5th Letter to Governor Rell and Others in Power in Connecticut

I guess I was very naive to think that all the people involved in this situation who had worked so hard to affect needed change for our son had actually accomplished their goals. It hasn’t worked so far. Now, I had to write the 5th letter to the Governor and others in the state to update them on our situation and to beg them for their help — for real help — not just lip-service help. Below is the letter I emailed this morning with names removed as appropriate.

From: XXXXXXXX
Subject: Update on XXXXX and Asking for Help AGAIN!
Date: February 27, 2008 10:40:23 AM EST
To: governor.rell@po.state.ct.us, attorney.general@po.state.ct.us, kenneth.marcus@po.state.ct.us, thomas.kirk@po.state.ct.us, jwalter@rushford.org, connbhealth@aol.com, lossrm@yahoo.com, namicted@namict.org, mary.mushinsky@cga.ct.gov, mary.fritz@cga.ct.gov, len.fasano@cga.ct.gov, prague@senatedems.ct.gov, cdr7077@aol.com, james.mcgaughey@po.state.ct.us, gwaterhouse@cacil.net, patriciadroney@yahoo.com, DPerch@courant.com, szanger@clrp.org

Good morning all:

Here is the latest on the situation with our son:

1. XXXX is on a waiting list with KUHN for employment services. Not sure when he will begin in that program.

2. Our son is currently receiving both Clinical and Case Management Services at Rushford Behavioral Health, and I have yet to see a treatment plan since his re-admittance on January 15th. In fact, I have never seen a treatment plan for Our son since he has been a client at Rushford for the last year and a half! What about his patient rights? Don’t any of you take this seriously?

3. Our son is on “hold” to move into The Corner House in Meriden, due to ongoing construction issues which involve the State of Connecticut.

4. Our son has been non-compliant with his medication since he came back with me to CT. This is due to re-involvement with friends who self-medicate and involvement with a woman 10 years his senior who had him driving her to work because she has a DUI.

5. Our son is also self-medicating again. This is due to several factors: His social group interactions, building frustration at having nothing to do and not moving into The Corner House as promised, lack of appropriate supportive services based on his needs and requirements, and lack of involvement from therapeutic and case management entities with our son’s family members, who have the most knowledgeable and reality-based understanding of what is going on in his world.

6. Our son has been making dangerously poor choices, such as sleeping in a car in 20 degree weather with the engine running all night! Staying up all night and sleeping most of the day, thereby switching his sleep schedule and possibly inducing a manic episode. Not taking his medications for days at a time and then re-starting them, which could trigger any number of health-related issues. Repeated lying to me regarding medication compliance, where he goes, whether or not he is self-medicating, drinking, etc. Meeting complete strangers on the Internet (women) and going on dates with them.

7. Last Saturday night, our son called me at 3:45 AM to come and get him, because the woman he was staying with (who is 10 years his senior) had thrown him out and all of his belongings were in her car — and it was freezing out. I went to get him, only to watch him scream at this woman, call her every epithet you can imagine, and basically get angry enough to frighten me. When I told him to calm down and that he should never talk to anyone with that type of language, he immediately screamed at me that I was taking the woman’s side, etc. It was a shocking and emotionally exhausting event for me. I took our son home and he was too wound up to sleep. My whole objective was to keep him calm. Please know that my Master’s Degree is NOT in Psychology, Social Work, or any other behavioral area. I am NOT trained to manage these issues!

8. Our son hounds me constantly for money, even to the point of waking me up when I am very sick with a migraine! Because I am his Representative Payee for his SSI, he never lets up for even an hour. Everyday he is after me for money, and when I say no to a request, he gets angry and reminds me in a very unpleasant way that this is his money, and not mine! He cannot understand that we are all paying for this money via our taxes, etc. So I have given up on trying to get him to understand.

The bottom line is this, after being back home for only 6 short weeks, I am totally exhausted again. Please remember that my husband and I have made tremendous sacrifices for our son, and there are some of you who have worked very hard to assist me in getting the services my son desperately needs, and I thank you for that. However, we, as a family, are BEGGING you for help — how many times do we have to ask? I am so thoroughly frustrated and disgusted at the way these systems of care are not integrated, and no one appears to talk to the other people they should be talking to! I have a son who is once again getting out of control, a clinically depressed husband who has taken more than any non-biological father should have to, and a step-daughter who has also been badly affected by years of what has transpired in our home regarding our son’s severe mental illness.

I get great lip service from people, they tell me they have emails I have sent out and they want to help me, but nothing ever CHANGES! After being in North Carolina for 3.5 months in a very controlled environment, I knew that our son’s medications weren’t adequately treating his symptoms, and when I wanted to tell that to our son’s psychiatrist at Rushford, XXXXXX, I was told that would not be necessary, because he would do a psychiatric assessment on our son. Where is the assessment? What kind of assessment was performed? What about the expensive and thorough neuro-psych evaluation that my Mother paid for back in August? Why aren’t my husband and I involved in this? Our son is SEVERELY MENTALLY ILL for God’s sake! His perception of reality is not like yours or mine — it is quite skewed. While his input is extremely important, he is not able to tell you what is really going on with him — in fact, he will lie until he gets what he wants, which is to have free rein of his life — always to the detriment of himself and others.

I am fed up with the lip service, and I am fed up with a system that was put in place and does not work as it should. That is not my responsibility — it is yours. I want immediate action for my son and family. He needs to be getting employment skills and training, and he needs supportive housing — he is not capable of living on his own. Maybe after lots of support and life-skills training he will be able to — but certainly not now. Now he needs everything he can get in the way of support — and so do I and my family.

My family has put up with the negligent and often rude behavior of many people in this system for 1.5 years now, and still our son is living at home wreaking havoc in our household. I will not have our family destroyed by my son’s mental illness or your inability to affect the required change in our lives. If this is how long it takes for the mentally ill population to get reasonable assistance in this state, then there is something horribly wrong with our infrastructure and systems of care. That alone should be of paramount concern to all of you on many, many levels. Please put together a plan that addresses the needs of my son immediately, as he is going back down a very bad road.

Regards,

The Parents