Archive for the 'Recollections' Category

The Letter I Never Mailed to the Georgia Governor

Tuesday, February 26th, 2008

I was going through my stack of papers and found this one. I intended to mail it to Governor Sonny Perdue of Georgia, the lieutenant governor, the Cobb County Community Service Board, and a few other individuals that I could locate on the mental health section of the Georgia state government website. I do not know why I did not mail it, other than from a feeling of hopelessness that it would do any good.

stuffed folder of papers

My overstuffed folder of papers pertaining to DS’s illness last year.

September 5, 2007

Dear Governor Perdue,

My son DS is mentally ill with schizoaffective disorder and living in a personal care home at _________________ Road, Marietta, Georgia, in Cobb County.

After some type of state inspection of the PCH last week, we were informed that DS needed to be attending a day program. He needs the therapy to prevent a relapse that could cause him to be re-hospitalized. (He has had three hospitalizations since June 1st, 2007) Also, the personal care home will lose its license if he is not involved in a day program, we were informed. If he does not attend a program, he will have no place to live but the streets. We were given two weeks to resolve the matter.

DS did attempt the program at OCS (the Hope Program?) off Windy Hill Road in Marietta. Unfortunately because of his mental illness, he is having fearful delusions about that place and is adamant about staying away from it.

We have been attempting to contact the Cobb County Community Service Board to find out about other day programs or solutions to his residential problem. My first attempt was shrugged off because I am not the client. When I put my son DS on the telephone, he first dialed ____________ and was directed to dial ____________. After dialing that number, he was directed to call the first number! When he informed the person on the line that we tried that number already, his call was redirected to a voice mailbox. (I do not know whose.) We have waited for a reply to the message left there 24 hours ago and have received none.

I am asking for some help in finding a day program for DS in Cobb County. His only resource to pay for one is Medicaid. (For out-of-county letters: I am willing to look at other residential arrangements in other counties, if that is what it takes to have DS in a residential arrangement and a day program.)

If HIPAA (privacy issues) make it difficult for you to communicate with me, DS would probably sign a release to discuss matters with me.

Sincerely,
(my contact info and DS’s picture)

I had forgotten about driving down to my son’s PCH and putting him on the telephone. I also remember another example of my level of desperation at this time. I took DS to the local homeless shelter (MUST Ministries in Marietta, GA) to try to find some volunteer who might be able to steer us in the direction of finding some alternate housing or programs for DS. As it turns out, it was Labor Day, and there was no one there we could talk to. We did see the homeless people loitering in the parking lot. It upset DS and he said, “you are trying to scare me.” I am not proud to say it was true. I was hoping to scare him sufficiently about the prospect of joining the homeless that he would return to the OCS program. Didn’t work.

One more note about the Governor Sonny Perdue. My mother said to me the other day that she had heard that the governor was proposing more money for mental health in Georgia. I usually avoid discussing anything remotely political with her because of our differences, but I replied, “Yes, more money would be good, but I think we need some new ideas, too.”

The Failings of Day Programs for Mentally Ill

Tuesday, February 19th, 2008

Here is another of my Recollections posts, where I am trying to catch-up the story of my son’s diagnosis of schizoaffective disorder in 2007. 

Fom my son’s first hospitalization, the social workers’ I spoke with reminded me that an outpatient program would be available for my son, if transportation could be arranged.
 
The program they were talking about was called “OCS” or sometimes even the “Hope Program” and it is another offering of the Wellstar Health System. It is located off Windy Hill Road in Marietta, Georgia. The address is 2000 South Park Place, Atlanta, Georgia. I only know a little of what happened in the few days my son went there.
 
While my son was attending OCS, he told me the chairs and floors were coated in drugs and one of the other patients threw his drugs at him. Since this falls right in line with the delusions my son had been having all summer long, it can be assumed that he was still very ill. (I did have a social worker that told me she could believe the latter about drugs being thrown at him, because she had heard of just about everything in her line of work. To me, that stretches credulity just a bit too far.) My son DS also mentioned that he had seen Dr. K., while at OCS. I thought this was a good thing… you know, doctor supervision.
 
Whether because of the delusions or something else, in just a few days after his third hospitalization, DS got to the point where he vehemently refused to go. I telephoned the program to speak with someone about DS’s situation and to ask whether there was something they or I could do to help him to want to return to the program. I received a very flat refusal to discuss anything about my son because of patient privacy laws or in other words, “Mighty HIPAA.” (Let us all now kowtow.) That was the end of my son’s attendance at OCS.

Months later, I found a folder about the OCS program in my son’s room that he let me have since he wanted nothing to do with the program. Here are some quotes from the Orientation Handbook.

Quote from page 3:

The objective of OCS is to help our clients reduce or elimate symptoms and make positive lifestyle changes while focusing on a holistic approach. At OCS, we work with individuals who are experiencing marked distress due to depression, generalized anxiety disorder, panic disorder, obsessive compulsive disorder, bipolar disorder, schizophrenia, addiction etc. Through a multidisciplinary approach, our staff assesses symptom severity, determines the appropriate level of care for each individual, and assists him/her with the development and attainment of appropriate treatment objectives. When appropriate we use release of information to help us create a holistic treatment involving clients’ supportive social network (e.g. family) and multi-disciplinary doctors in order to provide an effective continuity of care.

In our case, obviously, the lack of “release of information” may have contributed to my son’s lack of “continuity of care.”

Quote from page 12:

Family members and/or close friends of clients are encouraged to attend each week. Mental health disorders and substance abuse/dependency are disorders that typically affect the family unit as a whole, Educating and treating the client, and the family, on Disorders increase the likelihood of the client maintaining a long-term lifestyle of recovery…. Family members and significant others are encouraged to utilize this opportunity to get support for themselves while continuing to support the client.

It is too bad no one told me I could attend with my son. After DS came from a mental hospital setting where visiting hours and information were extremely restricted, I do not know why anyone would think I could make that leap of thought.

From reading the OCS Orientation Handbook, I have come to the conclusion that the program’s strength lies in treating substance abuse. There seems to be an emphasis on that, including requiring patients to attend two 12-step meetings per week, obtaining the AA book and an AA meditation book. I seriously doubt this program has any benefits for a person like my son, coming off a serious psychotic episode, and probably needing rest and a low stress environment more than anything, as I have since learned.

After my son DS refused to attend OCS last August, a state inspector of some type visited the personal care home (PCH), and according to the manager, MG, my son was required to attend a day program or the PCH would lose its license. I took that to mean that DS had to attend a day program or be homeless, because I did not think the PCH would allow itself to lose its license.

house between rocks“between a rock and hard place” photo by judepics 

I tried to find out why DS was singled out for this requirement when there were other people in the home with a mental diagnosis not attending day programs. Was it his relatively young age of 27? The unofficial word I got from another staff member at the PCH was that is was the severity of DS’s symptoms that made him stand out, particularly the pacing and spending time alone in his room.

I assumed they were right… he must need a day program because his symptoms were severe, and he would get treatment or therapy or something there. (Wrong, I figured out later.)

I started calling around trying to find day programs. First, I tried the Cobb County Community Service Board. From what I have read on the Georgia government website these county community service boards are supposed to be very helpful for the mentally ill. I tried to make an intake appointment on my son’s behalf. The first question I was asked was, “why is your son not making his own appointment?” Thinking his mental illness alone might not be a good enough answer (because of previous problems I have had making psychiatrists’ appointments on my son’s behalf), I said he had autism (Asperger’s) and that makes it difficult for him. I received a firm reply, “we don’t provide services to the autistic.” When I tried to explain he had schizoaffective disorder too, the person did not listen at all, but she continued to deny us an appointment. I decided to call back the next day without mentioning the autism. As it turns out the day program that the service board administers was not accepting new patients anyway, but they did refer me to a program at “Walton Nursing” in Austell, Georgia.

This post is already too long. I will tell the sad story of what happened with Walton Nursing later. For right now, let me leave a couple of words of advice to anyone dealing with a similar situation for their loved one:

  1.  Always visit a day program with a family member. Visit for a whole day or session, if that is what your family member will be doing in the program.
  2. Speak with the state inspector of the personal care home, when they are making difficult demands on your loved one. Perhaps the PCH exaggerated the seriousness of the situation? (i.e. losing their license versus eviction of my son?)
  3. Day programs are not for the severely ill.

Creative Hospital Discharging of the Mentally Ill

Tuesday, January 29th, 2008

This post falls under my Recollections posts of my experiences with my son DS in 2007, who has been diagnosed with schizoaffective disorder. As I began to explain in my Third Hospital Admittance post, my son was hospitalized for third time in three months last summer on August 1st, 2007.

My husband and I and DS’s two youngest siblings were in Florida at the time he was taken to the emergency room. We were returning to our home in Georgia the next day when I received a call from DS on my cell phone. He was very anxious and fearful about the delusions and hallucinations he was having. He begged me to get him out of the hospital. “Begging” is actually too mild a word. I have never had anyone ask me (over and over again) for something with such fervor and earnestness. If it was in my power to to do anything, I think it would have been very difficult for me to do nothing. The power to release him from the hospital was in the hands of a doctor, as I told him again and again. I was extremely upset by our “conversation” if you could call it that.

DS was in the hospital until August 15th. In the interim, I made and rescheduled three optometrist appointments for DS. I was told by MG at the AM personal care home that DS had broken his glasses. I asked if it was just the lenses that broke or whether the frames were also broken. She did not know. She was only telling me what another resident had told her: he saw DS break his glasses. Apparently no one knew what became of the broken glasses. I remembered DS telling me earlier that there were microphones in his eyeglass frames that “they” were using to spy on him. I knew from the strength of DS’s prescription he would be rather uncomfortable from not being able to see as well. On the telephone, he complained of bumping into walls in the hospital because he could not see. I think to him it was more evidence of how he was being affected by the illicit “drugs” (narcotics, meth) that “they” were trying to kill him with. I felt horrible about him not being able to see, so I kept on rescheduling appointments at the eye doctor’s office. I did not have a clue when he would be discharged, and I wanted his appointment to be as soon as possible. I felt bad every time I talked to the receptionist about changing the appointment.

She never asked a reason and I never gave one, and I silently thanked her for that. Through this whole experience I have learned to try to be less critical of people. I do not know what it is going on with their life and if they do not tell, it may be that it is too painful to tell. On the other hand, I remember, too, the critical librarian who ran my preschool children and I out of her quiet sanctuary the day we needed some refuge from DS, following his first hospitalization. It still hurts; I do not think I have been back to that library branch since.

Now I will tell you about the “creative hospital discharging.” DS was not happy with AM, the personal care home. He did not want to go back there when he was discharged; he wanted to come home. I reminded him that he felt no more safer at home than he felt at AM. I knew DS was still going to be too much of a handful for me and his five-year sister and three-year old brother to live with. I knew I had to stand firm. He could not come back to our house. On the 14th of August, I learned DS was being discharged. I asked JC the social worker, “How are we going to do this? DS says he refuses to go back to AM.” He said, “Don’t say anything about where you are going. Just pick him up and drive him to AM.” I did not think it would work, and I told him so. DS and I had had many conversations before that day, and DS knew where I stood on the matter.

So I show up at the mental hospital, Wellstar Behavior Health, in Austell, Georgia to pick up my son, DS. My five-year old was at kindergarten, but I had my three-year old with me, who was tired because it was his nap time. He clung to me the whole time we waited for them to bring DS out to the lobby. It seemed to be taking a very long time. When DS came out he was walking between two male staff members. This is the only time I have seen this. (On one of his previous discharges he came out with one female nurse who gushed, “we just love having DS, he is so sweet.”) I had the feeling that just before DS came through the door they were physically forcing him to move. The first thing DS says to me is “Mom, I can’t believe you are doing this.” Then he changes his tact and starts saying, “this is not my mother, I am not going with her.” DS had been saying the “you are not my mother” thing a few days before and earlier that summer. I am not certain if it was a delusion, or a way of trying to hurt me. I think he knew that he could hurt me worse by saying “I hate you, you are an idiot,” which he did, and still does on some occasions. A piece of me thinks the “you are not my mother” was a delusion he fell upon when I was not doing what he expected I would do and disturbing his reality.

Anyway, after discussing it for a while, it was obvious DS was not going with me. He was also saying things like “I would rather be homeless than go back to AM.” DS is standing there between these two guys the whole time, and one of them picks up the telephone and calls a RN nurse to come out. She came out and looked at me without a word with one of the coldest expressions I have ever seen in the healthcare profession, or to be less critical of her, maybe she had already had her fill of DS’s behavior for the day. (Why do they think people who are this unreasonable are ready to be discharged?) I surprised myself with my own strength when I said to her in a very calm voice, “He is delusional, he says I am not his mother and he would rather be homeless than go with me. He is a danger to himself.” She says, “ok,” and back through the door they all go. I carry my sleepy three-year old back out to the car for the fifty minute drive home. For a change, I think I do not shed a tear.

The next day, I am determined I will not answer the telephone if the caller identification says it is the hospital. JC calls once and leaves a voicemail that DS will be discharged that day even if it means discharging him to a homeless shelter. I start formulating a plan for how I will help DS if they discharge him to the homeless shelter. I figure I can show up in the evening when he is standing in line for his slot and give him his medication. I can give him food and some money for food. But I will not bring him home. This is a really brutal thing that is happening to DS. He has never lived away from home before that month, always dependent on us his parents. It was a waiting game all day. Later, JC calls and leaves a message that Dr. K. says DS will not be discharged to the homeless shelter, and JC will work on finding him another personal care home.) A sigh of relief for a brief reprieve.

The next morning I realize I have another voicemail from the day before. I do not know why I missed hearing the telephone ring. It was a call from MG at AM, the personal care home. (Sorry about all the acronyms.) DS had just shown up in a taxi on their doorstep in the evening and he did not have his discharge papers. It is one of the regulations; she needs the discharge papers. I call the hospital and request they fax me the papers. (The fax machine to the rescue again. I am telling you, if you have a mentally ill person in your family you need a fax machine.) I believe I call MG back first with apologies for not returning her call sooner; I am incredulous. DS appeared in a taxi? Who paid the taxi? It was prepaid. Did the hospital call you first to let you know he was coming? No.

When I visit DS, he is very subdued and despondent. I have never seen such a picture of abject misery. I see him still in my mind’s eye with his head in his hands as I ended our visit. I cry bucket loads of tears for him on my ride home. I guess for all of his talk about preferring homelessness he realizes he is better off to stay at AM because he could get up and walk out the door anytime if he wanted to. A couple of days later, when I get the courage, I ask him how he ended up in the taxi. He said they told him he was going home. I did not know, and I still do not know, whether I should be angry that they lied to him, or glad that he did not end up homeless in the street. I was so angry and confused I knew I could not discuss it with anyone at Wellstar. I am sure someone very smart could defend their actions by saying “we said he was going home and AM was his home.” I am sure they knew full well that DS would not understand it that way. I am still wondering who orchestrated the whole thing: the doctors, the nurses, the social workers, or all of them.

Well, how about you, my readers? Have you ever been lied to like that when you were in the hospital? Do you think I should be angry about the lie or glad that my son ended up where he would probably be safer? (I am not even sure what I mean by the last part of the last question: safer than being in a hospital that lies to you or safer than being homeless?)

Move to the First PCH and Third Hospital Admittance

Saturday, January 12th, 2008

This post is the next in my series of Recollections about my son, DS, who was diagnosed with schizoaffective order in the summer of 2007. My son’s second hospitalization ended on July 24th, 2007. I brought him home and we began to prepare for his move to a personal care home I had found which was located about thirty minutes away in Marietta, GA. On the night before DS moved (July 28th), he did not sleep much, I believe. He was trying to decide what to bring and cleaning, cleaning, cleaning as he was going along, of course. He has never lived away from home before, even for college, so this move was stressful for him. On the morning of the 28th, he was very agitated and upset. He was saying he wanted to go back to the hospital. That did not make any sense because he hated and feared the hospital.

black and white trianges

photo by silentvale 

When we got to the personal care home—I will abbreviate its name as AM—he was calm enough. They had told us in advance that check-in would take two hours and they were right about that. They had a plethora of paperwork for us to do. I remember DS sitting on the couch next to me, looking very drowsy through it all. They gave him a room with no roommate, though no guarantees that it would remain that way since all the rooms had two beds. His bedroom had a doorway adjoining a bathroom that passed through to another bedroom where two other men stayed.

I helped him to unpack and we had to make an inventory of every item he brought. In theory that sounds like a good idea, but in reality, over the course of the next few weeks we were bringing stuff in and taking some stuff out, and there never seemed to be a staff person available to bother with updating the inventory sheet. He wanted to bring his computer, even though there were no guarantees about being able to get it hooked up to the internet. That was an issue that MG said she would look into, but she had not yet. With the computer desk it was just too much for me to be bothered with that day. I told him we would try to get it to him in a week or two when I could get his grandfather (my dad) to help.

There was one ironic thing that happened. The home manager, MG, had brought her grandchildren with her to work that day. One grandchild was a two-year old little boy who wandered into the bedroom as we were unpacking. I could tell his presence was making DS anxious, either because to DS’s mind the child was not clean enough, or the room was not clean enough and the child was touching things in the room. One of the reasons I was putting DS in a personal care home was to get him away from his two and one-half year old brother. I gently nudged MG’s grandson out into the hall telling him, “go find grandma,” and shut the door behind him.

After the unpacking was done, DS had to submit to a visual inspection of his undressed body, performed by PL, who is the 27-year old son to MG and father of the aforementioned children. (That probably explains, too, why the children were there. Their father had to bring them along because their mother was working.) The reason for the inspection was so that any bruises, injuries, or whatever could be noted and documented in the paperwork. I began to piece together that AM was a family business. MG was the home manager, her mother was the owner and her son worked there as staff from time to time. They had at least a half dozen different staff people that worked there at one time or another that I saw, but usually when I dropped in I only saw one staff person in the home at a time.

I left instructions that DS was to go to a hospital outpatient program called OCS (Outpatient Counseling Services at Windy Hill in Marietta) and they had transportation to pick him up. They said they would be sure to wake him up early enough to be ready and they did. The program was five days a week. I was told by people at the hospital (Wellstar Behavioral Health) that it was an excellent program for people newly discharged.

It was on a Saturday when DS moved into his personal care home, AM. On Monday, his father and I, and his five-year old sister and two and one-half year old brother got in the car to make a trip to Florida to visit my husband’s mother and sister’s family. It had been a long time since we had visited them, but it was not easy for me to leave town since I was worried about DS. We had planned this trip for a long time because my husband had some work scheduled off then. We planned to return on Thursday because the five-year old had a kindergarten open house on Friday. I got a telephone call from DS about once a day. Although he had made some improvement at the time of his most recent discharge from the hospital he was reporting that there were drugs all over the chairs at OCS and there were gangs outside of AM making gang signals. He did not feel safe. These were his typical delusions that he was having at the time of his first two hospitalizations.

Wednesday night around 10 p.m. I received a telephone call from MG, the manager of AM. She said DS was on his way to the emergency room. She told me the following story. DS had also told her that he was not feeling safe. She understood what was going on and offered to drive him to the emergency room. They got in her car and were driving down the road when he began to vomit. She pulled over to the side of the road. He got out of her car and when he finished, he took off running between some houses and trees and disappeared quickly. She called the police. When they arrived she answered all their questions and asked them, “please can I go now to look for him.” She said she “felt for DS” like her own son, because she has a son the same age. While she was talking to the police they received a radio report that DS was found. Apparently he had stopped at some house to ask for assistance and they had called 911 for him. For anyone keeping count, (I am) that made DS’s fifth encounter with police or emergency personnel for the summer.

We were planning our return home on Thursday morning (August 2nd) anyway, so there was no need to change our travel plans.

Recollecting the Second Hospitalization Summer 2007

Wednesday, January 2nd, 2008

DS’s second hospitalization last year for schizoaffective disorder with psychosis lasted from July 13th through July 24th, 2007.

It began with a marathon session in the emergency room. DS’s grandfather (my dad) and I accompanied him. After we got in an examination room, a woman came in to do an evaluation. I am sorry I do not know her job title or name. She remembered DS and his grandfather from his previous emergency room visit, and after we were able to speak with her privately in the hall, she expressed her shock that he was back so soon. I now wonder how long she may have been in her job. Given our experience this year and all I have learned since, can it really be possible that it was a shock that he returned? My Dad spoke with her about our disappointment in the lack of communication we felt we had with Wellstar Behavior Health last time. She gave me the name, “Lily,” someone in a position there, and said I should speak with her if I ever feel communication is a problem again. I never did that, and I probably should have. 

It did not take too long waiting in the emergency room for arrangements to be made for the hospital transfer from Wellstar Kennestone Emergency Room to  Wellstar Behavior Health. What REALLY took so long was waiting for an available ambulance. We were there before noon, but DS was not transferred until after midnight. I wonder why mental hospitals do not have their own emergency rooms or triage area or whatever. It was not at all a pleasant experience with DS belittling or berating me constantly for causing him to be there. Finally around 10 pm, my dad, who is a very soft-spoken and gentle man, somewhat uncharacteristicly let it be known to DS that he was out of line. I was very grateful to Dad for that. I suppose it was not a necessity that we wait with DS for his transfer. They had a security person checking the room every few minutes. (Would that have been enough to prevent an “escape?”) However, he was sick and I did not want to leave him alone if it was humanly possible for me to be there. Also, I think anyone is justified in not wanting to leave a loved one alone in a hospital any more than absolutely necessary with nursing shortages and medical mistakes, etc. We had a very bad experience with my mother in this same hospital a few years ago. 

So, DS was transferred to Wellstar Behavioral Health in the wee morning hours on Saturday the 14th. On Monday morning, I believe, I received a telephone call from Dr. LT. Almost the first thing she said to me was, “it sounds like you have had a rough week.” I wondered if she knew that from talking to DS or from some reports from the emergency room. In any case, it instantly endeared me to her. (At last, a doctor with a bedside manner and who called me first!) I wondered if DS was assigned to her because of our complaint we made in the emergency room about communication.

This time DS was started on Risperdal, Depakote and Zoloft. He continued to take the Clonapezam. I did not visit DS as often in the hospital, but we talked on the telephone nearly every day. I noticed a big improvement in the delusions within 48 hours of starting the Risperdal.

During this hospital stay we (DS, his father and I) had our first ever meeting with a social worker, JC. He mainly wanted to establish where DS was going to be staying after his discharge. DS was certain he could go to live with another patient there named Mary. All the rest of us said that did not sound like a good idea. DS was very argumentative, interruptive and demanding the whole meeting. To finally reassure him that I was interested in his concerns, I took out my red memo pad and wrote down what he wanted me to about what he desired in a personal care home. That calmed DS down long enough to give JC about a minute to have his say. DS turned to me and said, “Why are you not interrupting him?” I said, “Because I want to hear what he has to say!”

little red memo book

After the meeting when JC was showing us out the security door he said, “You were really great. I do not know how you do it.” I was shocked. You mean, he does not deal with people like this every day? Well, obviously, I was feeling like I could not “do it” much more, at least not on a daily basis. That is why we were having a search for a personal care home. I must have said something that gave away my naivete at this time about how quickly I expected medicines or therapies to help DS get back to himself. JC gave us a warning to expect things to take some time. My mind has turned back to his warning again and again when I have been disappointed.

As I was saying in this post, A Place for the Young & Mentally Ill, I did have a personal care home identified by the time DS was discharged.

A Place to Live for the Young & Mentally Ill

Wednesday, December 26th, 2007

This is the next installment in the series of Recollections post from last summer 2007.

I made mention before of trying to find a personal care home for my son when he was in the the hospital for the first time this year in June. From what I was told, a personal care home would be the only feasible option of a residence for my son. I describe personal care homes (PCHs) here.

In the hospital the social workers tried to find him a place but were unsuccessful. I was told BH of Altrus was an expert who would get in touch with me and be a big help.

One week after DS’s discharge, I have had no phone call from BH. I call her. She says she had DS’s name, but no contact information for him. (Hmmm, I know at least two social workers in the hospital that could easily access that information for her.)

I have made quite a few telephone calls with BH back and forth so I admit that some of it is a muddle to my memory. One time she tells me I need to locate the home first before getting SOURCE approval. At another time she has given my name to a SOURCE worker who calls me to get some information. This person then tells me to locate a home first.

After some delays, BH gives me the names of two personal care homes in Cherokee County, with telephone numbers and owner’s names. These were the only two homes in this county with a vacancy at this time. It always seems to be true that when you call these homes, a staff person will answer the telephone. They then inform you that they are not the owner and they give you the owner’s cell phone number. The owners are usually most available in the evening, so I assume they may work regular day jobs and keep a personal care home for side income. They nearly always have a foreign language accent, so communication is not so great.

I call the first PCH and make an evening appointment to see the place alone. I say “alone” because my son is still in the hospital (second time). The last half mile to the home is a gravel, rutted road. The brakes in the car I was driving were very bad and scaring me the whole way over there. When I come to a place in the road where the grade is very steep, I have had enough. I turn around and make a cell phone call to the owner with apologies for canceling the appointment.

I call the second PCH and make an appointment to see it at the owner’s convenience, two days later. The morning of the appointment I receive a call from her that the vacancy has been filled. I begin to get the feeling that PCHs are rare and you need to rush to get in one when there is a vacancy.

So, according to BH there are no more vacancies in Cherokee County (Georgia) where we live. Let’s try neighboring Cobb County I tell her, thinking about the OCS program I was told about, which provides transportation to residents of Cobb. This county is a great deal larger in population and there are many PCHs. BH promises to mail me a list. I wait a week: no list. I telephone her. She asks if I have a fax machine. Thank heavens I do. She faxes me a two-page list of homes. I have found the fax machine to be a big asset on many occasions since DS’s illness began.

I begin telephoning PCHs, going through the process of calling the home, getting the owner’s number, calling the owner, waiting for the return call, etc. I find through this process that some homes are just for women, most homes are just for the elderly and most homes have no vacancies.  

At this time I was fortunate to receive a telephone call from KM, who called herself a therapist at the hospital, Wellstar Behavior Health. I am not sure why she has this information, but she says she knows of a PCH, though not SOURCE-funded, that would possibly take DS at a discount because they have empty beds they are trying to fill.

To make an even longer and boring story short, this place becomes DS’s first PCH. They agree to take him at $600 a month. They say they are applying for SOURCE status, but they cannot promise when that will happen. The home manager I speak with most of the time, MG, is from England, so she has a British accent, but I can actually understand her most of the time. The owner is a very excellent nurse, I am told. The home has seven beds for women and eight beds for men in wings at opposite ends of the house. There is a large living room with a big-screen television and a dining room that seats all the residents at two tables. Most of the residents are elderly, but three of them are more middle-aged and are friendly and happy to talk about the place with me. They aver that this personal care home is a great place. Two say they have schizophrenia. We chit-chat about medications and doctors. I think, “this place exceeds my expectations.” I decide to snatch up a slot for DS before it gets filled.

I bring DS to visit the home, that I will call AM, on the very afternoon he is discharged from the hospital. He seems to be all right with it also. We spend the week trying to scrape together the paperwork because my husband and I have a trip planned to see his mother the following week. (She had a close call with an illness and recently went to live in assisted living herself.) DS and I go the rounds to the health department for the turbuculosis test, the primary care physician for the physical forms, back to the health department to read the results of the TB test, etc.

I am getting a little ahead in my narrative now, because I did not talk about the going-ons with the second hospitalization, and I will in the next post. Just suffice it to say, finding and getting a loved one in a personal care home is a big, inefficient hassle. Dealing with it on top of dealing with symptoms of an illness was a lot to bear. I did not make much progress until DS was back in the hospital again.

Another funny and sad thing… the whole time I was trying to get information from BH I had to be very secretive about it. DS had met BH in the hospital and did not like her at all… he wanted me to have nothing to do with her. It was his paranoia I know, but I could not help but agree that his general feeling about the state of housing for the mentally ill was right.
 

Uncomfortable Memories of Dealing with Severe Mental Illness

Friday, December 21st, 2007

This post continues the Recollections of summer 2007. This is covering the period of time between DS’s first hospitalization in June 2007 and his second hospitalization in July 2007 for schizoaffective disorder.

 As I was saying in Psychiatrists Assume Medication Noncompliance, Dr. DB wanted to wait be sure my son DS was on the Abilify medication before making a change. I believe he did add Clonazepam at this time. After a few more days and a couple telephone calls from me, he agreed a medication switch was appropriate. He prescribed Zyprexa to be gradually phased in while the Abilify was phased out over a course of five days.

One good thing I have to say about Dr. DB is that he would take my telephone calls. I learned later that his specialty was adolescent and child psychiatry, so he is accustomed to dealing with patients’ parents, I assume. I don’t know how DS ever started seeing him in his early twenties. I think we picked his name out of a telephone book because he was in a psychiatry group close to home, that accepted Medicaid insurance.

Here are some things about DS from my notes from this time. DS insisted he heard a muffled scream from his sister’s room in the early morning and wanted to wake her up to investigate it. He told another sister’s friend to leave the house because it was dangerous here. He was very rude and insistent about it. He said he did not want to take the medicine: it was all in my head that he needs it. When I suggested calling the doctor the next day to discuss it, he took his medicine.

DS told me there was a dumpster at the county recycling facility that was a trap. That’s where he got drugs on the bottom of his shoes, and it’s a good thing the police did not know. He called his grandparents at 7 am to warn them about a researcher. He told me he had a hallucination about a ninja man in his room. (At least he knew it was a hallucination, but it still sounded very scary.) He said his sister had microphones in her ear for listening to him. He thought there were listening devices in his eyeglass frames. He was worried about the police coming in the middle of the night to arrest him because of the illicit drugs at the hospital. He said he felt unsafe and unwelcome at home.

Meanwhile every day all day long he was walking back and forth in the house checking windows and doors to be sure they were locked. If one was unlocked it was usually his own fault because he would make checks outdoors then come back in and forget to lock behind himself. Then he would blame me. He was critical towards me for not doing more cleaning of the house or not keeping the bad guys or pranksters out. He was washing all his bedding and all his clothes every day. (I got so tired of hearing that machine running. I thought for sure he was going to wear it out.) He was washing the inside and outside of his clothes hamper and garbage can frequently. He was cleaning his room, and throwing away alot of things, and filled three large garbage bags. Sometimes I would go through what he had thrown away and save things I thought he might regret tossing when he was feeling better.

One day he left a plastic bag with his Bible and some other things outdoors on the back deck. I did not notice them until after it rained. I managed to salvage the books, but I am still keeping them hidden for him, for when he is less delusional about them being contaminated. I figured he thought they were contaminated because they had been at the hospital with him.  He was scrubbing the bottoms of his shoes frequently with new toothbrushes then throwing the toothbrushes away. We were going through paper towels so fast sometimes I think that was the only thing in the garbage can.  It seemed to be hard to keep shampoo in the house, too.

The day before he entered the hospital, DS hurt his five-year old sister’s wrist when he yanked her blanket away from her. He was upset because she had been dragging it across the floor. I remember sternly warning him to not touch his little brother or sister or I would be calling the police. He said, “go ahead.” His attitude was very bad this whole time. His fear and anxiety were intense and the verbalizations about them constant. The five-year was beginning to believe the things he was saying about bad guys coming in the house. I remember thinking, “Oh, great. Now I am going to get her into therapy, too.”

Someone said to me that he seemed to be very driven. I said, “yes, ‘driven’ is a good word for it.”

I am sad to have brought up all these memories from last summer. Looking at my notes brought it back fresh. We were suffering, and he was suffering. I felt we were totally failed by the hospital, the doctors and society. It seemed to me he needed more frequent therapy and more follow-ups with the doctor. (He only had one hour of therapy and one doctor’s visit in this three week period.) He needed some place to live other than at home. I am glad DS is doing much better now, although I still would not say he is well. When I spoke to him this week, he had no complaints of feeling unsafe.

Four Police Encounters in Three Weeks – Part Two

Thursday, December 20th, 2007

grass in our yard

Four Police Encounters in Three Weeks – Part Two

This is the next installment of Recollections where 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. You can read Part One here.

Just two or three days before DS was to go back in the hospital the second time, I took little brother and sister with me and left the house. We just had to get away.

DS was washing his clothes a great deal in those days. He felt that bad guys were getting in the house and putting narcotics or methamphetamine, you-name-it, in his clothes, his bed, on the floors, and everywhere. Despite our frequent reassurances that this was not true, and also trying to explain to him that these kinds of drugs are not absorbed through the skin, he was very anxious and very busy all the time trying to get rid of the “drugs.”

While we were out of the house, I received a telephone call from my teenage daughter who was left home with DS and was sounding rather upset. She said DS had called 911. While he was on the phone with 911, she had shouted at him to stop it.

(I actually think this part is kind of humorous.)

I told her to relax, and for her future reference, do not shout in the background of someone making a 911 call, unless you really want the 911 dispatcher to believe it is a very serious situation that needs every police officer in the county.

I told her when the police showed up, simply let them know that DS was discharged from a mental hospital two weeks before, then shut up and let DS talk. I was too far away to get home before the police got there, but if they wanted to talk to me they could call me.

Sure enough, about fifteen minutes a later an officer called. He assured me that he had had mental health training as a law enforcement officer. He told me DS was reporting narcotics in the laundry detergent. He asked a few questions about whether DS was on his medication, when and where he had been in the hospital, and so forth. I guess it was information for his report. He suggested DS was ill enough to be in a hospital now. I was very much inclined to agree, but DS was pretty much in the same shape he was in when he was discharged, so I wondered if the hospital would take him back. DS did not want to go to the hospital, so that was that.

The last police encounter of the four I am covering happened on Friday the 13th of July, which just happened to be my twenty-eighth wedding anniversary. DS woke up early, agitated as usual, perhaps even more so. He was cleaning the bathroom and going back and forth in the house without his shirt. It was unusual for him to be without a shirt… he was usually modest to the extreme, so it reminded me of that movie Sixth Sense, where the mentally ill young man in his underwear shoots the doctor.

DS was nagging me as usual about not doing enough housecleaning and not washing my sheets frequently enough. At one point he declared that I was stoned and needed to be taken to the emergency room. I thought, “here’s my chance.” Even if I had to pretend to be the patient when we first got there, once we got a doctor in the room maybe DS could be admitted again.

The only problem was DS would not let me drive “under the influence.” (I did not think it was funny at the time, but now I see what a comedy this situation is.) I certainly was not going to let him drive. I called up my mother and asked if she could drive us. She lives forty-five minutes away and takes care of her own elderly parents, but she said she would try to get away or send my Dad. My husband is home at the time, and we agree that he will babysit little brother and sister while we go to the hospital.

I get off the telephone and explain about the ride. After a few minutes DS starts to get impatient. He declares that the situation about who will drive needs mediation, and he is going to go to the neighbors to get it. He leaves the house.

I get myself in a bit of panic now. Where is he going and what is he going to do? I yell for my husband. He runs out of the house to find DS. I call 911. I say something like, “Um, my paranoid delusional son has left the house just as we were going to take him to the emergency room. I am not sure where he went. My husband is out looking for him.”

In very little time at all, it seems like there are at least two or three police cars, a fire truck and an ambulance parked in front of our house. I really did not mean to involve so many public servants, but I guess they were thinking they might have to conduct a search.

My husband had corraled DS in the neighbor’s yard. He brought him back to our yard and had him pinned on the ground. After standing around and talking to the half dozen officers and firemen encircling us, I think DS agreed to an examination in the ambulance. After he went in the ambulance for about ten minutes, we were informed that they will be taking DS to the emergency room. My Dad arrives and we go together to meet the ambulance at the hospital. After sitting in the emergency room with DS for thirteen hours, he is transferred to Wellstar Behavioral Health in Austell, Georgia. It is his second hospitalization in 2007 for schizoaffective disorder.

Again, I felt the officers and emergency personnel treated DS with professionalism and kindness.

At this point in my life, to my closest friends, I was making this observation: the measure of how difficult of lives have become can be counted in the number of police officers we have had to meet this summer.

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.

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.