Archive for December, 2007

Four Police Encounters in Three Weeks – Part One

Monday, December 17th, 2007
police and lightsphoto by Aubrey Tennant

Four Police Encounters in Three Weeks – Part One–
This is the next installment of Recollectionswhere I am catching up my son’s story from last summer. These four encounters occurred between hospitalizations one and two… between June 19th and July 13th. My son’s diagnosis was schizoaffective disorder with psychosis, although no one had told us that yet.

A couple of days out of the hospital my son, DS, was home alone with his father. His father was in the next room when he heard DS’s voice saying, “I would like to report a crime,” and realized that DS was talking on the telephone to the 911 operator. DS was telling her something about there being dangerous narcotics in the house. When DS was done talking to the 911 operator, his father got on the line and informed the operator that DS was having a bit of trouble with reality, having been recently discharged from the hospital. The operator said the police would need to come anyway to investigate. Dad said that was fine; he used to be a police officer himself, and he understood that.

When the officer arrived from the Cherokee County Sheriff’s office, DS told him that the drugs were in a plastic grocery bag with some paperback books in it. These were books that had been borrowed from an informal paperback exchange in his  grandparents’ neighborhood. DS was very concerned about the officer touching the bag because the drugs were so dangerous they were giving off fumes. The officer humored DS by putting on latex gloves and making a careful inspection. He asked DS if it would be okay if he disposed of them properly. DS agreed.

The officer took the bag outdoors and asked Dad to join him so DS would not hear. The officer asked if Dad wanted the books. Dad told him to just take them away.

Another day I had taken my five-year daughter and three-year old son to play at a playground in the early evening. When we got home, I gave them their baths, put them to bed, and got on the computer to take care of some business. I did not see DS from the time we had gotten home and I did not think much of it, assuming he was asleep in his room. At 10:30 pm I got a telephone call from a police officer. He said, “I am with your son.” Of course, I stupidly say, “Which son? DS?”

“Yes,” the officer tells me. “We are down at the Cherokee Recreation Center and he says he wants to get out on his own, but we don’t think he is ready.” There is a family member at home to stay with the little ones so I drive three miles down the road to where the Cherokee Recreation Center is. There are two men and two women standing out in front of the building. I felt like I was running some type of a gauntlet with their eyes staring at me as I walked past them to get to the door. I realized they were probably curious people who worked there, and they had the excuse of needing to hang around to lock up after we leave. (Does it take four people to lock up one door?)

When I get inside DS is there with two Woodstock City police officers.  (Good. A new jurisdiction.) He had his packed suitcase with some clothes and a telephone book.  (I was rather glad at this time that his car was parked at his grandparents’ house, where he was unable to drive it. Who knows how far he would have gotten if he was not on foot?) I actually had to work at convincing DS to come home with me and not be homeless. We left together, running the gauntlet again, and DS gave me the story that he went to the Health Department first next door, but it was closed. When he went into the Recreation Center he waited around for them to unlock the door to the payphone that they keep locked up because they don’t want dirty, homeless people to use it. (I don’t think they have any payphones there.) I can just imagine what clued this good folks in that they were dealing with a mental illness, to prompt them to call the police. A few other quotes I have from my notes around that period is that he wanted me to call him Russet, for russet potatoes. He wanted the story of where his real name came from. He seemed to be suspicious about it, or he just wanted a name change to protect himself from the bad guys out to get him. He told me the architecture of the house was all wrong. It was dangerous to have the clothes washing machine so close to the kitchen. He told me his eyes needed to be checked, he could hardly see and he was bumping into things. I made him an appointment with the eye doctor, but later I had to re-schedule it about three times. (story to come)

I will finish telling my “police stories” in Part Two. In summary, I will say I was satisfied with the kindness with which the police handled these situations with my son.

Schizophrenia and Cancer Research?

Sunday, December 16th, 2007

Now this was the last thing I expected to learn about in research. According to this article at PsychCentral, people with schizophrenia are unlikely to get cancer. There are some very peculiar things that happen on the cellular level. If I may quote:

“It’s very curious that a brain disorder [schizophrenia] associated with very complicated human behavior has at a genetic and cellular level a striking overlap with cancer, a very non-behavior related disorder. Understanding these pathways might provide us with some new strategies for thinking about cancer,” said Dr. Weinberger. 

No kidding. Also, this kind of research can help increase understanding of schizophrenia, and perhaps find a cure for it.

Another reason I wanted to bring up this research is to emphasize to anyone who does not already know, that mental illness is a physical illness. Even though the symptoms may be all behavior related and there’s no blood test for mental illness yet, that I have heard of, it is just as physical a disease as cancer, arthritis, multiple sclerosis or anything else you could name.

HIPAA Not Always in a Patient’s Best Interest

Friday, December 14th, 2007

Today, I received a telephone call from CA, the owner of the personal care home where my son DS lives. She wanted me to sign a form. I did not understand exactly what it was, but I told her to fax it to me so I could see it. The form is very brief. It goes like this:

Designating a Representative

I, (DS’s name), authorize (representative’s name) as my representative. (Representative’s address and telephone number)

To act on my direction in matters of:

  • Health and Well Being
  • Access to any records pertaining to me and my care
  • Receiving information and notices pertaining to my care and condition

Signed: (blank) Date: (blank)

There is also a statement at the bottom that says “I chose not to designate a representative at this time,” with space for signature and date.

I told CA it looks like the signature needed is supposed to come from my son. I wrote my name, address and telephone number in the blanks for the representative. She could have done that. Maybe she was just letting me know that she was asking DS to sign this form? I honestly have a little trouble understanding CA because of her foreign language accent. I believe the purpose of this form is to protect her in discussing DS’s problems with me in the highly unlikely event DS would try to sue her about it.

I have no problem with this form. DS has nearly always allowed me to act as his representative without us signing any form to do it. He is okay with me acting as his representative. It is the forms he objects to.

This form reminds me of the times we have run into trouble with the mighty HIPAA. Of course, you know ( you mean you didn’t?) that HIPAA stands for Health Insurance Portability and Accountability Act. There is a part of HIPAA that has to do with privacy. Hospitals, doctor’s offices and insurance companies are supposed to be very careful not to disclose your medical information with anyone you don’t give them permission to. You must give the permission in writing. Even your family members are not to be privy to your medical problems. Even if said family members are your caretakers. Even if you are mentally ill, paranoid delusional, and certain that that piece of paper some hospital staff member is trying to get you to sign is giving away all your rights to life, liberty and the pursuit of happiness for the rest of your life.

I have been told at different times during the past year that DS needs to have a healthcare power-of-attorney. I was even given some sample forms. Mostly these forms deal with the manner you choose to die if you are diagnosed with something terminal… many pages of it. I could not bring myself to go over these papers with DS. I read them… boy, that was a chore… and they said nothing about anything that would help us with DS’s mental illness. Good luck trying to get him to sign them. What I need is authority to make his doctor’s appointments for him, to be informed of treatments, to know his whereabouts if he has been admitted to the Wellstar Behavior Health hospital again when he is away from me.

I wonder if I bring the above form to the hospital or a doctor’s office, would it get me past HIPAA? I do not know. I am not a lawyer, and I am not sure it is legal enough. There’s not enough legalese in it and there is no space for two witnesses, a notary public’s seal, and my blood dispensed during a full moon of a leap year. 

I could say much more about it, but that is all I have for tonight.

Psychiatrists Assume Medication Noncompliance

Thursday, December 13th, 2007

memo book kept of mental illness

This post is another one of my Recollections posts where I am trying to catch up the story of my son’s schizoaffective disorder from summer 2007.

After my son, DS, got out of the hospital for the first time (June 2007) it became apparent pretty quickly that in many respects he was just as delusional as he was when he was in the hospital.

From my notes in my little red memo book (pictured), here is a sampling of what I was hearing from him all the time:

He suspects alcohol or drugs in the household water. He knows people who are not in his family are here in the house pulling pranks or putting alchohol in the water. He was washing his sheets everyday because someone is putting something in them, like drugs. He takes his sheets with him when we leave the house to go to therapy. He thinks someone shot a paintball at our window because there is a small speck of dirt there. One time when he took his medicine he said they dissolved instantly in his mouth, and he felt immediately worse. A gang is swapping his pills for poison. He left a note for the family that some cups are “dangerously laced – drink at risk to health and state of mind.” He said someone was playing pranks on him, contaminating the bathroom with some unnamed substance, as he cleaned some surfaces in the bathroom over and over, something he usually never did. (Too bad he never did a thorough job of it.) He announced that he was certain someone has been tampering with his income tax returns in his file drawer, although he had not looked at them yet.

That’s just a small sampling. I will write some more in some later posts.

I was very distressed, and on top of it all, he was often cranky with me and his five-year sister and two-year old brother. Sometimes I would call it downright verbally abusive.

I felt we needed help right away, and we could not wait for the intake appointment with Highland Rivers in Canton, Georgia, that was two weeks after his discharge. I thought I wanted to have DS’s follow-up care with them because the social worker at the hospital said they could offer therapy and possibly other help. We went there for an emergency appointment. When we got in a room with a therapist, after doing some preliminary paperwork, we were told their psychiatrists were too busy. It might take three days for one to get back to us. I did something I hate to do in front of strangers. I cried. The therapist suggested I needed a support group. That made me bristle. The real need here was help for my son.

I called the psychiatrist DS had before he went in the hospital, Dr. DB. He was more willing to help. He first assumed that DS might not be taking his medicine. Since I trusted DS to take his medicine, and he was always very good about taking it before, I did not take charge of it after he got out of the hospital… although I thought of it. This is a word to the wise. When there is a severely mentally ill person in the household, a non-mentally ill person should take charge of the medicine. Dr. DB wanted to wait a few days while we made sure DS was on his medication.

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.

Mind Hacks: Walking The Line

Tuesday, December 11th, 2007

http://www.mindhacks.com/blog/2007/10/walking_the_line.html#comments

Another favorite pasttime of my son’s is walking. I will have to watch if he goes to one side or the other. Actually I found this blog when I was doing a Google image search for “Wellstar Behavioral Health” and found this image of two people in a hospital hallway. I thought it looked like Wellstar, but it is a hallway in the basement of an entirely different hospital. I guess it’s not surprise that it is in a basement. I do not remember any windows.

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.

He Says, She Says

Monday, December 10th, 2007

talking headsToday the owner of the personal care home, CA, telephoned me to let me know that Friendly Neighbors, the company/agency that referred her personal care home to us, was recommending a day program for my son, DS. I asked if it was mandatory for him to attend a program, and she said no. That is good because DS had a bad experience with a program in October. I was certain he would not agree but I said I would discuss it with DS.

When I spoke with DS about it he was opposed, as I knew he would be. Then I thought I would bring up with him the issue of his washing, and I asked if I cleaned the carpets with the rug machine whether it would help him to feel better. He did not promise that it would, but he said it would be nice if I cleaned the carpets. I said I would come on Sunday. Then he wanted to know what CA had said about his washing. I said she said he was showering twice a day, changing his clothes twice a day. He denied that, flat. I don’t know why she would make something like that up, but I suppose she could have mistaken the sound of water running upstairs for a shower when he was washing hands or cleaning. And I can easily suppose that DS is sufficiently aware of what is going on to hide anything that could be construed as strange because he does not want his medication increased or to end up in the hospital again.

I was a bit worried about him sounding angry again. It seems like he is always angry with me. I am the one who does most of the helping and taking care of him.

Restoration of a Favorite Pasttime

Saturday, December 8th, 2007

home computer

Today DS had his computer delivered to his personal care home, with desk, chair and a dresser full of his stuff. My dad and husband brought it to him. I stayed home with little brother and sister.

I have been hesitant about letting him take the computer out of house and using it unsupervised. With his illness I am mostly concerned about him spending money online that he shouldn’t. I am also concerned about him messing up or damaging his computer in some way when he is not thinking clearly, but so far the only thing strange he seems to do to his computer lately (when he came home for visits) is run anti-virus and anti-spyware programs all the time.

He has always been very responsible with his money, but last June when he was very severely ill he did some borrowing on his credit card that he should not have. I believe he was very confused and his memory was not working well. He had a balance of $400, paid it off with a spare $400 he had, then he charged $400 worth of stuff including a new computer monitor that he did not really need. He thought that would leave a balance of $0, but of course, that leaves a balance of $400. He is still rather distressed about that debt. His grandparents have agreed to pay it off for him by giving him $100 a month.

I have his credit cards at home, so hopefully the spending will not be an issue. My husband found out that CA, the owner of the home, already has DSL internet, so DS only needs a wireless router to get connected to the internet. His grandparents have already decided to give him one for Christmas.

When my dad and husband got back from there, I took the opportunity to grill them on what they thought of the place and what happened there. Neither one of them saw doggie pee on the floor. Good. I hope it stays that way. My dad loves dogs and actually played with them for quite a while and talked to CA about his dogs. Good. Building goodwill. My husband fixed a computer printer problem CA was having. Very good. Building even more favor.

CA was overheard to say to DS, “you have such a nice family.” Dad and husband say they think it is a better place. DS still has not complained of anything at all. I hope he will be happy there.

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.