Mental Illness: What Do Mothers Know, Anyway?

August 10, 2012 Randye Kaye

Answer: a lot.

At least, given the opportunity, respect and resources, we can learn. So can anyone who loves someone with a mental illness.

Last week I had what I thought was a terrific idea: why not get a parent's perspective on the recent tragedy in Aurora, the public perception of schizophrenia, and the value of treatment for mental illness? After all, family members live the experience of seeing a loved one's decline into mental illness, and (if we are informed, supported, and -let's face it - a little bit lucky) the benefits of proper treatment.

Schizophrenia expert? Not just an M.D.

My book, Ben Behind His Voices, is a memoir-with-resources that shows our family's rocky journey to a place of hope, as Ben goes through his own path through illness, diagnosis, recovery, relapse, and finally to where he is now: engaged in life, in school, clean/sober, and even employed.

[caption id="attachment_1032" align="alignleft" width="170" caption="Speaking in Arizona "]Arizona Appearance[/caption]

The book has now been out for almost a year, so we look past the "new book" reason for PR, to opportunities to spread its message of hope, respect, understanding, and the need for earlier detection, better research, and the right services and treatment.

Maybe, with those things in place, the tragedy in Aurora could have been prevented. Maybe another one can be prevented if we take smarter actions.

So - I presented the idea to my publicist, offering myself as a media guest to present the family point of view, with my back-up credentials as author, HealthyPlace blogger, and NAMI educator.

My publicist was very excited about the idea. She thought it was a perfect, current, angle - especially since schizophrenia is currently in two media spotlights: one of tragedy (Aurora) and one of possibility (the new TV series Perception).

The result? Not one booking.

Why? They preferred to book doctors and other "experts" on schizophrenia.

What do parents know about mental illness?

Okay, I get that. Still - what involved parent has not become an

[caption id="attachment_1033" align="alignright" width="96" caption="The Only Experts?"]doctor [/caption]

expert in his or her own child's mental illness? We know, first-hand, the heartbreak of the losses, the difficult process to accept needed treatment, and (again, if we are lucky) the joys of even the smallest progress.

Our credentials? We do not give up. We witness everything in our loved ones. We see, if they live with us or see us frequently, the ups and downs of the recovery process; we know right away if symptoms are reblooming.

Who is to say we are not experts, too?

Could Proper Treatment have Prevented Tragedy in Aurora?

I know we are lucky that Ben finally responded to treatment, and that he (fingers crossed) continues to improve. We also know that without the help of others, we might have felt we had no choice but to give up. But - with NAMI programs (especially, for us, Family-to-Family), websites chock full of info and support like HealthyPlace, and books that shared mental illness stories and information, we were able to become "experts" in at least one thing: Ben's illness and recovery process.

What if James Holmes' parents had been given the same opportunity? What if Holmes himself had received proper treatment?

Jared Lee Loughner, last year's "shooter" in Arizona, has just pleaded guilty to his charges. After treatment (too late for his victims), according to the Huffington Post, he was finally able to understand what he had done. His parents? They "who observed from a back row, sobbed and embraced after he walked out looking frail on his feet and gazing straight ahead."

What if he had understood all this before he fired shots?

His parents know, I suspect.

Yes, we are experts too.

Sure, I would have loved to add The Today Show, Dr. Drew, Dr. Oz, or Good Morning America to my list of "appearances" to spread our take on the mental illness process. But an M.D. seems to have trumped that. For now, my book and blogs will have to serve to spread the messages.

But I await the time when families will be more respected and - when possible - included in the recovery process. For we - with the "3 Rs" of respect, resources, and realistic hope - are experts too.

APA Reference
Kaye, R. (2012, August 10). Mental Illness: What Do Mothers Know, Anyway?, HealthyPlace. Retrieved on 2024, May 24 from

Author: Randye Kaye

Susan K. Stewart
January, 29 2013 at 3:32 am

As a Family-to-Family instructors, my husband and I tell family members that they more about their loved ones mental illness than any of the doctors. We family members must continue to be proactive.
What makes it worse is that parents are often vilified as the problem in mental illness. I've had more than one doctor tell me that I caused my son's mental illness.
The media treatment seems to always put the parents as at least part of the problem (why didn't they do something? if the mother hadn't owned guns, parents are too involved, not involved enough, ......). In nearly every case that I've researched the parents were trying to do something but were blocked by the system.
Hang in there, moms. We'll get the message out somehow.

marj anderson
August, 20 2012 at 6:06 am

I am in a rush but I want to say that maybe 3 wks. ago NPR did a story interviewing @ least one parent of mentally ill person some time after crimes were committed.Several families were mentioned.I don't know if that will help.I don't recall which show it this may not help.

In reply to by Anonymous (not verified)

Randye Kaye
August, 20 2012 at 9:25 am

thx for the info! anyone see it?

August, 15 2012 at 7:11 am

It is a shame that no one took you up on your offer. Loved ones have a first hand knowledge that doctors like to think they have, but often don't. I remember when my husband sat in a psychiatrist's office in a deep depression and this "doctor" couldn't see it. Meanwhile at home, where he showed his true face, he could barely function. Keep getting the word out wherever, whenever you can. People need to know that they are not alone.

Kathy Beardsworth
August, 13 2012 at 10:30 am

You can have all the "book" knowledge in the world when it comes to mental illness, but until you actually live it 24/7 with a loved one....I truly believe you don't totally understand it. And how can they??.....Even reading books and blogs and wonderful web sites such as this.....every person with mental illness is not exactly alike. I've sat with doctors and tried to explain....only to come away frustrated knowing that they just don't get it. For instance...(and this happens over and over again)..."How are you Karlee?"...."I'm fine""Good, good. How are the meds working for you?"......"They're fine"...."Ok, here's your refil"....and here's me...."but what about out in the lobby when you told me my whole family are drug lords?""Is that true Karlee?"....Karlee..."Well they are"....
So, do you get what I'm saying here? The families are the true experts...doctors have book knowledge.....but we "know what we know".
A frustrated Mom....tired of fighting this messed up system......but not willing to give up on her kid.

August, 11 2012 at 7:59 am

Would that my mother had been even a Novice in mental health matters. She had her own problems and when mine came on, she apparently had no idea of what to do and no interest in finding out what to do. But that was in the year 1961: no Internet, no TV shows about mental illness, no readily available literature, no link to information, no understanding of the term "mental illness". You were either crazy or a normal person was my understanding.
Keep putting the word out in any way you can do so. Your efforts may help only one family, but that one family is better than none at all.

In reply to by Anonymous (not verified)

Randye Kaye
August, 11 2012 at 3:46 pm

Thanks for the vote of confidence! That is my hope as I continue to write. And you are right - your Mom simply didn't have the resources available to help her learn. Hoping that will continue to change. Hope you are doing well - and thanks so much for writing!

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