Recovery – Day Five

He’s not coming out of it like usual. I swear he’s becoming delusional. And I know delusional and how difficult it is to get along with them. To avoid conflict you have to buy into their delusion. It’s especially hard to do when the delusions change from day to day.

Every day he tells me something that’s just plain wrong:

“We watched that show together.” Except we did not watch that show together.

“Where’s the leftover chicken from last night?” We hadn’t had chicken in several days. Is this a problem with keeping track of the days? It doesn’t seem so, because he insists we had roast chicken the night before and doesn’t understand why I would deny it. You would think logic would come into play, but no.

“Can you print something for me?” I do. Then I give him the papers and he says, “I didn’t ask you to print that.” This in a span of 15 minutes.

He is so convinced that what he remembers is real and what we remember is just wrong. I ask him, “Why would I lie about that?” Not to mention, he knows I have never lied to him.

Every day he has a new problem with his computer or tv. One day it won’t turn on at all. The next day he has no volume control, etc. He’ll get each issue fixed and a few hours later it’s another problem. I’m not sure there is ever anything wrong. It’s impossible to know. He won’t leave it alone long enough for you to really help. Near as I can figure, he hallucinates that there is a problem and starts to unplug and turn things off. But I have to go in his room and look at all the wires and figure out what he’d disconnected.

I’m supposed to go with him to the doctor today. He’s talked about it all week. Now this morning he doesn’t want me there and doesn’t want to give me permission to talk to the therapist at all. I told him if he wanted his dad and me to be able to help him, he’d give his permission. Now he’s in his room, ruminating on why we are so mean and demanding.

It is 11:40AM and I’m arguing with Son about it. He’s telling me we should get going if we’re going to make it on time. I thought the appointment was at 1. He says yes, but it’s 12:40 and I have to repeat it is not. Now he’s upset again and hiding in his room. I’m looking forward to the ride to the doc. God know if I’ll even get to say anything once I’m there. Probably a total waste of time, but I’ve got to try. They need to at least understand that the situation at home is barely tenable. We need help to understand, and they are not getting a complete picture of the situation.

GAAAAAAAAAAAAAAAAAAAAAAAAAAH!!!!!!!!

 

Home Again, Home Again, Jiggedy…Fuck

Son was very angry when we brought him home yesterday. He said some nasty things to and about both his dad and me. It was almost more than I could stand. At one point I told him that if he felt that unwelcome and cared so little for us and what we have done for him he’d best get with his social worker to find him a job and somewhere to live.

This is a hard thing on any family, but somehow it feels a bit more cruel since Son is a man not a child, and yet when he has these episodes it is like caring for a three year old. You have to stay up if he’s up because you don’t know what he’ll do. I no longer have that sort of mental or physical stamina.

I am now able to see these flair ups coming. Unfortunately, I don’t know of any way to stop their progress. Son has not been too good about hearing me, but when he starts getting manic it’s like he’s completely deaf. He can’t sit still and paces. If I ask him to sit he goes off and paces outside. He starts projects all over the house, but never goes back to finish. Makes it impossible for anyone else to function in the house because you can’t get away from him. Like a three year old tugging at your leg, screaming “mama! mama! mama!” like some kind of mantra.

I watch as each day is a little worse than the previous. He becomes depressed and manic, which then turns into anger and destruction; throwing things, pulling things out of his closet and dresser and tossing them about. Again, you still cannot talk to him in this state. All I can do is sit back and wait for him to get into a full blown psychosis and take him to the hospital. They won’t admit him if I bring him in before he hits this level. He’s got to be completely out of his head before they admit him. Son has visited the ER 15 times since August 2014. Twelve of those visits he was hospitalized.

The only thing Son gets out of it is a dose of a mixture of Xanax, Benedryl and something else which calms him down. Son really doesn’t get much from his stay. Almost no counseling, a 5 minute interview with a psychiatrist, a meal and a bed. And the only thing his dad and I get out of his 72 hour stays, is a little peace and quiet, and a chance to catch up on lost sleep. So really they are a waste of everyone’s time and money. Now, if I could have a syringe full of that Xanax mixture, maybe I could calm him down before he ends up in the hospital.

I’m learning as I go and trying to find the best resources and be an advocate, but it appears I learn very slowly anymore. Maybe if I push the idea on the mental health community, that we all suffer when a loved one is afflicted with a debilitating disease, and the entire family needs to be involved in the therapy.

They need to agree on new criteria for 72 hour holds. Once drugs and alcohol are ruled out as possible reasons for odd behavior, someone should speak not just to the patient, but their family. During Son’s BPD flair he will give misinformation that the hospital cannot verify. I don’t know what sort of information he is providing to his doctors. He will talk about a hallucination as if it were real, and if no one is there to tell the docs it was a hallucination, how can they properly treat him?

For me the toughest thing about his condition is it’s nearly impossible to control without the full cooperation of his doctors. I told him today that if he wants us to help him, we must know what his doctors do. He said he would bring me in to talk with his therapist. So we’ll do that Friday. I’m going to ask if I can have an after hours number to reach her office when Son starts going off. Ideally, I’d like to work toward stopping these episodes from progressing to hallucination.

For all of you suffering with BPD or suffering because you love someone with BPD, I wish the blessings of the universe on you. And remember there are really only two options in life: Give Up or Keep Going.

 

 

 

 

Bi-Polar Again

I don’t understand this illness. Son can get along just fine for 5-6 weeks and then he gets manic, stops sleeping/eating. He starts losing things. Completely losing things, never to be found again. Like half a pair of sneakers. How do you lose just one shoe  between night and morning? I swear he must throw things away. After a few days we generally start to wonder if he is using or drinking. We talk to him or ask him about it, and he of course gets defensive. “Why don’t you trust me?” Then he starts getting really agitated, can’t sit still. He’ll stay in his room, barely speaking to anyone, then suddenly barge into the room, say something odd and mumbled and disappear again.

He has started seeing things and hearing voices.  He kept sweeping his room, complaining that it is impossible for the dust and dirt to reappear when he just swept. He told me it was the ghosts doing it. They don’t like him. He had chunks of time where he spoke of things that have not happened. Then he would have a few minutes where he seemed completely ok.

This time I called the PET, Psychiatric Emergency Team. While it was nice not to have to involve the police, especially since for the first time he was remaining somewhat talkative and aware. He was calmer than most time he gets like this, so I thought about cancelling PET,  but I knew he could go downhill pretty quickly.  My hopes of help were dashed when this team tells me they can do nothing. He is calm and answering questions with them. Even if he answered a question with something completely odd. They said that Son needs to meet the requirements of a 5150: Is he a danger to himself or anyone else.  That’s it. They don’t think talking to things that aren’t there, and discussing how ghosts are messing up his room as warranting a psych hold.  Granted his odd behavior is not against the law, but this one defining question as to a psych hold, “Is he a danger to himself or anyone else?” hardly seems enough.

We had been nearly three days with almost no sleep because Son had been up cooking breakfast at 1 AM, or any number of daytime activities in the middle of the night. He loses all sense of time when he gets like this. You cannot reason with him. He doesn’t hear you, sometimes I’m not sure he even sees me.

In all I have read I have only seen mention that someone with BPD may hallucinate a couple of times.  But it’s just that: one line or two saying some people may experience hallucinations. I need to expand my search parameters. At last! I found a couple of good places for more info.  All I needed to do was add “hallucination” or “psychosis” and boom, I got info. Helpful? Somewhat.

In the end, Son voluntarily admitted himself to the hospital because of the hallucinations. He called this afternoon angry because they wouldn’t let him out. Possibly the psych team admitted him unwilling, or they don’t feel it’s safe to release him. Either way he is terribly angry. Tomorrow he will be contrite and beg us to pick him up.

It’s gotten to the point we don’t want him in the house, he’s so disruptive and unpleasant so much of the time. But if it’s just the BPD we have to hang in there, but if he is doing this to himself I don’t know that we can.  If we could just get a doctor to confirm that nothing untoward showed up in his blood work. Last time we went through this I managed to see his lab results and Xanax was detected. He doesn’t have a script for that and had a terrible habit at one time.

He can’t get into rehab unless he is actively using. He can’t get into a sober living home unless he’s clean. He is unable to hold down a job for a litany of reasons, so he lives here. How do I help him? How do I get through to him? Will he let me talk with his doctors? Only one way to know. I’ll ask him when he comes home if he would let me talk to them.

 

 

 

Care For The Mentally Ill

When will there be no stigma or restrictions regarding mental health.  My son just spent 7 of the last 10 days in a mental health ward.  He acts no different.   Still surly and angry, which I have come to understand can be part of BPD (bi-polar disorder).  Unfortunately, that is very hard to take.  I’ve never handled the anger of others well.  Get mad at me and I just want to run away.

The docs sent him home with lots of scripts, including Depacote, but I’m not sure what else.  He’s not very talkative right now, except to complain to me about his dad.  Somehow Son blames his dad for most of his problems.  It’s really hurt my husband deeply, to think their once very close relationship has come to this.

Frustrated?  OMG!  I don’t think I could feel more helpless.  We are unable to get Son to do much to improve his situation.  I have begun the necessary paperwork to get him on federal disability.  Now I have to find him a new GP, a therapist, and a psychiatrist.  Because if I don’t do it, it will never get done.  I’ve been on the phone every day the last two weeks trying to get him into a 30 day program.  I have left message after message, but never received a call back.  My last call, yesterday, I thought I was making progress, as I finally got a name (though they gave it so fast, I didn’t get it, but I did get his extension, which is helpful.  I’ve left him a message.  You know, if they don’t have the space, fine, just let me know and I will try elsewhere.  Almost NO ONE takes a patient with Medi-Cal.  The plan is absolutely worthless:  Poor quality care, lousy doctors, horrible office staff, red tape, ridiculous rules, and the docs don’t get properly paid.

I thought I found a psychiatrist last week.  The office staff and website all refered to her as Doctor, but she is a Nurse Practioner .  I think labeling her Doctor is misleading.  I asked her about her education and I find out her masters degree is in epidemiology!  And you know what else?  In California it is nearly impossible to check up on a Psychiatrist.  If you’re a lawyer you’re a member of the State Lawyers Association, and usually, a member of the national lawyers association, both of which can be easily accessed by the lay person if you want to know what their specialties are, make sure they are properly licensed.  But you cannot do the same for psychiatrists.  That most definitely seems quite wrong.  Especially when that “doctor” prescribes a drug (in this case Rexulti), but doesn’t mention any side effects.

He took one of these pills and his regular meds and a lot of alcohol, and by midnight he was hallucinating and speaking gibberish, he was paranoid, and angry, and just plain out of control.  So we took him to the ER where he sat for 5 hours during which time, nothing was done.  Why?  Because they could not make sense of what he was saying.  They would not speak with me about what had been going on.  All they wanted to know was whether he was suicidal, and because they got a “no” they just released him.  At home about an hour later, things got worse and we had to call paramedics, but since we didn’t know at the time what he may have taken, the police also arrived.

Why should I have to call the police?  They aren’t trained to recognize psychiatric problems, they just treat everyone like a criminal.  I specifically requested paramedics, assuming they were trained at least minimally in psychiatric disorders.  But they never even spoke with Son.  So I had to watch the police manhandle my poor boy and take him back the hospital to be placed on what they refer to as a 5150.  Basically it’s a 72 hour suicide watch.  It was a horrible place, where he got very little help, but when we got him back he was able to converse.

Then two days later he checked himself back in.  He came home today.  He has been drug and alcohol free for about 10 days, but his mood is still black.  He is quick to anger and always yelling.

The thing is, if he’d cut himself, or had cancer, or had appendicitis, he would get immediate and appropriate care.  But because he has a mental condition, nothing is done.  I am so angry with this broken medical/insurance system in this country I could scream.  Why is it we have to wait for bi-polar individuals to totally lose it and hurt someone before anyone intervenes?  And then again, it’s the police.

Why are mental illness and addiction treated as crimes?  How do we change that?  Finding a solution is very hard, but I’m trying.

 

 

 

 

 

Life is Hard

I know everyone experiences rough spots.  Some rougher than others, and some that never seem to end.  Is it Karma?  Was I truly an awful person in my previous life? Not that I believe in reincarnation, but I do believe in Karma, that the things we do, in this lifetime, effect us in the future.  Things you’ve done to others will be done to you.  The old “what goes around comes around” ethic.

So, how do you improve your Karma?  There are Buddhist ways of meditating to improve one’s Karma.  I’m not very skilled at meditation, but I’m trying.  Each night I meditate on sending peace, love and kindness out into the atmosphere, occasionally thinking about someone in particular who may need thoughts of peace.  In a lot of ways you would say these were prayers.  Not asking for anything for myself, but rather trying to think only of others.  That’s how you’re supposed to improve your Karma, one way anyway.  The question is, how long must you meditate before you see any changes?  I would guess it’s the same as with any belief, you have to hope.  Mostly because without hope, what have you got?

I know rich people who have had awful things happen to them; painful divorce, sudden death, bad business deals.  I know it affects them as it would anyone; anger, denial, etc.  The big difference I see from my place low on the economic totem pole, with money they are able to overcome much easier than those without means.  Simply; rich people can afford lawyers and CPAs, personal assistants, and the best medical care.  So does that mean rich people suffer less?  I think it does, in general.  Because money affords you the means of coming to grips with a given situation.

Without money divorcees (male and female) have no way to assure child support and alimony payments being regular, that agreed to rules are adhered to.  Without money the healthy uninsured worker becomes sick, cannot afford proper medical care.  Even ERs no longer provide much assistance to those without the means to pay for service.  The doctor doesn’t diagnose you, no tests are done.  You’re bandaged up and sent home with a $5000 bill for “services rendered.”

Son and I are getting heavily into our mid-life crises.  We both have times where we hate our life, are feeling trapped by the previous choices that were made, and fear of what to change and how, or if.  Life is hard, but sometimes it feels harder because you have BPD or depression, or MS, or Lupus, or any serious ailment–one that will ensure you will have greater than the average number of dr visits, prescriptions and tests. 

In the US there are hundreds of thousands of people with undiagnosed disorders and even more untreated disorders.  But since most of these people are poor, for the most part no one really cares.  Bad Karma.  The world is full of bad Karma and not enough people sending positive vibes into the Universe to combat it.