Archive for February, 2008

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.

Mental Illness and Choosing Isolation

Monday, February 4th, 2008

There is a question of whether it is healthy for mentally ill people to isolate themselves by their own choice.

My son was diagnosed with Asperger’s syndrome (a type of autism) years before he became ill with schizoaffective disorder. He has always liked his privacy, and he has always spent hours at a time in his room.

solitary man in desert

photo by loufi

After he had his major breakdown last year, he went to live in a personal care home. It has come up twice in the past five months from the people that take care of my son, that his preference for being alone in his room is not healthy, i.e. it gives him nothing to do but listen to the voices for one thing. At one point we were pressured to put him in an adult day program with rather disastrous results. (This story will come in a later post.)

I am now enrolled in a class offered by NAMI called the Family-to-Family program. Like a breath of fresh air, I found support and explanation for my son’s desire for solitude. In short, the class taught that the three predictable features of a person in the post-psychotic stage of mental illness are exhaustion, depression, and delayed stabilization. People in this phase are in need of rest and recuperation because they have undergone major trauma and stress, physically, mentally and emotionally. One evidence of trauma I believe in my son’s case is that he lost thirty pounds with no conscious effort. He has not been in any condition to plan and execute a program of any type, even for weight loss, for months.

Here I have been trying to go to the “experts” about what to do to help my son… the people in charge of the programs. Now I find out that they do not really know what they are about.

I quote from NAMI materials (page 4.37):

This extended period of vulnerability routinely goes unrecognized by professionals as well as families. Although many professionals may now agree that biology causes the illness, they often assume that recovery is solely a function of ‘psychological will.’ Consequently many programs involve ambitious psychosocial treatments and full-day scheduled activities during the early recovery period when the individual is least able to participate.

This vulnerability period may last from months to years. Stress can cause additional relapses. The demand that he be around other people does not serve his need to heal, but I believe serves the needs of those who watch him to be able to actually see him… even when their solicitousness is probably doing him harm.

Understanding is coming very slowly to me.