Archive for December, 2007

Two Steps Forward and One Step Back

Monday, December 31st, 2007

Caution Step

photo by Esther17

Today I pick up DS so I can take him to the bank. The $528 rent is due and he needs to transfer his SSI money from his savings to his checking and get some cash for pocket money for the month of January. I could really do his banking for him, but I want him to handle what he can for himself. If I had my preferences I would do it all online and get him a debit card, but he has always been too paranoid of online banking and debit cards.

Before we leave the personal care home, the owner CA shows me the water bills. Sure enough, there is a $30 and 4000 gallon difference between November and December. I try to negotiate down to $25 reminding CA of certain extenuating circumstances. Unfortunately DS is in a mood to argue every point, so I just say to CA, “I’ll call you” and hussle DS out of the place.

The one-hour car ride back to Cherokee County was very unpleasant. I cannot count the number of times DS called me an idiot and said he hates me. I shocked myself by breaking down crying and then shouting at him. I can not believe how quickly he got through my shell. I can only guess that I was beginning to think of DS as normal and treat him as normal, all because Thanksgiving, Christmas and the month of December went so well. I am really hurting today.

There’s only one thing of interest to report today. Try Googling “memory impairment in schizophrenia” and you will get 1100 results. DS could not remember the wash, wash, wash conversation we had and he said he also does not remember the drugs being all over everything last June. He says things were just dirty. Once one thing has gone wrong with the brain, is it a surprising thing if another thing goes wrong? Or is it merely being so preoccupied with the other symptoms that affects the memory? More likely from what I have read, schizophrenia is so cataclysmic to the brain, nothing should surprise me.

The tic or twitch in the shoulder was back today with it extending all the way down his arm. His hand was trembling at times. This was happening two hours after we had both calmed down.

The only good news to report is that CA avers that DS continues to be polite and nice around the home. She said she was shocked by the side she saw of him today. Also, the 20-year old bipolar young man was moving out today. He was calling CA a *itch, and she would not put up with it. I reminded DS of the other personal care homes we visited, that were not as nice. We will see if he stays on his best behavior with CA. 

Blog Discovery: Robert Wilkins

Friday, December 28th, 2007

I am so tempted to steal this headline: Help solve the problem of mental illness… Get us away from the people that make us crazy!

I wanted to leave a comment for Robert on his site, but it resulted in a slew of errors related to SQL or something like that. I hope he gets this trackback, and I just wanted to tell him: “Thanks for the heads up on the legislation about housing for the mentally ill. I may be a bit late, however it is an issue I will have an interest in for some time to come. I have been talking on my blog about the challenges for my son since he became schizoaffective this year. I just love your headline, good one, lol.”

{Update April 28, 2008: Rob has begun a new blog at RobWilkens.name.}

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.
 

Merry Christmas & a Very Good Day

Tuesday, December 25th, 2007

Gingerbread House & Christmas Stocking

‘Tis a rather dark and gloomy day in Georgia, but it only adds to the wintry feeling since cold and snow are not the norm for Christmas here. We had sprinkles of much-needed rain all day long… a blessing from heaven because of the extreme drought here.

I was up before dawn at 6 am to be out the door so I could pick up DS from his personal care home in Douglasville by 7 am and join the family at Grandma’s house by 9 am. Before we left Douglasville, CA reaffirmed that DS has been doing very well. He is being very polite, in contrast to the other resident in the home right now… a 20-year old bipolar young man who has been using a great deal of abusive language lately. DS has been given a key to his own room, which is great to preserve his feeling of control over his environment and possessions, and to protect his precious computer which has recently been connected to the internet by a wireless router and adapter… a Christmas gift from his grandparents.

As DS was putting on his shoes he started to say to me, “I just told….” I said, “you told what?” He said, “never mind.” I think he is still having trouble with voices, but they are not nearly as bad and he realizes they are not real or at least he should not represent them to be to be real, like he used to. During our long drive I did not notice one tic or twitch from his left shoulder which used to be very noticeable beginning last summer up until about a month ago. My mother and I use it as something of a barometer on how he is doing, and she noted today that he only began twitching a couple of times today, when she asked his help in the kitchen. The laughing he does when he is turned inwardly, thinking, has somewhat diminished also.

Overall, it has been a very good day with DS apparently unstressed by the large family gathering.

Merry Christmas to all my readers and good night.

Dicken’s Therapy on a Self-Help Blog

Sunday, December 23rd, 2007
chain It is a ponderous chain.  photo by Wappy Al

I like this self-help blog by Dr. Martin W. Russell. It is not specifically a mental illness blog, but in a sense it could be considered a mental health blog because of the benefit you could gain from some of his insights. The post on Dicken’s Therapy has caught my interest. The essence of it is that you imagine what people would say about you at your funeral if you died tomorrow. I made a comment that Dr. Russell responded to. Among other things he said,

Other people might call you “hero”, but you’ve now taken on that name big-time. That’s a very interesting choice.

 I have signed up for his blog announcement list, so I can be a regular reader.

Blog Discovery: Paragraphein

Saturday, December 22nd, 2007

I just found this blog, and this post about the stigmatizing of the mentally ill. It is very well thought-out. I thought at some point I might have to write a post about how difficult it has been for me to find try mental illness blogs. On Technorati, I keep on coming across references to mental illness that have nothing to do with disease, but the blurbs are about the authors falsely assuming mental illness as the cause for the latest evil act in the world. 

The blogger has had a fascinating and difficult life experience for one so young. She is bipolar and also an adoptive birth mother… the main topic of the blog. It makes a very interesting read.

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.

A Diagnosis By Any Other Name…

Wednesday, December 19th, 2007
arosebyanyothername
photo by Jeff Epps

This is a good time for me to talk about my son’s diagnosis of schizoaffective disorder. Or is it spelled schizo-affective disorder?

I received an email from the blogger at Me and My Beast, Jason Wilson.

Hero,

I’m curious, how did your son’s diagnosis change from schizophrenia to schizoaffective?  The reason I ask is that nothing from what I’ve read (and I apologize if I’ve missed something so far) indicates that he has a mood disorder as well.  Does he have a mood disorder and were his psychotic symptoms present during a “normal” mood (i.e. not elevated extremely to be manic and not extremely depressed)?  As you may have already read from my blog, I have schizoaffective as opposed to schizophrenia because I also have bipolar so I’m just curious not that it really matters whether he’s diagnosed with schizophrenia or schizoaffective as the psychotic symptoms are treated in the same fashion.

And I answered:

Thank you so much for the question. I KNEW I would learn a great deal when I started this blog. Nobody explained it to me before, that schizoaffective disorder is schizophrenia combined with a mood disorder. That makes sense now. I suppose I could be blamed for not studying it more.

Now I am not exactly sure what mood disorder means, but I will strongly agree that my son is having trouble with his mood. As I detailed in Onset of Illness , one of the first clues I had that something was going seriously wrong was his crankiness. He also seemed to be sad and negative much of the time.

At the one visit we had with Dr. DB in May, the subject of DS’s hospitalization for schizophrenia in 1998 came up. DS wanted to argue about the validity of the diagnosis of schizophrenia. Dr. DB dismissed the whole subject, rather wisely I would say, to avoid a whole lot of ugliness of mood on DS’s part, by asserting that the diagnosis names do not matter… he treats the symptoms.

I can understand that. With my previous experience with my son’s diagnosis of autism/Asperger’s, I learned that the definitions in the DSM can change. That could be one reason why DS was not diagnosed with it until he was age 17.

To answer your question more directly, I would say the diagnosis of schizophrenia was given in 1998 and the diagnosis of schizoaffective disorder in June 2007. He still has the diagnosis of autism or Asperger’s syndrome and always will. I remember being told a long time ago that it is not very unusual for a second thing to go wrong with the brain once one thing has gone wrong. An interesting thing about autism is that in the old days (like before 1940) it used to be called childhood schizophrenia. It is a good thing they renamed it, because calling it “childhood___” gives you the false impression you can outgrow it.

You asked if the psychotic symptoms were present during a “normal” mood. I think no. DS is not always very open, and my best guess is the mood disorder came on first. Then again, he has always been somewhat inclined to paranoia, or what they call in autism circles “irrational fears.” I do not believe he was having major delusions or hallucinations until after the negative mood change was well underway.

I did not hear that DS’s diagnosis was schizoaffective disorder until after his second hospitalization in 2007, in July. I was trying to get the paperwork done to get him into a personal care home, and they wanted to know what his diagnosis was. When I asked DS (when he was not in a mood to deny being ill at all) he would say he was bipolar. That did not sound right to me because I though bipolar meant highs and lows in mood, and nothing at all to do with paranoia, delusions, and hallucinations. When he was being delusional he would simply say he was a drug addict, because he thought the drugs he was hallucinating about were making him high and causing him to become addicted.

Anyway, I called Wellstar Behavioral Health hospital to get the diagnosis. I was surprised when a social worker actually answered my question… surprised because I assumed they would brush me off like they usually would do when I would ask for information that could be construed as violating DS’s privacy according to HIPAA. I suppose because I explained the situation about filling in the forms for the personal care home, they may have cut me some slack.

As Jason and Dr. DB said, names probably do not really matter since the symptoms are what are treated. 

Then again, nobody with cancer or diabetes is ever told, “don’t worry about the diagnosis; we are just going to treat the symptoms.”

Pharmacy Foul-Ups & A Good Report on the PCH

Wednesday, December 19th, 2007

Today I got a call from CA, the owner of the personal care home. She was having difficulty refilling DS’s prescription. He had only one tablet of Risperdal left for today and he is supposed to take two. (How did that happen? The last dose in the bottle should have been two tablets. Oh, well.)

CA’s problem was a pharmacy foul-up. The Rite-Aid pharmacy (formerly known as Eckerd’s) that is near my house tried to transfer his prescriptions, including a record of one refill being allowed, to a pharmacy near CA’s house in Douglasville. They mistakenly sent them to a pharmacy in Atlanta. The pharmacy near her house suggested she call the doctor for a refill. She tried to do that and only got a telephone answering system. (I know. You are required to listen carefully to the choices and press the right numbers to talk to the right person or voice mail box.)

I understood her frustration, and I offered to make some calls to try to straighten things out. First, I told her I would be leaving the doctor’s office out of it. It was the pharmacy’s fault, and this doctor’s office is an even greater pain to deal with,  in my opinion.

In the end I discovered that the pharmacy in Atlanta that had the prescriptions, an independent store named Pay Low,  was only twelve miles from where she lived, and they offered free delivery. I agreed. I was glad things were cleared up this time with very little trouble.

I have had my complaints before with Rite-Aid. They did not have Abilify in stock at all, when DS first needed it last summer. Typically when I try to refill the Risperdal, they do not keep a sufficient amount in stock, and they give me only a three-day supply, at first. Then I have to return for the other twenty-seven days worth. I asked them specifically with a “please” to stock it, but a pharmacy tech tried to explain that it was company policy to treat this drug this way. I suppose they have their reasons. I warned CA about this problem and advised her not to delay refilling prescriptions.

On a brighter note, I spoke with DS today. He seemed to be in a somewhat conversational mood. I filled him in on family plans for Christmas and assured him that we would be picking him up. I tried to catch him up on news of his brothers and sisters.

He filled me in on his doings. CA has been taking him shopping almost every day. “Christmas shopping?” I ask. Food shopping he says, and other kinds of shopping. Also, she has taken him to eat in restaurants quite a few times. (I forgot to ask who has been paying, but DS does have $97 a month to spare after paying for his PCH.) “How very nice,” I observe. He never got that kind of treatment at his other personal care home. He said he likes it in his new PCH much better. I am glad of that. This is a very unusual PCH because it is the home of the owner who is also the “staff” person.

It sounds to me like CA does not let DS stay at home alone much. She has taken him to church with her and on walks with the dogs. That is very wise on her part to keep him busy and to keep an eye on DS. It sounds like we are very blessed right now.