This post is the week in review with regard to my beautiful daughter Beth, who has Schizo-affective disorder. She also ended up at the Emergency Room last week, but unlike Frank (see my last post) the immediate "treatment" she received was very ineffective and close to non-existant.
Beth will be 30 in November. We've been dealing with her illness since just before she turned 21, not all that successfully. Part of the reason for this blog is to let people know how the "systems" currently in place for those with mental illness operate.
I've decided to "come out" about mental illness in this blog after watching "Minds on the Edge". Please see my first blog entry for info on that. For these nine years I've rarely publicly talked about Beth's illness - mostly because part of how I've tried to support her through it is not to do anything to increase her fear. Schizophrenia is an illness of fear and distrust of others - the "fight or flight" zappers in your brain are firing overtime, sometimes non-stop, at outrageous, uncontrollable levels and the panic is tremendous. These 9 years have been about trying to reduce that and certainly not increase it in any way.
Meds help (when you get them right) but potential "triggers" are always there in every day, routine things. The triggers are different for everyone. Sometimes it takes a while to learn them, especially with a normally quiet person like Beth, who doesn't often vocalize what's going on in her head.
Beth moved here with us a few months ago, after a relationship didn't work out. She's been in her own apartment, lived with boyfriends, and lived with us off and on a few times over the years. All the moves meant a change each time in health care places and people, making managing her illness and getting her meds right all the more difficult. Each place and person had a different idea of what meds and support systems to try and the ways and hows of what Beth "should" be doing to help herself.
So, this move has meant another change of Doctor and meds. Each time the meds change the transition can (and has) moved her backwards in living life with any semblance of happiness.
We're all stressed at the moment. Beth is moving into a new apartment along with the med change, Frank was hospitalized this week (see my last post) and I'm pretty much always stressed with anxiety. Stress greatly increases symptoms!
One of Beth's symptoms is "auditory hallucinations". She hears people saying things about her. This happens wherever she goes, making it difficult for her to leave the house. A person who passes her on the street, the couple sitting four tables away in a restaurant, other shoppers in a store all have nasty comments to make about her. Perhaps its her weight, what she's wearing, or could even be as awful as calling her a whore or telling her not to bother to seek treatment because she's not worth it anyway.
Reasoning this away does not work. It doesn't matter that people are sitting too far away to have possibly heard them. It doesn't matter that if a comment or conversation was real, it wasn't necessarily directed at her. It doesn't matter that I or others didn't hear it.
Beth heard it. And having heard it, it is real to her. If you know you heard something, would you believe people trying to tell you you didn't? Would you continue to trust them when they tell you things aren't happening that you did experience?
Now please understand that this is a physical condition. It is not "all in their mind". If it weren't physical, medications wouldn't help it. Meds do help it, at the very least to lessen the number of instances and their degree. But stress and med changes (waiting for a new med to "get to its right level") can make it go the other way again, with almost constant occurences and awful consequences.
For Beth, this condition has never totally gone away. At times it has been managible and she has learned ways to cope with it. But not this week.
This week the neighbors have decided she is a slut and a whore. This week the neighbors are constantly talking directly at her, swearing at her, saying these things to her. They have even gone so far as to have come in to our house at some point and placed speakers to insure that she will hear the horrible things they have to say about her. They tell her they hate her and that she might as well die. They come out on their porch to say these things, they turn their lights on and off throughout their house to confirm that they are messing with her mind (because they can and they enjoy it).
So, last Monday this reached a peak. The voices in her head were constant, continual, swirling and screaming, non-stop. They were purposefully abusing her, and she was going to fight back. And fight she did; trashing her room, throwing things around, breaking the window blinds as she screamed back out the window at them to "go to hell, she hated them". She wouldn't stop for me. She kicked and punched the walls, the floor, anything within reach.
I called Emergency Services. With a call-back ten minutes later (you have to wait for whomever's "on call" to get back to you), the lady was able to calm Beth and talk her down. After that she laid on her bed, eyes wide open, very clearly on high alert, but at least not physically acting out.
During the calm and cohesive moments, Beth understands and agrees that her meds aren't working very effectively right now. She works hard to distract herself with the few things she enjoys (drawing), she reads the books recommended to help her cope, and writes in her journal to work it out. But she is so frustrated and disappointed with the mental health system and their seeming inability to understand the degree of pain she is in. The "system" is: Pain or not, she is told she must wait, "see how these meds work", maybe change them yet again if they don't , and all the while learn to cope and work through these things by herself.
Isolation is a big one. No one wants to be friends with a "crazy person".
We talked. She wants to be hospitalized because of her degree of anger and frustration. Her hostility is scaring me and her. She knows it. She fears she may do something to get back at the neighbors and "get herself arrested". "Can't they just hospitalize her for a few days to get her med levels right?"
A few hours later and the voices are back again, threatening a re-occurence. We call Emergency Services again. After hearing that she may do something that will get her arrested, they agree to meet her at the ER and see what can be done.
When we arrive, there are two police officers in the waiting room. In the exam room, the Doctor asks her "what she wants to be done". We wait an hour for the Mental Health "on-call" person to arrive and "evaluate" her.
Now I ask you: If you go to the ER with a bloody nose or broken arm, do they send the Police? Does the Doctor ask you what needs to be done? Do they act like they don't know what to do? Do they wait for a person with schooling of a 9 month Certificate (or less) to decide what that might be?
The Mental Health person arrived, talked with Beth, and "formulated a plan". Beth asked to be hospitalized for a couple days to work with the meds. That couldn't happen at this hospital. There were only two facilities in the entire State for hospitalization. One was full, (only had two beds), and both were at least an hour and a half away. Beth decided that, given the stress I was under with Frank, etc, she wouldn't ask me to make that drive back and forth.
So they sent her home with a sleeping pill, told her to call a counselor, and said they would have her Doctor (actually a Nurse Practioner) call her tomorrow.
When you have a mental health crisis, who do you turn to? Don't expect much from the Medical Community. They still haven't learned that mental health issues are physical.
To experience what it is like to "hear voices" visit Amber Osterhout's website: Gaining Insight. Amber has created a wonderful series of paintings that depict the stages of schizophrenia. Listen to the audio that accompanies the painting entitled psychosis. Then please do check out the rest of the paintings, and Amber's entire site.