Family and Caregiver Schizophrenia Discussion Forum

How can this be happening?

#1

My sister is 66 years old and has been schizophrenic since her early twenties. She is now living in an assisted living facility where she has been since 2014. The RN/owner stopped communicating with me almost from the very beginning. When I would pick my sister up to go somewhere and she would tell me something that had happened there at the facility I would contact the owner to question it. I then started receiving phone calls from my sister telling me not to call the owner about anything that happened over there because the owner was chewing her out because she had said something to me. Those were my sister’s exact words. That she was being chewed out. The RN discontinued my sister’s medicine for schizophrenia for 5 months and then lied about it and said she had been calling the pharmacy but they were not delivering it. She sent me a lot of papers by certified mail and she actually contradicts herself on these papers which include lists of Medicines my sister takes. The RN actually put on one of the medication lists that she had discontinued the medication and then she signed and dated it at the bottom. She took my sister behind my back to sign papers that I am no longer her medical power of attorney. When I call the doctors offices now to ask anything about my sister I am told they cannot talk to me. I used to be the one that took my sister to all her appointments. This RN got my sister placed on hospice in March. I found out about it in April when a social worker from the hospice called to talk to me. I was able to talk to one lady at my sister’s kidney doctors office who told me my sister is stage 3 kidney disease and the doctor does not put people on hospice until they are Stage 5. I found out the name of the doctor from the hospice social worker that put my sister on hospice. He is a doctor from a group of doctors that does home visits and he sees everyone that lives in the assisted living facility. He is a Dr Shirani here in San Antonio. He specializes in emergency medicine, Aerospace medicine and a couple of other things that have nothing to do with kidney disease. I gave his name to my sister’s kidney doctor that she has seen for years and her kidney doctor was supposed to contact this group doctor. I used to take my sister to do her banking and to run errands. She never wanted to get checks because of fear of them being stolen. The RN helped her get checks and my sister now gives the RN blank checks signed and the RN fills out whatever amount she wants. Myself and another family member of a different resident there posted negative reviews about the place online. We both have been threatened with lawsuits by the RN and she had an attorney send me a certified letter demanding I remove the negative reviews from online and never speak about her or her place ever again or she would take me to court. She also threatened the site the reviews are posted on. I recently reported her to the Federal Trade Commission because it is legal to write a negative review about a company and their services and she has no right to be demanding the reviews be removed from the site or to be threatening lawsuits. They must have contacted her because I got a voice message from my sister yesterday telling me not to call to talk to her anymore or come by to see her at this assisted living facility in San Antonio. This RN did this to the other family member that wrote negative reviews about her online. This other family member had a sister that was dying in the facility and when the RN found out she had posted a negative review on the BBB website she was told she could not come by to see her sister at the facility. They finally called her a couple of days before her sister died and told her she should come by to see her sister. I have contacted Adult Protective Services. They did nothing. I have voice messages saved on my phone where you can clearly hear staff there in the background telling my sister what to say. I don’t know what to do anymore. I feel like my sister’s been kidnapped but I know exactly where she’s at. It’s like she’s being brainwashed. I can’t afford to get a lawyer and try to become a legal guardian over my sister. She can stand in court someone told me and tell a judge she wants to stay at this assisted living facility and the judge would accept what she says and leave her there. And with her being intimidated by this RN over every little thing she’s going to stand there in the courtroom and tell a judge exactly what the RN rehearsed with her what to say. The social worker from the hospice went by The Adult Day Care my sister attends to talk to her about putting me down as her medical power of attorney again. The social worker told me my sister would not even talk about it and just kept repeating how much she likes it at the assisted living facility. The social worker said my sister sounded rehearsed. I asked her you mean like a Stepford Wife? And the social worker kind of laughed and said yes. I lost my sister to the schizophrenia and now I’ve lost her again to a crooked RN. I actually feel like taking every pill I have and going to sleep and never waking up. I can’t do that but that is what I feel like. My daughter is a social worker in Austin and she was attacked by a refugee in 2016 who was trying to stab her in the eye with a screwdriver and then held her captive in his apartment for 2 hours during a home visit she made. This guy is trying to get a new trial. If it was not for my daughter I would choose not to be around anymore. How can this RN keep doing stuff like this and getting away with it?

#2

My heart is breaking as I read your story. Poor little lady! It almost sounds like she is being abused, definitely mentally, and possibly physically as well. Your sister is scared.

This is what I mean about some of the assisted living facilities, you never know what kind of place it’s going to be. May I ask how long she has been there? Where was she prior to this facility? What are your thoughts on your sister possibly living with you? Or near you in a small apt so you can care for her? Is there anyone else that could help care for her? Perhaps you already tried having her live with you and it didn’t work out, and if that is the case, I apologize.

My son is 24, but what you’re describing could happen to him or any one of our loved ones, long after the caretakers are gone. It’s so sad and scary and incomprehensible.

This place sounds as corrupt as they come, and it turns my stomach. My mom was a nurse in a senior living facility. The stories she used to tell us, it was horrific what some of the nurses tried to do, and did, and got away with. Mostly just neglect and lack of empathy. Sometimes abuse.

It sounds to me like you’ve tried every avenue that you could think of. Yet you now need to be extra careful because what you do or say will have repercussions against your poor sister. Tragic situation to be in, I’m so sorry.

I wish I could offer a suggestion or an idea, but I’m not sure what else can be done, with the exception of getting her out of there. I also wonder if they are taking care of her properly, nutritionally and hygiene wise. So many things to consider so it doesn’t backfire on your sister.

I will be praying for her and you.

#3

My sister has lived with me on several occasions. She has also lived in several assisted living facilities. The one she was in prior to this one she’s in now did not understand schizophrenia. That was bad enough but she ended up falling there and breaking her hip. I got a phone call from the owner leaving me a voice message that my sister was hurt and she had taken her to the emergency room. When I got to the emergency room I found out it had been 2 hours from the time the owner told me my sister had fallen until she actually arrived at the ER. The owner had gotten her up off the floor and had her sit at the table and eat breakfast and then drove her to the emergency room in the owners own personal car. Adult Protective Services told me my sister got Medical Care in a timely manner. When I told him my sister was in pain all that time he asked me how did I know she was in pain if I wasn’t there. She went to rehab after the hospital and I had to look for another place for her to move in. She is on Medicaid and the only place in San Antonio that accepted the kind of Medicaid she had was this one assisted living facility. She has lived with me but I had to set rules for her to follow and she didn’t like that. She has a problem with wetting herself no matter where she’s at. It can be a Adult Day Care or it can be while she’s in bed. While staying with me she would get up several times throughout the night and drink coffee and then go back to bed. There was constantly urine and wet bedding to clean everyday. She also is a chain smoker and she was going out in the middle of the night on the back patio to smoke. One morning I got up on a sliding glass door was open. I don’t live in the greatest of neighborhoods. There were also several times when I did hear her go out and I went to check the door after she went back to bed that I found parts of cigarettes still burning on the back patio next to the house. She is my older sister and she used to take care of the rest of us kids when we were little. She wants no part in the roles being reversed now. It’s the same guy from Adult Protective Services that has investigated the last three places she has lived at. And he found nothing wrong according to him. I don’t know if he’s being paid off or what. My sister moved in there where she is now in 2014. The RN has been systematically taking over my sister’s affairs since she moved in there. I contacted the local Nami office here in San Antonio and I’ve gone to some of their support meetings when I didn’t have to work. They don’t know what to do. There is a meeting this coming Tuesday that Nami is sponsoring. They’re going to have a speaker from Whitehead Law Group who practice elder law. I’m going to the meeting to see if they have any suggestions as to what I can do next. At this point in time I really need to get court appointed guardianship over her but I don’t know if that’s possible. Everyone in the family has nothing to do with my sister because of her schizophrenia. The only person that helps as much as she can is my daughter but she lives in Austin. And she’s still trying to heal from being attacked. I keep telling God it’s all in his hands. Thank you for your kind words. I hope you have a relaxing and wonderful Mother’s Day.

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#4

Thank you for the Mother’s Day wish, same to you. It’s just not the same for me on holidays anymore, just sad looking @ my son and missing my mom.

I hope a less heartbreaking solution can be found for your sister. It’s so heartbreaking that she is being dominated and victimized when she is clearly at a disadvantage. And I hope your daughter is beginning to heal from her trauma.

#5

Posting negative reviews and trying someone in the court of social media will not help your case. You need to seek legal assistance in removing the RN as POA. And the sooner the better for your sisters case.

#6

The RN is not my sister’s power of attorney. But she is acting like she is. I don’t even know anymore when my sister has a doctor’s appointment, what meds have been continued or discontinued, and I even found out my sister had been in the hospital for a day and a half when I received the bill for the ambulance in my mail. The RN quickly changed my sister’s mailing address from my house to the assisted living facility after that. If the other resident’s sister had gone through what I have and posted her review online before it happened to me I would have never moved my sister in there. She evidently didn’t read the online reviews before moving her loved one in there. There have been several posted online since then to warn people about the RN and the way the place is run including by some of the people that used to work there. Reviews are good things whether positive or negative. My only option to pay legal fees and fight this in court is to sell my house. I am a CNA and I have an end-stage disease. I am still able to work at this time. Selling my house and having no place to live is not going to help the situation any. I have been told that if I did get my sister in a courtroom in front of a judge that he would probably side with her if she said she wanted to stay at this assisted living facility. The RN would be the one driving her to court. She has been so intimidated by this RN for so long now she is going to say what the RN has told her to say. So that would leave me with a slowly progressing disease and no home and no way to continue paying for my insurance and for all the procedures that I have to get done every time I turn around. I stay in touch with Nami here in San Antonio for support. They don’t know what I can do. They have not heard of anything like this happening before. The mental health unit of the police department cannot do anything because mentally ill people have legal rights. It does not seem to matter if someone is feeding them their lines as to what they’re supposed to say to people. It all boils down to what actually comes out of the mentally ill person’s mouth. The people that run these private places make a very good living off of mentally ill, physically handicapped, elderly, and young people that are vulnerable. There need to be laws put into place that keep these owners in line. I would hope that many years on down the line there are procedures and laws to protect these most vulnerable people as their parents and elderly caregivers become incapacitated or die.

#7

I also belong to a support group for dementia support as I am a caregiver for mom who has Alzheimer dementia. Yes the primary dx is mental illness but you have a cross over issue of elder abuse. As you are getting little assistance from the mental health angle, I would contact the local area on aging and an elder law attorney.

As much as I hate to say it there is a marginalization of mentally ill but mention elder abuse and people all over it. Hope you get some assistance from that angle.

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#8

I had not thought about the elder abuse angle. It’s been the schizophrenic angle for over 40 years. Thank you for pointing that out to me. There is a Nami meeting Tuesday where someone from a lawyer’s office that deals with elder law will be the speaker. I’m going to that meeting. I’m hoping and praying they can help out in some way. God bless you and your mother. I do home health and my case right now is with a lady that has dementia. I know it’s extremely difficult to say the least to be the caregiver. I at least can go home at the end of a 12 hour shift. You don’t get to do that. You deal with it twenty-four hours a day.

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#9

This sounds horrible- I am so sorry for you. Call the state nursing board and report this RN. If she has a license, they will look into allegations of abuse and neglect. That kind of behavior is unacceptable from an adult family home. If she has no active license, she has no business running the home.

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#10

That is my next step. I’m getting things together now to send to the Board of Nursing of Texas. I always thought that when I reported her to the Board of Nursing that she would then try to tell me I could not come by to see my sister there. But she didn’t wait that long. She did this to a family member of another Resident there. That lady’s sister was close to dying and the RN read a negative review that the family member had put on the BBB website. When BBB contacted the RN she told the family member they could not come by to see their dying sister. The dying lady’s sister was finally called the day before the resident died and told she should come see her because she was going to die at any time. The RN has been in business over 20 years and she has three private homes with people in them. I cannot say that I’m okay with hearing that she has done this to another family but I’m glad I know because there is power in numbers.

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#11

WOW! What a horrendous story! I am praying you are able to get her out from the spell that horrible RN has your sister under! You poor thing, I am horrified at what you are going through. Stay strong. Yes, your daughter needs you and your sister still needs you. You do have an uphill battle but stay strong. Even if you can do nothing except PRAY for her, you need to be ALIVE to pray for her. God is the Hearer of Prayer (Psalm 65:2) and he counts ALL your tears, he KNOWS your misery! (Psalm 56:8) Cast all your anxiety on Him because He cares for you (1 Peter 5:7) …I know it’s hard to feel that God is even paying attention to what you’re going through, but He IS. Draw close to Him, and He will draw close to you. (James 4:8) …THIS is THE ONLY WAY I have been able to cope with my son’s schizophrenia ! I am praying for all in this forum!

“Be strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you.” (Deuteronomy 31:6)

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#12

Thank you so much for your prayers. I keep telling God it’s all in His hands. I know He will take care of things in His time not mine. I’m stuck with an unending disbelief that every time I think it’s gotten as bad as it can the RN does something else to keep making it worse. I went to the Nami meeting last Tuesday where they had a speaker from a law firm that represents elderly and mentally ill people. It was very disappointing. She only had a little over 1 hour to speak and answer questions. And she spent a good 15 minutes at least cracking jokes. At the end of the time she had, a mother with a schizophrenic son wanted to ask her one last question. The speaker told her she was out of time. The speaker had told this mother and me during the meeting to meet her afterwards on an individual basis and she would give us further advice. At the end of the meeting she was walking back and forth talking to different people that had invited her to be the speaker and this mother and me had to walk after her to see what else she had to say. It was all very disorganized. She asked me if I had called Adult Protective Services. I told her I had and that they had done nothing and the case was closed. She had handed out forms during the meeting that we can fill out. This form is called “Suggestion of Need for Guardian or Need for Investigation of Circumstances under 1102.001 Texas Estates Code.” This then is supposed to be turned in to the Bexar County Probate Court after being filled out. The speaker told us at the meeting she had been out to investigate the circumstances of a schizophrenic patient at home with the family who was being violent. She told us when she got to the home the schizophrenic patient was on their best behavior while she was there. When she left the family was asking her what they were supposed to do then because she had not seen what was really going on. I told her that’s what would happen if they go by to see my sister at the assisted living facility. She is going to say exactly what the RN has been telling her to say for several years now. I don’t think it would go anywhere. The next thing I’m going to do is report the RN to the Texas Board of Nursing. I don’t know what that will do. I really think it has to be more than just me complaining about her. She needs to be shut down. When the hospice social worker went by Adult Day Care to ask my sister if she would list me again as her medical power of attorney the social worker said my sister would not even talk about it. The social worker said my sister just kept saying “I’m happy where I’m at I’m happy where I’m at I’m happy where I’m at”. The social worker said it sounded rehearsed. I told her yes it has been for several years. The thing is the RN was going to kick my sister out several years back and sent me a certified letter telling me I had 30 days to move my sister out. My sister wets herself a lot and was wetting her bed nightly at the assisted living facility even though she wore diapers. She was also wetting herself at The Adult Day Care and she urinated in the seat of the van a couple of times that picks them up to take them to daycare. When the RN found out I had reported her to APS she decided she was not going to kick my sister out after all. That’s when all this started with her changing doctors, pharmacies, and companies that deliver supplies behind my back and not letting me know. That’s what she does when families try to talk to her about something or complain about anything. She seeks revenge in a huge and unending way. She doesn’t change anything as far as what families have concerns about to begin with. I have thought about going to the Press also as a last resort. I really don’t want to do that for my sister’s sake and the other residents there. It is all in God’s hands. I just don’t want to sit back and do nothing and have this RN call me 2 days before my sister dies there and tell me I should come see her. That is what she did to the sister of another Resident there that was dying.

#13

I also wanted to tell you a little bit about the mother with the schizophrenic son that was at the meeting. Her son is of adult legal age. She does not know where he is other than he’s down in the valley of Texas somewhere. He went with some people that told him his father is down there. Well yes his father it’s buried in Corpus Christi. His mother has been trying to get guardianship over him for 9 years. She has been able to find out that his Social Security disability Etc are being used by the people he is with. She only found this out because some woman went to the Social Security Office in the valley on three separate occasions because the check had not come yet. It took the office three times to catch on that this was a woman coming in and not the ladie’s son to ask about the check. She said she has been told by the police that if they find him dead or alive they will let her know. But she was told they will not let her know where her son was found. She thinks he might be being used as a mule to move drugs between Mexico and the United States. The mother was in line to talk to the speaker at the Nami meeting as I was leaving. I do not know if the attorney had any useful advice for her. I just walked up and gave her a big hug before I left. Hopefully I will see her at the next meeting. Mentally ill people have legal rights yes but there has got to be a much better way things can be done in certain circumstances. There’s just way too much unnecessary heartache going on for families. I know a lot of families don’t care and have turned their backs on loved ones who are mentally ill. But what about us families that do still care?

#14

I don’t know where you are but a lot of the CSUs here in Jacksonville, FL have their funding distributed thru Lutheran Social Services so you might see who in the county where your sister is oversees their receipt of funding for that assisted living facility. Another thing I’d do is to contact AHCA and see if they have a liaison for the facility. The kicker here might be that they’d try to discharge your sister or move her to another facility so its a battle either way. Oh, and if you have her name, see if the RN is licensed - its usually online - or if she’s a “go fer”. Best of luck with your sister.

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#15

PS - If a person is incapable of making decisions on their own, how could your sister have decided to remove you from the medical power of attorney? That part doesn’t make sense from her perspective unless they had her sign something without her knowing what it was. I’d call my State Representative and see if they have any contacts.

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#16

What a hellish situation!
I hope you can report her
if you can accuse her first it is better or if she has a way of punishing you more she could accuse you and she might be seen as the victim in the eyes of the first instance of the law

The police can be one sided like that for a long time
my sister has got help from the courts now but her accuser was seen as the victim
now her forced probation seems to help but i have no idea what this RN is capable of in your case

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#17

Sounds like you need to have this facility investigated…explain the situation and that your sister is not mentally capable of making these decisions and you need to get power of attorney. Good luck

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#18

@Powerhouse I honestly think you have some mental illness too. I’ve been reading these posts for a while. Let your sister live in peace, if she wanted to be moved she can do that. Seems like you want to move her around a lot and sz patients don’t like that

Think about the friends she has there, or the activities she does. A home is more than the RN

I’m glad, as someone with sz, that I have the choice to live where I want

You actually want to take that away with your political rhetoric

#19

Moonwalker,

So you think I should leave my sister there where the RN that owns the place stopped giving her medication for hallucinations for 5 months and lied about it to several people when she was caught? Where my sister cannot open her mouth to express any concerns she has about anything because she says this RN chews her out? Those are my sister’s exact words, that “Ms Wilma chews me out”. Where my sister never wanted to have checks because she feared someone would steal them? Where the RN intimidated my sister into getting checks and my sister does not even know how much her rent is monthly now because she is giving the RN blank checks every month to fill out the amount the RN wants to fill them out for? Where the RN now has my sister thinking she is dying because the RN found some doctor who specializes in Hyperbaric medicine to come to the facility to see all the residents and he placed my sister on hospice? The kidney specialist my sister has gone to for several years now says my sister is stage 3 kidney disease and he does not put anyone on hospice until they are Stage 5. The RN cancelled the last appointment with the kidney specialist. She told him she was power of attorney and that my sister did not want to see any doctors anymore. She never asked my sister if she wanted to continue seeing the kidney specialist or not. Turns out the RN is not power of attorney but she’s been telling everyone she is. Leave my sister in a place where another Resident there was very close to death and the RN would not let her family come in to see her until a couple of days before she died? Where the RN is telling me not to ever call or come by to see my sister at the facility ever again? Leave my sister there? I don’t think so. I’m glad you can still make decisions for yourself. My sister used to be able to do that. My sister knows very little now about her own health other than what the RN tells her. And she is not anywhere near death as far as her kidney disease is concerned. She is the same stage that she has been for many years now. But since hospice care involves the hospice supplying all items needed such as soap, shampoo, diapers, wet wipes, waterproof pads for the bed etc etc the RN no longer has to buy supplies for my sister out-of-the-money she pays herself from the blank checks my sister is giving her each month. My sister is going through the five mental stages of dying as written about by Elisabeth Kubler-Ross. And she’s not dying. There is no end to how cruel that is.

#20

Your sister is not incapacitated, she can make you in charge of her medical care at any time.

Has she asked for help in moving to another home?