Saturday, February 7, 2009

AAAAAARRRGGGGHHHHHH!

This is long and I apologize, but I think I may just lose what little sanity I have left. I don’t even have a song title to describe it, that's how you know how bad it is.

My daughter is back in the hospital. We have not had any success in treating my daughter’s Bipolar Disorder and Eating and Self-Injury Disorders despite almost two years of medications and intensive therapy, individual and family. There’s been talk therapy, cognitive behavioral therapy, music therapy and art therapy. There’s been ANAD support groups and self-injury support groups. We have been to and through numerous psychiatrists, psychologists, inpatient programs, out patient programs and partial inpatient programs at 5 different hospitals.

When I put my child in a treatment facility, she doesn’t get better, she just gets better and more skilled at being an anorexic or self-injurer.

We have completely exhausted our private mental health care coverage and have had no option but to turn to Medicaid for hospital admissions. When this happens, the family is assigned a caseworker who always seems to be a very nice person, but also one who is obviously just overworked and bordering on burn out. It also seems that when you go from private insurance coverage to some sort of assistance, the social workers in the hospitals can’t bother keeping the parents informed of anything, because they are too busy reporting directly to the state caseworker.

Yesterday, I was becoming increasingly frustrated as my daughter had been admitted for 53 hours to an inpatient psychiatric facility and despite all the messages I had left, I hadn’t received one phone call back from anybody to let me know how she was doing.

As I was pacing my living room floor, our caseworker called wanting to know if I could FAX him copies of our latest paycheck stubs because the ones I had previously submitted had been misplaced. I said “sure” and he asked how the doctors thought my daughter was doing. I said I didn’t know because I had yet to hear from anyone despite leaving messages. He thought that was “strange” because he had already received four updates on her condition.

The caseworker must have contacted the social worker assigned to my daughter on the unit because amazingly, she was in contact with me a short time later. This was around 10:00 AM and she wanted to know if we could come in for a family session with her at noon.

I told her that I could be there, but my husband was at work. She said that was fine and I arrived at the hospital at 11:55. She finally let me in to the unit at about 12:30.

At times, I feel like I really need to learn to be more patient with people, but that’s beside the point.

I asked why it took so long for her to contact me and she said it was because my daughter had previously had an extended admission to this hospital and she needed the time to review all of the charts and notes, etc.

Breathe. Ok. Would it really have taken too much effort to just call and tell me that?

After answering the standard questions about my drug and alcohol use, she wanted to take some time to “delve into our home life” because the previous social worker had in her notes that she believed my husband was “not on board” with our daughter getting better.

WHAT? Did my daughter say something like that?

No, I was told our daughter actually speaks quite highly of both of us, but my husband had missed several family therapy sessions before and he absolutely refused to attend these required so-called support groups and well, she can’t help but notice that he isn’t here now, either.

I was insulted. After ignoring all of my messages, she called me to schedule a family session on two hour's notice. My husband was at work. We have no insurance, somebody in the family has to work to pay these idiots for all of the non-help they provide. We’ve repeatedly asked to have these sessions during evening hours, but evening hours aren’t available because, you know, the social workers only work 8 to 4.


Ok, then. I told her I was insulted and she said that perhaps she could have asked that question “a little better”. I said you didn’t ask a question, you made a statement. A question involves raising your voice a little bit at the end and suggests that you need some further information.

Not that I feel the need to defend myself, but we used to go to these “support groups”. The last one I went to a woman was whining and crying because her anorexic daughter, who you could tell was really trying very hard to recover, became upset with her over a comment she had made.

Even if anyone hasn’t witnessed an anorexic struggle trying to eat food, it will be simple to comprehend the insanity of the story I am about to tell you.

The daughter, who was nothing short of skeletal, was released to home and trying to follow her meal plan. She became upset with her mother who said (while she was eating)...and I quote....

“It’ll be a shame to waste your current clothes when you gain weight and we have to throw out the old ones and keep buying new.”

I looked at my husband and I’d say dumbfounded described what we both felt.

I couldn’t keep my mouth shut and just said...”WHAT?!?!?!?!” That called for an interrobang.

This woman was so idiotic that even the mom who thought that mental health issues were ridiculous and that all her daughter really needed was some more “retail therapy” looked at her cross eyed.

Apparently, the woman’s hatred of waste is more important than her own daughter wasting away. I suggested that perhaps she could donate the clothing and then it wouldn’t be “wasted”. She didn’t seem too keen on the idea, but then again, I was speaking to a woman wearing a POLO SHIRT WITH A SWEATER tied around her neck.

Even in the height of it’s popularity during the “prairie, punk and preppy” days of the 80’s, this was such a bad look that I am unable to locate an image of anyone even wearing this on the entire internet. The style is mentioned, but it seems that all photos showing this style have been destroyed. Understandably so.

It’s WAY time to chuck the sweater, Buffy, and get a clue.


Anyway, these “support groups” made me want to strangle people and swallow Xanax and I have much more patience than my husband does with the general population.

When the therapist leading the session asked the woman “How do you think words like that make your daughter feel?” and the woman asked for some time to think about it, we had both had enough. Good God. Just let me choke Buffy until she can no longer speak. Problem solved.

I also have an extremely hard time understanding the anger that some of these people have at their children for symptoms of an illness...OMG! If parents want to be angry that their child has an illness, fine. That’s probably good, it makes you a better advocate, but to be mad at the child and develop this “me and against them” mentality and to speak badly about your children regarding their being sneaky or manipulative in order to find ways to injure themselves as if it’s a personal attack against the parents is nauseating to me. That is a symptom of the illness!

So...no, I am not taking away time from my other children nor is my husband taking off of work and losing money to listen to that crap. It’s no wonder these places are just revolving doors with the same kids going in and out all the time.

I was told by the social worker that it would be best f we just put her in a long term residential facility which, affordably, vary in cost between only $8,000 and $50,000 a month.

Ummm, hello? I don’t make $50,000 a year and did I mention that we have no health insurance for my daughter any longer? Not that they would pay for that beyond like 28 days, even if I did.

Today the hospital is telling us that they are not equipped to handle her because it’s impossible for them to watch her 24 hours a day (why?) and she is still finding ways to injure herself on the unit. They can’t transfer her to a hospital more equipped to handle her because she is a Medicaid patient and that hospital won’t deal with Medicaid.

They don’t want me to bring her home, because they can’t fathom a way that I could watch her 24/7, either, and if something were to happen the social worker said she would be devastated.

THE SOCIAL WORKER would be devastated?


Her only suggestion is to put her in a long term facility. The one relatively near my house is almost $30,000 a month. I called and this place requires a minimum three month stay commitment (with two months payable in advance) and she’d get the same seemingly ineffective therapy we’ve been doing non-stop for the past two years, but, they do have cameras in the rooms and a lovely garden area for journaling and socializing with girls with similar issues.

She means socializing with other teenagers who have self-injury problems who teach each other ways to hide it better and different methods to use when their parents discover one of them and prevent them from doing it.

Seriously.
Did you know a pencil eraser could cause serious friction burns and scarring? Neither did I, and neither did my daughter until she began self-injury treatment.

I don’t know what to do. I’m tempted to have her released and handcuff her to me until I can find someone that actually knows what they are doing and can help with this. This doesn’t seem to exist in the greater Chicagoland area.

My daughter may have a serious mental illness, but, it’s no wonder she is not getting any better because the entire treatment system is insane.

7 comments:

This Eclectic Life said...

Oh, Jessica. I wish I could do something to help you. I know you have to be so frustrated that you are foaming at the mouth. There has got to be some help out there. I think the whole medical community is insane, myself. Arrgh, indeed.

SmileyGirl said...

I can't do much to help your situation other than to say my thoughts and prayers are with you. And your daughter is extremely lucky to have a family with such genuine love and persistence for her well-being - no matter how much frustration it causes. You are a saint and someday she will really be able to appreciate the sacrifices. Hugs to you!

Dustin said...

My heart aches for you and your daughter and the rest of your family! This post really almost had me in tears at how horrible it must be to be going through all of this. I so genuinely wish there was something I could do to help...

Jenny McB said...

"She means socializing with other teenagers who have self-injury problems who teach each other ways to hide it better and different methods to use when their parents discover one of them and prevent them from doing it."

So true, the things they learn socializing.
If your daughter is under 21 with a documented disability then by law, your school system has to provide her with free and appropriate education. This may be your way to pay for alternative placement. Call your state education board or find a special ed. advocate. If you have any questions, post a comment on my blog and I will send you my email address.
Also, if you live near a medical school, you may find some some people who haven't been turned into uncaring trolls.

pjazzypar said...

Hey RC,
Social workers, Case workers, etc. are always looking to lay blame on someone. Take what appears an attack on your husband with a grain of salt. I work as an LCDC (licensed chemical dependency counselor) for adolescents and I see a lot of self-injurious behavior among the girls regularly. I tell you it seems contagious, a couple of girls do it and then it becomes 3 or 4 in no time. I make a contract with them to come and talk to me (or someone they feel comfortable with) when they want to injure themselves. Sometimes they do and sometimes they don't. My heart goes out to your daughter, you and the rest of the family. I am sure this greatly impacts everyone in the household.

Damien Riley said...

JTRC, I finally sit down to read your blog and get this very sad post. I feel for you. I have a couple thoughts: 1) Force her to spend time with you. It's probably freezing cold there right now but I could envision walks ... long walks. This is of course WHEN she gets out. 2) Have you exhausted counseling trips for marital counseling? Often times marital issues in counseling are billed with unrelated names and vice versa. I think a mom/dad/daughter session or set of sessions could prove highly fruitful ... even if you feel your marriage is doing perfect, maybe that could be the path into payment. I kind of grasping at straws here trying for a real solution.

3) Remember one day in the not so distant future she will be healthy and everything you guys do right now will be an eternal memory. Stay positive and focus on the possibilities instead of the brick walls (I acknowledge you are hitting many of them).

Hang in there and remember your own mental health is the most important thing here. If you aren't strong, how can you be strong for her? Try the local church as well, sometimes you can get great assistance there. Like with everything though, be wise.

bsmommy said...

Hey Jessica...I've been on blog hiatus, but just checked in on you and wanted to say I wish I had some advice. I'll keep you guys in my prayers. I hope you find some appropriate help soon...there has to be some way to help all the daughters out there with these same problems. I know you must be hurting as a mama, and I sympathize. I can't imagine what you are going through, but I'm here (again finally) if you ever need a chat.