The Forsaken: One parent battles the mental illness system

[proud2BlibKansan]

Missouri’s failure to properly care for the mentally ill endangers communities, citizens and families. Here is a window into one woman’s quest to get help for her son. Names are being withheld because of privacy considerations.

She holds the phone with a shaky left hand, and has a hastily lit cigarette in her right. It’s her second smoke in half an hour.

Her ranch house in Independence is in one of its orderly periods. The holes in the walls have been plastered over. The shattered glass door has been fixed — again. Overturned and heaved objects have been picked up and put back in place.

But this house is always on edge. As is its owner.

Her son, who is in his early 20s, is seriously mentally ill. Missouri’s system for dealing with people like him is gravely deficient. Put those circumstances together, and any knock on the door or ring of the phone can signal disaster.

The mother is engaged in one of those phone calls now.

more . . . http://voices.kansascity.com/node/3550#comment-17041

[Jambalaya]

1. Link to Parkinson found

Published 31 mins ago by Genetic Engineering News



Penn study finds link between Parkinson's disease genes and manganese poisoning

PHILADELPHIA A connection between genetic and environmental causes of Parkinson's disease has been discovered by a research team led by Aaron D. Gitler, PhD, Assistant Professor in the Department of Cell and Developmental Biology at the . Gitler and colleagues found a genetic interaction between two Parkinson's disease genes...



I didn't know where to post this,but I thought it would be of significance to many.

I got this from silobreaker website,which contrary to its name,is not related to agricultural products.

WAY cool site.

Check it out.

[lumberjack_jeff]

4. Manganese causes Parkinsons? Whew. For a sec, I thought you were going to say mercury causes autism.

And we can't have THAT kind of crazy talk.

[hedgehog]

16. Two different situations. Maybe Parkinson's is can be caused by life long accumulation

of metals, maybe not. Excess exposure to mercury can cause the shakes, so who knows? MAybe Parkinson's is a symptom caused by several independent causes.

[varkam]

20. I thought you were going to say that HIV causes AIDS.

And we can't have THAT kind of crazy talk.

[Holly_Hobby]

15. Do you have a link to the article?

My mom has Parkinson's acquired by taking the psychiatric drugs Risperdal and Depakote. TIA

[flyingfysh]

2. Arkansas isn't much better

They have very few beds for seriously mentally ill people. My aunt was caring for a seriously schizophrenic grandson. She lucked out, they managed to get him into one of the very few beds available. She has enough to do, coping with a husband with Alzheimer's.

[marylanddem]

3. The National Alliance on Mental Illness (NAMI)

is a grassroots organization non-profit in every state that is radically reforming attitudes toward mental illness.
I strongly urge all DUers who themselves are consumers of mental health services, or have family members with disorders, to get involved with their local NAMI chapter. Mental illness is a trauma for all involved, and we need to fight for better conditions together.

[lumberjack_jeff]

5. Developmental disability advocates are beginning to recognize that NAMI

is a good partner. We share many of the same issues.

[bobbolink]

6. NAMI is for families. It's not good on patient rights, and very few "consumers" are

very happy about NAMI.

It's done more to separate families and "consumers" than just about anything I know.

NAMI doesn't hold a patent on "information".

[marylanddem]

10. I beg to differ. In Maryland consumers (those dealing with a disorder) are a vital part of NAMI at

every level, teach classes, offer support groups & contribute a great deal to the relationships/understanding between family members and those dealing with illnesses. To say NAMI "separates" consumers of services from their families is blatantly untrue. NAMI's mission is to help erase the stigma from these brain disorders, educate & help develop understanding among all. "Consumers" sit on county boards of directors & are immensely valued members.

[bobbolink]

22. I don't expect defenders of NAMI to understand the harm that it does.

I just wanted to put the information out there for those who are open to hearing it.

"NAMI's mission is to help erase the stigma from these brain disorders,"

And to spread much misinformation, and to fight for laws against self-determination, and locking people up against their will, and taking away any right they have to refuse treatment.

Things that the rest of us take for granted, NAMI has fought against.

I've talked to too many people who have been victim to these policies to swallow it all whole.

Again, this is for those who don't have a dog in the race, and will look into it in an unbiased manner, and learn that people are being hurt because of the policies of NAMI.

[proud2BlibKansan]

14. NAMI was a godsend for my family

I very much disagree with you.

[sandnsea]

17. NAMI is the best advocate out there

Every person I have ever known who has needed help in getting services for a family member has relied on NAMI. If there's a better group, I'd like to know who it is.

[Ocracoker16]

19. I have had a positive experience with NAMI

I am a member of my local chapter. I completed the NAMI Peer to Peer class two years ago. There was plenty of information about mental illnesses, but I especially liked some of the activities relating to navigating the mental health system as a consumer. We learned about the pros and cons of the hospital setting. We also discussed how to communicate with our caretakers effectively. Finally, I got to draw up an advance directive for mental health care. I completed that with the help of family members. I have met some families that have participated in the Family to Family program. They said that having teachers who were family members of individuals with mental illness really helped them understand and accept their relatives. They also liked talking with other families in the class about their experiences with their loved ones.

I understand that not everyone finds NAMI helpful. I just wanted to share my own personal experience with NAMI.

[EFerrari]

7. When we moved out of one of our houses, the buyer asked me

"How did the walls get this way?" because there wasn't one of them that I hadn't patched over and over. At the time, if he'd looked at my furniture, he would have seen a lot of mending, too. What a life that is. I hope this lady gets what she needs and may all her Christmas trees refrain from flying out of closed windows.

[proud2BlibKansan]

8. .

:hug:

I hear ya.

[Mnemosyne]

9. KnR,

It is so very hard caring for someone with serious brain illness and even tougher being the one suffering from it.

I've been both places.

:grouphug:

[marylanddem]

12. It really is a trauma for all involved.

Check out "family-to-family" courses through your local NAMI chapter and "peer-to-peer" for consumer educational groups.
After my son's unsuccessful suicide attempt (he's bipolar) I was fortunate enough to hear about the family education group & it was an incredible gift. courses are free & really worth taking.

[pacalo]

11. Punched-in closet door here. And his bedroom walls are covered with graffiti.

The punch in the closet door happened during his senior year of high school -- before I knew what his illness was. What a year of struggle that was. He had been put on a 3-day suspension due to a classroom outburst, & during that 3 days he was attending alternative school. Riding on the bus during that time, he was observed by a teacher on the bus to be under the influence (marijuana), & subsequently expelled & assigned to alternative school permanently.

Just to get him graduated was a struggle. I had to prod him every step of the way, from minor assignments to a major senior project he was required to do in order to graduate.

He acted as if he didn't give a hoot about anything; it was like talking to a wall. I thought he was depressed, so I took him to a psychiatrist. During the first visit with the doctor, you'd have thought nothing was wrong; he was congenial & seemed to enjoy talking to the doctor. In the following visits, the doctor would see my son alone. Doctor/client priviledge was in effect; the doctor would tell me nothing.

The attitude continued until my son graduated. My sister-in-law, who was an assistant principal at my son's school, told me that his teachers recognized what I was going through with my son, that if not for my help, he wouldn't have graduated.

It was a year later that my son came into the kitchen where I was late one night & in a terrified state, told me that "they were going to kill him". He started crying &, hugging him, I asked him who was he talking about?! The government. He also thought that the girl who lived across the street was sending him messages.

We took him to the emergency room late that night & that was when he was first diagnosed as schizophrenic. I look back now at his senior year & I believe that was the onset of his illness.

He lives with us & is generally low-key, but I'll live the rest of my life worrying about what will happen to him when I & his dad are no longer here to watch over him.

Like the mother's struggle in the article, I'm getting dead-ends in getting help for my son. It's just not the state of Missouri -- it's everywhere in this country.

[proud2BlibKansan]

13. Sounds like my sister's story

She was a freshman in college when she got sick. She is now 51.

She lived with my parents as long as she could. They set up a trust fund for her so she now gets a little income from it since they died.

A few years before my mother died, we got my sister on Medicaid and SSI. She now lives independently but has a case worker and is active in a day program. And most of the time, she does well. As long as they don't change her meds she is okay. (But it seems like every time she gets a new doctor they change her meds.)

I feel your pain. My parents worried until the day they died about what would happen to her. My dad, on his deathbed, made us promise we would always take care of her. But since she values her independence, that is not as easy as it sounds.

And the mental health system is so screwed up it is just infuriating.

:hug:

[pacalo]

21. Thank you, proud2B.

I know what you're talking about when you say she likes her independence. They don't want anyone telling them what to do, no matter how tactfully said. I know my son has reached the point in his life where he needs his independence, but in reality, he couldn't survive without supervision. He resents our guidance, though. What a double-edged problem.

:hug:

[hedgehog]

18. Two factors make it very difficult to get treatment for the mentally ill

1. Well meaning advocates back in the 70's fought for the independence of the mentally ill so that it is difficult to get an involuntary admission or to force treatment AND parents or other guardians are shut out if the patient is over 21.

2. Politicians closed state mental hospitals just when new treatments were coming on-line. Unfortunately, they somehow all forgot to provide the community based programs that were going to be part of the reforms.

Ironically, some people are still fighting against involuntary treatments, so I'm not going to say that some people's rights are being abused to this day. The other half of the problem is that most people say NIMBY until their family is affected.

[nashville_brook]

23. kicking for later