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Family Support and Mental Illness Advocacy: "Lucky"?

July 21, 2011 Randye Kaye

"Ben is so lucky to have you."

That's what I've been hearing a lot lately - well, from those whom I am not criticizing for shoddy case management.

And, that's a nice compliment for sure - but, in the immortal words of Carrie Bradshaw (Sex in the City): "I couldn't help but wonder...": What about all the people with mental illnesses whose families have given up on them?

[caption id="attachment_153" align="alignleft" width="119" caption="We all need a hand up sometimes"]We all need a hand up sometimes[/caption]

What About the Mentally Ill Whose Families Have Abandoned Them?

If you are reading this blog, I can only assume you are in one of those families who get it: Family matters. But, with Ben still in the hospital (five weeks so far this time, but making progress at last), I find myself wondering about the patients who never seem to get visitors. Who roots for them? And when was the breaking point for their parents, siblings, children, friends?

This I do know: I was close to giving up on Ben, several times, before I found the wonder of educating myself about his mental illness. I stopped hating my son when I realized it was not his "fault" - and along with that came the heartbreak of realizing that he truly was ill.

NAMI Family-to-Family provided the basics of this education. E. Fuller Torrey's Surviving Schizophrenia gave me the facts that refuted the

[caption id="attachment_157" align="alignright" width="104" caption="Surviving Schizophrenia"]Surviving Schizophrenia[/caption]

ridiculous idea that Ben's illness was somehow my fault, or my family's fault. I then stopped feeling guilty (well, most of the time) and could focus my attention on the important question: "What now?"

Resources for Families Coping with Mental Illness

This education continues for us all. Here at HealthyPlace Bookstore, there is an excellent list of resources. NAMI has great links and articles. At their recent Convention, I met (among many great connections) the folks from Treatment Advocacy Center. Want to watch a powerful video about three individuals with severe mental illness and the families who fought for them? Watch "Stopping the Revolving Door," a heartbreaking yet inspiring documentary.

Want to see how schizophrenia can respond to treatment and family involvement? Watch the film, Living with Schizophrenia.

All around are those who want to foster hope, respect, and possibility. I hope my book will do the same. I hope my son's caseworkers will open their eyes to what wonderful potential lives underneath his current symptoms. As I wrote to them recently, in anticipation of an upcoming discharge meeting,

"If in any doubt, please just ask yourself:

· Does Ben have proper medical care/supervisions with follow up?

· Does he have the structure in place to succeed?

· Does he have purpose to his days? Does anyone need him?

· Where is his community? Who does he eat a meal with? Where can he go to be with people that is easily accessible? Ben does not do well in the kind of isolation this “independent living” program forced him into, too quickly. He wound up at the diner, sitting for hours, just to be with people. That is a big clue.

Thank you for working with me on this. Remember – I am Ben’s conservator, estate and person, and also an avid advocate for those with mental illness. I would like nothing more than to report success – that improvements came out of these mistakes – in my blogs and in book interviews.

The need for "Person-Centered Treatment" within penny-wise-pound-foolish budgets, required assisted outpatient services, and support for medication adherence are all hot legislative issues, and I know that in CT you are especially limited by the lack of power they allow for case managers as well as families.

But Ben is a person, and there is still a way to work together, and with him, for the treatment he needs to stay functional, while honoring the fact that those with mental illness don’t always “know what’s good for them”, especially while impaired.

Thank you. Randye

APA Reference
Kaye, R. (2011, July 21). Family Support and Mental Illness Advocacy: "Lucky"?, HealthyPlace. Retrieved on 2022, May 16 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2011/07/family-support-and-advocacy-lucky



Author: Randye Kaye

Dr Musli Ferati
July, 31 2011 at 9:36 am

Even mental illnesses are disorder of psychic functions as results of functional disturbances of the brain, family support plays important role in the display,discourse and outcome of respective mental illness of any member with psychiatric disease. Hence, evil family environment has negative impact to mentally ill member of the same family. In this case, I would to mention the postpartal psychosis of a 32 women, who has, at the same time, abusive husband. Amongst other psychic, physic, emotional maltreatment activities, he for many years is gambler. The same has destroyed family economy, causing many torturing act to her wife, whose psychosis is paranoid like syndrome. Besides this the above mention husband has primitive and destructive view-point to actual mental disorder of her wife. These and others abusive acts toward her mentally ill wife, aggravates the definitive prognosis of this psychosis. I meant that it should to treats int the same time the abusive husband of this women with two children.

Randye Kaye
July, 23 2011 at 6:51 am

Hi Rossa - once again, thank you for providing another possible view. I guess you and I will have to agree to disagree on this one. I did see Torrey's book as full of helpful information beyond prescribing medications, and I think I speak for many families when I say we certainly explored - and continue to explore - many other aspects of recovery and family communication. Yes, meds alone are not the answer. Perhaps research will catch up someday to an integrated approach that will help us all.
thank you
Randye

Rossa Forbes
July, 23 2011 at 1:48 am

Randye,
I don't like E. Fuller Torrey, as I'm sure you know. I was given his book right off the bat by a well-meaning person, and I had to stop reading it. To me, Torrey promotes the idea the popular misconception that the family has no role in their relative's "mental illness," that the person is biologically damaged and the only thing families can do is to medicate them. This has not led to good outcomes. Why? Because the only weapon a lot of families had was to tell their relative to take their meds, they were ill. So-called mentally ill people don't like to take their meds, for very good reasons as it turns out, and then the family has no recourse but to wash their hands of them. So, a case can be made that the number of people on the streets are there because of the kinds of policies that Torrey promotes. Now, suppose a family decided that maybe there was something that could be improved about the relationship and they were willing to forego ego in favor of learning from their relative? I suspect that a lot of people who end up with the SZ label, do so because they are not very good at speaking up for themselves. So, they show their "dissent" by becoming psychotic. They haven't learned how to get in touch with themselves and nobody is helping them do so. If it's a biochemical illness, after all, the relatives are off the hook in terms of a little self-examination. Psychiatry has been so focu$$ed on the chemical cure for the past fifty years that it has not invested any time in helping families and patients learn to live together in harmony. In fact, psychiatry deliberately down-played the benefits of psychotherapies, as if they were all like Cognitive Behavioral Therapy, which is not, in any case, for someone in the acute stages of SZ. People would try CBT, and it didn't work (naturally) and then psychiatry would say, well, that goes to show you that meds are the answer.
...Rossa

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