Archive for the 'Recollections' Category

Trouble With Georgia Medicaid

Wednesday, December 12th, 2007

Medicines Abilify and Zyprexa

After DS’s first hospitalization I went through a great deal of trouble to try to get his medication for him. First the drug store we usually used did not have Abilify in stock. Also, they said there was going to be trouble with Medicaid paying for it. Apparently they had some kind of computerized or telephone communication with Medicaid. It took me days to understand what they trouble was. I was still putting the pieces together six weeks later after his second hospitalization (story to come).

I had had enough for the day, when the drug store could not fill the prescription. I went home with every intention of putting it on the top of my list of things to do for the next day. DS was bothered by the issue, and despite my explanation he wanted to make an attempt himself to have it filled at another drug store. He got in his car to drive to it.

I was worried about him driving or even being alone, unsupervised, outside of the house. While he was gone he got a flat tire. I had to get the little ones in the car again and pick him up. What a day.

The next day I tried to deal with the issue of getting his medication. The office of the psychiatrist DS was seeing before going into the hospital said they would not help because it was an issue for the discharging physician at the hospital. That only made a little sense to me because this doctor, whom I will call Dr. DB, had actually recommended Abilify the last time we had seen him, pre-hospital.

Next I called the office of Dr. V, the discharging hospital physician. Even when given some time, the staff person had difficulty discussing anything that the doctor did in the hospital because communication with the hospital was not good and apparently not much better with her employer, the doctor. The staff person said they would call Medicaid and try to find out what was happening. Nothing was resolved that day. I went to the drug store in the evening (a new one that had Abilify in stock) to pick up DS’s dosage for that one day. I was going to pick up his medicine one day at a time because I had also learned that day that it was $20+ per day or per pill to take. We could not afford to pay a whole months worth. I was hoping things could get cleared up in a day or two.

After doing that for a couple days, Dr. V’s office offered us free office samples. I had to drive to Austell, about 45 minutes away, to get them. They gave us a two week supply. Then this particular staff person apparently went on a long vacation, and this doctor’s office became particularly uncommunicative. I do not know if it was apathy, incompetence or a ruthless concern for their bottom line. I seriously considered filing some kind of complaint against this doctor with somebody, but I was too overwhelmed day-to-day with DS and his problems to take any kind of action to find out how to do that.

I tried to deal with Medicaid directly, telephoning them. I learned the objection that Medicaid was raising to the Abilify is they felt a cheaper drug such as Geodon should be tried first. I told them it had been tried in the hospital. I did not know what to do to make something happen. I tried calling the hospital and asking them to talk with Medicaid on my behalf. Finally about six weeks later in dealing with a different medication problem with Medicaid, I learned that as far as Medicaid is concerned, a doctor’s office must file the appeals and paperwork to make them reconsider a case. I could talk until I was blue in the face, and they would not take action.

In the meanwhile, DS’s symptoms were gradually worsening. I was in communication with his first psychiatrist, Dr. DB. Through his office we got more office samples. I still have about $300 worth of office samples in my house that I guess are going to get thrown out when they expire.

There were a great number of things going on at this time, but as far as the issue with Medicaid and Abilify was concerned, it was never resolved. I tried writing a letter to them sending it to two different addresses because I was not sure which one was the right one. I never got a response. I found out about an organization called Rx for Less that would help to pay, but I needed a letter from Medicaid saying they were not going to pay. As it turns out, DS continued to worsen while taking the Abilify and entered the hospital again. There his medication was changed again.

I dread ever having to call Georgia Medicaid about anything.

First Hospitalization June 2007

Tuesday, December 11th, 2007

Wellstar Hospital in Austell, GA

DS (my dear son) went into the hospital for the first time in 2007 with extreme delusions, hallucinations, paranoia, you-name-it.

DS was admitted on June 2nd and discharged on June 19th. The hospital is called Wellstar Behavioral Health and it is in a separate building behind Wellstar Cobb Hospital. Only two visitors over the age of twelve are allowed at a time during very strict visiting hours that occur twice a day for an hour and a half each spell. Patients are not allowed to have any belts, strings, shoelaces or anything sharp. Razors and things that are considered “sharps” like fingernail clips are kept in their own tiny locker that only staff can access. They must be watched while they shave. Of course, security is good, with the doors being opened for visitors by staff members with keys.

I tried to visit DS two or three times a week which was very difficult with the distance and the fact that I needed to get a babysitter for his five-year sister and two-year old brother each time. My husband was working horrid irregular long hours.

For the first week nearly every day felt like a crisis because DS would telephone me and say he was being discharged. We did not have a clue when he would be discharged. I left messages with the doctor three times to call me. He never did. (That is very typical doctor behavior I came to learn.) At the same time DS would be saying things like how filthy the place was with drugs all over everything. At times he thought the other patients were hostile towards him, organized in gangs. I did not know what kind of treatment DS was receiving other than what he told me: Zyprexa, Geodon, and eventually Abilify. Also he went to group therapy.

One time when I visited him in the first week I brought fingernail clippers that he had requested. The nurse refused to take them (to put in the sharps locker) saying, “he won’t be here that long.” Three or more days went by and I tried to bring him fingernail clippers again. She started to say the same thing, but I insisted she take them. We were met by DS in the hallway after we got in. He started saying some things to her about his latest delusions. My eyes met with the nurse’s and she seemed to say without a word, “he will be here a while longer.”

On Saturday, I got a call from DS saying he was discharged. By this time I was learning not to panic when he said that. I called the hospital to confirm the fact, and a social worker told me it was true. It was done. Come pick him up. I said, “How could this be happening? We never had a family meeting. I was told there would be a family meeting with a social worker. DS cannot come back home to live. He has a little brother and sister. He told me he hopes they have been practicing being quiet, with a threat implied.” She asks how old little brother and sister are. Silence. She says she will call the doctor. The rest of the day feels like playing chicken with the hospital. Who will flinch? I wonder if they will just put him out on the street since they discharged him. By Sunday I had learned he was undischarged. (I sympathize with whoever had to do the paperwork.) On Monday I spoke with another social worker. They were going to work on finding him a personal care home.

By the end of the week no PCH home was found. The following weekend he was having delusions about rapes occuring in the hospital. He wanted me to bring him a sleeping bag. He also said someone was stealing his weight off his body. (Interesting idea. I wish someone would steal some of mine.) I called the staff to tell them. I was actually concerned about the idea that some kinds of assaults were occurring, but the staff person I spoke with was certain nothing could have happened with all the monitoring cameras they have, etc.

The next day a social worker told me there was nothing more they could do to find a personal care home (PCH). There were no available slots, and the doctor was going to discharge DS. They promised that BH of Altrus was on the case and would continue to hunt for a PCH after DS was discharged. They had mentioned an excellent outpatient program at Windy Hill called OCS (Outpatient Counseling Services) at the Hope Program, I think. It was too far for me to drive him everyday, and since we lived in Cherokee County and not Cobb County transportation would not be provided for him to go. They made an intake appointment for him at Highland Rivers in Canton, Cherokee County, closer to home, for follow-up care two weeks away. I was worn down by then and resigned to bring him home.

He was discharged on Tuesday, June 19th 2007. I had to bring little brother and sister with me, so they brought DS out the security door with his stuff. After signing his papers and getting his prescription papers, we headed for the car. We ended up in horrible afternoon rush hour traffic in a thunderstorm. Little brother cried, or should we say, screamed, for at least 45 minutes straight. I was nervous about DS’s reaction to all the noise, but he was on his best behavior because he was just so glad to be out of the hospital, I guess. My nerves were feeling rather shot. We went home to get some dinner first before going to the drug store to fill his prescriptions. Why do hospitals always make us have to deal with filling prescriptions the very hour of discharge?

At home I wanted to get the little ones some dinner right away since it was past time. As I struggled to get things on the table and on the plates, DS was interrupting me constantly. Mostly he was demanding me to bring cleaning supplies to him. He was extremely agitated. He could not touch anything because everything was contaminated with drugs from the hospital. If he tried to clean something he would touch it and contaminate his hands. Then he had to wash his hands. He has lived in this house his whole life and was asking, “where is this or that.” The very moment the children finished eating, I took them and left the house.

We dropped off the prescription for Abilify at the drug store and went to the library. In the library I hoped to get some peace and quiet and pick up some books, too. Unfortunately the two-year old was in a mood to be rambunctious and despite my efforts to settle him down, the librarian came over and said some things that embarrassed me. We left.

We went next door to a playground, although it was raining. I could not think of where else to go and it was too soon to go home. I sat in the rain and called the social worker at the hospital. Of course, it was after hours so I got her voice mail. I said to her voice mail, “Well, here my children and I are sitting in the rain because DS has run us out of our house.” I was angry at them discharging DS too soon and dumping him on us. I regret taking my anger out on the social worker. It was the doctor I was really mad at. I never heard anything from that social worker or heard her name mentioned by any other staff at the hospital again, during other hospitalizations DS had. It makes me wonder if she found a new job.

The thunder had stopped by then (or we would not be outdoors), but the children got thoroughly soaked. They loved it. The two-year old did not even mind falling face first in a mud puddle. I sat there and sobbed out loud a little but not too much to try not to distress them.

When we went to the drug store, we could not pick up the medication because they did not have any in stock.  When we got home DS seemed a bit calmer because he had finally managed to clean most everything to his satisfaction, I suppose. The clothes washing machine was running.

This was the first hospitalization of four that DS had in 2007.

Leading up to First Hospitalization 2007

Saturday, December 8th, 2007

26 May  – 1 June 2007

 DS asks me to come to his room. He asks me if I hear the neighbors. (We live in a single family home a dozen yards from any neighbors.) At first he tells me he is hearing them, then he says he thinks they are listening to him, like on a two-way radio.

This is the first major clue to me that we are dealing with  psychosis or schizophrenia again. (Eventually, I am told schizoaffective disorder.) He says he does not want to see the doctor. This week becomes a week of ultimatums between DS and us, his parents. See the doctor or be homeless. Take your medicine or be homeless. Pain. Turmoil.

He finally agrees to take the medicine and go stay at his grandparents (my parents). Too little too late. Two days later I get a telephone call from my mother. DS is saying there is methamphetamine on the floors and countertops and all over her house. He fears he is high from the drugs because he thinks they get into his bloodstream when he touches them.

When his grandfather (my dad) gets home, DS agrees quickly to go to the emergency room because he fears he is high. I call my husband (DS’s father) at work and he agrees to go to the emergency room to meet them when he gets off work. From the emergency room at Kennestone Hospital in Cobb County, Georgia, DS is transferred to Wellstar Behavior Health behind Cobb Hospital. This is what used to be called a mental hospital, I guess. It is a separate building behind the regular hospital. Dad and hubby are told it is DS’s best option since his only insurance is Medicaid. They sit with him in the emergency room until 3:00 in the morning waiting for the transfer. They are told there is no point to following the ambulance to Wellstar Behavioral since they will not be able to visit him for quite a few hours.

He entered the mental hospital June 2nd.