Family and Caregiver Schizophrenia Discussion Forum

Stuck in Fight or Flight

My sister is 66. Diagnosed with schizophrenia in her early twenties right before she should have graduated college. Years and years and years of this. She has been living in assisted living facilities the last 15 years or so. You cannot find a facility in San Antonio that understands what schizophrenia is. As she gets older she also has medical conditions now like kidney disease, diabetes, and falling breaking her hip a few years ago. There have been numerous problems with almost all of the facilities she has lived in. I have reported some of these facilities to Adult Protective Services. The same investigator investigates each time and does nothing. At one place when my sister fell and broke her hip the lady that owned the place waited 2 hours to take my sister to the hospital in the lady’s own personal car. Investigator found nothing wrong. My sister is in another place now. An RN owns and runs the place. She purposefully stopped giving my sister her medication for hallucinations for 5 months and lied to me about it. She did not tell me when my sister had to be hospitalized for her blood sugar being way off. I found out when the ambulance bill arrived in my mail. On April 10th a social worker from a hospice called me and informed me this RN had my sister placed on hospice back in March. My sister’s kidney doctor that she has seen for years said my sister is stage 3 and he puts people on hospice at Stage 5. This RN found a different doctor to put my sister on hospice and my sister’s kidney doctor did not know until I told him. Over the past few years anytime I brought up concerns with this RN about my sister’s care Etc she was having my sister call me and tell me not to call about things. I have a recorded voicemail on my phone from my sister and she’s saying please don’t call about things and my sister States the RN is chewing her out when I try to find anything out. I wrote some negative reviews online and I received a certified letter from an attorney telling me if I said anything else to anyone about her assisted living facility or her care of my sister that I would be taken to court. This RN told me she would get my house and my bank account. I was my sister’s medical power of attorney beginning in 2009. This RN took my sister to an ombudsman’s office and talked my sister into signing papers ending my medical power of attorney 2 years ago. The RN is threatening to take me, other residents family members, and the websites that the negative reviews were posted on to court. I am going to report her to the Federal Trade Commission. They protect the rights of people that write negative reviews and can penalize companies trying to shut people up that write negative reviews.

I just want to give up. I’ve been trying to talk my sister into moving out for a few years now. She doesn’t like change and has been refusing. This RN turning my sister against me is a nightmare. I myself was diagnosed with end-stage liver disease and portal hypertension in 2011. I’m checked every 6 months for liver cancer and I’m remaining stable on medication. I’m still able to work but I’m exhausted all the time. Add to that everything going on with my sister and the rest of the family not wanting anything to do with her except for my daughter who helps out, and I feel like I’m drowning. I feel like I’m right below the surface of the water and no matter how hard I try I cannot make it above water to breathe. I don’t know what to do anymore. I’ve been blocked out of my sister’s life. This RN told my sister that I’m ruining my sister’s life. I also have that voice message recorded on my phone from when my sister called me and the RN is telling my sister this in the background.

I am stuck in fight or flight all the time, every minute of every day, everyday of every week. I know if she was well that my sister would do all of this for me. I think. I need prayer. Lots of it. I need God’s favor involving all of this. Thank you.

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That sounds terrible and im sorry your going through this terrible ordeal , i think you should get some legal advise as this RN sounds crazy , you should also talk with Nami for advise .

@Powerhouse does the nursing home have an actual licensed social worker ? Verify their licenses. Have you reported this RN to the nursing licensing board in your state ? She has no business convincing a resident in her facility with a schizophrenia diagnosis to change her medical POA. This is totally outside the ethical boundaries of her licensure as a nurse. Document every single thing you have done so far including when and to whom you have reported. The Ombudsmen doesn’t have the authority to do an APS investigation however they are the first to come out regarding patient rights and ethical treatment. Don’t stop trying to get your sister help because they don’t have the right to threaten you with lawsuits to avoid being reported.

I have reported this RN to Adult Protective Services when she stopped giving my sister the schizophrenic medication. Adult Protective Services has basically done nothing. That is when the RN had the attorney send me the certified letter to cease and desist writing any reviews or speaking to anyone about her or her facility. And in the attorney’s letter he told me to remove the negative reviews I had posted. I just recently found out about the Federal Trade Commission protection for people who write negative reviews and how it is illegal for this RN to be threatening me. I did not know that President Obama had signed that into law. I’m going to send them copies of the negative reviews from online from different people and the RN’s responses threatening people who wrote the reviews, including threatening the sites the reviews were posted on. The websites are places you can call that help you find a place for an aging parent Etc. The RN owns and operates where my sister stays which is 9 beds in a house. She is licensed to do this. She also has a second house two doors down from my sister that has residents there. And she owns her own personal home where she lives with a value of over $500,000 on 2 Acres and she keeps the higher-paying residents there. So she has three houses total. Since Adult Protective Service has not been any help, I am getting things together to report her to the Texas Board of Nursing. I do want to contact the Federal Trade Commission first. She has taken my sister to the kidney specialist my sister has seen for years. They now have me removed from the list of people they can give my sister’s information to. They do still have me on record as medical power of attorney though even though it’s old paperwork now. So I could get a couple of ladies to talk to me. The kidney specialist has my sister listed as stage 3 kidney disease and he does not put anyone on hospice until they are Stage 5. I gave them the name of the other doctor that the RN took my sister to see that placed her on hospice. They are supposed to contact this other doctor. Online this other doctor is listed specializing in emergency medicine, Aerospace medicine, and undersea and Hyperbaric medicine. The ombudsman’s office where the RN took my sister to remove me as medical power of attorney is the ombudsman for the facility. I had first contacted her to check up on my sister when Adult Protective Services did nothing. After I was removed as medical power of attorney the ombudsman argued with me that the RN or my sister’s doctor could be her medical power of attorney. She was extremely rude and hung up on me. I have been in contact since April 10th with a social worker at the hospice that my sister is now on. She is the one that told me my sister got put on hospice a month ago. She is sympathetic but the hospice doesn’t know what to do about all of it. She sent me a text yesterday suggesting wouldn’t it be nice if everybody could get along for your sister’s sake? I reminded her to look at the papers I sent her including from the lawyer. It states if I have anything to say to the RN or any questions about my sister I am supposed to contact the lawyer to pass the message on to the RN. The RN cut off all communication with myself and my daughter, who was the backup medical power of attorney even before she took my sister to remove us. The hospice social worker is going to go by my sister’s Adult Day Care to talk to her about putting me back as medical power of attorney. With the RN having my sister call my daughter and me to not ask any questions and the recording I have of my sister saying Wilma chews her out when we ask anything, I seriously doubt my sister will want to put me back as medical power of attorney. I told the social worker to see if my sister would agree to my daughter being the main medical power of attorney. And I just now received a text from the social worker. She said my sister declined putting my daughter as medical power of attorney. I just got the text. The social worker said my sister said no and did not want to discuss anything any further. I’m sure my sister is fearful that Wilma will chew her out. It’s not like even if we were listed medical power of attorney again that Wilma would begin communicating with us again. I have spoken to Nami locally here in San Antonio. I have gone to some support meetings. They don’t seem to be able to come up with a solution. I have talked to the police department here who has a special Department that deals with situations with mentally ill people. They cannot remove my sister from the facility against her will. I could go to court which I really cannot afford unless I sell my house to finance it. I could try to get a judge to give me legal guardianship over my sister. I looked into this a long time ago and my understanding is even though my sister is mentally ill she could stand there in the courtroom and tell the judge she doesn’t want to move from there and she has the legal right to do that. With the several years that Wilma has been brainwashing my sister, and that’s what I call it, and I’m sure Wilma would be there in the courtroom, my sister is not going to agree to move out of there. Another family member of another Resident there wrote a negative review after mine and she put it on the Better Business Bureau site. Wilma responded on the Better Business Bureau site with this long, drawn out bizarre response slamming this family member. The family member’s sister was on hospice at the facility and was very close to dying. When Wilma found out about the negative review on BBB she refused to let the sister come into the home to see her dying sister. The day before the sister passed away, they contacted the family member and told her she should come see her sister. I wish there was a way Nami could help me present all this to a judge to try to get legal guardianship over my sister. I don’t know what to do anymore. This is a nightmare that doesn’t go away.

Karen

Being ill with sz is tough, handling stress is hard and often times people rely on routine to get them thru the day. If your sister enjoys it where she is then it may be best to just let her remain. Maybe she has friends, maybe she likes the activities maybe she likes the environment. There are a lot of factors involved besides just whether a handful of medical decisions were correct or not.

Furthermore, instead of calling I’d go see. Your sister in person. See her body language when she answers your questions about leaving, talk to her privately. I feel that there is more to this story besides you and the RN

There is way more involved then just a few medical decisions that were made by the RN. She is trying to cut off all contact between my sister and me. She purposely took my sister off her medicine for hallucinations and I saw my sister deteriorating because of this. She did not let me know when my sister was admitted to the hospital because of low blood sugar due to diabetes. And she has found some doctor to put my sister on hospice for end-stage renal disease when my sister’s regular kidney doctor has my sister listed at stage 3 and does not put people on hospice until they are Stage 5. She has my sister giving her blank checks each month for my sister’s rent and wants my sister to give up control of her own bank account to this woman. I see my sister in person. Staff there has been told by this RN to supervise my visits with my sister in order to hear if I say anything about this woman or her facility. She had a lawyer send me a certified letter that if I say anything she will take me to court and she told me she would get my house and my bank account. Since doing this to me this woman has also threatened another resident’s family member with a lawsuit, and she has also threatened the website the negative reviews were posted on. She threatens anyone with lawsuits that has any criticism of her. The other resident’s family member was not allowed into the assisted living facility to visit her dying sister because this RN did not like the negative review written about her by that family member. There are no activities there. The RN’s sisters work there also but over the years there have been many other people that have worked there. The people that have worked there did not understand what hallucinations are and were constantly scolding my sister for what they believed was a bad attitude. They did not understand she was acting the way she did because she was actively hallucinating and she was scared. I tried educating many of them without the help of the RN. She made no effort to train them as to what was happening with my sister. She purposefully discontinued my sister’s medication for schizophrenia and then lied about it for almost 5 months. It is illegal for the RN to be threatening legal action against people who gave her negative reviews. This has been reported to the Federal Trade Commission who are responsible for overseeing that people have the right to post a negative review and that people like this RN don’t get away with threatening people to shut them up. This is way more of a situation then just the RN and myself. She is unethical, she misrepresents herself and her facility as having two RNs, LVNs and CNAs working there. She is the only RN and she doesn’t even stay in the house with the residents. There are no LVNs or CNAs. And there is definitely no reason why she should not be contacting me when my sister is sick enough to be taken to the hospital. I refuse to sit back and let this RN not let me in to see my sister under any circumstances like she did the other resident’s family member and she is trying very hard to totally cut me out of the picture. She should not be acting as my sister’s medical power of attorney and not communicating with myself or my daughter.

Visit or call your sister

Sometimes after many years of taking meds drs will try to reduce doses to zero to see if the person is in remission without the drugs

I can’t weigh in on this one, but having low blood sugar at times is part of diabetics

This sounds like a positive, more care earlier in seems beneficial to me

This sounds like paranoia

I’ll stop commenting here so this post doesn’t go on too long. I wish the best for your sister. I think you are working yourself up too much about this and need to sit back and just enjoy the time you spend with your sister, esp if she’s happy where she is. You said adult protective services checked it out.