Undiagnosed Adult Sister Hospitalized Again

Family
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My adult older sister with unknown diagnosis and symptoms consistent with schizophrenia was driven to the hospital by my aging father days ago because of an acute psychotic episode. Although she had called him for help, she punched him as he tried to help her and get her into the car to the hospital. When admitted to the ER, she pushed a nurse flat on her back.

Because she is an adult, we have no access to her diagnosis, medication, or names of doctors she has seen. Yet my aging Mom and Dad and I are the ones who have to care for her unless she is going to be left alone. She is unable to be self-aware that she is mentally ill. She is unemployed and has intermittent episodes of psychosis. This episode is the most extreme we have ever seen, and the first to include physical violence.

In addition to mental illness, her personality seems stuck at a younger age. She is stubborn and angry at my parents, and has an outsized fear that they want to lock her up, based on an experience when she was 18 when they put her in a rehab center where she may have been mistreated.

I have her blocked on my phone because I do not feel capable of being the person she calls when she has an episode. I need to live my life and I cannot be pulled down by her emotionally as she has done before if I want to be a successful adult person. But I am racked with guilt constantly.

Because there is no official diagnosis shared with the family, I am made to feel like I am making it up that she has schizophrenia. My Dad continually tries to point to an organic disorder such as epilepsy or head trauma because he associates schizophrenia, medication, and institutionalization with the human rights infractions of the 1950’s era of insane asylums. My Mom is confused and believes whoever she is talking to at the moment. We are lost arguing with one another over diagnosis. A diagnosis from a healthcare provider would help the family’s mental stability so much.

My sister is obviously an unreliable narrator, but reports that she has been on Prozac only, which is obviously insufficient to treat her psychosis. Whatever psychiatrist or PCP prescribed that Prozac to her either misdiagnosed her or does not know her full medical history.

Questions: How is it possible that her existing doctor did not know of her previous hospitalizations and psychosis to the point that he/she prescribed her Prozac only? This leads me to believe that there may not be a good enough mechanism in place that her doctor will be notified of the current hospitalization and continue to believe that she does not have issues with psychosis, or may be a patient with schizophrenia.

This makes me feel that we are further from having an official diagnosis with treatment plan.

I am now worried about the physical violence that has recently presented. Are my parents in danger if they continue to try and help her? If I choose to speak to my sister again as the disease progresses, could I be in danger? What are her outpatient options beyond relying on my aging parents? And if she never accepts a diagnosis or treatment plan because she is unable to due to her mental illness, is it inevitable that her disease will progress and worsen? Are there any instances in which a schizophrenic person is able to self-recognize their mental illness on their own terms and seek help?

Guidance from a medical professional would be valuable, but HIPAA laws prevent this.

My Dad thinks he can save her, but he can’t without hurting himself. I know I can’t save her, but I hope that a diagnosis and treatment plan can be reached. Is that a vain hope, given that as family members, we will never be notified of a diagnosis unless she choses to share it with us?

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Welcome to the forum @bex . Very sorry for your painful situation. You’ve come to a good place with fellow caregivers that can provide some good thoughts and resources.

A couple of thoughts:

  1. Yes. Your parents are in danger. As long as she refuses treatment or finding the right meds, she is likely to have more episodes. Violence against self or close family is an unfortunate reality.

  2. Medical care is not well coordinated. So there is a high chance that current providers will get insufficient, incomplete and inaccurate info. They are primarily focused on stabilizing a manic patient. Not necessarily as focused on history, root causes, future. Find a better provider who specializes in SZ, Bi polar, etc.

  3. When (if?) your sister is in a good place, have her give you medical power of attorney or somehow confer rights on you to receive info on her care. Position it with her that you need this ability to ensure she isn’t taken against her will and that someone in the family can help her.

  4. Let this group know which state you’re in and perhaps they’ll have good resources to share.

And keep the faith. Love wins.

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Thank you for your reply, Sando. I haven’t checked back until now because it remains a lot for me to even deal with this question, but I realized that having a place online where I can talk about things is important, since speaking about this issue with people in my life is complicated.

  1. I will try to warn my parents that they may be in danger, but doubt they will listen to me. I will try, though.
  2. This is such an unfortunate reality about the mental health system that I have very very slowly realized, very painfully. I think one thing I can do is to try and keep a paper trail of names of her doctors and medications she has taken, and dates of hospitalizations. Maybe I can coordinate somewhat with my Mom on this part, since she takes notes. As far as finding a SZ specialist, I feel entirely helpless to find any resources to offer. I feel I have no ground to stand on since I do not interact with my sister for my own safety. My Dad expressed optimism about the therapist she has been assigned in the psych ward, since she is a young woman. I will try to get her name so I can call her when my sister has another episode in the future.
  3. This is a good idea in theory to get medical power of attorney or the like. I don’t feel ready yet, because I am looking out for my own safety by not being involved directly in her life. When she has her manic/psychotic episodes, I don’t want her to hallucinate that I am “against” her somehow. I don’t want her to know where I live. But it’s really hard because I want to support my parents who are very invested. I do want a diagnosis and treatment plan that she can stick to, that we can all be on board with.
  4. Thank you for inviting me to this group, I will keep sharing how I am doing, and hope to chat with others.

Since I wrote the above post, my sister was moved from the ER to the psychiatric ward, where she has been for almost one week now. She has been given the antipsychotic Geodone, and is being monitored to see if it works.

It sounds like she is gradually coming down from the psychotic episode. When she learned that she had pushed a nurse, she felt bad and wanted to apologize, which is a sign of coming back to a more sane place, for now. I’m sure the Geodone will work to keep the psychosis in check, but the larger issue is whether she will adhere to the treatment plan when she is discharged. Or share her diagnosis with the family.

She has a psychotherapist and a psychiatrist in the psych ward who she is speaking to regularly. When I asked my Dad if there was an outpatient program, he said, she can go back to the hospital and keep seeing the therapist and psychiatrist after she leaves the hospital. Unclear information. And unlikely that she will stick to treatment when she leaves.

I’ll call my Mom soon to get her side of the story. Thank you again for reading.

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Hi Bex;
I do not know what state your sister is in but you may want to look into conservatorship (if your sister refuses Meds) In California it is called LPS Conservatorship. My brothers have schizophrenia and I have recently learned how I can try to break the cycle of Jail/hospitalization and release. It is not easy but I feel like I now have something to try. Take care of your parents and be there for your sister and always take care of your self

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This isn’t strictly true, there are ethical issues with giving you general guidance outside the doctor/patient relationship, but they can give you general information on how to help someone with her condition. They just can’t give you patient specific information due to HIPAA.

Getting a POA is a decent idea, I have a POA, Medical POA and Mental Health POA for my wife. It IS a ton of responsibility though, and it doesn’t seem like you really want to take that on with her, I can see you want boundaries and that’s likely the most healthy way for you to approach this.

You said she’s undiagnosed, how long has this been going on for? You said your father still considers an organic reason for her symptoms. He could possibly be right. Originally I thought my wife had schizophrenia, but after very extensive testing, it turns out she had autoimmune encephalitis, and it mimics all the symptoms and many doctors just assumed she was schizophrenic and wrote her off. I’m not saying your sister is in a similar situation, but it’s always possible.

Once she is discharged from the hospital she might not be able to continue with the same therapist she’s working with in the hospital, so that’s just something to keep in mind. Continuity after discharge is important, but is often neglected by hospital staff.

I’ve found talking about things helpful as well, so I’m glad you’re feeling better since sharing. Support for you is super important, so I’m happy you reached out.

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I’m sorry to say that my sister took her own life one year after this hospitalization. I am sharing not to bring others down or to deplete hope, but hopefully to bring more honesty and urgency around the devastation of this illness. And the extremely urgent need for more understanding, research, treatment, resources, and conversation about schizophrenia.

I’m so sad and trying to deal with the grief. It’s been such a hard road to be sisters with someone with this illness. I love her and it’s so hard to even reduce her memory to this illness only, which is not all she is or was.

She was intelligent beyond her own capacity. A literary scholar and a polyglot. An actress and a musician. Imaginative beyond what this world could contain.

I want to call attention to this illness with the reality that it is a fatal illness. So is cancer, and cancer receives funding, research, and serious medical recognition. The family members of a patient with cancer don’t have to re-convince each new caregiver or treatment facility of the diagnosis. But with schizophrenia we have to re-explain the diagnosis because it simply is not named in too many cases. You can’t fund and research something which is not named; you can’t find a cure for something that is not named. We need to name it and talk about it as family members in the same way that we would talk about a family member with cancer. Separate the person from the illness. Fund and research treatment for this illness.

I was unable to help her as a sister. My parents were unable to help her because of all the reasons listed in my previous posts. And although as a sister I could have found resources and treatment for her which could have worked or helped, my parents were too much in denial to accept my help or advice. I had no doctors or medical community backing me up or helping my family to understand or get on the same page with a clear diagnosis and treatment plan. Because of this we could never get on the same page as a family. And yet the treatment and care for schizophrenia falls on the family.

I lost my sister. I should have tried harder but there was also maybe nothing I could have done. I wish I had been able to connect with her just a little bit more. I wish I hadn’t been so scared to reach out to her, but I also made what decision I could at the time. I didn’t have enough resources. It was draining to pursue the resources I was able to find. It felt hopeless to seek them out knowing she wouldn’t accept them, and knowing that my parents would not agree with each other or with me about the right thing to do. Maybe I just should have talked to her on occasion. And made sure to keep good boundaries with her. I should have found a therapist who supported me in that.

I should have opened like this to the therapist: I need to keep better boundaries with my sister. She is unpredictable and I’m scared of her, but I want to help her. Can you help me to learn to keep better boundaries with her? I want to be able to talk to her once every couple of months by choice, not being caught off guard.

But therapists would get lost when I said the word “schizophrenia.” They never knew what it really meant. They never told me it was a fatal illness. They never told me that we still need to find a cure for it, and that as a medical community, we are honestly lost on that front.

They never said, we are in over our heads. We haven’t found a cure yet for this illness. We don’t even understand it. That would have been more honest. That would have given me an honest place to start to try and help my sister.

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bex, I am so sorry you have lost your sister. Your story is tragic and sadly familiar to the long term members of this forum. We all feel your frustration and regret for not being able to get your parents on the same page as yourself. Maybe, maybe, that would have made a difference in the outcome. Sadly, even with everyone on board and a diagnosis in hand, things might have turned out the same or worse.

My NAMI Family to Family class was taught by 3 instructors. One had a son with autism, the other two had sons with schizophrenia. Both of the sons with schizophrenia had died within a few years of the class. Both families had a diagnosis, their sons had been on antipsychotics for several years and both families had a tremendous amount of support and knowledge.

As you are saying, schizophrenia can be a fatal illness for so many reasons. Suicide, serious health issues that go unrealized, psychotic episodes that end in death, inability to maintain a known medical condition such as diabetes and the support people around them forgetting (or not realizing) that our heavily medicated family members are physically fragile in many ways.

We need to talk about schizophrenia more with people who don’t have family members with schizophrenia.

Ahhh cancer, yes. Now that I am spending a good deal of time on a cancer caregiver forum, I have noticed that they lose many people, cancer and schizophrenia have this in common.

So far, there hasn’t been any loss of life on the cancer forum from “collateral damage”. A woman who attended the same Family to Family class as we did, she and her husband were both killed with a sledge hammer by their unmedicated son.

You would think that the collateral deaths would get us more funding and attention. People would freak out if cancer suddenly killed the people trying to help the person with cancer.

Your first responsibility was to keep yourself safe. Take care, hope

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Oh, I am so sorry to learn of your sister’s passing. You obviously loved your sister and did the best with what you knew. Unfortunately, your story is all too common. Your story actually needs to be told in order to change our systems that are lacking. This is why I volunteer with NAMI, National Alliance on Mental Illness. In addition to providing support and education, NAMI is very involved (as are other mental health organizations) with advocacy efforts to change this trajectory for so many people and their families. I encourage you to sign up for advocacy alerts that NAMI sends out from time to time by email relative to current legislature. Those provide an opportunity to contact your state and federal legislators when there are relevant laws for mental health that are being considered. This won’t give life back to your sister but you can use her story to make a difference for others.
Advocacy | NAMI: National Alliance on Mental Illness

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