Thursday, October 29, 2009

Who Cares?

When my children were infants I changed their diapers, cradled them, and fed them at my breast. When Patrick broke his wrist, Beth placed her hand fully on a burning wood stove, and Neil broke a front tooth straight off, I jumped to the emergency and saw them through to recovery.

Now that my daughter is an adult and I am sick with depression, anxiety and despondency; how do I help my beautiful girl who is crying out for help, who lives with emotional pain, fear, and turmoil every day. Tonight my depression is taking its toil on me. I'm tired. I'm sick with worry. I hurt that the recent efforts I have tried to make have led nowhere.

I don't have the strength or courage to be an active public advocate in the community all by myself. Beth doesn't have the ability because of her condition. At the moment she is reclusive; shying away from all social and public interaction because her symptoms are dominating every waking moment. Her sporadic sleep patterns add to the problem.

Yesterday we tried to go shopping. "They" were everywhere... strangers in the store making sharp comments aimed at her, the music on the store system specific to her past unhappy experiences, bumper stickers and license plates all "planted" by "them" to hurt her and let her know they were watching, judging, and enjoying their power over her. The paranoid delusion of a network of people conspiring against her, enjoying the living hell they making of her life. Will medication ever make that one go away? Is my beautiful child, now a lovely woman that no one any longer sees, doomed to live this nightmare the rest of her life, alone?

This morning she came over crying, asking me to take her to her scheduled mental health appointment, as she wasn't strong enough to make the drive herself, or go into the drug store to get the next new medication that the Nurse Practitioner hopes might help. It takes time to see if the new med will work, so her next appointment is scheduled for a month away.

As I started to write this post I was crying... working out the words makes that issue come and go... I was crying because no one has read this blog. No one has watched the "Minds on the Edge" video or gone to their website, though I post and post to my Facebook page links and info and ask and ask.

Who cares about the mentally ill? Apparently no one. There are no pink ribbons, no concern over the fact that my daughter is in extreme need of compassion, caring, and support; no uproar over the fact that services to assist her and others like her as so limited; no charitable giving of heart, mind or dollars anywhere.

How do you engage them?

Helpless... I'm helpless and ineffectual as a Mother now, the one that she should be able to depend on. I'm all she has and I'm not up to the task, or getting it done. From my sense of worthlessness I wait and hope for the day that my life is over. From my sense of responsibility and love for my child I pray for some help, some strength and courage for us both, for the determination to go on, and hope that maybe somehow, some way, some day it might get better.

And the cycle of mental illness goes on and on.....

Thursday, October 15, 2009

Motivation, Apathy, and Fear

A bunch of things having been going through my mind the last couple days. So, I guess this post will be a mishmash of them. My emotional state has been one of sadness and worry, and trying to push myself through the tiredness and apathy.

First, I want to say that I appreciate the Doctors, Nurses, Case Managers and all caregivers in the Medical and Mental Health Networks. My last post was about the ineffectiveness of the "system" but that should not be misconstrued as against the wonderful people who work within it. In many cases these organizations and people are non-profits or State run. Funding from the Federal level is miniscule and "entitlement" programs are the first to be cut. When the burden falls to the State, as with Medicaid and the States are in trouble (as they are now)..... It all leads to the programs being notoriously underfunded and understaffed; the people working with little at very low pay.

When you consider where to put your charitable contributions, please consider non-profit mental health providers and support systems.

Something else that is bothering me is having given so much detail (or even talking at all) about Beth's issues in this blog. She is a grown woman and putting the concerns of her life out there leaves me conflicted. How do you erase stigma and the problems of the mental health system without talking about them? It is probably more appropriate for me to speak of my issues here, but our lives are interwoven, of course, and my day to day emotional issues are caught up in hers.

It's taken me (what?) 3 or 4 days to get back here to post again. As usual with me, the initial excitement of the "Minds on the Edge" program gave way fear, insecurity, and doubt.... all the reasons why I can't, shouldn't, or don't want to be involved with anything.

Since I made the decision to go on Social Security Disability because of my mental health issues a few years ago, I have just given up on life. The motivation to do anything lasts little more than 5 minutes. The label of "Disabled" because of mental illness threw me into an even deeper depression of the worthlessness of me and my life. My mind was constantly filled with the failures of my life. Since that time, my daily chore has been to find ways to silence those voices and find things that could make me believe in myself and life again.

I suppose I haven't done very well with that either. To stop the negative and critical voices I find past-times that use my mind in other ways; things that others might consider wasted time, I suppose. I work jigsaw puzzles, play games on the computer, and do what I can around the house.

I've tried to look at my own health issues: years of smoking, lack of exercise, and unhealthy eating habits that have compounded to being overweight, unable to breathe, and the inability to do much of anything physically - walking through the grocery store leaves me short of breath and exhausted.

My embarrassment over it all has made me a recluse. On a day to day, person to person, basis I have only my husband and sometimes Beth and the boys. A few times I've joined online communities but oftentimes those relationships feel anything but "real" or too far removed from my day to day reality.

At the moment, I'm back on Facebook after my son asked me to join so we could share pics, etc. And I'm blogging here, hoping to (what?) offer some insight, I guess, to those who don't know about mental illness; hoping to increase the world's empathy rather than its apathy.

I don't know how much time I have left and I don't know how effectively I will use that time. Like all mothers, a major concern of my life is for the quality of Beth's life, now and when I'm gone. And so, I'm doing what I can, here, and praying it's the right thing to do.

Thursday, October 8, 2009

"Emergency" Treatment for Mental Illness?

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.

The Week in Review - What Stresses You?

So, last Friday I took Frank (hubby) to the Emergency Room. He'd been having trouble breathing when he laid down for a few days. He was thinking it was chest congestion from this seasonal time of year, but after 4 nights of his sitting up in a chair rather than sleep in bed, I decided to look further.

It seemed more than just congestion to me. He was really struggling to get air and very fitful. Then I remembered that he had also been having issues with swelling (fluid) in his legs, ankles, feet. A search on WebMD revealed that these symptoms (along with a dry cough - which he also had) were most probably a serious heart related problem.

So off to the ER we went. The ER because we are new to this area, there are no clinics, and you can't get in to a Doc as a new patient for 4 months (which I found out when I tried to schedule an appointment for me).

Upon hearing his symptoms, the ER whisked him right in, and sure enough.... MAJOR heart issue. Not a heart attack, but a heart arrhythmia. Seems the top and bottom parts of your heart should be beating in conjunction at around 60 - 80 beats per minute. His top part was "fluttering" (instead of beating) at 165!

They also found his blood pressure was out of control, as well as his blood sugar at over 500 (should be around 100) - and probably had been for quite some time.

So, in the hospital he stayed while they worked to get all these things under control, and he came home on Tuesday. Now we begin the regimen of insulin shots, 8 daily meds, and dieting to reduce fats, sodium and cholesterol while watching the carbs to control diabetes.

All this is not totally new to me, having gone through some of it with my mother and father. I've been trying to move our eating habits to a healthier direction for a while, but neither of us were quite ready for what seemed like such a stringent regimentation. Now, like so many others, we have no choice.

You move through quite a range of emotions at a time like this. Sometimes it feels like not a big learn to manage a new way. Other times it's very scary - like when the Doctors and Nurses are telling you about the severity of this condition, how much damage has been done to your heart, how blood could be pooling around it, leading to a possible stroke. There's the relief that you "caught it in time" and the struggle not to feel guilty or stupid when they ask why you "waited so long".

There's my inability to sleep well or think straight for the 4 days he was gone. There's my feeling I need to step up and "be there" for him when instead my anxiety is skyrocketing and I'm just in a state of shock - in a fog. There's the little irritations that lead to snapping at each other when you are really trying to comfort.

But he's home now, and we're working at it all as best we can.

That's the week in review regarding my DH Frank.

My next entry will be that same week (and the period leading up to it) with regard to my beautiful daughter (Beth) who has Schizo-affective disorder.

Wednesday, October 7, 2009

Life on the Edge

I watched a show last night on a subject that has impacted my life for quite some time: Mental Illness. The show was titled: "Minds on the Edge". It can be seen on PBS stations or at their website: devoted to the subject.

I have "suffered" with debilitating anxiety and depression my entire life. My daughter was diagnosed with schizo-affective disorder nine years ago. The stigma of mental illness contributes to keeping me down and isolated. Fear for my daughter's pain from stigma is what has kept me quiet.

The slogan of the Minds on the Edge campaign is "If we can talk about mental illness, so can you". And so I have finally decided to. I am beginning by asking all who read this to watch the "Minds on the Edge" video. It's only an hour, but it clearly and easily explains so many of the horrid issues that folks with mental illness face and the deterrents to getting well that the "systems" of our country continue to operate from.

One major point that I would like to re-interate is that mental illness is an ILLNESS - a physical issue with the brain. There is much that needs to be done to enhance that understanding. Please begin to take part, and help save a huge population of our people who live life on the edge.