Caretaker Dominance in Mental Health Discussions

A few days ago, at the Orange County Mental Health Associations “Meeting of the Minds”, I attended a workshop on caretaker-patient-provider partnerships sponsored by our local NAMI. The material was very interesting and I sympathized with the panelists. Caretakers, they pointed out, can be a helpful part of the team that brings the patient to a place of recovery. They deserve to know what they can do to help the patient and this doesn’t mean that they have to know all the patient’s “dirty little secrets” as they characterized them.

But a few things struck me: First, at least a third of the panelists promulgated a “no fault” model of mental illness. This belief has been spread without challenge or acknowledgement of the studies that link the onset of mental illness to emotional abuse and bullying by NAMI. Though one speaker did allude to this, most of them adopted the model as applying in all circumstances, including their own. I can’t say for sure if they were telling the truth — I give them the benefit of the doubt — but I also know of plenty of abusive parents who use the shibboleth to hide their own history of family violence.
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How to Talk Listen to a Mentally Ill Person

The mentally ill person is not a child. I have had the experience of would-be helpers who treated me so. When I attempted to describe what I needed, they argued and belittled me for needing help. I felt very alone and one result was that I stayed away from the church where this person was not only a member, but an officer of sorts. It was hard for me to treat him with charity. I turned my back when he greeted me afterwards because I could not stand his hypocrisy.

We are sensitive about being patronized because of our condition for the same reasons that African Americans are sensitive about race. No one wants to be excluded on the basis of a condition that he cannot help. No one wants his condition denied. No one wants to feel cut away from the body politic. What we want is for people to take us seriously whether or not we are in episode.

Many of the problems that people have with the mentally ill have to do with communication. Those who wish to help (and those who do not want to help) believe that the objective of interaction is to get the mentally ill person to follow a treatment plan or pull herself up by her bootstraps or realize that it is “all in your mind”. (“Have you tried not being depressed?”).

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Book Review:

Stop Pretending, what happened when my big sister went crazy by Sonya Sones  ★★★★★★

 

This is a great book for siblings, who sometimes get lost in the shuffle. I know when my brother was very symptomatic all the attention was on him and I felt neglected.

This is a book of free verse. If you don’t like poetry, give it a chance. It is a quick read. The writing draws you in and you want to follow the story.

Today

I don’t know if reading through my posts I sound like I have a lot of present mood disorder issues. I wish I didn’t have it or have to deal with it, but I am much, much, much better than when I was first diagnosed.

At that time, I was psychotic, but even before then, I had times when I would cry for no reason or not leave the house. I haven’t been hospitalized since 2005 or had psychotic symptoms since 2006. I have coping skills. I don’t micro-manage symptoms. If i have a good day I enjoy and take advantage without worrying if it is going to turn into mania.

My biggest issue now is anxiety and even that is better. It is hard for me to notice, but people around me tell me I seem more at ease. I do presentations for NAMI which is hard for me to believe with my social anxiety. I am not a great speaker, but they go over well.

I am married. I was diagnosed after 7 years of marriage, so my husband didn’t sign up to marry someone with a mental illness but he has been supportive. I have 2 teenagers, who are doing well, for teenagers. I do some volunteer work, I would say an issue i have now is time management.

lorib

 

Tough Love Isn’t For Mood Disorders

Every now and then, someone comes into one of the support groups I attend or encounters me online and talks about how their family has decided to apply tough love. They are not alcoholics nor do they use illicit drugs. The parents or spouse are reacting to symptoms — usually the lack of motivation to exercise, take care of themselves, etc. The helplessness of the patient does not matter to them. They may not understand that it takes time to recover from a mood disorder or they may deny its existence. If you’re now taking medication, you should be better now, right? Or maybe they think it is time that you “got out into the real world”, suffered what “everyone” else suffers.

So they apply a philosophy that they heard about — maybe from friends, maybe from a therapist, maybe from Bill Milliken’s 1968 book or one of the many self-help guides that have replicated the idea which is called Tough Love. At its best, it is merely setting good boundaries — “sorry, but if you are going to use the money I give you for food to buy street drugs, I am not going to subsidize you”. But in American culture, it too often means employing cruelty to be “kind” whenever the patient doesn’t act in a way that the caregiver doesn’t like. And many caregivers make the mistake of thinking that the symptoms of the disease are something that the patient can control. You are depressed, they might reason, because you don’t exercise You are sleeping all day because you are a lazy good for nothing.

When they apply tough love in this situation, they are abdicating their responsibilities as a parent or a spouse. First of these is to understand the illness. Psychiatrists, for example, see the lack of motivation to exercise less as a cause than as a symptom. Studies show that exercise doesn’t do a lot to pull people out of depressions. A systematic review of the literature on exercise’s effect on depression found:

Exercise is moderately more effective than no therapy for reducing symptoms of depression.
Exercise is no more effective than antidepressants for reducing symptoms of depression, although this conclusion is based on a small number of studies.
Exercise is no more effective than psychological therapies for reducing symptoms of depression, although this conclusion is based on small number of studies.
The reviewers also note that when only high-quality studies were included, the difference between exercise and no therapy is less conclusive.
Attendance rates for exercise treatments ranged from 50% to 100%.
The evidence about whether exercise for depression improves quality of life is inconclusive.

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Post Partum Psychosis in news TW graphic

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A mom who beheaded baby had been diagnosed in January with PPP and was not supposed to be alone with the baby. This is what Andrea Yates had and she was supposed to be supervised.

I know we with mental illnesses are rarely dangerous but when you are told we might harm someone, please listen. These were tragedies that didn’t need to happen.

I think my family overreacted. They took me away from my children for a couple of weeks after a psychotic break. I wasn’t dangerous. But, I do understand they were trying to protect them.

Something I wrote when I got out of the hospital

I was angry that I had been hospitalized. I didn’t understand why they thought taking me away from my family was a good idea and why they couldn’t have called someone when they couldn’t handle me.

My family of origin thought that the time I spent on the computer contributed to my illness and didn’t want me to go on. I typed up this outline of how I would like them to treat me, but they dismissed it and were just upset I had been on the computer.

I am not sure if this has anything worthwhile. It was right after I was diagnosed and I was still very ill. I made some sweeping generalizations and I don’t think people need a manual to talk to someone with a diagnosis,

my first first thought was to edit, but I decided to leave it as is. If this bothers anyone I can edit or remove it. Mainly I am just surprised I was well enough to write. I was pretty symptomatic.

 

HOW I WOULD LIKE TO BE TREATED
Introduction:
I. I can control my behavior with the guidance of professionals
A. You can not cause reactions I have, like the paranoia that led to my hospitalization, but if we had asked for guidance from a professional he would have told us that relocating someone in that condition often leads to paranoia.
B. Trying to modify my behavior without asking for my input makes me feel paranoid that I am being controlled. I am willing to discuss an issue that troubles you with my psychiatrist, therapist or support group.
C. All I expect from my family is to listen and be understanding. I appreciate how helpful everyone has been.

II. I have an illness
A. I know under other circumstances it would be wonderful that I am spending more time on myself, but pointing that out while ignoring that the underlying reason is because I am unable to do many things because of my illness, is hurtful to me.
B. I can not just cheer up or snap out of it. I can take my medications and follow my Dr’s orders.
C. Once my illness is under control, it may be helpful to remind me if I seem a little more irritable or anxious, but right now that is expected with a mood disorder while they try to find the right medications and they take effect.

III. Realistic Expectations
A. I don’t know what are realistic expectations for me yet. My Drs seem to feel I will be able to return to working, driving and taking care of my daughter and son.
B. Please don’t compare me to others. There are some things that are too stressful for me.
C. I have high standards for myself, and I like my life the way it is, when Ii’m healthy

IV. The psychotic episode was a traumatic experience for me
A. I don’t want to discuss the thoughts, because I am afraid it may trigger another episode
B. That was the scariest experience i’ve ever had
C. I will work through the anxiety and paranoia with my therapist, but I do still have to recover from being psychotic and hospitalized.

V. I hope we can all learn something from this experience
A. I think there is a less traumatic way to get help. Many people wouldn’t willingly go to a locked psychiatric facility, but they would go to the Behavioral Health Unit of a hospital
B. I do worry about our family members on SSRI drugs without mood stabilizers, zoloft triggered mania in me.
C. The difference between an obsession and a passion is if it is interfering with the rest of your life. I am trying to use this time to remember what is really important.

Conclusion:
I will treat everyone as respectfully as my illness will allow, and I expect to be treated with respect in return. I understand that you may be afraid, I am too, but my therapist thinks there is a good chance  never have another psychotic episode.

HOW I WOULD COMMUNICATE WITH A PSYCHOTIC/ PARANOID PERSON
Introduction:
I. When I was in this state I regressed to a child-like state
A. Explain any changes clearly and in advance
B. Emphasize any key words and make sure the person is listening
C. If you think they are hearing voices, written communication is probably better than verbal. I tune-out some things but I pay attention if key words are emphasized either by talking louder or writing and circling key words
.
II. Include the person in any plans
A. People with schizoaffective disorder are resistant to change
B. Plans made without their input may increase paranoia
C. Offer to go to psychiatrist appointment with them, if they seem to tune out sometimes, and discuss having them sign release of medical information.

IDENTITY VS ILLNESS

Introduction: It can be difficult to distinguish between the individual’s true identity and those behaviors that are due to the illness

I. I have some traits that I consider part of my identity that are not highly valued in our society. I want to treat my illness but not give up who I am. Some of these traits for me are:
A. passive
B. stronger written than verbal communication skills
C. sensitive

II. There are traits of the illness that seriously impair my life and I need medication, coping skills, and support to deal with these. Some of these are:
A. Paranoia/Anxiety
B. Impulsiveness
C. Irrational Thinking
D. Isolating

III. There are some things I may enjoy that others may not understand, but it IS normal behavior
A. long baths
B. Solitary walks
C. Reading
D. Computer Interaction

Some things I wouldn’t want to hear
A.i want the old you back. I am still here, hiding behind this illness
B. You need to do this I don’t take orders and I prefer to take advice from professionals (others may vary on who they trust)
C. You are being too emotional. i do understand the sentiment, but I can’tc ontrol how I feel

If it feels good, don’t always do it

This is one that took me a looooong time to learn.  When I am symptomatic my biggest issue is usually psychosis, and sometimes it feels good.

People are following and filming me because I am special. I have secret skills. People communicate to me through code because it would be dangerous in person. Sometimes I think people are angry at me, but other times i think they like me.

For awhile after I was stable I would miss the “good” times when it felt good and I felt special. I feel like I didn’t hurt anyone but myself.

One day I absent-mindedly asked my husband what was the hardest part of our marriage. I thought he would say when the children were infants. I don’t even know where the question came from. His answer was 2003. That was the year I had my first psychotic episode.  It hadn’t really hit me until then how my being ill effects other people.

I have been good about taking my medication, but it was always for myself. I don’t want to get stuck in a bad state of mind. Now, I do my best to keep healthy for my whole family.

Cults, Witches and Mental Illness

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When I was 15, one of my brothers, who was 21 came home from college because he wasn’t well. He would sit and stare and do nothing for awhile. Later he would start talking but he said strange things and acted bizarre. He could be generous but was also unpredictable. I feel bad now because I was afraid of him for no real reason. He scared me because he seemed unusual.

My parents tried to figure out what had happened to him. He seemed fine when he had left home. They suggested maybe someone slipped him some drugs but settled on that he had been brainwashed by a cult at college. That his new girlfriend had brought him into the cult.

Of course, there was no cult, but the story grew. I was told not to speak to certain neighbors as they were part of this cult. My father didn’t believe in mental illness or psychiatry. He thought the hospitals were like the one in “One Flew Over the Cuckoo’s Nest” and discouraged my brother from going.

They also accused people of being witches. It was like mental illness was contagious. It was scary and confusing living in that home.

It can be difficult to be the sibling of anyone with a chronic illness. All the time and attention was on my brother and I felt ignored. My older siblings moved out and i just had my younger brother to confide in. I felt everything was strange at our house and didn’t have any friends over. My brother felt like every family has their own issues and we weren’t that unusual. I think he was able to roll with everything easier than I did.

Sonya Sones wrote a book of free verse “Stop Pretending, the day my big sister went crazy” about how she felt as a sibling, that I read as an adult and could relate to. I didn’t want to be home. I stayed out and used alcohol, other drugs and later sex to escape.

My brother didn’t get treatment except when he would get picked up for 3 day observational holds. This started in 1979 and it may have been easier to be taken in. He would be yelling or saying he was some famous person and the police would take him to a hospital. They said he had paranoid schizophrenia and put him on anti psychotics. Not Thorazine, but similar. All they did was slow him down. So, then you had a slow moving psychotic man. He knew he was not acting normal, so he would imitate people around him, which was even stranger.

The last time he was picked up, it was in a different county. They tried lithium this time. It was 6 years from when he had originally come home. Everyone told me it was like magic. He was back to his old self. I don’t know what his diagnosis was. Maybe bipolar, or schizoaffective like me. I was looking forward to seeing him. But, when I visited him, he wasn’t well. He was edgy and nervous. My mom said they had to adjust his medication, but she was waiting until Monday ( I think I came there on a Friday night). My brother took off and we didn’t know where. He had been talking about hiking at Yosemite. On Monday I got a call that he had fallen at a waterfall at Yosemite and died. No one knows if it was a suicide or accident. People do fall there.

Recently I was talking to my oldest brother and he was saying that he wished there was the information then that there is today. I thought he meant support, but he then said that we would know it was a mental illness and not a cult. I was perplexed that he had believed that. The 1980s weren’t exactly the dark ages. I have had to let go of a lot of anger towards my parents for what I now feel was dependent adult abuse by not getting him treatment, and all the time he thought they were right.