What Makes for a Good Caregiver?

When one takes aim at a system of privilege, some jump to the conclusion that you hate the people who stand to gain from that system and have no compassion for their struggles. Caregivers can make it hard on themselves and on the patient. They give twenty four hours a day seven days a week looking after people in severe episode. They neglect their own health. They grow weary and cross from all their over-involvement.

Our DBSA chapter feels that caregivers need their own place where they can talk about their issues and we have provided one. We do not tell them what they can and can’t talk about. We do not ask them to support certain laws or advocate for changes that they do not want. We don’t have a patient monitor the group to be sure that they act according to some unbearable standard of political correctness — people need to vent. We shelter them from people who may have an ax to grind (I have heard about other groups where caregivers were roasted over hot coals by angry patients) and who don’t appreciate how hard it is. We encourage them to talk to peers who know what it is like. We always ask them how they are feeling when they come to our patient-family support groups, reminding them that they, too, are important. We feel that their mental and physical health is as important as the patient’s and we tell them so.

I’ve been hit with some innuendo from some online caregivers who imply that I don’t care about the mentally ill. What I believe they are really saying is that I don’t care about caregivers. I do. It aches when I see a caregiver overburdened and I do my best to relieve that. Many have been the times when I have had a couple in a group and told the patient that she or he needs to realize that her or his manic state of mind is creating an extremely stressful environment for her or his spouse. How does this make me a foe of caregivers? I think much of the misapprehension stems from my opposition to Murphy’s Law, which I have explained at length elsewhere. It scares caregivers to hear me talk about sane privilege– just like it scares white people when we are talking about black people — where we who live with mental illness are left out of decisions about our treatment.

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On Emilie Autumn

 

So i’ve discovered this new artist, a singer.  Her name is Emilie Autumn, and she has bipolar disorder (according to common knowledge and Gothic Charm School).  Some of her songs are obviously about mental illness, mentally ill people, and how mentally ill people are treated by society (both contemporary and past). They are also about who is perceived to be sane, and who is perceived to be not. It is for this reason that Emilie is interesting to me. Now, of all the songs by her that I know, two deal with mental illness. These songs are “Take The Pill” and “Girls! Girls! Girls!”. These are the songs that I will be discussing further in this post.  Both songs are quoted from the lyrics videos that I found on Youtube.  Although “Gothic Lolita” (which is about childhood sexual abuse) and “Fight Like A Girl” (something of a feminist anthem) are both worth your time, I will not be discussing them here. Neither of them deal with mental illness.

“Girls! Girls! Girls!” is sung (in literary terms) by an unreliable narrator. He claims to treat the mentally ill women under his care with humanity. However, he treats them like freaks. He refers to the women under his care as “entertainment”.  This song paints a picture of a man making money off of spectators looking to gawk at mentally ill people. He refers to them in the chorus as “hot, nuts, and suicidal”. This is the beginning of the narrator sexualizing the women. He says although “they look a lot like you and me, don’t let them fool you!”  This is an example of dehumanization. Apparently, in the period this song is set in, insanity was considered purely a feminine thing. The narrator speculates that the instability of female reproductive organs, and their influence by the moon, is what causes insanity.
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Review: Love and Mercy

I’m always a little on edge when I sit down to watch a movie about someone living with mental illness, particularly if it is a true story. Did the actors, writers, and director get what it is like to live with mental illness or did they make a caricature of it? Did they romanticize it? Did they put a hockey mask over the face of the sufferer and an ax in his hand? Is it another ECT scene out of One Flew Over the Cuckoo’s Nest? Or do we get the truth?

Bill Pohlad’s Love and Mercy had me worried about romanticization before I saw it. I dreaded that he would render the illness of Beach Boy Brian Wilson as cute and fuzzy, something that would make us wonder whether we were too cruel when it came to the mentally ill. It did do that, but there is a right way to go about it and a wrong way. The wrong way declares that there is no such thing as mental illness; it diminishes the impact that the illness has on those closest to the sufferer and suggests that the illness that afflicted the likes of Brian Wilson was little more than a personality quirk. Pohlad and his cast did it the right way: it acknowledges the severity of Wilson’s illness, but also turns a harsh eye towards his guardian/therapist, one Eugene Landy and his sadistic oversight of the musical great. Paul Giamatti’s performance was so to the T that when Wilson watched the movie, he experienced a severe dissociative state where he believed for several minutes that Giamatti was Landers come back to haunt him.

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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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Getting ahead of myself

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I haven’t been able to work for over 10 years. Mostly because stress makes my symptoms worse. I have been thinking of attempting to work. I have sent out some resume’s and gone on interviews.

Those didn’t go so well, but I am still looking. I found an agency that places people with disabilities in jobs. The employer gets a tax break. I haven’t been very impressed with the company so far, but I haven’t seen any of the job leads.

But, I have been rolling the idea around in my head. Who will pick up the kids and do the things I do when I am around? Am I making a mistake? What if I can’t handle it? What can/can’t I do?
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What is fun?

Here I find myself, papers scattered around- my assignments and my notes. My thoughts feel like they are shuttering, I can’t understand this chapter, I am lost. And I feel scared.

It makes me stop. And I have to ask myself, what’s happened? It has been weeks… endless weeks of nonstop studying. I grew tired of doing research for my essay but the only other thing I could think of doing was another homework assignment (due in over a week).

And now I’m stuck. My brain doesn’t know what to do. I am too burnt out to write the essay but I am stuck on this physics chapter. The Ritalin I’ve been abusing is nagging at me to keep going. But I realize that some part of me is very weary.

The therapist applauds me for my determination, motivation, and hard work. Even when I suggested I might be hypomanic.
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Tiered healthcare system U.S.

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You get what you (can) pay for

I don’t know enough about the intricacies of our healthcare system to give a explanation on how they different insurances work and why some people fall between the cracks.  I just have been in or visited facilities that didn’t require private insurance and they are night and day from ones that my employer provided insurance covers.

My first hospital stay was after I had refused to get back in the car during a road trip. I ran to a mini-mart and asked the clerk to keep my parents from me. He let me stay there and called the police. I thought they would call my husband or sister to come get me. I guess it would take too long. The officer handled it well. He kept my parents seperate from me and listened to both of us. They he had me go into an ambulance to got to a hospital.

The hospital they took me to was a County hospital. I wouldn’t recommend it. I was confused. I wouldn’t speak and then blurt things out. They pushed a cart in the room with juices and yogurt. I wasn’t sure what to do, but I soon learned to take what I needed. There was a room full of cots. I would go and lay down on a cot. At night one of the other patients helped me find the linens and make a bed. I had been lying in the cold.
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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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All The Broken Hearts

Today, I am broken-hearted. It’s not because i’ve broken up with a romantic partner. Nobody died (thank God). Marcus is very much alive. He hasn’t left me. He hasn’t rejected me in any way. Quite the opposite.  But circumstances are keeping us from meeting.

His family is so protective of him that he would get in real trouble for revealing the slightest piece of information about himself.  If they knew I knew what city Marcus lives in, there would be hell to pay.  This, in my mind, rules out ever going to visit him in his town.  He also couldn’t meet me anywhere else in the country, because his family wouldn’t let him.  Don’t worry, i’m not sobbing. But I do have a funny feeling in my chest, so that’s why I say i’m broken-hearted right now.

I haven’t lost him. But I definitely need to revise my expectations of this relationship. I was hoping that I could meet him face to face someday, and get to know him and his family better. I was hoping that if they liked me, and I liked them (and him), I could continue to visit him, and maybe even become his platonic life partner (if he agreed, of course).

The silver lining is that this shows his family cares about him. It’s better to have extremely protective parents than negligent ones, especially for an autistic person like him.  He is socially unskilled enough that he could get into a lot of trouble without guidance, and he has. So it makes sense that his family guards him fiercely.

I just can’t see a way forward from here. I have come to care for him deeply in the month or two that i’ve known him. I don’t know if our relationship has room to grow from here. I guess what I have to do is keep doing what I have been, and hope some answer presents itself. But what? What will happen to our relationship?

Thank you for listening.

Ran out of meds… and very scared.

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So we all know quitting your meds cold turkey is a very bad idea. But sometimes… things happen.

I wasn’t really paying much attention to how many meds I had. I knew I saw my psychiatrist and would get a prescription and then the mail order pharmacy would send it to me (they’re much cheaper- 3 months for the cost of 1- and they’re authentic). However, I ran out early. I called my psychiatrist to have her fax a 1 month prescription to my pharmacy but when I got there they said my insurance had already covered this month through the mail order service. In other words- I’d have to pay out of pocket.

1 pill costs $12. And I take 2 a day.

I called my mom asking how long it’d be before we’d get the pills in the mail. And she said it won’t be for at least a few more days. The service had emailed us saying that the medications were “delayed.” But when I demanded to know what that meant, she simply sent me the email. All the email said was that it was delayed. That was it. No hint as to how delayed, nothing.

I left the pharmacy holding back tears. I guess I was going off my meds for a few days, with no tapering.

When I got home I broke down sobbing. My mom called me back about it and then asked if I was crying, when I said yes because “you don’t know what this is going to be like” she yelled at me saying I shouldn’t put this stuff off for so long.

She later apologized.

And yes I am terrified. When I forgot my pills one night I almost killed myself. Although when I found out I felt that way only because I forgot my pills, I cried with relief.

I take 2 anti-psychotics. Luckily this is less important one. My main one keeps a lot of symptoms under control- mania, anxiety, etc. This one just keeps me from being depressed. It actually made me feel like a normal type of stable. Generally I was in a good mood, instead of my normal slightly-down mood.

I am scared of having to endure the next few days until I get the medicine. We are going to call the service tomorrow and ask them to expedite it, it costs money but it is literally less than paying for one days worth of the medication.

I will survive. But it will be hell.

And I am scared.

-Quinn