My daughter has been diagnosed with Schizophrenia Disorganized. Has anyone ever heard of this? I have been doing a lot of research. She has never believed that money is tangible unless it is in the form of cash, which resulted in a lot of credit card debt and fraud. She is has been in trouble with the law for years over this issue and nothing has helped so far. I have had people tell me she needs to just go to jail and learn. But that has already happened in the past and she has not learned. She has been denied disability. What can I do to help?
@dkgreg My son was also diagnosed with Disorganized Schizophrenia at the age of 21…it is a difficult condition for sure. One of the main symptoms my son had was poverty of speech, and when he spoke it came out in what was referred to as a “word salad” almost impossible to make heads or tails of it. Often times he would become almost catatonic…the doctor said his brain could not process incoming information correctly and therefore he could not compile any correct outgoing information like his speech…but his thoughts were equally disorganized and chaotic. Many false beliefs. This was in addition to the many other symptoms like paranoia, voices, hallucinations. I am sorry you and your daughter have to deal with this but I hope if you read through some of my posts here on this forum, you can see that over the years my son and I have made it a long way from where we were…and things are much better for him and for me, today, he is 32 now and after trying many different drugs in the beginning, he has been on clozapine successfully for about 8 years now and although it took a long while (almost a year to see the full benefits of the medication and this medication requires monthly blood draws to monitor white blood cell counts…it has given my son a new lease on life in that he can speak very well and function well with basic living on a daily basis…I did get disability within the first year but I found that I needed to hire a social security attorney to do the footwork for me, the courts will always deny you at first it is actually a stalling tactic that they will never admit to to delay your process because they are so back logged with cases…take your denial letter to a social security attorney --they work on a contingency basis which means they get no money unless they recover for you and even then it is only a small percentage of what they call “the retro pay” or what would have been owed from the time of documented diagnosis or time that the patient was unable to work until the time of application. It also requires good documentation from the attending psychiatrist, or any hospital stays and also your own input on the application forms etc…the more you use the words, “persistent” “debilitating” and “chronic” the more weight your words hold. <—I got this straight from a Soc Sec employee. Also I got legal guardianship because without it the HIPPA laws will interfere with you talking to and interacting with doctors and hospitals on your daughter’s behalf when she is unstable which makes getting her the right help almost impossible…for that you have to contact your local county probate court to find out what they require from you for that and best to do it when your daughter is at a low point because having the judge see her at a low point will insure you get the guardianship and because this illness can take years to reach optimum stability and it can be a roller coaster ride as well as a labor of love…you can’t really afford to be out of the loop at anytime during the process of your daughter’s treatment. It is a real hands on affair. For my son he does best living with me…it also makes it easier for me to manage things like his finances and appointments and also see first hand what symptoms are present or absent so I can help ensure he reports his symptoms correctly to his psychiatrist…under reporting is very common with schizophrenics. The doctor needs all of the facts.
Anyway I am rambling and I apologize for that…you are the first person I have read here that has had the exact diagnosis my son has had…I have dealt with this for well over a dozen years…it is believed his onset was about 15 or so but he was not officially diagnosed until 21 ----anyway…as I said he is much better today…there is a huge learning curve with this illness and I learned the most from taking the free Family to Family class offered by NAMI (The National Advocacy for the Mentally Ill) I advise taking that if you can. It is a real eye opener. Anyway feel free to ask whatever you like, I don’t have all of the answers but what I do have is experience as a full time caretaker of my son with this diagnosis. Best of luck to you and your daughter. http://www.nami.org/
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Thanks so much for so much info on this Catherine. When she was first diagnosed with Schizophrenia Disorganized, I was totally confused. My daughter was only four when she kept coming to me and saying she saw a man with a cape in her room almost every night. I was so concerned and told some of her doctors, but they of course dismissed it with her being a child and having imaginary friends. I never dismissed it as being that, but could not get her any help. When she was ten, she had her first psychotic breakdown and was in a mental hospital for a few weeks and then again at 11. Diagnosis, severe depression with psychotic features. I really thought that was just a catch all diagnosis and didn’t trust that diagnosis. She kept having problems for several years and had many different diagnosis. She also got in trouble with the law for shoplifting and stealing other things. I took her to the best psychiatrist and therapist I could find and afford for years. Once she was 18, more problems. She is 31 now and just about 2 years ago she went to a psychiatrist and said she could not live like this anymore, the voices and hallucinations were out of control (I did not find out about this until about six months ago). All sorts of evaluations took place and even another psychiatrist who was an expert in Schizophrenia and sub types was called in and that’s where the Schizophrenia Disorganized diagnoses was made. I was confused because my daughter is so bright, made excellent grade in school in advanced classes, has never had problems with her speech and is an excellent writer. I was told not all people with this condition have speech or learning problems, but her thought processes were very disorganized. No one would ever thing she had any problems if they met and spoke with her. She told her family she had a great, well paying job for about the last five years and we believed her. She really seems on the outside to be making massive improvement. In secret she was accumulating massive credit card debt. When things finally began not to make sense anymore, that’s when I became detective and found out she was also using my credit and completely destroyed it. She stole my IRA’s and 401K. She was denied disability and now a lawyer is helping on that. She is in trouble with the law again. Even my family wants me to prosecute her for all the credit card and other theft. I do not want to prosecute, I want her in a psychiatric hospital, but supposedly the only way that will happen is if the judge deems that necessary. The doctor thinks that is due to the disorganized thought processes. Her doctor set her up with Schizophrenia forum that can only be accessed by being a patient, talking to other patients. She let me read some of her blogs, not the other’s due to the confidentiality of those patients. In her blog she talks about money is not real, she has never been able to keep a checking account due to overdrafts, can’t use a debit card for the same reason because checks and plastic are not really money. Online shopping is not really spending money, the only tangible form of money is cash, no other way of spending is real. She (or we) have a court date coming up and I won’t tell the family because they will either want to be there or pressure me to prosecute when they only thing I will beg the judge to do is get her inpatient help. Please pray for us, or if you don’t believe in that, keep your fingers crossed. I thought when my husband left me ten years ago, that would be the hardest part of my life. It is not.
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@dkgreg Thank you so much for sharing your story. I appreciate it so much. Makes me feel less alone. I was thinking about what you said about the spending and money delusions, I wonder if it is possible she may be somewhat schizo-affective…which can include the disorganized schizophrenia and features like bi polar tendencies as well because one of the key features of bi polar disorder is extreme problems with handling money, over spending and magic thinking…like if you have a credit card then money is always magically there…also grandiose thinking like telling you she is okay for almost 5 years and making you believe it. I agree that as a parent I would not prosecute. I would however gain legal guardianship (you will not be held responsible for past legal problems) but her legal problems will go a long way to getting you a win in court and once you get legal guardianship they will make you her rep payee for any Social Security or SSI or other earnings she acquires and she will have virtually no say so where the money is concerned…you can say where she lives and what bills she can afford and then you will pay what she needs, she will lose the right to decide because she has proven a chronic inability to manage her own money…like my son, before he was diagnosed he worked some menial jobs off and on …nothing lasted more than a week or two, but he would get a check and buy something to eat for a meal …like a big mac or something, a pack of cigarettes maybe a dime bag because he used back then and then if a girl asked him for money for whatever he would literally empty his pockets for her and walk away and not think of it again, when asked where did his check go after 1 day he would say he didn’t know. I handle all of his finances and economically and for monitoring purposes it made more sense that he lived with me…I too live on disability for physical health issues and I am a single mom…so it is just he and I. He was not happy in the beginning that he got no money, but I provided what he needed. Now after so many years of stability, I allow him a prepaid card with maybe $10-$20 bucks for a month which he uses for small things like taco bell or starbuck’s or something like that. He is happy with that. It has made his life much lower stress which equals more stability in the long run. I am so sorry that you have so much on your plate now to consider with your daughter…but as one mom to another you have to take the bull by the horns and be the rational thinker that your daughter is not…it is a tall order, and if you feel you absolutely can’t do it then get a court appointed guardian for her…they won’t approach her with the love and compassion a mother would but they would be bound to approve only rational spending and they would have to guide her away from potential legal issues in the future just as you would. There options, once she gets her own income and someone has her guardianship she needs a simple uncomplicated life with the right medicine and then slowly —very slowly you will begin to see your daughter return to stability…but it takes time and someone else taking control over her out of control life…regardless if it makes her angry initially she will be grateful when she is doing better down the line…you also can get her a home health aide to assist her in daily living and a case manager that can take some of the stress of of you with paperwork , appointments and other needs your daughter has…Take a deep breath and make a list of what you want to do or what you feel you can do to help your daughter…make the calls --gather information and proceed. You have to do what you feel you can do and delegate whatever you cannot do…my heart, my prayers and my very best hopes and wishes are with you every day…write anytime. When you go to court tell them what kind of plans you decide on as far as guardianship, etc…and also your desire for her to be formally evaluated in a hospital and prescribed medication…most judges will support parent intervention and it will help to bring a letter from her psychiatrist with the diagnosis or a letter of expert evaluation…Hugs***** (PS: If you are in the states and you get SS or SSI for your daughter she should also get Medicaid (as long as Trump leaves it alone, and that will cover all of her doctor visits and medicines, hospitalizations and in home care-it is a true blessing)
Hello Catherine,
Thanks so much for all the info and support you have given. You are the first to give me so much good info I did not know about. Does it cost much to file for guardianship. Just asking because of the theft issues and I don’t really have a dime now. Just hoping I’m able to pay my utilities at this point. I did scrape and scrape to get the money just to hire an attorney due to the fact I did not trust a civil defender to have her best interest at heart. Got a lot of bad feedback from family after doing so and “wasting money you don’t have.” Peace, love and good wishes coming your way.
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dkgreg,
We just filed for guardianship of my son, who is 20. Find an attorney that is experienced with guardianship/conservatorship. It can be expensive. $1500-3500…and more if they fight it. It requires a paid third party (often a social worker), in our case - another psych eval, etc. We filed for both guardianship and conservatorship so we could manage his financial/legal affairs and received it on a temporary basis, and have a hearing in March for permanent guardianship. It was not difficult to get temporary, as my son has quite a disrupted past and we have been able to document this for a judge. It did not require his presence for that. He is going to fight permanent guardianship, but it is likely that he will not be able to change the course of action because he is severely mentally ill, non-compliant with medication, etc. Wishing you all the best in your continued journey with your loved one.
@dkgreg I am guessing that it can be different costs in different part of the country (I am in Ohio). For me it cost very little, I think there was a filing fee of some sort but I also know that many fees were waived because of my very low income status, and the the fees for the court appointed atty that my son was assigned were also waived because he was considered indigent and unemployed. If you question them about possible waived fees and let them know your income status and the gravity of your family dynamics you may be able to cut the costs much lower…also you might want to check into any possible legal aide services in your area which are also income based so often free. This is a time when you will need to ignore the naysayers and follow your heart and in many cases you will find yourself relying on the kindnesses of strangers. Peace and love to you and your daughter.