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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.

friends in field
When to Let Go and Stop "Helping"?

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 provider is essential for better recovery. So – why does it become so hard to be on the team?

34 thoughts on “Conservatorship and Mental Illness: When to Let Go?”

  1. 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.

    1. 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.

  2. Randye,

    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.

    1. 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!

  3. 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.

    1. 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…

  4. 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

    1. 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.
      In sympathy,
      Randye

  5. 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

    1. 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.
      Randye

  6. 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.

    1. 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,
      Randye

  7. 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…

    1. 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

  8. 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

    1. Hi Kathy,
      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.
      Randye

  9. 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.

    1. @csheckler,
      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.
      Randye

  10. Randye,
    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.”
    Randye
    Thanks for any help! Such a hard system to get through.

    1. Hi Shelley,
      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?
      Randye

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