“A Night of Shock Horror”

Posted January 23rd, 2008 by
Categories: Mental Illness, Places to Live

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

Posted January 21st, 2008 by
Categories: Blogs, Mental Illness

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

Posted January 18th, 2008 by
Categories: Mental Illness, Places to Live

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

Posted January 17th, 2008 by
Categories: Mental Illness, Research

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

Posted January 12th, 2008 by
Categories: In Hospital, Mental Illness, People Who Help, Places to Live, Recollections

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

Posted January 12th, 2008 by
Categories: Blogs, Mental Illness, People Who Help, Research

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

Posted January 9th, 2008 by
Categories: Mental Illness

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

Posted January 6th, 2008 by
Categories: Blogs, People Who Help

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.

Arranging Transportation to Doctors’ Appointments

Posted January 5th, 2008 by
Categories: Mental Illness

For those of you who live in Georgia, have Medicaid, and are wondering how to arrange free transportation to doctor’s appointments, here you go. I set up my son’s first Medicaid ride yesterday and it was a little less painful than usual for dealing with the medical/governmental bureaucracy.

After some digging around I found this link to the Medicaid transportation program:
https://www.ghp.georgia.gov/wps/output/en_US/public/Member/Medicaid/3MedicaidBenefits3.xml.html
Choosing the right telephone number for the county he lives in, I listened to all the menu options because I figured I might learn something. When I finally got a human being on the other end, they took DS’s medicaid number, and they said, “he’s on SOURCE, so you need to talk to L–.” They transferred me to her voice mail and I left my name and telephone number.

No less than five minutes later, “L– from Southeastrans” calls me back. She takes the important information like addresses, dates, and times. She says when he is done at his doctor’s appointment to call her or the generic Southeastrans number to arrange his return home. His pickup time was an hour before his appointment time, which is not too bad of a wait for a twenty-minute trip. She also gave a confirmation number. The process to set up transportation was not too difficult on the whole. I hope the actual execution of the transportation works.

I have received a couple of telephone calls from DS in the last couple of days. We were mainly talking about this business of his upcoming appointment. I am mailing him his Medicaid card. He also told me CA has some more papers for me to see; they won’t fax well because of highlighting or something. DS sounded a bit nervous about riding the Medicaid transportation and I am feeling nervous about this now too. Not about the transportation as much as whether I should let him go to this appointment alone. It means the doctor will only hear DS’s input about how he is doing, which knowing DS he will say he is just fine. I have been going with DS to all his doctors’ appointments since his diagnosis of schizoaffective disorder. It is difficult for me to go to this one because of the distance and my schedule. Also, I did not enjoy my last visit with DS AT ALL, and doctors and medicine are topics that I have to be careful about with DS.

I am still trying to decide whether I should just go. After all if something goes wrong I will be the one to pick up the pieces. We had something happen last October where I think I made a difference by being at an appointment. (That story is a doozy, in my opinion. I need to finish my Recollections posts to get to that one. I am trying to tell these stories in chronological order.) Remembering last October and thinking about how nervous DS sounded about going alone, I think I have now convinced myself to go with him. Then again, I have not been around DS a great deal in the past month because he is living an hour away. I am not sure I have much to say to the doctor.

There is one rather sad thing to report today. I asked DS if he was spending a great deal of time on the internet, since it used to be a great love of his before he was ill. He said, no, he has been too busy. I should have been more curious and asked him what he was doing. In the past when I have asked that question he usually told me what keeps him busy is thinking. Since he has been ill he has been too busy to read or do anything it seems. Mostly he walks and meditates, as he calls it.

Recollecting the Second Hospitalization Summer 2007

Posted January 2nd, 2008 by
Categories: In Hospital, Medications, Mental Illness, People Who Help, Places to Live, Recollections

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.