A Broken System

Art-Brut-3The Mental Health System is broken.  It is not functioning well, it is disconnected, lacks congruity and relies on short visits from doctors, not prepared to see their “patients” and a long list of drugs that they think will work within 4 days.  They don’t, medicine takes time and should be accompanied by a healthy diet, good sleep, exercise and trust.     This is now the 5th hospital stay for my son in two years.   Each visit lasted one week to 5 weeks.  He was always discharged right when our insurance was about to end.  We didn’t notice this until the pattern emerged after the third stay.  My son knew this too, he has learned to be institutionalized, he knows his rights and what he can refuse and not refuse.   Now I don’t want the reader to think I believe all mental health care workers are bad or incompetent, but the system in which they work seems to be like the mind of a schizophrenic; many voices shouting over one another, people doing things that overlap, a system that doesn’t believe the patient, or the caregivers input. they simply want to stabilize and get them home.   Trying to work with them leaves me so exhausted and stressed I just want to find a way to start my own facility.  Get about 10 million dollars in grants, buy land, build housing, base the model on a system that incorporates the spiritual element as well and use the money so people can actually afford to come live there.  A self sustaining facility, growing their food, nutritionists, fitness trainers, doctors who want to stay and mental health nurses and aids that love people and don’t get cynical.  A wild fantasy for sure.   There are a few I have found some that sound promising ( except the spiritual part) but they run about 26,000-30,000 per month.  That’s right, per MONTH.   Who can afford that?   Average stay is one to three years.

This last hospital visit was the worst.  The facility was the nicest, it was the cleanest, almost posh, but the workers were detached and didn’t even know my son’s name.  I came to visit and no one talked to me, acknowledged me or my son, it was so odd.  Not a hello, or “is this your mom”? or “this is how he is doing”….they called him by his first name ( a big clue that they didn’t even know he went by his middle name).   Visitation was a joke, one hour at the worst time of day ( three times per week).    My son, for the first 3 and 1/2 weeks was throwing up his meds.  I told them he was, but they didn’t believe me.  They said that couldn’t happen.   But he was pacing so much his socks wore out and he lost weight.  We had to buy new pants and socks,  but still they told me there was no way he wasnt getting the meds into his system.  I explained about his personality, but the doctor told me he couldnt listen to my ideas based on a hypothetical theory.   I said, it isn’t theory, he is waiting you out, he won’t comply because he know you will release him in 30 days.   The doctor did take that to heart and told him he would keep him longer.  Then an amazing thing happened, my son took his meds and began to participate.  He slept through the the next four days but stopped pacing and barely ate.  He needed the sleep I am sure but now he was a zombie. Now by this point the dosage was so high because they thought he wasn’t responding, he turned into a walking zombie.  they were happy because he stopped pacing and actually slept longer than one hour per night.   I requested they drop the meds back down to entrance levels and the doctor actually agreed with me and lowered the dosage, but it was still very high and because he refused to give blood they couldn’t test the depakote levels.    We knew that day 30 was arriving and they would release him because our insurance was up, I asked for a 4 day extension because my husband was still in Korea for an army conference and I didn’t feel safe bringing him home alone.    We haven’t been safe, it has been dangerous, emotional, violent, erratic and we feel like we are fighting an unseen fiend who is preying on our son.   Everyone in the household is on edge and the tension is unbearable.  This, unfortunately, feeds my son.  He , like an X-man mutant, receives all our tension and feeds on it.  We try to conceal this life from others, but it pours out like water you try to hold in the palm of your hand.

We then had to  follow up with the local law mandated appointments with the county run center.  My son would not speak, paced the halls, was verbally abusive and obviously mentally unstable at the time.  I could not make sure he ingested the meds. ( to the novice reading this, I assure you that following around a 21 year old man and watching him to ensure he keeps the pills down can be dangerous,  to avoid violent conflict I ask and trust and then watch behavior, if he is acting out I tell him I have to call 911, that usually makes him compliant, I just do not want the reader to think it is as easy as watching him swallow pills or stand outside the bathroom, what you deal with in this situation is not rational or reasonable, you must throw out those techniques)   But the county behavioral health  did NOTHING for us.  I begged for help, I needed in home help, a nurse or a mental illness specialist to help me or a home or living facility he could stay, anything.  But nothing exists.    She spent 15 minutes typing as I talked, because my son “saw fit” that I should speak and not him”,  of course everything I said “were lies and needed to be deleted”  She was typing continuously while I talked, it was a loud keyboard and extremely annoying, I don’t know how my son didn’t come flying across the table.  Want to be tense?,  just type everything a person is saying while they talk, don’t look at them or listen, just type type type….maybe a new system could be installed, voice recording and then have someone type it later?  I dont know.   Just don’t irritate mentally unstable people more please.   I asked what I should do, I was a little scared, she said ” he said he wasn’t suicidal or homicidal so she could do nothing”  I actually said that, remember he wasn’t speaking…. She said I could take him to the ER but they would only think he was an angry teenager, but he isnt, he is  21, almost 22.      So alone in a vast sea of undulating waters that pulls us down to the bottom while we fight the current trying to get a breath we go on.   I left and wanted to sit in my car and cry.  But I knew my son would feed off that emotional surge and I had to remain calm.

I had really hoped the doctor prior to discharge would use his leverage, and tell my son in order to be discharged he would have to 1.   allow them to draw blood and run a full blood panel screen to check his system, 2.   run a drug screen and  3.  they could order a brain scan so we could look at this neurologically and rule out anything there.  He denied all three.  He said the brain scan was only for traumatic brain damage and would not help my son’s case,  ( not true, I have several academic papers from Harvard, Mayo clinic etc) and they show schizophrenic brains on scans can show us a lot.  He hasn’t had a blood panel since this started three years ago, we have no idea of white cell counts, and all other levels,.   I was so upset because the leverage was needed to get compliance.   We will try on our own to find a neurologist and get this done this week if possible.  I will have to find my own care givers by searching alone yet again.  And just for the record, I am a member of NAMI, I support them, but the support group I attended was so depressing I just couldn’t go back.   I sat with women twice my age who had been taking care of their sons for 25 years and they were no better.   They were in and out of hospitals , broke, non compliant with meds and many had been in jail.   I am just not ready to concede.   I would rather be in denial for a while longer , I would rather choose hope and and work to make a new system.  I will await my miracle aslo.

Depression-and-Mental-Illness

My husband and I have decided to just tell people he has cancer when he acts strangely, we could just say he has brain cancer.   Then people wont be so scared and judge him or us.  It is crazy to say that, but if he was terminally ill anywhere else in his body people would be kind and helpful, but if it is a sickness of the brain, then it is our fault or his fault and they avoid us, judge us and leave us. ( most don’t say that out loud, but you  hear what they say, people don’t’ keep secrets.)  People just can’t handle unresolveable situations.   Because it is so exhausting and you never feel like it will end, others just don’t want to be around that.  I can’t explain it, but we have lost friends because they  think we should fix this and move on and if they don’t see results then we arent doing what needs to be done.   They don’t believe me when I tell them how broken the mental health system is, they just don’t believe me.   And they don’t think it could ever happen to them because they are good people and good parents., that cause idea again.   No one would ever blame a parent for cancer or diabetes or autism, but mental illness…..there is a stigma attached to that.  I just have to smile and try to educated them.  If they really want to know I have books to read and they can search.   I have one dear friend who is already searching, reading and doing all she can to help, she was with me at lunch with my son and it so shocked her she went into full blown “I must help her mode”  Thank heavens for friends like that.  No judgement and the power to want to make changes.

Be that friend, be that person who will step in and help.  Be that person that writes the congressional leader to fund grants to open facilities, who will stand in the gap with fervent prayer.   I am so blessed to have that friend, I am not alone.   Christ sustains us and sends us people who will love and care for us.  Even in the mess.  Because this is messy and weird and unworldly.

Sounds of Silence-thoughts in a broken mind

Hello darkness, my old friend,
I’ve come to talk with you again,
Because a vision softly creeping,
Left its seeds while I was sleeping,
And the vision that was planted in my brain
Still remains
Within the sound of silence

This song seemed appropriate to listen to  as I left the  behavioral health facility after another visit to see my son.   The noise in my son’s mind must be unbearable.   His drugs are dosed way too high.  But then again when one gets thrown into a stabilization facility and they don’t know you and you are not yourself they simply start guessing.   The problem is the human condition is fluid.  Not everyone is static.   One drug may work in miniscule amounts or not at all.   My son was off all meds and we were all told nothing was wrong 9 months ago.  We took him off everything according to this doctor, I wrote about it in a previous blog.  We chose to believe him. It was nearly impossible to think this Psychiatrist was right, but we did as he prescribed and took him off all meds.  For 9 months my son was as right as rain, as normal as he could be considering all he has been through.    I will still choose hope and belief.  What else am I left with?   At a meeting I tried to attend I was told the sooner I get over my denial and accept his illness, the sooner I can heal and move on.   Call me stubborn , but I am content to live in denial and pursue hope and healing.   I just can’t give it all up, I am not ready, I may never be ready.  This battle is ongoing and we had some rest and relaxation for 9 months, but the enemy is back.    I know I am supposed to be all scientific, but I just refuse.  I have a body, a mind, a soul and a spirit.  My soul is where my will and my emotions live and my mind plays a part with that soul and also with my body.  But my spirit?  Yep ,it has a part to play also.  It is where faith lives.  All humans have faith-they simply put their faith into different values and ideas.    Some have faith in Jesus, who claimed to the be the son of God and was crucified for His statement of Godhood.   I am one of those who believe He really was son of God and really was crucified and then on the third day He was resurrected and defeated death for my sins, my inability to live a perfect life.  Some have faith that there is no God, or faith in themselves, or faith in the universe or a doctors diagnosis.

Mental health is too complex to leave to one aspect of the entire human condition.   He needs His spirit to be filled and protected, he needs his mind to calm down and stop racing and shut down ( drugs can really help here), his soul needs nourishment to know and realize he is loved and safe and his body needs sleep, good nutrition , exercise and in his case NO ILLICIT DRUGS.  It is like he is allergic to them.  They open something up inside him and out comes strange ideas, movements and paranoia.   What is interesting is that his symptoms are like so many others.  I mean literally.    Same script, same words, same attacks, same voices……how can that be?   I can understand diabetics having the same symptoms because their organs pretty much work the same in everyone’s body in the same way, or in their case they don’t work.  But mental health?  How can symptoms cross cultural, racial, socioeconomic barriers?  Even religious barriers?  The more I read accounts the more I see my son in other’s books.  Same signs, symptoms, voices, gestures, etc.   So I know the brain is doing something chemically, from some cause ( drugs seem to be a trigger) and almost all people lack insight that something is wrong.  Their brain literally tells them the wrong signal.   It seems intentional, like an enemy force put the play into action in their brains, that the enemy was able to get inside and send signals to fire in the brain for them to say the same things, act the same way, use vulgar language, become super strong, see the same figures…..How can this be?   It has to be spiritual.

I do believe in a spirit world, because I believe the bible.  It talks a lot about messengers or as we call them angels.   Most Americans believe in angels, but not fallen angels.   I do, and not just because of the bible but because I have seen their work.   Like a portal opens and they have permission to come in and prey on a  person in their weakest area.  They would know, they are assigned to each person.  God , in the psalms says each person has guardian angels ( messengers from God) so that is at least two messengers.    If I were the enemy I would send at least one to frustrate the plans of God.  And since they have been around longer than all of us they would know all our weaknesses, hear our self talk in  the silence when we are alone,  and they would know all the generations prior to us; what they did, what their weakness were or their ‘bents’.    They could easily have a way in and I believe unforgiveness, rejection, drug addiction, occultic practices can be portals for them to come in.    I am sure I have lost a lot of you by now.   Everyone would like it to be a scientific curable problem, but it isn’t.  And the truth is it is growing and the system is broken and most end up in a vicious cycle of hospital, release, counsel, rejection of meds, back to ER, then to hosp for stabilization and all over again.   And it costs billions over the course of time.   The hard part is that the person who is afflicted doesn’t even know , their minds have become captive to something else; and their families are stigmatized, embarrassed, judged and set aside.  No one like to deal with a problem that doesn’t seem fixable and appears self inflicted.  (IT IS NOT)

Sounds of Silence…..those words haunt me, because they do not describe silence.   They describe darkness being a friend to talk to , visions creeping in while sleeping and seeds being planted in his mind.   But it is familiar and he considers it a friend, someone he is acquainted with.   Think of a child with an invisable friend, or a monster under the bed….what if they had insight into the spiritual and we did not protect them with the word of God and told those foul spirits to leave in Jesus name.  What if they were trying to tell us something and we didn’t listen because we didn’t believe.  We need to  Close all portals of unforgiveness , bitterness and rejection and shame, (any many others), which often lead to destructive behaviors people use to cover it all up,hide it, run from it

And in the naked light I saw
Ten thousand people, maybe more.
People talking without speaking,
People hearing without listening,
People writing songs that voices never share
And no one dared
Disturb the sound of silence.

I don’t have the answers, this is simply a writing of thoughts along the way of my journey into this dark world I have been thrown into and  my wondering  about what is going on.     I want to fight this on all sides, I want to help those in every area.  A war cannot be won on one front, it must be flanked and surrounded until the enemy surrenders.  In this case I will fight, pray, study both the word of God and the word of doctors.  I will search medicines, nutrition and deliverance as well   I believe we saw a miracle for 9 months, I know it and I will not let my faith be shaken…..This son of my will be of sound mind and not possessing a spirit of fear.   Here me enemy of the light, your days are numbered, in the name of Jesus Christ you will leave and your plans thwarted not only for my son but for a multitude.   Amen, which means SO BE IT

one month

IMG_0028Time is something that we really can’t measure.  Oh sure we try, there are minutes, hours, days, weeks, months and years.   We even break it down to milliseconds and then try to grasp the infinite, but at it’s core we can’t really tell time.  We just live daily and look forward and back and try to plan and re-group and move ahead.

I have a one month time appointment.   You see one month ago I walked into a new meeting with my son, and a new doctor, ( assigned to us) to help manage some medication for an unknown and mystical ailment he has been dealing with.  Of course if you have never had the chance to navigate the unchartered waters of the mental health world you would not understand that there is no answer, no cure or consistency when dealing with issues of the mind and often there is no “diagnosis” either.   We just know we have to go once a month for a check up and do all we can to avoid another hospital stay.   We went expecting to try something new, something that would help and not hinder in this field of “lets try this” or “lets mix this”, or “here is a new one”, but this time we had a total unexpected event.  The new MD, Psychiatrist, simply looked across his desk and told my son nothing was wrong.  He declared he was fine and didn’t need to come back at all.  After I physically shut my jaw that had hit the floor and stopped the lump in my throat from breaking free, I asked what exactly what did he mean?   I told him that he was required by the law to come for the next year, once a month, and that, we would in fact be coming back.  He stuck to his guns and said nothing was wrong and to stop all medications, within 4 days or so.  That sent alarms running through my brain, I knew you couldn’t just stop meds without weaning down from them, luckily I had done just that the previous 10 days as I thought his meds were, in fact, making him worse.   But this?  Stop everything and move on as if this was just a blip on the screen of his life?  My son looked at me and said  ” I told you nothing was wrong with me” so he stopped all meds that day.  It was all I could do not to come unglued and panic as I thought he would be back in the hospital and having to endure so much more pain and anguish; I remained stoic and nodded.

So, one month is upon us tomorrow.   All is stable, no real issues with withdrawal and absolutely no symptoms manifesting as they had in the past two years.   So, of course I was determined to find another doctor and get someone who could help my son; I mean there is no way this “assigned” “cheap” psychiatrist could be right,  and then I took a breath.  I mean, we had been praying about this, interceding on his behalf, believing for a miracle and when I heard the words that he was fine I simply dismissed them.   I set my mind against this doctor and waited to be proved right, after all my son has had two years of darkness and unworldly behavior, he couldn’t just be “fine” now could he?  We had been dealing with things that one only sees in the movies and now “there is nothing wrong with him?”; I have seen too much wrong to believe

So I made a conscious decision to believe.  After all, I ask my gals in bible study to trust and believe and here I was an unbeliever in the face of praying and asking God to heal my son.  I felt a bit weird confessing to the group that I was going to believe the doctor and go along with diagnosis that he was fine.  That he had endured a hard couple of years and was labeled by the first doctor and then all the other doctors followed suite.     I knew enough that he had been under spiritual attack and my husband and I had even felt the real presence of evil in our home.  But none the less, I chose to believe.  I chose to believe in the power of prayer.  I chose to believe that he is healed and even  if he is not,  I will still choose that the God of the universe will protect and keep him and for hope, but I DO BELIEVE.    It sounds unlikely I know, I have talked to many people who would think I was in denial, they would try and talk me out of believing due to past behaviors, but I am choosing to brush them aside, I BELIEVE,

When was the last time you asked God for an answer to prayer and when you got one you simply denied it?    I thought it would look different, that it would be harder and not so clear!   So this doctor says my son in is fine, Okay, I believe and give thanks to God.  Even with all that I declare, I am still struggling to not type an addendum; to say” please don’t judge me as a fool if I am wrong”  and don’t mock me wanting to believe   But in the end I know I follow the God of the universe, and He says I can go to him and ask for wisdom and to ask without wavering; so today and tomorrow and the next day I will choose to believe my son is better, he is really better, so I will say again I CHOOSE TO BELIEVE, do you?