wrong to think that as his primary care giver, I should know if he is this sad?!
And that was the last time I know of that he had longer than a five minute conversation with his "counselor". It's been over a year since this meeting.
I called once, about six months ago. I left a message for her, asking for counseling. Telling her that he seemed sad and more than normal paranoid. I left my number and name. I've never received a call back about this.
We have been days before, just worrying if he will get his meds refilled before they run out. This in itself is so scary. Especially since we went through the police call situation.
So, I want to find him better doctors and an actual counselor. I called another mental health clinic in our area. First she asked what insurance he has. I told her only Medicare. They don't accept Medicare. I asked if we could pay cash. The answer was no. If a patient has insurance, they MUST use it, but since they don't accept what he has, the answer is no. I asked if this new "Obamacare" insurance was an option. What if I got him a different kind of insurance through the marketplace, would he be able to come to you then? "No, I'm sorry. We can't help you." Although, she did give me a student counseling number at the local college, so I guess that was some help.
Now let's talk about the shootings and killings going on all over our country. Have you read the articles? Do you know that several of the people asked for mental health help weeks or months before doing these terrible things?
The elderly, military, and mentally ill in our country have the lowest form of medical insurance (in my opinion) and these are the people who need it the most. What if we helped them before they made terrible decisions and killed others or hurt themselves? What if we didn't shoot them and kill them before we knew what is going on in their minds? What if we actually took care of these people and prevented mass killings?
In my experience with mental illness these are the only ways you can get help, real help: You have to be extremely wealthy, or You have to be homeless and very poor, or You have to have a specific type of insurance.
What does this say to these people who ask for help and never get it? The answer: No, I'm sorry. We can't help you.
I am so sad and heart broken that my brother doesn't get the care and treatment he deserves and needs. But we are some of the lucky ones - we have a roof over our heads, food to eat, and love. There are many out there who do not have this much.
Please if you know someone who needs help, please, please help them.