Undiagnosed Adult Sister Hospitalized Again

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?

3 Likes

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.

4 Likes

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.

2 Likes

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

1 Like

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.

1 Like