Archive for January, 2008

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?)

Dr. Freeman’s Lobotomy

Thursday, January 24th, 2008

This story makes me sick to my stomach. A couple nights ago, I watched American Experience: The Lobotomist on Public Television. The procedure itself has a great deal of ick factor, but even more alarming is how Dr. Freeman was able to invent and then cavalierly practice his procedure without scientific method, or peer review, or even a surgeon’s license. From now through January 25th, 2008, you can ask questions in an online forum of people who appeared in the program, including Dr. Freeman’s sons, and the daughter of a woman who was apparently cured of her depression by lobotomy. Don’t let this opportunity get away!

lobotomy blueprint

photo by jylcat

Beginning with his private practice, Dr. Walter Freeman eventually performed lobotomy on thousands of mentally ill people in hospitals across the US without permission of the patients or consultation with their families. He performed his procedure on more than a dozen children, including one as young as four-years old. For ten years or more in the 1940’s or 50’s he was lauded by the press as having invented a cure for mental illness. A few patients experienced a miraculous recovery, but for many others it was trade-off. They became docile, emotionless and child-like, but there was no relief of their illness or restoration of their mental health. Some patients even died during lobotomy.

I guess what really made me sick to watch this television program was to realize that with the level of desperation I have experienced since my son has become severely ill with schizoaffective disorder, I would have absolutely gone along with a treatment like this one for my son, if I had been promised by “a man in a white coat” all that lobotomy was once touted to be.

“A Night of Shock Horror”

Wednesday, January 23rd, 2008

PsychCentral.com has this article about a teen who was given electrical shock against his treatment plan. I identified with the observation about immigrant workers. I have always wondered why it is that immigrants dominate staffing and ownership of the personal care homes in this area.

Blog Hunt: Mental Illness Blogs

Monday, January 21st, 2008

I felt it was time to fix up my blogroll a little more. Here are some blogs I added today.

For Better, For Worse, In Sickness, In Health
is the blog of the wife of a man with schizophrenia or schizoaffective disorder. I was very moved by her post about her lil’man, their three-year old son. Having a son that age, I can sympathize. Fortunately, in our case, his older brother’s illness has not affected my three-year old as profoundly.

Quodrophenia
 is the blog of a 25-year old schizophrenic. In the post Masterful Domains I was reminded that the fear of psychosis is absolutely real to the person experiencing it.

A Broken Mind
is an informational blog about schizophrenia with one of the prettier WordPress themes I think I have seen. It is an article style blog with useful, factual information. I would be curious to know a little more about the blogger’s life and what motivated them to start this blog. We all must give what we can when we can.

The Bipolar Diaries
is Danielle’s blog and she also happens to be a great amateur photographer.

A Long Walk to Forever
is Catherine’s blog. I am not sure whether she has bipolar or depression or something else, but she is recently dropping one of her medications, Geodon. I love the little poetic quips at the end of some of the posts.

Robert Wilkens Home Page
There is very little to be seen in Rob’s blog about mental health right now. I very much appreciate that reminder that people are not their diagnosis, and many people are able to get on with their lives in a very functional way. I thank Rob again for the insights he gave me into schizoaffective disorder in his comment he made here on my blog.

So there you have it. I am open to any suggestions of other blogs to add to my blogroll. Your comments are welcome below.

New Problem Brewing in Son’s PCH

Friday, January 18th, 2008

Today I spoke with CA, the woman who takes care of my son, DS, in her home, which is also a personal care home. She was asking again about the possibility of finding some day program for DS because she has no time to do things by herself. Apparently it is a state regulation that she cannot leave him in her home by himself. When she leaves to go to the store or anywhere, she takes him with her.

I can sympathize with her complaint. I really do not know what to say. DS had a bad experience with a previous day program. I just cannot imagine him agreeing to go to another one. CA suggested that if DS could come home for one day a week, it would be a help. I need to think about that one. Right now I need to have my husband present when DS is around because my nerves are rather shot by the verbal abuse he is inclined to heap on me when we are alone. I figure that is why he did so well during the holidays… lots of extended family around. 

The alternative will be getting CA to the burned-out point where she will probably ask that DS move to another home. I am heartsick about both possibilities.

Totally changing the subject, DS called me today to let me know that Bobby Fisher died. DS has long enjoyed chess, so I am not surprised he would want to call me with the news. He said, “Isn’t it interesting that Bobby Fisher died at the age of 64 and there are 64 squares on a chessboard.” I wonder if he thought that one up himself or if he read it somewhere.

snowmanmelted snowmanOn the lighter side, we had snow here in Georgia yesterday. My five-year old daughter and I built a one-foot tall snowman. Here are the before and after shots of the snowman yesterday and today.

Mental Illness and Foreign Accents

Thursday, January 17th, 2008

It can be interesting to read the statistics of this blog and look at those keywords that have brought visitors here from the search engines. Two keyword phrases that have brought visitors are “people with mental illness talk in foreign accents” and “mental illness british accent.”

mouth

photo by Phinias H

That caught my interest. I have not actually said anything about my son, DS, having an accent, but it is true that most people notice that my son has an interesting way of speaking. This was true for most of his life and long before his diagnosis of schizoaffective disorder. He was born and raised here in Georgia, in the USA, but he does not have an American southern accent. Sometimes when meeting amiable people for the first time they will ask him where he is from. It is kind of funny to watch their reactions when he answers, “I’m from Atlanta.” My son’s way of speaking comes from his Asperger’s syndrome. Asperger’s is considered by some people to be a form of autism or pervasive developmental disorder and is a developmental disability… DS can speak, has vocabulary, etc., but it has affected communication in him in number of ways. The only way I can think to describe his speech is to say that it is precise. Sometimes he overemphasizes certain consonants and changes or softens certain vowels. It is really his own accent.

The only mention I have made of accents on this blog is in the people who have been caretakers for my son in personal care homes. It seems in this area that most personal care homes are owned and run by people with foreign language accents. The PCH my son entered last August was managed by a woman with a British accent. I believe that CA, the woman who takes care of my son today, is from Jamaica, since she mentioned something once about making a telephone call to a relative there.

Speaking of British accents, today this blog ranks about fourteenth of so in Google search for the phrase “mental illness british accent,” and nearly all the previous results are about a certain celebrity whose mental health is in question because of her recent behavior… including (supposedly) recently acquiring a British accent. I do not have any particular interest in following celebrity news, but if she were to announce some mental illness diagnosis, it would capture my attention and perhaps garner her a mention here by name.

Having my curiousity aroused I did a little of my own searching and found this academic article here: Characteristics of Psychotic Patients With Foreign Accent Syndrome.

The authors describe three patients with foreign accent syndrome during psychotic episodes which resolve with improvement of psychotic symptoms. Psychotic symptoms were worse during the times patients had foreign accents, suggesting a relationship between the presence of the accent and the severity of the psychosis.

Unfortunately you have to pay $15 to read the full article. I thought I would give it a mention for the benefit of anyone else who stumbles upon this blog looking for that connection.

The brain is certainly a mysterious thing.
 

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.

A New Mental Health Resource Centre

Saturday, January 12th, 2008

young man with head in hands
Justin Wilson, of the “Me and My Beast” blog, has begun a website for mental health at his old web address at meandmybeast.com.

His blog is now located at blog.meandmybeast.com.

His new website has a forum, chat, and a mental health news page that I found particularly interesting. The news page has a great deal of links to recent research about mental health and will make good food for thought if I ever run out of things to blog about. 😉

I posted a question in the forum about my son’s apparent lack of awareness about his illness. I would be pleased to see some answers to my question there.

Emotional Reactions to the Trauma of Mental Illness

Wednesday, January 9th, 2008

When discovering or beginning to suspect a loved one has a mental illness, mothers, fathers, children, siblings, spouses will find themselves deluged with strong emotions. Many of these emotions will continue for a long time. I found this to be true for myself when my son began to have one mental illness crisis after another in 2007. Here are some of the emotions I am talking about.

  1. Sadness or depression. For me, I was majorly sad, almost to the point of suspecting depression in myself.
  2. Anger. I was angry at the doctors, the therapists, the hospitals, the social workers, society, you name it. I felt they could do better. Sometimes I was angry at my son for not trying harder to “snap out of it” or even just listening to me. (I know, being angry at my son for being ill is stupid.)
  3. Anxiety. I was anxious all the time when he was home. (What is he going to do next?) I was anxious when he was in the hospital. (When are they going to discharge him? Will he be any better when they do?)  I still flinch when the telephone rings. (What has he done now?)
  4. Fear. I was afraid of the illness never getting any better, afraid of the next verbal assault from my son, afraid of a possible physical assault. I was afraid for my son that he would become homeless. I am still afraid of these things.
  5. Helplessness and hopelessness. Despite seeking medical care, recovery and even improvement were nowhere in sight for a very long time.
  6. Confusion and frustration. Many times I feel I do not even know the right questions to ask. When I would start making telephone calls for services, I would be referred to three other places to call because the first could not help. Many of these other places were deadends, too. There were long waits for things to happen.  There is the frustration with the medical system not volunteering information. There is the frustration of coping with the symptoms of the illness day after day. There is the frustration of my son not wanting to contact the doctor at times. There is the frustration that improvement feels like it has come at a snail’s pace with backsliding commonplace.
  7. Isolated and embarrassed. I found myself unable to tell anyone but a few friends. Even though I know mental illness is a physical illness, I am painfully aware that the rest of the world does not always see it that way. If my son had cancer or some terminal disease, I am sure I could ask our church to pray for him. I came very close to making a prayer request for my son many times this past year, but I just could not bring myself to do it.
  8. Guilt. I feel guilty that I cannot let my son live at home at this time, until his symptoms improve or his siblings get older, and I become stronger.

Mental Illness, emotions

photo by John Suler

Mental illness is devastating to our loved ones. It is a catastrophe to their families. Is it any wonder then that these emotional reactions are normal? There is nothing wrong or bad about these feelings. It is also helpful to remember that these emotions can run in cycles. One day, we may be feeling accepting, then another day we are back to the anger and frustration, especially when a relapse or new crisis occurs. With this in mind, let us be gentle with ourselves and each other.

My Review of Dr. Martin Russell’s Self-Help Meeting

Sunday, January 6th, 2008

This is something for everyone. A diagnosis is not a prerequisite for Dr. Russell’s Self-Help Meeting at http://www.selfhelpmeeting.com/. He is a medical doctor who has counseled people through a variety of problems such as depression, anxiety, eating problems, sleeping problems, etc.

He calls himself “a doctor of last resort,” and after going through his Self-Help Meeting, I can see why. Dr. Russell will not give you all the pat answers for your problem if you pick up the standard doctors’ office pamphlet for “Problem XYZ.” His approach is best if you have already tried all the pat answers, done all your homework and research, and still need help.

That was my particular case. I was trying to make a decision about a new direction I wanted to take in my life. I had three pages full of notes with analysis, pros and cons, looking at my strengths and weakness, what has worked and what hasn’t worked… trying to make sense of it all and come to a decision about a course of action.

The really cool thing about the Self-Help Meeting is that you listen to it and watch it on your computer screen. I was poised ready with my notes, and more paper and pencil in hand. I took another six pages worth of notes while listening to Dr. Russell talk.

At the end of the presentation, I began to feel a plan of action taking shape in my mind. It was late at night so I went to sleep while musing about the things I had just heard. When I woke up the next morning, I knew what I wanted to do.

In addition to recommending Dr. Russell’s Self-Help Meeting, I also recommend his blog. I have been reading it for a month, and I am constantly amused and intrigued by his way of looking at things. He has recently written a couple of posts about depression: Self-Help Options for Depression, and Self Help Exercise for Depression . I promise you will be surprised by his take on Quick Fixes.

By the way, Dr. Russell, if you are reading this, I like that you put a face to your name and words recently on your blog.