Anosognosia

Discussion in 'Parent Emeritus' started by completelydrained, Nov 4, 2018.

  1. completelydrained

    completelydrained New Member

    Hello, I am new to this site. Please bear with me as I tread lightly as I have read some of the posts and feel a bit anxious about what I need to talk about. I am the wife of someone with Bipolar/Panic Attack syndrome, the mother of a first born son who was an absolute pleasure to raise who fell ill with Paranoid Schizophrenia a few days before his 19th birthday. His Neuropsychopharmacologist said it was the worst case he had ever seen. Having done my homework while waiting for my son's first appointment with him, I was so relieved to hear the Doctor say "But, he does still have insight". It makes all the difference in the world. My husband also has insight. With a lot of extremely difficult work and literally years of finding the appropriate resources and my son's own ability for his need for medication compliance, he eventually went back to work part time, lives on his own and manages his disease very well. I literally became an expert on finding resources and ended up getting a job as an advocate for people with disabilities. The job was a perfect fit for me. I've written many articles, had my own blog and read so many books to prepare me, my family and to support others I can't even begin to count them all. I practically have a Black Belt in applying Alanon and Adult Children of Alcoholics 12 steps and rules of detachment due to my family of origin and all the issues that were born of growing up in an alcoholic home. I did not however find the rules of detachment useful when dealing with my son's schizophrenia. I even wrote about it in my blog. I intend to share the NAMI Metro newsletter article here when I'm ready. So I am really uncomfortable with using them now. My second born son, the one we thought could go on to have as normal a life as possible ended up in a snowmobile accident in 2013 and has never been the same since. He is currently homeless. We have never given him anything he did not earn. He had his own successful Construction Company prior to his accident and we own rental property that he has worked on for us in return for being paid over the years. The last time he did work for us, new roofs, 8 screen door and entry door installations and quite a few other upgrades to our garage, my husband paid him by buying him a used car. We knew the people he had been living with 5 hours south of us had had their fill and he would be homeless. We also knew in order to find steady work he needed a vehicle. He lost everything when his symptoms reared their ugly little heads at the age of 33 and his wife (who had been seeing her ex boyfriend while being married to my son) decided to get a divorce. He lost his business, his house, and eventually his truck and all his tools. I am not one to advocate walking away from a spouse when they become ill unless they become dangerous. When they were married, no one had more influence to get him help than she did. She didn't even try. Don't know if I'll ever be able to forgive her for that. Now as we zoom back to the present, I am miffed. Totally miffed because in all my years of working with the mentally ill I have never seen anyone with worse Anosognosia than my son. His oppositional and defiant behavior is classic and his paranoia toward us is as unfounded as it could possibly get. His memory has taken a big hit as well. He blames everyone else for his current status when of course nothing else could be further from the truth. He exemplifies agitation, aggression, apathy toward working (this was a person who loved to work), lack of motivation, depression, anxiety, delusions of persecution, and lives in a state of disease created victimhood. So, for the first time in my life I am faced with the worst state of powerlessness I have ever felt. And I really do not assign co-dependency as the cause for one second. To me, it is purely the outcome of a faulty system of care that refuses to change their definition of mental illness to include the common symptom Anosognosia (the biggest barrier to treatment) and give parents the right to insert themselves as the primary caregiver of someone who has to rely on someone else testifying to the fact that their son, daughter, etc, is sick and needs help. What we are forced to do as parents in the hope that our children 'might' end up in the right hands of someone who has the authority to commit to services is outrageous and cruel. We literally have to abandon them to a system that quite frankly doesn't give a crap if they live or die. A system that doesn't step in until they commit a crime or actually hear for themselves threats of doing so. A system that has a suicide body count so deplorable that they are the criminals if you ask me. Durable Power of Attorney is not the answer. Guardianship is not the answer. Why? Because we are not going to live forever and then what? Waiting until the disease has progressed to this point can and often does mean that the individual will never reach the level of stabilization they would have reached if early intervention was allowed based on the observations of parents and others who know that someone is sick and needs help. Last summer, my son visited us and ended up staying for a couple of months. He kept asking me to drive him back down to what he feels is 'home' and just drop him off. He no longer wanted the car because someone was using it to spy on him through it's GPS system. My response was always, "You are not a prisoner, your vehicle is ready any time you want to leave". Things got pretty heated one evening with him yelling at me to take him home and my husband just caved. He got him in the car and drove him and dropped him off with nothing but the summer clothes on his back. I recently mailed him his winter clothes, and toiletries in a back pack. I try to keep the lines of communication open. There are days when he texts me 20 times a day. And other days when I don't know if he is alive or not. He will not accept any help from us. Even getting him to accept his own clothing was a battle I fought hard to win. I am heart broken, exhausted and terrified every single day and there is not enough praying to drive these feelings away. My feelings are a normal mother's reaction to a situation so dire and drenched in a reality of circumstances that are parked in my heart like a concrete brick of heaviness and grief. The one thing that keeps looming toward me with a a vengeance is that God gave us all a free will. Because of Anosognosia my son's free will is on a path of self destruction that will not be steered by anyone but him. Anosognosia is the foe, the robber of healthy minds and hearts, the thief in the night that stole my son. And it's about time the mental health system makes it a priority and gives parents and other loved ones the right to tackle it before it's too late.
     
  2. Copabanana

    Copabanana Well-Known Member

    Welcome. Others will come soon and I will get back to you later

    My son is 30. There are similarities in our stories. He had a Traumatic Brain Injury (TBI). And other issues. There was the same lack of influence on my part and constant resistance by him. He has been neglected and abandoned by the system. He will not let me help. The institutions bat him away like a fly. It has broken my heart.

    No matter what I have done, it has not worked. Except prayer. And love. I have nothing else. Like you I have learning and resources and motivation and great need but no control.

    I have come to see this as my own path to walk, and to see this as my own spiritual journey, and to not so much locate my efficacy and well being in results I cannot control. It is hard for me.

    Welcome. Here. I am sorry for your deep pain but I am glad you are here.
     
  3. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Your Guardianship may only last until you die, but you can appoint someone to succeed you or the state will appoint a state guardian after you leave. Becoming a guardian is a legal proceding. I went through it with my autistic son and went to court. When they felt he no longer needed a guardian, and he didnt, we went back to court to get the guardianship removed. I am quite sure your son would be deemed in need of a guardian. Call an attorney.

    I would try this rather than sadly watching him trying to survive himself in his sad state. And you arent dying tomorrow anyway. If you can help him get stable now and on the right medications he may get much better, but that isnt going to happen if he is free to make is own decisions. Is he also schizophrenic? I am so sorry. I volunteer four days a week with younger mentally ill mostly men and have a very stabilized mood disorder myself. I see great progress with these young men! I feel your son csn get help too although our mental health system really does need an overhaul. There are still good places to get services. Dont give up.

    I can not tell you how much I hope you can get your son help. Its out there. But you do have to fight if your son thinks he is fine and I do feel that any time spent as his guardian could help him find those good places where there is help. Real help. I really like university mental health clinics and hospitals. Has your son seen a neuro psychiatrist?

    My prayers and well wishes are in my heart for your family!!
     
    Last edited: Nov 4, 2018
  4. completelydrained

    completelydrained New Member

    Thank you for the warm welcome! I don't feel that I want control. My goal as a parent was always launching my children into adulthood and a life of independence. My own independence literally depended on them obtaining theirs. What I want is a solution to an obvious problem that has been ignored for far too long. Not just for my son, but for every mother's son or daughter who literally needs assistance in getting help because they are incapable of seeing that they need it. I mean the part of their brain that provides insight is literally broken. Give it another name like Alzheimer's, Brain Tumor, Huntington's Disease, Parkinson's Disease, Wilson's Disease.... No problem! Help is on the way. Mental illness? Well all of a sudden they have to ask for help. They have to admit they are a danger to themselves and/or others. They have to realize they are sick. Can any of us imagine drawing those same lines in the sand for someone with a brain tumor? I fully acknowledge I have no control. And I totally agree that prayer and love are all I have. But that is not enough. We can't pray away the Anosognosia. It needs treatment. And we should be able to obtain that treatment for anyone with a mental illness, brain injury, or CTE like we would for any other disease. It's so archaic. Are they difficult people? They sure can be. Do they drain our energy? Most certainly. But so do the behaviors of all the previously mentioned diseases. It is infuriating. We are expected to put in the time as a caregiver, but we are refused the tools we need to help them recover. It's just absurd when you think about it. Guess I'm more angry with the system than I realized. Thanks for a place to vent.
     
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  5. completelydrained

    completelydrained New Member


    Thank you for all your kind words. I used to teach alternatives to guardianship so, it's probably helpful for you to know that I fully understand its powers and limitations. It's probably important for you to know also, that it would take an act of congress to even get my son to a psychiatrist for a diagnosis. My husband tried once and he just walked out. He watched his brother's journey with schizophrenia and the last thing he needs is a diagnosis and a pill. His words not mine. He does not have schizophrenia. There is no psychosis. There are also no addictions, thank God! Lucky there! There is a personality change that began after the head injury and has evolved into the symptoms I mentioned in my first post. It's important to me to clarify I hold no blame toward people who work within the mental health system. They can only work within the borders of the laws that currently prevail. It is the laws and the legislators who refuse to change those laws I hold responsible for our current state of affairs. Also, the prevailing ignorance of the worried well who see mental illness as a scourge they must avoid at all costs. The stigma is ridiculous. Thank you again for your prayers and well wishes!
     
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  6. Elsi

    Elsi Active Member

    Drained, welcome. You have had a tough road, and I’m sorry you find yourself here. I hear and share your frustration with the mental health system. I have two completely off the rails and non compliant with any treatment. I find myself torn between wanting to respect their autonomy as adults and wishing I could do something to force them into treatment. Though I don’t know if it would work even if I could. C does have some insight, but is convinced he can handle things on his own. S has NO insight and no desire to change herself or her life. It’s painful to watch. I have no magic answers tonight, but I can tell you I understand where you are coming from. Hugs to you.
     
  7. completelydrained

    completelydrained New Member

    Elsi, Thank you for the welcome. Hugs to you as well! The grieving never ends. We don't even get a chance to say goodbye and we have to live with their ghosts for the rest of our lives.
     
  8. Elsi

    Elsi Active Member

    I haven’t given up entirely. I maintain the connection and hope they will come around in time. I just no longer build my life around that hope.
     
  9. Deni D

    Deni D Member

    I'm in a similar situation as you are drained.
    My son started drinking and drugging, his medication stopped working and he finally stopped taking it altogether last summer (2017). Now he says he never was Bipolar, I just lied to doctors to throw pills down his throat to keep him quite. He also says he is Bipolar and pot is his medication.
    Myself and others are still trying to get through to him but so far no go. Even if/when he decides he needs to go back on medication it will be really difficult. In my area unless he goes into the hospital where they have already proven he will get the wrong medication, there is 4 month wait for the hospital outpatient unit. I have two private pay psychiatrists picked out where I think we can get him into within one or two weeks. They are very expensive, at least I can afford them. Someone else will have to suggest them to him because he thinks I'm the devil incarnate right now. So I wait... and pray...

    The system is nothing but cruel.
     
  10. Tired out

    Tired out Active Member

    Drained, I have no words to help you. I just want you to know I read your post and felt your broken heart. I hope that something good happens for all of you.
    Feel the hugs and thoughts from across the miles and know you have a place to come to talk and people will listen.
     
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  11. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Sadly the main psychiatric facilities in the U.S. since shutting down state hospitals and giving even psychotic people "rights" have become jails and prisons. I saw a scary documentary about this. But there is nowhere else to take the mentally ill who act out in public and need help unless they are actively homicidal or suicidal. If they take them to hospitals just for acting mentally sick with no dangerous ideation, the hospital will just refuse to admit the person. Or the patient will refuse treatment which is their right under The Civil Rights laws. Thus jail. At least they are off the streets and not scaring people and can be watched. Thats sll our country offers.

    Our society needs to take a hard look at this. It is unacceptable.
     
    Last edited: Nov 4, 2018
  12. completelydrained

    completelydrained New Member

    My son who is homeless now believes I convinced my other son he had schizophrenia. It's all so bizarre. He used to be the one who would call me if he suspected his brother was de-compensating or forgot to take his medication. No one cried harder than he did when my son with schizophrenia was diagnosed. He was diagnosed by the most notorious Neuro psychiatric doctor in a tri-county area. We waited 3 weeks for that appointment and he stayed in private care until this doctor passed away a few years ago. It's like he remembers none of it. I have to remind myself constantly they target the ones they know will love them no matter what. So on some level he knows I love him. I hold on to whatever shred of comfort knowing this can provide.
     
  13. completelydrained

    completelydrained New Member

    When all those hospitals shut down, the money was supposed to follow the person into community mental health care. It never did. Prison is no place for any person who is already living minute to minute experiencing the highest level of fear that a human being can experience. Paranoia. There is placement in treatment facilities here after an ER visit determines someone is in need. There are hospitals here that provide their own 30 -90 day psychiatric care on a separate wing. A parent needs to be taken seriously when they say "My son is sick and needs help". They shouldn't have to prove it. Document it. Record it. Video tape it. Go to court over it. How do you prove anosognosia any way? Do we have to prove it for Alzheimers? Dementia patients experience it all the time. It's all so backwards and upside down.
     
  14. completelydrained

    completelydrained New Member

    Thank you Tiredout! I am quite isolated these days as my husband has faced 4 life threatening diagnosis' in the last 4 years. Being his caregiver has limited my ability to socialize and have a life outside of us.
     
  15. Copabanana

    Copabanana Well-Known Member

    Whenever I have had contact with mental health staff through voluntary or involuntary hospitalizations of my son or contact with the police, they ALWAYS favor my son's presentation over my own. I have been a medical professional for 30 years largely in prison. I know how to conduct myself. I am still discredited.

    It does not take a rocket scientist to know that this is about money. If my son was advocating for extended treatment for himself, he would be discredited too. There are mothers on this forum from Canada who have autistic children (little ones). Apparently in the national health care system they will not give out this diagnosis, preferring to label the kids as ODD or Obsessive Compulsive Disorder (OCD) and other ridiculous diagnoses. And these kids never receive the very effective interventions that they require. Why? Because the interventions would cost money. The system prefers to sacrifice the children, the parents and the families.

    I was not down on myself that I was unsuccessful advocating for my son. Because I knew that the deck was stacked against me, before I started. What I felt was helpless and ineffective and frustrated and incredibly sad. Actually defeated. I admire your strength and your tenacity.

    There is a concerted and coordinated strategy, I believe.

    I have seen it at work in other areas, too. For example, voc rehab when they test their applicants seems to skew to assessing IQ's as below normal, or below. Why? because that precludes the applicants from requesting high level and costly education and training, to which they are entitled. My son's IQ has been tested at over 130. He was assessed as below normal by Voc Rehab. Below normal would be an IQ of about 90. This is not error, It is criminal. I have other examples too but I get too upset.

    The key here is organizing.
     
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    Last edited: Nov 5, 2018
  16. Smithmom

    Smithmom Active Member

    Just wanted to add a welcome. My 28 year old is an addict is prison for 10 years. Why? Selling heroin, his drug of choice on the street. Too many convictions for the same thing, the points add up and mandatory sentence puts him away. Treatment in prison doesn't exist. He's in with violent sociopaths as well as every other mental health diagnosis. No treatment. No one cares. Nothing will be different when they get out. Does society care? No. Most of them don't have families who care either. I got a request from a prisoner this week to pass along a message to another prisoner's family asking them to contact prison to find their relative. Severely mentally ill he disappeared "to hospital" a mo ago and no one has seen or heard from him since. It happens.

    I hear you. Systems are severely flawed.
     
  17. Tanya M

    Tanya M Living with an attitude of gratitude Staff Member

    Welcome! I'm so sorry for what you have been dealing with.

    I don't have much to add as I have not really been affected by mental illness. Just wanted you to know I'm thinking about you and hoping things go better for you and your sons.

    I agree that there needs to be better resources and more done for those who suffer mental illness.

    ((HUGS))
     
  18. completelydrained

    completelydrained New Member

    Copabanana, you're speaking my language. It is daunting when you know how and why the system works the way it does. It's sad but true that learning how to work the system is what gets results more often than not. Speaking of IQ's, although diagnosed with dyslexia as a child, my son has an IQ of 137. This too is a huge barrier because he can actually make sense out of so many things that are not real. He can explain so many things away to the point where I start to believe him too. Like ONSTAR on his vehicle. In certain makes and models ONSTAR does still track the vehicle even when the owner no longer subscribes. It just doesn't on his. But just knowing that they do is enough for him to believe they do.
    I have applied and helped many others apply strategies that work. But this time? As I said before, I am totally miffed. There isn't a court in the world that would approve guardianship for him. I"m not big on Guardianship any way. It has its place but not in this situation. The oppositional factor is a formidable enemy to conquer. It is so strong that even when I agree with him I "Don't know what I'm talking about". Being 5 hours north of him with a sick husband doesn't help either. He is also so stuck on telling and retelling the same story with even greater embellishment each time as to why he is in the predicament he is in. Perseveration of thought is embedded like he is re-inventing the story of his life. Every day another person he used to trust is added to the list of people who betrayed him. I have many stories as well. And yes it is too upsetting to dredge them up. Until he became ill, I thought I was finally free. Now I feel like I am starting all over again looking for the needle in the haystack. And I am pretty angry that at the age of 65 life expects me to do this. I need to lay down my sword and just take care of me for a while. But the spiritual warrior within tells me I have more work to do.
     
  19. completelydrained

    completelydrained New Member

    My biggest fear.
     
  20. completelydrained

    completelydrained New Member

    Thank you!