The Letter I Never Mailed to the Georgia Governor

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.”

Explore posts in the same categories: Day Programs, Mental Illness, Places to Live, Recollections

5 Comments on “The Letter I Never Mailed to the Georgia Governor”

  1. Rob Wilkens Says:

    Hi MentalHero,

    Long time since I stopped in, I don’t remember how but in the past when you were looking for others which schizoaffective disorder, you ran across my page. My page slowly fell apart, and during a psychotic break with reality (and two hospitalizations, in florida — remembering that I live in new york, and noting that I was down there alone) I took it down and unregistered the domain.

    Maybe that was a good thing.

    I re-started the site as robwilkens.name (instead of robwilkens.com) and now am trying to just talk about mental health topics of my own there.

    I refer to myself there just as a ‘schizo’ in terms of diagnosis, even though officially it’s schizoaffective, I’m not 100% sure it isn’t just plain ole schizophrenia because things which may have been perceived as ‘mania’ may have been paranoid psychosis and my reaction to it (similar to the types of fears your son is having of particular facilities, as mentioned in your letter).

    Stinks, I had gone 4 years without a hospitalization. I think being on Invega is the cause.

    I am in the process of switching doctors, next monday I see my new doc. Hoping it goes well.

    Take care,
    Rob

    Rob

  2. Hero Says:

    Hi Rob,

    I am so glad you are back. I am really sorry to hear you have been having a tough time again, needing to go back into the hospital. It seems to fit with my mood today rather well. I am just feeling plain angry with the injustice of these diseases, the treatments, the lack of understanding, the stigma, the whole ball of wax. I hope everything goes well for you from now on. I will try to update some of your links on this blog to your new domain so people (and the search engines) will be able to be find you.

  3. Rob Wilkens Says:

    My domain is back down.. I decided I couldn’t deal with the anxiety of some of the info there being posted.

  4. Hero Says:

    I understand. Do what you can when you can. No pressure.

  5. Kim Says:

    My heart goes out to everyone on here, also the youth who suffer with this illness.And to the parents who have to see their children fall victim to this.Sad,just sad.
    This is my first time really speaking out on a blog about this, it has been a uphill battle since my brother was diagnosed back in 1994, in his early 20’s. It just appeared out of nowhere.He was an active, productive, and vibrant individual with a social life and was capable of working to have means of an income.
    After he was diagnosed with schizophrenia-at times he has been helpless,depressed, and the others- loving and easygoing-which can allow him to be vulnerable and be taken advantage of. Especially, when our mother passed suddenly, God Bless Her Dear Soul. She had hardly any help or assistance and sacraficed her life to take care of him until my brother came and myself along.There are myths about it, as if they are violent and unstable-That iritates me about the ignorance,alas, till you are faced with it.
    All of the mentally disabled are not even close to that.Or on drugs or barbituates.That’s the ugly stigma.
    I’m finding more and more that they were born with it and snuck. Quite a number were once productive,and active individuals with dreams,goals, families and lives. It has changed my world upside down. Now my brother and I have been left with this huge responsibilty.
    And are left often times with regret-for him, a little bit of anger,exhausted efforts, and resentment that we have sacraficed our lives while his Dad walks around as if his son doesn’t exist or it is just a condition not an illness.
    I’m angry.There have been countless nights spent up with him having various episodes and visits to facilities, hospitals, and cooking,cleaning,feeding, and even physically assisting him with bathing and clothing-b/c he lives with us. He is not even in a wheelchair.
    His psychosis has to do with his brain signals are off from his body-making him think he is physically impaired.I’ve been dealing with this since I’ve been 15 and my mother was alive. And where in the hell is the concern for these Human Beings and the Ones who have to the Ones that take care of them-Certainly in Texas-None?!
    How can these people get paid to just sit around and gamble with ppl lives putting them on “trippy” experimental drugs.
    Seems like he is worse the more he is on them.
    I am speaking out on behalf of this friendly,caring, seeking companionship, who wants a life his own.
    And I don’t want to sound selfish, I want a life too!
    This is becoming a more widespread epidemic with more of our armed forces and soldiers coming back from war.
    We need a better system and treatment and place for them to live and go that are regulated.Where they are not being abused and mistreated.
    Along the way, I have met a lot of decent ppl. crying out for help and frustrated and disgusted how they have been shuffled around and ignored and the families that have been fighting for a long time.
    Hell, I would lash out too if ppl slighted and overlook me.
    For Godsakes, these are Human Beings!
    I am compelled to also contact my state rep. and congressman upon forming a coalition to address this huge problem.
    No harm intended-but, you haven’t to be in a wheelchair or on a walker to get assistance.It is just as serious b/c there are many ppl like my brother who are becoming or already chronically mentally ill.

    I have to say there are far few in btwn. that still communicate with him-like some family and friends so he doesn’t feel isolated or worse and he does have a best friend. I thank God who still contacts him.To all of you out there that constantly struggle with this day to day. I do sincerely, feel your aggravation and pain.I am so furious with this Crap and tired!
    My God, it’s 2014 and something needs to be done about this, it’s not going anywhere or getting any better alone.Take Care and God Bless.

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