Family and Caregiver Schizophrenia Discussion Forum

New to the group - my wife was diagnosed 20 years ago

I am new to this group. My wife has schizophrenia, having been diagnosed for about 20 years. We have been married for about 25 years. It has been a very up and down experience. Now we are doing well, but last year she had a really bad episode. And in previous years, we have experienced suicide attempts, one time ending up in a coma for a few days.

My main frustration is that with regard to the caregiver getting information when the spouse is having a bad episode, that the system is very broken. Last year I felt I had to obtain guardianship of my wife. It was both difficult and expensive. I do think the medical profession should be allowed a certain latitude to speak with caregivers if the patient is obviously delusional, and unless the medical professionals feel that the caregiver is abusive. It was very frustrating to call in-patient care and be told that they could neither confirm nor deny whether my wife was admitted.

I am very grateful for modern medicines. I know they have a lot of horrible side effects, but otherwise my wife would have to be permanently institutionalized.

I would say that the one thing that has kept me going is my Christian faith, and lots of prayer.

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Great that you are here! I’m glad to hear about your faith. My Mom suffers from what you’re wife struggles. I can relate a lot and understand.

My Dad has been married for 35 years now, I’d say my Dad keeps a distance but has been taking care of my mom through a care giver.

Here for you

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Welcome, @stephen!

I have found this to be so true… especially when we were trying to find ways to pay for my daughter’s first hospital stay in February… we were rejected for patient financial assistance several times but we refused to be treated like a number and kept pushing through the system saying we wanted to treated like a person… Finally they decided to review our appeal one more time and we were accepted. and when there were medicine shortages for her haldol… it took a lot of searching to find a good source.

I agree with this so much!

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Stephen,

I agree with you the system is VERY VERY broken. My sister was diagnosed with schizophrenia 44 years ago. She is in an assisted living facility. The registered nurse that owns the facility took my sister to sign papers removing me as my sister’s medical power of attorney. I found out about this later. The RN also has told my sister’s different doctors that she is my sister’s power of attorney and for them not to tell me anything. She is not my sister’s power of attorney. Even before this happened no one could tell me anything unless my sister signed papers that information could be released to me. Every once in awhile someone will go ahead and talk to me. Mentally ill have rights, yes, but there are certain circumstances when those rights should be overruled. When you got guardianship over your wife how did you do it without her being able to oppose you? Someone told me that my sister could stand before a judge and oppose me and the judge would probably side with my sister. They said I would then be out all the money it took to try to get guardianship.

I have gotten to the point where I just want to give up and forget all about my sister. But I know if the shoe was on the other foot she would fight for me. God bless you. I don’t pray so much anymore as I tell God it’s all in his hands and I know he will make it work out the way he wants it to.

Agree the lack of indigo the nearest relative is like top secret! I know exact how you feel, going through same thing with my sister.
Maybe you could be her power of attorney?

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I was fortunate in that at the psychiatrist wrote a letter to the lawyer representing me at that time stating very clearly that my wife was unable to look after herself. Also, at that time, the local family judge was very compassionate and helpful. Finally, while my wife was very angry with me at that time, she also loves me a lot, and she decided not to fight me. But even if she had fought me, I think I would have easily obtained the guardianship.

We have this strange connection, where she will trust me beyond trusting others. Many years ago, after one of her really bad episodes, she felt that she should leave me. After she got out of hospital, we went to a scrapbook store, and we found a scrap book which had maps of the town where I used to live. She believed this was a sign from God that she should stay with me.

While I am a Christian, I don’t think it is smart to go about looking for “signs” like this. But my thinking is that God knew that my wife looking for these kinds of signs, and knowing the state of her mind, made it so that she would see this and take it as a sign. So I definitely believe God was looking out for us. I do think actively praying to God is extremely helpful. You don’t have to physically get on your knees or be formal or anything - you can do it all in your mind as you go about your life. But my experience is that God definitely listens and answers.

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Stephen,

Unfortunately I am not the one my sister trusts anymore. She is the oldest of the four of us and she took care of us when we were kids while our single mother worked. As we got older my mother pitted us against each other instead of making sure we stayed close. Two boys and two girls and my mom made sure none of us got along as we got older. My sister has always had extreme hallucinations about me. I called up one of her old adult day cares one day and the lady that ran the place was surprised to hear from me because she thought I was dead. That is what my sister had told her. My sister never did go for listening to me very much because she is the older sister and she was the caregiver when we were kids. The registered nurse that owns the assisted living facility where my sister stays has her brainwashed and has turned her against me even more. I have a voice recording on my phone where my sister was leaving me a message and the RN in the background is clearly heard telling my sister that I am ruining my sister’s life. She took my sister behind my back and had her sign papers removing me as my sister’s medical power of attorney. And she has now told doctors to not give me any information about my sister. This RN intimidates my sister into doing what she wants my sister to do. And my sister is fighting me every step of the way. This lady would be the one driving my sister to court if it all ended up there. I am having no luck here in San Antonio finding someone to roll up their sleeves and join me in what needs to be done. The rest of the family quit having anything to do with my sister a long time ago. They would say don’t bring her to weddings and don’t take her to that. No one seems the least bit interested in helping me with this situation and I just want to give up now. I’m super depressed and I have some serious medical issues going on. I’m at the doctor every time I turn around and I’m exhausted. My sister is saying exactly what this RN tells her to say and I can’t stand up against both of them trying to do it all myself. I just tell God it’s in his hands now. I don’t even know what to pray anymore other than to just say help Jesus please.

I’m really sorry for what you are going through. I’ll pray for you.

Thank you. I really appreciate that.

Judges are very cautious in granting guardianships. What should be most important to the judge’s decision is whether or not you have provided evidence that your loved one cannot take care of herself. How is she getting along in assisted living? Who is managing her affairs?

A few years ago one of the staff at the assisted living facility told me my sister had been out of needles for two or three days. She is diabetic and she has to inject insulin at least once a day. I reported the registered nurse who owns the place to Adult Protective Services then. There had been numerous problems before that and the RN never wanted to discuss them. Since then the registered nurse has been telling my sister that I am ruining my sister’s life. I have it recorded on my phone from a call my sister made to me. You can hear the RN in the background saying that. The RN has now taken my sister behind my back to change paperwork discontinuing me from being My Sister’s medical power of attorney. The RN actually signed the paperwork as one of the two witnesses. She has my sister giving her blank signed checks for rent monthly and my sister doesn’t know how much the rent is because the RN fills in the check. She started changing my sister’s doctors Etc even when I was still medical power of attorney and she wasn’t letting me know. She stopped taking my sister to her kidney specialist that she had been seeing for several years. She has a doctor see my sister now that comes by and sees all the residents that live there. He is a specialist in Hyperbaric Medicine & emergency medicine. He has placed my sister on hospice. When I call my sister’s doctors they all tell me they cannot talk to me anymore. The RN had my sister remove me as someone they can give information to. One girl at the kidney specialist office did talk to me though. My sister has been stage 3 kidney disease for many years. He doesn’t put people on hospice until Stage 5. But this doctor the RN chose to see the residents has my sister on hospice. I found out a month later this had happened when a hospice social worker called me. She has now been removed from the case for talking to me. The RN basically is totally controlling my sister and she intimidates her. My sister used to talk to me about things that happened over there but then she would tell me the rn “chewed me out” for telling me anything. The RN has now said I cannot call or come by to see my sister over there. She did this to another family member of another Resident that was dying there. She finally called the family member a day before the resident died telling her she should come by to see her family member there before the lady died. I don’t know what to do anymore. This RN is unethical, and retaliates obsessively against anyone that has a complaint. Doesn’t matter if you report her to anyone or not. She retaliates endlessly. The sad part is she has three private homes she owns and operates and she’s making a very good living at this. Some of the staff that used to work for her used to tell me that the RN was paranoid. Maybe she’s schizophrenic also? Who knows? I don’t know if it will do any good to report her to the Texas Board of Nursing. They tend to protect each other a lot. I have end-stage liver disease. I was diagnosed with it in 2011. I regularly see a specialist and take medication for portal hypertension. I’m still working. I’m exhausted all the time but I keep going. I don’t know if a judge would give me guardianship or not. And since my sister is in Assisted Living I’d have to get exactly the right judge to give me guardianship because she is “being taken care of”. I cannot handle this anymore. I just cannot do this anymore.

These kind of things have to be happening all over the place in different assisted living facilities Etc. It cannot be just happening to me. What is scary is that as the schizophrenic population gets older and many family members become incapacitated or pass away and cannot care for them anymore these types of things are going to be happening more and more. I believe that is why the RN does this. She has many elderly people that live there and don’t have family anymore. I think she’s been used to being in total power for a long long time and she will try to use it against anyone to her own benefit.

Your sister’s situation with the RN is appalling. It seems to me the RN and her facility should be reported. You have a lot of evidence although some of it might be considered heresay except for the things for which you have first-hand knowledge. However, as much as you desire to help and have a relationship with your sister, what will it accomplish if you are able to get a guardianship? Is there anyone else you would trust to be your sister’s guardian? You might want to talk to an attorney. Regardless, I think the RN should be reported and her deviant management exposed.

The RN and her facility have been reported by several people. Adult Protective Services in San Antonio has done nothing. The man from there in charge of the area including San Antonio and surrounding counties basically does little to nothing. When my sister was at a different assisted living facility several years ago she fell and broke her hip. The owner of that place waited 2 hours to drive her to the hospital and then called me and told me my sister was at the hospital. The Adult Protective Service investigator asked me how did I know my sister was in pain if I wasn’t there after I told him my sister was in pain all that time until the owner drove her to the hospital. He’s the same one that went to investigate the RN who owns the facility where my sister lives now. He did nothing. I have talked to an attorney. She specializes in elderly issues. She wasn’t a lot of help. She said they could go to the home and check on my sister. Well for a couple of years now my sister has been telling people exactly what the RN tells her to say. The social worker from the hospice told me when she spoke to my sister my sister kept repeating the same sentence over and over and would not talk to her about anything else. The social worker said my sister sounded rehearsed. I told her my sister is rehearsed by the RN. I’m not sure an attorney walking in the place to talk to my sister would accomplish anything. They have nine residents that live there and two to three staff who are related to the RN. People in my family quit having anything to do with my sister decades ago. They were even telling us not to bring her to family weddings Etc. There is no one else that could be her legal guardian. In San Antonio it really seems like no one cares about anyone schizophrenic or their family members. I go to Nami meetings as often as possible but they don’t know what to tell me. They don’t seem to have answers either.

I realize this is quite a challenging situation and I’m so sorry. Glad you are going to NAMI support group. Sometimes that is all we can do is to take care of ourselves when we cannot fix the situation. But I’m still thinking about this. Can you go visit your sister? Will she see you? If you are able to talk with her, rather than try to convince her that she is being taken advantage of by the facility, perhaps she will come round if you just gain her trust over time…bring her a yummy treat or something she values. I’m thinking of the LEAP strategy (Listen, Empathize, Agree, Partner). It can be used for many situations besides just to get someone to be med-compliant.