Please Help me!


#2

Hello @DFL88 and welcome to the forum. This is one place where you will find people who understand what you are going through and who can perhaps offer advice, but for sure can offer compassion.

My daughter had her first hospitalization in her early 30s and the diagnosis was unspecified psychosis. I found out later that often a psychiatrist will not diagnose schizophrenia or related schizo-affective until the patient has shown clear long term symptoms for over 6 months including hallucinations (usually voices) and delusions (often aimed at family members). It is now three years later, and yes, she was diagnosed with sz during her 3rd hospital visit of 5 (all have been forced). Three to four sets of medicine didn’t work to alleviate voices or delusions, but the 4th and 5th hospitalizations found a medicine that stopped almost all symptoms (an older anti-psychotic). It is not a surprise to me that your wife was not diagnosed with sz during the first hospitalization.

You will find, if you read stories here, that often the delusions center on a family member or members, and especially a family member who is providing or trying to provide close support. My daughter was quite delusional about my husband for years, calling the police on him numerous times. It is common to be suspicious of food and medicine being administered. It is common to not be able to see their own illness (60% or more of those afflicted) and that is called anosognosia. I consider anosognosia the REAL curse of mental illness as it prevents the person from accepting help.

The laws protect those with mental illness, and if she won’t allow you to be in on her care, there is little you can do. My daughter won’t allow her doctors to speak to me, but as taught in NAMI classes, I make sure to communicate to them. They will accept information. I have called her providers and have faxed information to them about her behaviors and what meds worked. When she got arrested, I went to see the judge both times to let the judge know there was untreated mental illness. This past time, the judge ordered she be medicated and released her ROR, which is the ONLY reason she visited the clinic for her 2nd long acting shot. I have no idea right now if she will get her 3rd, as her court case is over (I haven’t told her that, and I don’t know if the sheriff’s office told her).

If you know what hospital your wife is in, and since her psychologist reached out to you, I would start with making sure the hospital and psychologist have a written record from you of your wife’s symptoms. You could attempt to visit her, and if she won’t see you, the nurses may talk to you and offer advice. My faxes start with “In case this patient is in your care, please pass this to the doctors…” When I didn’t know what hospital she was in, I sent it to all three in this area.

The system does not help family members, but the people involved often care a lot (doctors and nurses will read the information) and you can continue to write letters to your wife while in the hospital asking for her to allow you to see her or speak to her doctors. My daughter acted calm and cool in the hospital until I tried to visit her, then the nurse in the waiting room observed her escalation into delusion while speaking to me. It helped them to see her that way.

I am very sorry this is happening to you.

It reminds me that I need to get advanced directives done for myself and my loved ones who are not ill, so that this “privacy” problem doesn’t stop those involved from helping in the future, if and when, something arises calling for intervention in treatment.

It is likely that your wife isn’t allowing her own family to help in her care either, not just you… and most likely her family doesn’t understand schizophrenia.

Come back here and read, that education and support helped me tremendously.


#3

As an ex-spouse of someone with sz, I say do all you can to stay involved in her care. It seems like you are her only “caregiver” since her family doesn’t want to be involved.

Keep checking in w doctors, even if they won’t disclose much. Someone at some point will have to answer questions related to insurance, at least. That may give you clues to what her treatment plan is. Make sure they have your phone number, and that you are her emergency contact. Keep a folder of all her medical records.

Don’t worry about her talk of divorce. Who knows how she will feel once she is stabilized on meds?Your job right now is to oversee your spouse’s care as much as you are able to do so.


#4

thanks so much for your replay @oldladyblue and @Jan

It is so hard because i have no idea on what the Dr’s are doing, or what their diagnosis hypothesis’s may be!

It is hard to hear that you have been through this so many times @oldladyblue. I have done a lot of reading and have seen the information on anosognosia. Its so strange what the mind can and can’t do! I have heard from a visitor that my wife is saying she feels no different on the medication, that the Dr’s aren’t telling her anything and that she is taking it day by day. i feel that i should pass this onto her treating team - i do have a line of communication to them and last we spoke they said that i should keep sending more information to them.

It sounds as though this might not be my wife’s last time in hospital if she can’t gather the required insight into what is going on.

I have a few more questions;

  • Should i go up unannounced to visit even though she doesn’t want me there? Her sister has been there every day and i know that she will be agreeing with my wife’s current thought process re me which is not helpful. Particularly because her family would prefer the bury their heads in the sand when the time calls for action.
  • When she is discharged, if she still says she would like a divorce etc how do i know that is actually what she wants?
  • My wife has added me back to social media with no other contact about having done that. I have not accepted it mainly because I see it as a hollow event - i.e. i don’t know if she has added me because she knows she wants to repair things or if she has added me because she wants to check up on me … The odd thing is that there is a very public post about us having separated (which is so out of character for her) and yet in adding me she has not deleted it, soooo confusing!! Should i accept it, should i ask her why she added me back? She also unblocked my mom, brothers and sister…

thanks for your support! Much love being sent your way.


#5

Yes, this is an unbelievably hard journey, and my heart goes out to you. Having your wife in the hospital without being able to know what is going on is very hard.

Unfortunately, it seems that if someone develops a severe mental illness (sz is one of the worst), often they may never gain insight. The mind protects itself. And the laws protect the individual whether they see their illness or not. Yes, repeat hospitalizations if someone isn’t on meds, are sadly possible. Sometimes repeat hospitalizations are needed even when on medication, as medication is guesswork even for the best of doctors, since there are no physical markers to just what type of med and what dosage.

I am guessing that you don’t have open communication with your wife’s sister? That is too bad as it might be the best way to gauge what is going on, and get your side of the story known to her family. It is quite a learning process for everyone involved with a person with schizophrenia. No one at all wants to believe it at first, and it is soooo very shocking when it becomes evident. Per the police I’ve dealt with because of my daughter, sometimes an ill person doesn’t act ill all the time, and not to everyone they come in contact with. Yet when a psychotic episode hits, almost no one knows how to properly deal with it.

To answer your questions: If she is delusional about you being harmful to her, it may not be a good idea to see her in the hospital. You could ask a contact at the hospital what they thought about a visit. Most of my daughter’s hospitalizations, she didn’t want to see me and sometimes refused when I showed up at the hospital. If she is discharged and still wants a divorce, there may be nothing you can do to change her mind. But perhaps delay it until you see if meds will change her outlook? If she added you back into social media, I would accept it. Confused thinking is part of this disease. When my daughter was unmedicated what she wanted and didn’t want were often unpredictable and sometimes very changeable. When the medication kicked in recently, she was able to communicate deep seated fears that she never mentioned for the prior 2.75 years. I’m sure they were in her head, but she couldn’t communicate them.

Read up on this illness, go to NAMI if you can, read “I’m Not Sick, I Don’t Need Help” to learn about LEAP, and be patient and kind as you can. It has never, ever helped me to be impatient or unkind. Gentleness and “I understand.” are sometimes the best reactions to any statement by the ill person.

It IS very possible that the right treatment meds will return your wife to herself, at least a lot of the way, that happened with my daughter, finally. She lost her paranoia of me and my husband, and is quite pleasant to be around again. It was not that way most of the last years.

You are very welcome here, and much love being sent your way too.


#6

@oldladyblue thanks for your response. It is so hard, i have known my wife since we were 11. :disappointed_relieved::sob:

No, i don’t have open communication with her sister, they have cut me off effectively. I asked her sisters help and she relaid my request to my wife as me trying to ambush her. It is now day 22 of my wife’s hospital stay. You would have thought even though they may not agree with how i went about getting her help they would be thankful she is getting help. The saddest part in all this is their true colors have come through. Even if my wife turns a corner with me in her life i don’t want to raise children in that family and have my in-laws involved. My wife and i were starting to plan for children only 14 weeks ago and i have been ready now for a while. Of course, i can’t ask my wife to choose between me or her family that is so unreasonable. I just struggle to see how the pieces fit after how my in laws have behaved. Very hurtful words and clear dislike towards me.

Advice taken - i won’t go up unless invited. I am beginning to come to terms with the “discharge & divorce thing” as much as it pains me to say it after being together for 10 years and knowing each other for over 2/3’s of our lives.

Just with the social media invite - here is a bit of context. She called me last Friday from hospital to talk about how i was doing etc, saying we have known each other for a long time and wants things to be amicable. We need to sort out her belongings etc etc. I asked any idea when you will be discharged and she said no, no idea. In her recent episode however she went to the police to say i was psychologically abusing her, drugging her etc. I feel the adding back on Facebook is her way, at the moment, of showing that things are/can be amicable. She has a nasty post on Facebook that insinuates that i have done something to her yet she adds me back and keeps it there… I feel that by accepting it, it will play into her thought process which her Dr’s have said in the past should be avoided - understand the emotion while not agreeing with the thought process/delusions etc. The other part of me says (similar to what you have written) that it could be part of the meds now kicking in and the seesaw working itself out to her new baseline. So if i don’t accept it in this scenario I may miss an opportunity to rekindle what we might have. Seems i have to take alot of emotional risk for very little return.

Do you think i am over thinking it? Should i just accept it?

ARRRRGH!

thanks again for your support!


#7

I am not as knowledgeable of the marital problems caused by sz, as mine is a parent/child relationship. However, my spouse is an alcoholic, which is its own package of physical and emotional problems. I have worked my way through our problems, but have accepted that I cannot predict the future of our relationship. I live for right now, next week, next month, and not much beyond that except that I am planning what happens if I die suddenly as how will my husband and daughter exist? I am the only stable one. I used to not worry about it, as everyone related to me was capable, but that is no longer true.

You have your own specific circumstances, but perhaps the best thing to do is to NOT overthink where the future might go, until you see how the present pans out. That was very hard for me to do, but it helped me emotionally to try not to control the future.

Your wife could change her mind about everything concerning a divorce, or maybe she won’t. I personally wouldn’t worry about social media for now, I would worry about relationships in real world (i.e. phone calls or visits) from people who won’t find fault with you. That is just me, I cut off the negative people in my life except for vital conversations. I almost totally went off of Facebook the last three years so I didn’t have to talk about my family problems or “chat” with those who weren’t TRULY close to me, or whose worst problem was what color bath towels to buy. Geeeeez…

A list of good rules is at the following link:

I try to concentrate on the most important tip, until I have it working in my life, then I try another tip. Taking care of oneself and the unimaginable stress caused by sz is what I am working on right now. That, and trying to help others…

You cannot wrap your mind in divorce/no divorce, children/no children, until some resolution to your wife’s psychosis regarding YOU is found. You won’t be able to overcome her delusions about you if they persist despite medication. It is a BIG unknown right now. It is impossible to reason with delusions and often they don’t respond to medicine. It may be that your long relationship must radically change because of her schizophrenia. That is NOT your fault.

I’m sorry.


#8

thanks @oldladyblue - that list is great!

A bit of an update @Jan @oldladyblue - my wife has now added me back on instagram. i have not accepted the facebook one or the instagram one yet. Is this her showing some positive disposition towards me now? Or is this still her way of saying this is what amicable is/means to her… any thoughts would be welcomed.

I do know that she is very angry and embarrassed at what happened to get her into hospital. The police etc etc. I totally understand that she would be embarrassed - i would be too. She is however a bit misunderstood as to how that all came about. Her private psychologist was the one that instigated the police to do welfare checks at our home as well as at a hotel she was staying at on the basis that they were in a session and i was accused of poising her etc. My wife thinks it was all me.

I feel that i at least need to explain this to her - not sure how or when i can do this though… should i contact her Dr’s and ask their advice on this? I think it shows two things, firstly that there is potentially positive disposition towards me (facebook/instagram) and secondly that she is starting to feel the emotions of what has gone on. All positive i think for my wife - still not sure what that means about us though.

thanks!


#9

I wish that I could offer you more insight, but honestly, no one can know what her reasons are for posting on social media except her. I would probably just accept, and see what happens. I think not accepting her overture toward you might be worse.

Over the years, I have learned to just accept what my daughter wants to talk about, rather than to try and force the “serious” conversations.

Because you are out in the cold, of stuck in the dark, as to what she is feeling, you are probably searching for answers that can’t be found just yet. Be patient, and be tolerant. It will work itself out.


#10

My sz ex husband puts a lot of importance on social media, mostly FB. So, I would accept her “friemd” requests. It may be a first step in improving her trust issues with you.

You can tell her about he sequence of events that lead to her hospitalization. She may not believe you, but she may eventually.


#11

You are asking good questions. I’d like to point you back to @oldladyblue’s suggestions to find and attend a local NAMI support group (if one is not available in your area, learn all you can about the illness by starting at NAMI.org). Also, you will likely never make headway with a person who lacks insight (anosognosia), with out understanding how to talk to the person. Get a copy of the book “I Am Not Sick; I Don’t Need Help” . I am convinced using the LEAP strategy described in the book is the best way to keep or get your loved one’s trust, and to eventually get her onboard with taking medication or submitting to a treatment program. A few weeks in the hospital alone will not do it. There IS hope, but you must keep learning and realize that each person is different. Our son refused medication continually, and we have had multiple periods of time in the hospital when he would not come out of his room or down the hallway to see us. I kept going anyway. Sometimes I left notes. When I started with the very simple basics of LEAP, “It is important to me to know what YOU think”, I couldn’t believe the immediate change in our son’s demeanor. All of a sudden, his defense broke down and he would at least talk to me. It was the start of something that led to treatment, another hospitalization, and he’s now in a residential home where he is getting focused care, is compliant to take medication, and he is getting so much better. We still have a long way to go for him to truly see the need to take medication long-term, but we are hopeful that with the medication AND with counseling, this will happen.


#12

I don’t know what state you live in. I live in California. Your wife’s doctors in the hospital can petition the court for you to become her conservator. Then you will be allowed to to talk with the doctors and have a say in her treatment, etc. I have been my son’s conservator for 22 years now. It is the only thing that has saved his life. Otherwise, he would have died out on the street. I do wish you the best of luck and many prayers. We all know what you are going through.


#13

Haven’t come here lately but I like to check in and keep it real my story @DFL88 is pretty much same as yours which you will find when the MI issues take on psychosis most behaviors are very common and most our lament efforts are also very common you will learn as u go. First thing you must except is as long as the psychosis persists it’s pretty much impossible to have rational conclusions to anything . My wife’s back home ,working and living mostly a normal life but I’m handing her the meds with a drink every night even though she curses me out most nights but because luckily the meds are working I can say something like rational “please don’t make any changes today because I’m so happy for you that you’re feeling so good that you don’t think u need them” and lucky for us this has been buying me another day for last year but again because there working already it is a whole lot easier to try and reason it’s critical for them to get back to something close to baseline to take the meds so it seems and the side effects of mood swings and anger anxiety obsessive and behaviors become so easy to except when you know what can happen without the meds so life is different but it’s ok if you ca just get over the hump of medicine titration it was roller coaster for 6-8 months and finally Jaden her down small does and it seems to be holding thank god.The most important thing for me was getting her past the delusions so she could get mad and then get over it when She was in fear all day there was nothing I could do and she hated me for putting her in hospital and every day I visited and every day she hated and told me not to come back but again we’ve been lucky the meds started working little by little she got her life back and I’m there to help which is all I wanted


#14

There actually is a way to determine which meds may work better than others. My daughter recently had genetic testing done. Her psychiatrist took a cheek swab and sent it to GeneSight and it sent back a report on all kinds of psych meds - which would work as prescribed, which may be affected by certain genes, and which will definitely be affected. We learned that her clozapine levels kept dropping despite dosage increases because she was hypermetabolizing the med. For now, because it has worked so well, we are continuing to increase the dosage to get her levels to a good place. Our insurance covered the test. I’m not sure all do.


#15

Wow, it seems like your wife is still having symptoms of psychosis. My so, whom accused his fiance of poisoning him and that she was going to kill him. That was obviously not the case, but to him, he believed his thoughts.
That was around Oct 2016. The first bout of psychosis.
Fast forward, now in Jan 2019, he is finally starting to come around and told her he loves her and that he loves me. Which he hasn’t done. I think it’s due to the correct amount of medication. Which has helped tremendously. Someone recently told me to try fish oil. They stated that it cured their psychosis. As a mother whom 2 of their children have psychosis, I tried it, and OMG it works. My one son isn’t talking out load like he is talking to somone. The other one is actually starting to have a normal conversations.
Seems to me that your wife still hasn’t been treated properly and needs additional help.
Don’t give up on her just yet. Have you ever thought about getting a court order to become her Guardian? If you become her guardian, you can help her better. You would be able to make sure she gets the helps she needs even if she doesn’t want it. Just a thought. Good luck!


#16

Hi @oldladyblue , @Jan , @hope4us , @juliaf , @jason_rivera_bbz , @Skye_Raine and @mmm61 ,

Thank you all for your responses and support.

By way of an update…

My wife has been discharged and is living in an apartment she rented while on her psychotic break. I questioned the doctors about this and they said that she is now not psychotic and therefore they are comfortable with her decision. I do trust them, i always have trusted Drs. I do wonder who is ensuring she is taking her meds. She is still involuntary but just an out patient now.

I have had communication with her, she has said that she is hurting (i too am hurting) and she hopes that time will heal my pain. She has said that she still has feelings for me and that she hopes we can see each other. I told her that seeing her would be too much for me right now.

I don’t know if I can believe her given the total destruction this has caused to my life as well as my feelings and trust for my wife. I think it would be unfair to blame that on her as it is an illness after all. She still doesn’t want me involved in her treatment… not that i have asked to be since her discharge though.

I met with my psychologist today for the first time since this unfolded and he said that i should write her a letter explaining what I did and why i did it, explain to her that i need to make a decision about my future and that includes our relationship so i need to know if you still believe the following to be true - i would then list all the things she said about me in her psychotic state. Part of me thinks this is too soon, the other part of me thinks its not. I have spoken to a psychiatrist friend of mine who said that the next month (noting she has only been back on meds now for about 4 weeks) will be a bit all over the place for her and to give her space to process what has happened etc. She is of the firm opinion that she has schizophrenia, i wouldn’t know because i have not been told anything.

What do you all think? Do i wait to send the letter, do i wait for her to contact me? I have been told not to meet her in person as i should not put my self in a position where i could be accused of ‘abusing’ her again… its all very confusing to me. My brain says send the letter and protect yourself, my heart says put her first, let her heal and wait a bit!


#17

@DFL88 I personally think that you have a good grasp of the situation: your psychologist is trying to help you through this painful emotional situation, BUT your wife’s doctors are trying to help her to stabilize. You want both of you to get better from the pain. However, she has an illness that may make being rational difficult for her.

These are my thoughts (and you are free to reject or accept them):

  1. Probably the best thing you can give her is kindness, not throwing back in her face the horrible things she said about you and to you while in a psychotic break. I can’t see how that would help her. It might make her worse to “stir the pot”.

  2. You need to get her to talk to you. I think that is more important than you talking to her. I mean, you need to get her to talk while you listen, and get her to keep talking, until you feel you understand her. It may take many talks. Then the path forward should be clearer. The thing that helped me MOST in helping my daughter was learning Dr. Amador’s LEAP technique. I believe that his method applies to much more than just getting someone to accept meds. In this case, it may help save your relationship to learn to listen, empathize, agree and partner (LEAP) as he teaches.

  3. Most married people I know struggle with marital problems. Adding in schizophrenia…, well, it’s going to be difficult to sort out, the path isn’t going to be clear. No matter your direction (together or apart) you will still always care for her.


#18

Good suggestions so far @oldladyblue! My thoughts are that you want your loved one to know that you care about her. Her behavior while psychotic is the illness. It is hugely positive if she acknowledges that she has an illness (SZ). That should help her to accept treatment. (I still would read the book “I Am Not Sick; I Don’t Need Help” by Dr. Amador.) So, in order to let her get the treatment she needs to stabilize and hopefully remain as stable as possible, and to appropriately protect yourself (physical and emotional), you will need to decide if that is better done separately with some scheduled time to communicate, or if you need to be together in the same home. Regardless, you must establish boundaries. If she doesn’t comply with treatment, you will not be able to enforce it unless there is some legal requirement established. Once she is in your home, it becomes harder to remove her unless she meets criteria for involuntary treatment. It sounds like you don’t officially know what her treatment plan is. If this was MY spouse, I would want to be given authorization from my spouse to talk with the medical staff. I can’t imagine otherwise. What if this was cancer or some other illness? Giving permission for the medical staff to talk to you does not give away her rights to choose. That would only happen if she signed a Power of Attorney giving you the right to make decisions on her behalf. Personally, I would want that to be a requirement before I would continue with the relationship. However, all of this could take time and you don’t have to give up on her if that is the case.


#19

Is that the only thing your sons are taking or are they on anti psych meds as well?


#20

@DFL88 - I have to agree with oldladyblue on this one. My sons father started going on about something my son had done while in psychosis and I was just like - that is the past we are letting all of that go. His father (who does not live with us) dropped it. My son was out of his mind. I am very curious how he remembers some of what he did. (Nothing violent) But I have to drop it and put that in the past.


#21

My son DID do something violent while having an episode of psychosis, and is hospitalized long term because of it (he is doing doing very well). Part of his therapy is to look closely at the crime he committed, and identify symptoms he was having, feelings that were there, everything he can remember. It’s all designed as part of his relapse prevention plan.
He says it is very hard to do, even harder to talk about it with me, since I am the one he injured while in psychosis.
But I would tread carefully, @DFL88, it sounds like she is newly medicated and it might take time for her to gain more understanding before she is able to look reasonably at things she said. It has taken my son over a year to be able to talk to me about this.
I can understand you needing some answers for yourself, and hopefully you will get them. Hang in there. It’s all hard.