Conservatorship and Mental Illness: When to Let Go?
Nine years ago, I was appointed conservator of estate and person for my son Ben. I remember the court hearing well. Ben was in the middle of his first hospitalization for schizophrenia, refusing medication, and wanted to be released. The only way to keep him in the hospital, if he did not agree to stay voluntarily (and that certainly wasn't happening), was to apply for conservatorship. The hospital would then be legally required to keep Ben there - at least until the court date.
I remember the day well. Expert after expert, delivering the verdict: "Gravely disabled." The words stung each time they were uttered, yet I knew it was true.
Ben tried gamely to defend himself, rallying his energies for a speech that was quite impressive for someone whose inner world was vying for his attention. Still, I got what I needed: the right to make decisions for Ben, to keep him in the hospital, to require that he take medication. The last two rights disappeared as soon as he was released, of course, but conservator status remained in place.
Each year since then, I have had to reapply for this status - and it has always been granted. This year, though, may bring change. I just got a call from a lawyer who has been assigned to get Ben's take on this - and now he is questioning whether he wants me to continue in this role.
I am scared.
What to do? Well, we're re-educating ourselves as to exactly what rights I have in this role and whether Ben can truly function well without my supervision. At the present time, things look great. Ben is taking his meds, is doing extremely well at the moment: part-time college, part-time work, and clean/sober years racking up. But - just eight months ago, he was wandering the halls of the psychiatric unit, once again "gravely disabled." Had I not waved those conservatorship papers in front of the hospital staff, I would not have been invited to participate in Ben's recovery plan - and then where would we - would he - be?
For relatives of those diagnosed with mental illness, this issue of legal rights is very complex. When Ben is doing so well, he doesn't really need me. But - should crisis hit again - what then? Can I get him to sign a basic release of information form now, maybe a power of attorney for times of hospitalization, instead? Will that guarantee me my rights to be on his treatment team? Will he sign these now, while he is reasonable and balanced, in the hopes that I will never have to use them?
What have you done? Have you faced this decision in the past? How have you made sure of your rights to make decisions for your loved one, be allowed to access medical information when necessary, without conservator papers?
Open communication and teamwork between those diagnosed, their families/caregivers, and healthcare providers are essential for better recovery. So - why does it become so hard to be on the team?
Kaye, R. (2012, March 31). Conservatorship and Mental Illness: When to Let Go?, HealthyPlace. Retrieved on 2023, February 3 from https://www.healthyplace.com/blogs/mentalillnessinthefamily/2012/03/conservatorship-and-mental-illness-when-to-let-go
Author: Randye Kaye
I'm confused how do they get hospitalized I was informed if they don't agree to go I can't do anything about it. He needs to be hospitalized and get away from reality but i can't get him there because he knows if he says No then they don't make him. he's out of control now he talks to himself screams and yells at be blames me for his life he makes terrible decision he spending money he doesnt have I'm lost for words and I can't get help. Hes a disabled veteran and can't even get them to help me they just keep sending him back home.
MY ONE AND ONLY CHILD IS SCHIZOPHRENIC IT BREAKS MY HEART
In need of guidance. My brother is 37 years old and is married. He was first diagnosed with Schizophrenia at age 19 while attending his first year of college. At the time my parents were able to seek treatment for him and he was eventually back on his feet and following his treatment plan, which included family counseling. A few years later, he met a girl (who is now his wife) and he spiraled out of control. He became distant with us (parents and siblings), unable to keep up with his personal grooming, was no longer medicated and lost his job. We were unable to visit him, our calls went unanswered and lost contact with him, its was as if he had suddenly shut everything and everyone out of his life; except his wife. I reached out to her, only to be told that he were not welcomed in his life and that she was all he needed. Soon our phone calls and door knocks went unanswered. She accused of being the cause of his illness and only she could make him feel better. We eventually resorted to reaching out to the local authorities (CA) to conduct a welfare check on him, but that was useless. We were told that regardless of his medical condition, he was adult and that as a married man his wife was entitled to decide for him. This battle went on for several months until one day my parents received a call from the hospital, my brother had been admitted and he as requesting to see them. My brother shared with them very disturbing events that had occurred . He described how, she deprived him from his medication and assured him that his condition would fade once he distant himself from us. She used his vulnerability and created a very evil image of us. She fabricated stories accusing us of wanting him medicated because we did not care for him, we didn't understand him that way she did and God had placed her in his life to save him from us. The treating doctor further notified my parents that he appeared in great state of neglect and distress when he was admitted. They also disclosed that my brother had requested his wife not have access to him.
Eventually my brother was released and he stayed with my parents fro a few weeks. He again south treatment and eventually he decided he and his wife would try to work things out. We supported his decision and we all decided to partake; after all his condition was not going anywhere. After a few sessions, the medical staff advised my parents that in order to make progress in this journey my brother and his spouse would need to distant themselves. He classified the case as a severe case of control over an ill person where manipulation had played a major role in his crisis. To this day, I ask if there was anything the doctor could have done to intervene in his behalf.
Today my brother lives in a foreign country. He moved there 8 years ago after his spouse decided it was best for him to be away. Again, left us feeling powerless. These past years our access to him has been limited and most of the time dictated by her.
Two days ago, my family received a call from his spouse. She called to tell my parents "Your son went crazy again and I cant find him". My father flew in, and is there now. He located my brother and took him in to receive medical attention. He was found barefooted, and wondering the street yelling (my heart is crushed).My brother is stable again and was released to my father. Now, she is demanding to have access to him and wants my father to turned him over to her. She contacted me via phone last night and accused us of depriving her from her husband.
We are in urgent need of guidance.......
my son has been incompetent to stand and its almost three years, which is the longest they can hold him.the state hospital is doing a lps conservertorship,now does anyone know if the hospital let him come home, or will they put him in a board and care or will he get to come home.?
my son was incompetent to stand trial and was in the hospital in ca. and they can only hold him for three years , which is up in oct. But in stead of just letting him out to come home the hospital is doing an LPS conservertership on him. Jesse doesn't know consequences and for unknown reasons he says no when they try to get permission for them to talk to me . I visit him and exolain he needs to give his consent but he never has and for only his own personal reasons he also wont come to the phone either so I cant remind him about it. and now I only know about a court date and they are recommending LPS, which they will get .well some people have told me that they will make me the conserator and he will come home but I don't trust the hospital ,Because my son has been short hospital stays about 20 times in the last 12 years ,He has been incompetent to stand trial before and he has also has been a state prisoner in a state hospital, and then as a mentally disordered offender for a total of three years and so I know he doesn't have to be stable to be found competent , he only has to understand who the judge and lawyer are and there roles and assist the public defender ect. well I visit jesse and each time they didn't send him back to court and said he was still incompetent I was shocked because in my opinion he was competent this whole last year, he was actually able to have a conseversation , I can ask him a question and he answers, and when he blurts out something not making sense, hell say oh that was just my imagination or hell say oh I was just joking. He hasn't been able to do this since he was 19.He is a very sweet person , actually not a criminal at all but an uncle who made his life hell and felt crazy people shouldn't live amonst others. but every charge jesses had was from this brothers lies. incredible but true but jesse had constant voices and lost the ability to communicate so he paid the price each time, Anyway I believe jesse may be in long term experimental drug which they don't tell you and I believe they need him longer and will keep him some how even though hes not violent and there has been no incidences to my knowledge of bad behavior. I am thankful for the help but I want him home before he is institutuonlized where he wont be comfortable at home, and who even knows that when hes released they will change his medicine to who knows what, which when he was released from ataskadara he was unable to get the same medications and life went to hell and I feel when they are done with him ,the medication wont be approved yet and they will put him on something else and I will watch him fall apart again, and even if the meduicine is approved for the public we wont know which one because he does not know what he takes and I cant find out, so im scared to death of the outcome of all this and it really is true they are treated like mice , but I know someone has to test it, but what when it working then they take it away, this medicine works but gives him severe side effects, he has odd eye movement and blinks rapidly in spurts as if he cant control it . and I don't know if he is aware of it. its like stuttering with his eyes and then his left arm has a tremor from the elbow down that never stops , very noticeable and I don't know if he is aware of that either . but to me its worth the side effects, and that's another reason I believe its an experimental drug because hes never had side effects before, does anybody have any advice on what I should do to get him home, oh by the way he has never received any government funds ,no SSI , general relief , he will get food stamps which comes with medical, we have just always sup;pled what he needed so everyone knows that I don't want him home to get his ssi check because I have heard of people who let people live with them because they get their check. sorry this is so long, I coulc write a book, its everchanging and ive centered my life around him and his illness because he deserves this, hes fortunate that his voices , five, mostly make him laugh and they preoccupy all his time and he talks and talks and tell them everything he knows, neverending , when he does fight with the voices he locks him self in his room and it will sound like a war going on that will lasts for days and days and I cant go in and he wont come out and he will lose touch wuth all reality and that's why he was 51 50 so many times , because he would literally be fighting for his life in that room , even though it wasn't real for us , to him it is and I just as a [erson cant help him and each time hes hospitalized he would lose a bit of himself until he just didn't communicate with people any more or what he said made no sense, the change is a mericle .jwhat should I do
I have a 26yr old son. He is mentally delayed, & schizophrentic. I do have conservatorship & POA. He is living in a group home, however he is angered quickly which is one of the reasons i put him in the group home His dad recently passed in an accident also, and he breaks things, punces holes in the walls etc..at my house. The group home tries to take him out & do things with him as well but he is starting not to want to do anything and hv outburst with them. Is there anything i can do if the group home makes him leave. I cant have him back home due to he scares me and my other son. We are in TN. Thank you.
My daughter is 38 years old, learning disabled and schizophrenic. She is currently hospitalized for the third time in 9 months. I cannot let her come back home again after this. My health is suffering and she refuses to go to a board and care home. I'm hoping that they will have to place her when released if I don't allow her back at my house because I cannot handle her anymore.
Can someone call me. My sister is schizophrenic and needs help. I don't know what to do. She's homeless and very ill. 619 908 0962
I am having an issue with my mother in the state of Tennessee. I have power of attorney for medical and was placed over her finances by the judge that granted her social security disability five years ago. Since that time I have had several issues with medical facilities and physician's, my power of attorney is not worth the paper it's written on unless she is not conscience. She has also found a facility that helped her get her social security check deposited into an account that I have no access too. So now she spends all of her money within first week of month and I am financially taking care of the rest of the month. She is also taking her medication as she wants, for example any of them that might give her a buzz she is taking all of them within first week or so of getting them, then going the rest of the month without. I have went to anyone who will listen and not getting anywhere. If anyone has any suggestions, I will gladly listen.
I'm in the same situation and in fear daily from fiance mental illness and abuse and damages abuse and drug problem controlling and on no meds. Violent I jump every noise I hear. he's violent in his sleep I've take care of him financially 12 years I'm broke I'm losing it all because manipulation broke me downn scared threats of murder to me everyone.300,000 I have spent in 12 years .he had few jobs got hurt doesn't get out of bed only to smoke and eat throws trash all over doesn't care cuts himself I'm jumpy blood all over I hear that click he's taunting me with it flicking the blade and hangs his 300 lb ass with extension cord over 5 times I hurt myself lifting him up he's a sociopath and alot more has a list of people to kill .no money from him steals lies agitated you never know today is the day he will kill me and himself.I need to file conservatorship to pay debts he's getting inheritance and pi. He's not in his right mind and forgets who's taken care of him meee!
I am so sorry to hear that you are in such a difficult situation. Please visit consider the following places to call if you feel you need support:
National Suicide Prevention Lifeline. You can chat online or call: 1-800-273-TALK (8255)
Crisis Call Center. Call 775-784-8090 or text "ANSWER" to 839863
Crisis Text Line. Text "GO" to 741-741
Your Life Your Voice. Help via phone (800-448-3000), text (VOICE to 20121), chat, and email.
ReachOut.com. Help via phone (1-800-448-3000)
Local Resources include:
MentalHealth.gov's "Local Organizations with Mental Health Expertise." contains a long list of national organizations that may be in your community as well as contact information.
NAMI.org has a helpline (1-800-950-NAMI (6264) or firstname.lastname@example.org). Here, representatives answer questions, direct people to local services, support groups, education programs, help for family members, and more.
I hope you'll find the help you need.
It sounds like you are in a dangerous relationship with no way for it to get better. You are NOT responsible for his disease and you are not guilty if you don't fix him. There are people who can't or refuse to be fixed. He will not work with you. So you are doing all the work. Best advice: leave. Divorce. Save you. You now need to be rescued.
My niece need help her mother has paper for power of attorney but her daughter won't go to Unison to sign papers work hasn't taken medicine since three month her mother had to move her out her apartment she wouldn't paid or clean and was doing strange activities she 40 years old 400 lbs. Unruly the mother is loosing it as well the daughter is Schophorzie and out control can't get help she hear and talking to imagine friends and won't comply with even go sign to be restated for food stamps won't let her mother do nothing she is afraid of her daughter. How can I help my sister in law and my niece. She won't sign go take medicine what we do next have a group home she can go in but won't take until I get power of attorney and back on medication.
BIPOLAR/ MANIC/ ALCOHOL
In the 8 years we have been married. My husband has been in and out of hospitals countless times. from emergencies getting Librium to State Hospitals I am always the one helping him when things get rough.
Hospitals let him out to quick, Today he is being discharge from Mental College Hospitals He has 4 days of Detox
I am not able to control the system, I keep telling please care for him a few more days.
They do not listen HELP
As I read this I cant stop crying. My son Braylen is 21 and I don't know what happened to him. Some say Nervous Breakdown, Drugs intake, psychosis, Mentally illness. Frankly I dont know what to think or believe.....All I know is 4 Months ago he was in school and working......AND NOW HE DOESN'T EAT, BATHE, OR TALK TO ANYONE. HE STARES AT THE STARS AND TALKS TO HIMSELF FOR COUNTLESS HOURS. IN THE LAST 4 MONTHS HE HAS BEEN IN THE HOSPITAL 4 TIMES. MY MOTHERLY LOVE BEGGED FOR HIM TO COME HOME. IN ALL HONESTY THAT WAS THE DUMBEST DECISION I'VE EVER MADE. I'M LOSING MY OWN MIND BECAUSE I'M WATCHING MY SON SELF DESTRUCT RIGHT BEFORE MY EYES AND I DON'T KNOW WHAT TO DO. ANYONE IF YOUR READING THIS PLEASE HELP ME TELL ME ANYTHING I CAN DO. MY LIFE IS ON PAUSE BECAUSE I'M VEXED ON HELPING HIM. MIND YOU HE REFUSES THE MEDICATION BECAUSE HE BELIEVES THE GOVERNMENT IS TRYING TO POISON HIM. SCARED THIS WILL BE HIS FOREVER STATE. WHAT CAN I DO BY THE WAY HE THINKS I'M WORKING WITH THE CIA ON HIM.....I'M JUST LIKE (THROWING MY HANDS UP IN THE AIR). HELP!!!!!!!!!! email@example.com
First of all, 1 in 100 people in the U.S. have "schizophrenia" (it will be finally changed to something similar to "perceptual disorder" or a variant that is almost identical, in about 2 years, thank God— and all of you people who call those with it "schizophrenic": to hell with you defining anyone by a medical condition— try it the next time you meet someone with cancer, see how that flies.
"while Ben is doing so well and tells me he agrees that signing them is a great idea!"
yes! let's manipulate him into being your effective caretaker, when he least needs it, and let you pretend he will be having the autonomy of a 3 year old for the rest of his life, manage all of his finances, so what earnings he does make upon leaving, they'll be managed.
and, when he goes to buy alcohol at the liquor store so he can buy champagne for his new girlfriend, you can check that out by asking the bank for his most recent transactions, and tell him he needs to go to AA meetings, or you'll cut him off from his own disbursements he earned with his own money.
Because if not rewarding him autonomy and allowing him to feel the same control you feel doesn't drive him to say, "what the hell's the point of being self-sufficient and taking my meds if I may as well be the pathologized person you can never get past me seeing? Screw it— Why be self-sufficient if I can't run my own life?"
You're not a doctor. My God, if 1 in 100 people in this country had to take a neuroleptic for the remainder of their adulthood years, that would not be good. Don't condition his disbursements based on what doctor agrees with you, let him have all of his money that he earns, and if you don't give him autonomy and let him live in his own place and enjoy being a human being in control of his future, then you're begging him to reconsider what the payoff is for becoming a self-sufficient and constructive member of society.
We get it. You're not employed. Once you realize the person you hyper-pathologize isn't, and makes more than this book deal ever will, you'll get weird, and that's when you manipulate doctors like me into seeing how "troubled" he is. And all we'll do is tell your son that he should seek an attorney if he thinks someone is being stingy with disbursements, or he's unable to date and have a relationship, because you're not letting him have access to his own funds from work.
I've had a patient that got one to file a motion for revocation for $200, after her step-dad asked for "returning the favor" upon her asking for dispersements for meditation classes + to go out with her boyfriend.
and honestly, a mother controlling a grown man's estate, and a year not sufficing for evidence of his mental competency and recovery? I honestly don't see how you'd be much better. You see him as ill, but he seems fine to me. It sounds like you could either find a job or a hobby, and find a bit of recovery from matters as well.
My sister is 64 years old. She has mental disorder for more than 25 years. Should I want to be my schizophrenic sister’s conservator? Is it better to just leave her alone in the hands of the system as I don’t have a better solution to the problem of making her schizo go away? For 25 years, the conservator assigned by the San Francisco Public Conservator Office has never informed my family of her medical condition, medications, caregiver, or how she is doing. My sister currently resides in a Boarding Care Home in San Francisco. My sisters talks to herself all day long, stares at the wall, and mumbles to herself. Last June 2014, the Administrator from the Boarding Care Home supplied me with medications and allowed my sister to stay with me at my home for 6 weeks. In this timeframe of staying with me, there were days when my sister hugged and kissed me and thanked me, and then on another day, she is in her own world of talking to herself. I have to be honest and admit that I felt so relieved when I took her back to the Boarding Care Home after 6 weeks of staying with me. Is it really time to let go? It hurts so bad.
Thanks a lot mom. For posting my confidential personal struggles online. Great. First off i did not give my two youngest children up for adoption because of a mental illness. I wanted them to grow up in a home where they had a mother and father. Since their father was abusive to me, they would only have me. Plus I wanted them to have the things that i could not have provided alone. I LOST my job a week before i was moving. And had been under a lot of stress. I had a melt down. Since then i allowed my mother to bribe me into taking medication. I regret doing it for so long. I fear the weight gain from the medications are going to harm my physical health. Even worse, I now have no self esteem. I gained 55 pounds. I FEEL better mentally now that i am off the meds. I was a zombie. I refuse to be morbidly obese. I found another job. Note it did take a while. I did not have energy or motivation doped up. I just hope i can lose the weight. It makes me very depressed knowing this summer everyone is going to the lake and swimming in the pool. I refuse to wear a bathing suit. I am now a revolting blob. I weighed less when i was pregnant. Thanks for listening
As conservator for my daughter I don't want to take away my daughters rights--but I do want to be able to force the system to include me as a member of the support team--especially since I am always the one helping her to hold it together when things get rough. The only way to make sure you are included is to remain conservator--. I doubt that an advanced directive will be honored without a return to probate. been there!
Thank you so much Randye! I know you understand the emotions of all that we are going through I am thankful I found your website. We have a 6 yr old little girl that we have to keep safe. I have talked to NAMI about other things but am calling them again.
We will check out their support group because we SURE do need one right now. I will also check out your book.
Thank you again!
How did you find other housing for your son? We are at a crisis point with our bipolar son. He's currently on his 5th hospitalization. We have decided that it isn't in the best interest of rest of our family for him to live at home. He's almost 20. Breaks our heart but he can't manage himself on so many levels. We are also looking at conservatorship. I sent my husband your quote
because it so encouraged me...
"I love my son with all my heart, yet I also know I must set personal limits for my own safety and happiness, and to focus on the rest of my family as well. Please take care of yourself too."
Thanks for any help! Such a hard system to get through.
Yes, a hard system indeed - and that's an understatement.
Each family finds its own way - but many, like ours, had to declare our loved one homeless to get housing. What we did is outlined fully in my book, emotions and all, but basically when Ben was in the hospital for the 5th time I put his stuff in storage and told the discharge committee he had no place to live anymore. Difficult, as you might imagine - and that, to, a vast understatement - but we knew it was the only way. The "system" had to put Ben into transitional living and find his a group home situation. It was the best thing for us all at the time, including Ben.
hang in there - and have you contacted your local or state NAMI yet?
My wife was diagnosed with schizophrenia. She was in the mental ward and she convinced me to become her conservator. I took on the role but now a year later, she's too much to handle. She throws away all her docs, even when I hide them she somehow finds them and throws every important id and document. Her personality had just got to the point that I can't even stand to be in the same room with her. The woman I married is gone and I don't know what to do. I want to have her put back in the hospital and remove my conservatorship, but I feel so bad about it. She loves me, but she's not capable of even keeping 1 peice of paper in a folder without throwing it away and replacing it with a poem about random weirdness. I'm at my wits end and it's causing me to stress to the point I can't handle it anymore. What do I do? Where can I go? Should I just bring her back and wash my hands? She's not willing to help herself how can I help her? It's the worst thing I've ever witnessed and I can't handle the pain of seeing the woman I loved turn into someone I hate.
oh, it is so difficult. Conservator does not have to mean full-time caregiver...that is a choice we make individually, and it is not always the best one. For eight years of my son's recovery, I remained his conservator in that I helped him with finances, was able to share in medical information, etc- but he lived in a supported living situation, with staff there 24/7 to supervise meds, etc. I felt it was better for him to not have to answer to "mommy" all the time, and I was right. For those years I was able to just be his parent, not a policeman. I stepped in when needed, but otherwise let Ben live his (structured) life.
Our current situation (he now lives at home, but this is not meant to be permanent) grew out of a premature reduction in services that resulted in a new episide of psychosis and six-week hospitalization. But - we know he has a life to live, and children are "supposed" to leave home eventually.
For spouses, it is that much more difficult. The person we marry is someone we hope will be a partner for life, not someone we feel we must treat like a child, especially before something like Atzheimer's develops.
It sounds like you are taking on too much - I highly suggest you get support. Have you been to your local NAMI support group? Does the hospital where your wife was a patient have some support for families? Try caregiver support groups - for you are juggling that extreme caregiving as well as conservatorship.
I love my son with all my heart, yet I also know I must set personal limits for my own safety and happiness, and to focus on the rest of my family as well. Please take care of yourself too.
Looking for help/ My daughter(30) is currently at Womens Prison Mental Health Ward in Niantic. She will be there until court date on Monday the 6th. She gets picked up for erratic behavior, stealing, then because she is homeless (1year) she feels she does not have to be accountable and show up for court dates. I spoke to a woman there that suggested I apply for Medical Conservator, but Im sure with what I have read, can not be done by Monday and I know she will fight it. She never signs the consent to release info form so I have been in the dark. Nurse asked about schizophrenia in family. None. Question: Can the courts order help for her, food, meds, housing without me getting Conservatorship to do that? From what I read it takes 30 days and you have to serve papers. If she moves from place to place that is not easy to do. She has done 2 stays at two different hospitals (week long) last year. I really don't know what to do. Thank you
So sorry to hear what you, and your daughter, are going through. I don't know where you live, and laws can vary from state to state, but in our case I applied for conservatorship while my son was in the hospital, via probate court in the town of the hospital. Filing papers took just one visit. Waiting for the hearing took longer...but during that time the hospital was legally required to keep Ben until the hearing. It bought me time. Only after being granted the conservatorship could I apply for right to medicate and right to involuntary commitment. We did it all in the same hearing. Those latter 2 rights expired as soon as Ben was releases, but the conservatorship remains in place with a yearly update.
Check with your state nami or legal counsel to see what your state requires.
Good luck. This is so hard, I know.
Are you aware if there is conservatorship in oklahoma? I've just started NAMI meetings, and wishing they were everyday (lol). I have so many questions and concerns. My daughter is bipolar schizo-affective. It is not under control. She is manic again. Has given my granddaughters up for adoption.(which I know is a blessing in disguise, but doesn't releive the pain associated ) Will not take her meds and will not admit she is ill. I am heartbroken and scared for her. She has lost her job and alienated everyone. I fear she will be homeless, as I agree with my husband that she shouldn't come home unless she receives treatment. We also do not want to monetarily support her if she doesn't take her meds. I feel like this is a horribly cruel choice. And need advice or input from someone...
Oh, the stories we can tell....hang in there and I am glad you found nami. Ask there about conservatorship. I see no reason why it shouldn't exist in your state. Remember, you are not alone. Though is is so heartbreaking, I know. Have you taken family to family? That saved our emotional lives by giving us education and support
My nephew is a paranoid schizophrenic. I have had him committed to a mental hospital but he will not allow any family member to be involved in his treatment. He is out of the hospital now (he's been in-patient MANY times) against his will. Although a social worker comes to give him an injection of medication weekly, it's not working. He's not taking his oral medication, he lives in a scary world of imaginary people trying to harm him. He cannot even discuss anything other than these imaginary people - he drew pictures of them. He recently got very angry at me because he thinks I'm lying to him in saying I don't see these people. He calls them lightbearers, luciferians and something else I can't recall right now. My heart breaks for him daily because he lives such a tortured life. He lies to his doctors, telling them his meds are working fine. I have a multi-page letter detailing the specifics of his delusions and behavior. I send this to every doctor he sees when he goes in-patient because of attempted suicide. I call the police when his behavior is at the point where I think he'll probably kill someone or himself. His father pays his bills and he's on disability. Overall, we don't have the money or resources to handle this in the way I would like to, i.e. conservatorship. I live in LA, and our health care system is not good. Sometimes I get in good with the health care providers and they tell me what's going on with his case. Most times we're left out of the loop until he calls to say he needs a ride home. I am emotionally exhausted, stressed, and most of our family has alienated him because they are scared of him. I feel confident that this will not end well. I think I will eventually see him on the news having killed people. Maybe he'll just kill himself. Sorry not to have given advise, just wanted to vent. Something is wrong with our mental health system that they won't allow well meaning family members at least be involved in treatment. HIPPA overrules common sense in these extreme cases. There is so much pain involved in these cases. There are no winner unless the patient wants to take his/her meds, and that seems to be the prevailing problem. Good luck to you and your son. God Bless.
Oh, Shelly -
Your story is all too common, and one of the reasons we advocate for treatment so strongly. It's clear how much you care for your nephew, and how powerless you feel. With Ben, even my conservatorship doesn't give me the legal right to mandate that he must take his meds.
Yes, there is something truly in need of re-evaluation and repair in our mental health system - in LA, and just about everywhere else. Too many of our untreated (or poorly managed) loved ones wind up homeless, in jail, or - worst - so involved in their voices that they commit crimes (the only time, it seems, that the media pays attention).
There is an organization that supports assisted outpatient treatment - and for stories of success there is an enlightening you-tube video called Making A Difference.
One of the reasons I write about our struggles so honestly in "Ben Behind His Voices" is to show how difficult the current system makes it for family members who genuinely want to help. Yes, our family is (thankfully) in a place of not only hope but promise now (fingers crossed...) - but in the book readers will see I have tried things like bribery, begging, threats, and reason to "convince" my son to take his meds...but what really worked was structure, requirements, supervision - all fueled by understanding his illness better, as well as our love.
Places like Healthy Place and NAMI help family members by providing information and support.
But yes, it is so difficult to sit back and watch our loved ones suffer and decline. God Bless you, too - and your nephew.
always in hope,
My daughter who is 37 has schizoaffective disorder as well as bipolar and OCD tendencies Many hospitalizations She is living with me. Hates living in a residential home. But I cannot handle this anymore. She is always so angry. Not sure what to do
Hi Ritchie -
I know how difficult it can be. Have you looked to NAMI for any resources and support? There are also some excellent resources here at Healthy Place that can offer practical info. Sometime living at home is not ideal - for many years my son was in a residential home, but only because I "made him homeless" -- so painful but it ended up being the best thing at the time. His growth would not have happened, I am convinces, had Ben remained in our home during those years.
Call your local NAMI affiliate, and take a look at books like "Defying Mental Illness" and "When you love someone with a mental Illness" for practical ideas.
and hang in there. You are not alone.
i dont no about schizophrenia and wish i had learned before it was to late.my male companuan had this illness,one mornning he said he was going to kill me with pots and pans isaid his name and he asked me who was i talking to that to take a look at him causr it was not him and it was not him then he tryed to kill me thentook the van and their was a chase and he died in it,no meds
hi Darlene - I am so sorry about what happened to your friend - and to you. One of the important issues in mental illness is the availability of education for those who love them - as you learned, it is so important. Maybe there was nothing you could have done anyway - forcing medication on someone never seems to work, though with education and careful communication skills for family members, sometimes the relationship itself can have a positive effect and create a situation where meds are taken.
As NAMI reminds us, "You can't know what no one has told you." You have grief enough; no need to add guilt to it. But if we all advocate for the earlier detection, better research, more available services and stomping out the stigma that prevents treatment all too often - countless lives can be helped, even saved.
Our experience of having a brother with a dual-diagnosis has been horrible. Its mother's day and my mother has to listen to Yale Psych Hospital and the program in Middletown tell us that they can't hold my brother because he was not showing signs of being a danger to himself.
In their minds, running through the streets, being a confirmed schizophrenic, ingesting drugs and alcohol, sleeping on a park bench without a change of clothes in a neighborhood which is one of the most dangerous in New Haven-its not enough.
The family worked all angles to get the police to pick him up and bring him into Yale for an evaluation, only to be told that he is not yet reached the point of seeming "crazy" enough.
This was their medical opinion without any baseline of medical analysis or examination based on a criteria that would support their argument.
So, it's horrible and the institutions have a major problem when the ill person is Black and poor.
If letting go means that we just leave our brother or son on the streets, then letting go is never an option. This burden should not only fall on the family, but the state that receives federal funds to address mental health issues also has an obligation to do their part to ensure that those in need get the help they deserve.
oh, my. I am so sorry this is happening to you all. I agree, it is shameful. You don't have to be "black and poor" to be told your loved one is "not sick enough", believe me. I remember all too well the months of waiting, watching Ben go downhill with fear and worry, always wondering "is he sick enough now?"
I have been told that there are programs in place in communities where treatment is mandated - and the community saves $1.81 for every dollar spent" Here is a link to one such story:
Laura's Law story
if the link reverts to another, newer story, just put this in the searchbar : laura-s-law
and scroll down to find the correct story.
"Some of the most hard-to-reach mentally ill only get treatment after doing damage to themselves or others. What if there were a way to force them into treatment before then? There is, except hardly anyone is using it."
something more to fight for. yes, indeed, the family has a lot to do...
Thanks for sharing your experiences. Personally, I haven't gotten to the point where my relative is doing well enough to be without the guardian/conservatorship. Of course, he would like to be, but he'd have to petition the court. If your son is well enough to do that and be successful, then perhaps a psychiatric power of attorney would be the way to go. If I understand it correctly, it would only be applicable in a psychiatric emergency. Unfortunately, I haven't come across anyone in my professional career either (I'm a social worker) who has drawn one up.
thanks, Heather - I wonder if such a thing exists? sounds like a good idea. I want to get those signatures if/when this conservator thing comes up again (slow wheels of the court system is buying us time), while Ben is doing so well and tells me he agrees that signing them is a great idea!
My sister suggested I give someone in my family power of attorney over me; however, I spoke to the Connecticut Legal Rights Project and they said that I would not want to give someone in my family that much power. Therefore, I manage my illness on my own. Perhaps someday I will ask my brother to step in but for now I am fine.
so glad to hear that Liz! That is our goal for Ben - we all just want to be sure we are OK in case of emergency. There was one, just eight short months ago. Still - trusting each other makes this easier.