Hey, everyone. Today I started thinking about all the ways

[EFerrari]

that my family has been invalidated as a family since Doug was diagnosed.

This is my thinking: if the powers that be can redefine your family as "something else", then they don't have to respect your rights or your experience. Then, you can be disposed of in the most convenient manner -- by police, by social workers, by therapists, by the system.

Does this seem true to you?

I first noticed this when Doug started having violent episodes. Everybody, EVERYBODY rushed to conclude he was a wife beater and NO ONE rushed to look for causes. Eventually, I saw that his brain was being short circuited and once he got his brain back, that behavior VANISHED.

And in the process, many people tried to convince me that he was my enemy. Cops, therapists, deputy district attorneys, my own family, his own family, friends. I have no idea how I managed to hang on to my own viewpoint, really, after all of that.

The form it took was re-framing. "He's not your family, he's your abuser." When in fact, the outbreaks of violence were just a note in the whole composition.

Don't mistake me. I'm not in any way advocating for tolerance of violence. But there are many reasons why a person resorts to violence and in our case, it was undiagnosed paranoia, not at all a compulsion to control women which is the hallmark of an abuser. There is a difference and an important one at that.

I've no clue how I managed, in those scary days, to discern this difference myself. But I did and Doug hasn't behaved in that way since Sept 10, 2001.

But, to get back to my original idea, in this period of quiet, I've understood that his therapist has been telling him for years that I am not hie wife but his roommate, not his family but his caretaker. That's really twisted. And, it's really common. And it needs to stop because our families need support and care, not invalidation that makes us easier to manipulate and dispose of.

I'd be really interested to hear your thoughts because I think I have to write about this and will submit it to OpEdNews.

:hug: to my favorite forum on DU

:grouphug: for the much needed support you've given me.

Beth

[mopinko]

1. up one side. down the other.

in spite of repeated assurances that if we got my daughter into "their program" whatever that was, there would be family therapy. the closest we came to that was 3 separate sessions, with 3 different social workers, when she was in the hospital. obviously, you don't make any progress that way. their idea of follow up was a weekly 15 minute "med appointment" where we spun the giant wheel of "cocktail".
it is still a little hard to handle that her tdoc really felt a need just keep us out. not only refused to have even a couple of sessions together, when we asked about setting us up with someone who could work with all of us, he said- have you ever thought of taking some parenting classes? as though he bought into her view of her problems were my fault, and her view of me as uber-bitch, source of all pain, was correct. after all, i had homeschooled them, i must be nuts.
and the school people? times 100.
i really shudder to think of what could have happened. in that situation, you just bounce from one incredibly painful moment to the next. being a big mouthed, unconventional, disrespectful, anti-authoritarian smart ass, it was all white water.

[EFerrari]

3. That's exactly the kind of bs I mean!

And who benefits? Not you, not your daughter -- hanging onto that just makes it easier for her to be "processed". It's crap.

They tried to "other" me in Los Angeles. While they weren't giving Doug a single second of appropriated therapy AND had his meds wrong. All they had to do was try to make me feel responsible and then they were off the hook for RESULTS.

Geeze.

[politicat]

2. It's difficult to deal with the larger group, Beth.

That's the sad truth. When you have a client who has a problem, a therapist should be treating the whole family. But it gets really hard, really fast, and at least in community mental health, it's nearly impossible to work it because there are too few therapists, too few hours and too many clients. We end up having to pick whether we can treat the holistic family unit, or concentrate on the individual, who needs the help more. I hated it. Treating a person without treating the whole family is like treating a gangrenous finger without giving systemic antibiotics. You'll end up losing not only the finger, but the whole body if you don't treat the whole system.

In my utopia, anyone entering counseling would be bringing his or her entire family, bosses, and others who make a strong impact on the client's life in, and all of them would be seeing someone separately, as well as in toto. It's not likely to happen, I'm afraid, but it would do so much good for the parents, friends, siblings and spouses to have the outlet of someone trained to help them help their loved one, as well as to deal with their own insecurities and feelings of inadequacy in the face of mental health issues.

But the family is where the client lives, and it's critical for the family to be in on the client's treatment path.

Best wishes, dear, and :hug:

[EFerrari]

4. I don't know why people in public mental health don't run away

screaming from their caseloads every day. Honestly.

But / and, there is this dynamic that has been set up where our families are reframed as something else. And it's not useful. Instead of enlisting us and bringing out the best in us, we're invalidated and undermined. It's a huge waste of potential resources.

For example. When Doug was going to the Edelman Clinic in L.A., his meds were wrong. They were just wrong. So, he was sedated most of the time which means, he had a horrible time making his appointments to try to adjust his meds. He missed one appointment and they made him go to a meeting for people who missed appointments.

Now, his meds are wrong, he's being punished and at that meeting, they denied him his meds! It was f$cking unbelieveable! Not to mention, withdrawing his meds suddenly like that put me at physical risk.

So, from the parking lot next door, I had to sit and coach him on how to get what he needed. It was just too much for him, so I eventually just went in and threw my 140 pounds around.

All this because his idiot doctor was unskillful and out of date with the tech she was supposed to be dispensing. Argh.

They also allegedly had a DBT program there -- special skills training -- for people with Borderline personality disorder. In all the time we were at that clinic, Doug never got one minute of DBT. :shrug:

I shouldn't personalize any of this, I know. But that's what our families deal with, every day, unless we're independently wealthy.

[mopinko]

5. money only makes it a little better

not that much. all these people could have gotten paid well to help us. they didn't.
and then there is the whole oversight issue. at least in a larger public health or university setting, there is some they have to report to. the first shrink that we saw was in the early stages of alzheimers, i am sure. that was fun.

[EFerrari]

9. I was able to buy Doug really good meds monitoring and that

helped -- gave him his brain back. Finding appropriate therapy is another whole problem.

[politicat]

13. A lot of us do, to either other careers in corporate HR or private sector

The two types that predominate in PMH are the new, just out of school and trying to pay the interest on their loans (me) until they can accumulate the capital and clout to buy into an established practice, or the burnouts, who have taken in so much of other people's pain that they have more body armor than a SWAT team and have forgotten to really care. There's a reason that shrinks have the second highest suicide rate of any profession. (First is farmers, another brilliantly screwed profession.) There are a few giving buddhas in PMH who still have the ability to love others and lead people through darkness, but there are so few, and I count myself highly fortunate to have been mentored by a couple of them (and to have been told to get out before my work destroyed me.)

Talk about it and rant about it. Let the world know that punishing patients and depriving families of effective treatment causes crime, causes abuse, causes all of the mental health problems that people complain about. If they don't like homelessness, then tell them that effective mental health treatment of the holistic family unit is more likely to help someone than ignoring the problem or underfunding it. Tell your experiences.

Write a book. Don't wait for the happy ending because it may not come until after the book exists and people find a reason to care. Memoirs and mental health are both hot in publishing right now; build a query and send it out (heck, send it to me; I know some agents) and let people know that this is a problem (and incidentally make a bit of cash out of it so that you can get Doug and yourself the assistance you need.)

The private sector is better, but not significantly; HMOs and insurance make it tough to get past the claims agents who are trained to say no.

[EFerrari]

15. I did write a book. It was my mail to the support group

I quarterback for the period of one year and that happened to be 2001. It couldn't go to Amazon because the printer messed up the binding but it did go all over the world. It needed better editing but I put an index in the back so one could flip through and find communication tools, crisis prediction tools, etc.

The group was the first one, I believe, on the net where the whole family was welcomed. We called it "Our family room" and our experiment was to see if we could stop the cycle of polarizing drama that our families seem to get involved in. It was a good exercise. :)

Maybe it's time to do another one.

[Bluerthanblue]

6. it was a real challenge

growing up with a Mom who was severely bi-polar, and often psychotic, in a time when that was just not something ANYONE talked about, or saw as remotely ok- Her involuntary hospitalization due to an incident of violence to us children, was silenced and 're-framed'- During this time I was placed in family foster care, which became yet another nightmare.....

Suffice it to say that I was terrified, furious, protective, afraid FOR, and longed to 'fix' my Mum, who I loved, regardless. She spent most of her adult life non-medicated, and the hospitalization included early electro-shock treatements in the time when it was barbaric..... (mid 60's) .... She was never able to truly 'mother' any of her children, and my oldest sister took on this role, along with my father.... life was very different from "The Waltons" which I saw as the epitomy of "family".

When my Mum died on fathers day, 6 yrs ago, I was helping care for her- My youngest son was tryin to encourage 'Gammie' to eat, his little hand rubbing her shoulder in a comforting way... and I SOOO wanted her to be ok- but she died. The hardest part of her death, was the death of the dream that ONE DAY, she would 'be-ok' that some miracle medicine she was willing to take would allow the beautiful woman I believe was held captive within her to finally LIVE- and I would know the Mum I longed for and share with her all the things Mums and Daughters share.... It never happened. And coming to grips with that is something I still struggle with. She was hospitalized several times in my life, none really helped, no one could 'force' her to take her meds, or 'work' at remaining stable.... but I do know what you are talking about I believe...

There was this 'group' meeting at one of the hospitalizations, where all families were there, and issues were discussed. My Mum was 'playing' the nurses, to get out, and I was at my wits end- I couldn't let her leave without SOME understanding that we were just going to 'repeat' the same cycle all over again, and spoke out, honestly, 'calling' my Mother on how she knew how to act to be 'discharged' but not having ANY reason to believe it would be any different this time, I wound up weeping in front of this room full of people, and even my father sat there with his jaw hanging open... the 'staff' pulled me aside, and said I couldn't 'expect' her to BE a 'mother'- and that I had spoken out of place, and out of turn..... I felt like shit.... but as we walked to the car, my father, my brother and one of my sisters said.... "I couldn't believe you of all people would have the guts to speak up like that!"-
It still makes me feel guilty and bad, I couldn't help my desire not to be afraid for and of my Mum, or listen to the 'positivebuthopless blather' pretending anything had or would change. I LOVED my Mum- more than I can say.... but I also was a girl who needed to be mothered, and be able to voice that want, without being 'the bad seed' yet again...

This probably makes no sense Beth, I'm having an especially difficult time these last several weeks... I should probably just delete... but I'm not going to stay quiet-

Hope this isn't distressing to you... or harmfull..... thanks for listening and sharing your struggles.. I always learn something from you- and am the better for it....

love,
blu

[knowbody0]

7. In a way profound to me,

I have your life. My mum died slowly of Alzheimer's, so I lost the dream of "knowing" her as well. She passed 8 years ago. The second oldest, first female of 7 children, I was "mum" from the age of six. She was Irish Catholic married to a Lutheran extremist (Hitler like). Abused and Insane, she cried every day, asking God (out loud for all of us to hear) why he kept "giving" her more children.
My father knew she was not well, as did her parents and her sister. She shaved my waist length hair when I was 12, because God told her I was becoming vain.
No one would listen to me. "we don't speak of those things"
As she slipped away into the abyss of her illness, I got a glimpse of the woman she could have been. She is who I've replaced the twisted crap of my childhood realities with.
I grew so tired of my bad seed label, I walked away from them all at her funeral. I wore white and did not attend the wake.
Now and again I can smell my mum, she blows out the flame I try to light my cig with. Now and again I weep for her dread filled life.
She told me she had no memories of our faces as children, only the tops of our heads. And that she could tell by the "look" in my eye as an infant that I waould be a Jezzebelle.

[Bluerthanblue]

8. oh....

my--- :hug: :cry: :hug:

I believe my Mum is complete now- and will never again be tormented, or tormentor-
She is healed and free- And someday we will embrace each other without any garbage of this world or the past seperating us.

People believe me crazy- deluded- a fool- certifiable for holding this 'truth' so firmly. But then people believed the world was flat, that someday humans would set foot on the moon, that there were powers that could not be seen, heard or felt, yet they existed, and today we have satelite images, cell phones, ultra-sound, MRI's, microwaves and all sorts things that humans could have sworn were the thoughts and imaginings of insane minds.-

I hope you have come to a place of peace- And that you have your reunion, or union with your Mum someday as well-

My heart aches with and for you-
We all deserve to be loved, cherished, and nurtured with love, patience and understanding.-
peace, and comfort-
blu

[EFerrari]

11. I was remembering yesterday that my bi polar gramma used to

tell me I had a bad character -- when I was four. I believed her even though I wasn't sure what a character was.

Oh boy.

On the other hand, my gramma gave me many of the things I love today -- her sense of humor, her committment to reading and to writing. She taught me to read years before I was old enough to go to school. She's been gone since 1986 and I still miss her every day.

[EFerrari]

10. I'm so glad that you were able to say that to your mother.

It makes a lot of sense to me. It's a way of honoring your own experience.

:hug:

On edit: We're not "cases"! We're people in families who cope with quite a bit, including that institutional impulse to take our families apart.

[EFerrari]

12. Time to repost the link to WFSAD's Families as Partners program.

Families as Partners in Care

Goal

To join with families, consumers, and mental health professionals in the promotion of best practice in mental health service delivery, based on evidence from research by experts.
Objectives

To influence psychiatric professionals, social workers, occupational therapists and other mental health workers in providing best-practice services.

To help professionals recognize the value of working with families towards a better quality of life for patients (consumers), better functioning, and ultimately, recovery.

To encourage families to recognize the benefits to the patient of their involvement with professionals caring for their relative.

http://www.world-schizophrenia.org/activities/fpc/

[Random_Australian]

14. If I wanted to think there was a rational reason behind it,

it would be that the abused often have trouble seeing that it is not their fault.

But that does not excuse the jump of conclusions they made.

I wish people could sit down and talk once in a while, without seeing everything the way they expect. Sheesh.

But this I can't understand: "his therapist has been telling him for years that I am not his wife but his roommate,"

...

...

..

.

And they didn't consult you about it?

They didn't even TELL you?

What, in the name of goodness do they think they were doing? I don't get how that could be, at any time, considered the least bit ethical.


I just cannot for the life of me think of any justification for that.

Well, I still have this enormous hug to finish my post with:


:grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug:
                                                  :loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya:
                              :loveya::pals::pals::pals::pals::hug::hug::hug::hug::pals::pals::pals::pals::loveya:
          :loveya::loveya::loveya::pals::pals::pals::hug::hug::hug:YOU ARE HERE:hug::hug::hug::pals::pals::pals::loveya::loveya::loveya:
                             :loveya::pals::pals::pals::pals::hug::hug::hug::hug::pals::pals::pals::pals::loveya:
                                                  :loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya::loveya:
:grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug::grouphug:


P.S. If anyone wants me to PM this hug to them so they can use it themselves, just ask!

[EFerrari]

16. What a beautiful hug!!!!!!!!!!!!

THANK YOU!

[stillcool]

17. hit or miss has been my experience...

desperation leaves me willing to try anything, which also leaves me vulnerable. I find the biggest problem with dealing with mental-health professionals is trust, and their inability to see me. Some of my past therapists would freak if I mentioned suicide, which guaranteed that they were not going to be helping me. If I can't trust someone with the outside veneer of my self, it turns into another song and dance show. When I used to go to AA meetings it always surprised me how much other people had my stuff. If I never had to leave a meeting room, it seemed like I wouldn't need to be medicated..but that turned into me taking on all their symptoms. Sometimes it seems so simple to me, that what goes in is what comes out.