Family and Caregiver Schizophrenia Discussion Forum

Sister with Schizophrenia and Anosognosia

Hello,

I was referred to this forum after asking for advice on Reddit. My sister has schizophrenia, diagnosed in 2000 and a relapse in 2007. She has been taking the same medication (Abilify) since 2008 and had been doing extremely well, until recently. As it turns out, she requested for her medication to be reduced significantly to just 5mg once a week. For some unknown reason, her psychiatrist agreed with her request.

Pretty much as soon as her medication was reduced, she started showing symptoms, most obvious one was her paranoia, and disorganised thoughts and actions. She was usually very responsive to calls and texts, but we couldn’t reach her for days until our parents went to visit. She avoided them during their visit, saying she’s busy with work and needed space. When dad had to leave for work reason, mum decided to stay because she was worried. My sister suddenly texted saying she’d come over to my place and would be arriving the next day. We all live in different countries and I live the furthest from them (8 hours plane ride) so I was surprised (not to mention that being her first communication after not hearing from her for close to 2 weeks by then).

She arrived the next morning and became much quieter than usual. Usually reserved and quiet, but this was definitely something else. Took her to a shopping mall at her request and we walked aimlessly for close to 2 hours, each time I asked her where she wanted to go, she’d say one thing but went the other way when we almost reached the shop. At my apartment, she said she would start using her own things, and changed the bedlinens I had put for her (freshly washed and dried) to the ones she brought with her. Even brought her own mug when I pointed out I have at least 20 of them here. We went grocery shopping so she could start cooking for herself, not for us, just herself.

This had never happened before in the past. She actually came over to care for me back in August when I had my wisdom tooth removed, even cooked for me for close to a week. I went to see her in September and she was still fine. Busy with work, but fine. She started exhibiting some weird behaviour in October (apparently that was when her med was reduced), and then this happened. As of now, she’s been here for close to a week.

I’ve started reading the book from Xavier Amador “I Am Not Sick, I Don’t Need Help”, as well as reading up on anosognosia. They really describe her very well. At the moment, she’s not aggressive like her previous episodes, mostly keep to herself. Barely talking as well, only some “hmm” here and there to indicate answers, nodding and shaking heads for yes and no.

I’m in Australia. I’ve called helplines, mental health services, reached out to her psychiatrist (who basically just said she’s relapsing and needs to see a psychiatrist without delay. Yea no shit, sherlock!). What I got is basically since she’s not violent, doesn’t appear to be in danger to herself or others, there’s not much I can do.

Family been texting me for updates, multiple times a day from multiple people. I suffer from depression and anxiety myself, so this has taken a toll on me as well. Today, I basically did what she does, not coming out of my room until late in the afternoon. I’m just feeling so tired and don’t want to see her. We’ve been doing a thing where if I’m in the living room, she’d stay in her room, when I go back to my room she’d come out and do her thing. It’s like I suddenly acquired a housemate that doesn’t want to see me.

She had no response when I told her I wasn’t feeling well yesterday, only that she wasn’t well too. I tried to be cordial still, tried to ask if she wants any food since I was ordering food in. Initially said no, but I kept on reading off the menu then she agreed on something. Then suddenly said she doesn’t want it anymore. I said that I’m ordering it anyway, if she doesn’t feel like it now maybe she could have it later whenever she wants. No response. Last night, I heard her opening the container, then poured the soup out to sink and dumped the content to the bin.

I’m trying hard not to take this personally because it isn’t about me. But still, this is hard. I guess I should be thankful she emptied the bin as well so I didn’t have to see her throwing out the food.

I don’t know what I’m asking as well by typing all this out here. Support? Advice? How do you all strong people cope with this happening to your loved ones? I’m only here with her for a week and I’m already feeling drained. I just want my sister back already.

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Years of practice, simply assure them that they are safe, never argue with the delusions, simply blow them off and learn to never take it personal or over react to the seemingly odd behavior…

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Hi, and welcome to the site @ThingsIDont . I am so sorry that your sister has relapsed after years of successful management of this awful disease. Most people with sz also have anosognosia. I never heard of anosognosia until long after my daughter got sz at 32. She is now on medication for over a year, but was forced on it by police action, forced hospitalization and a court order to medicate or remain in jail. She still doesn’t admit to being ill, or taking medicine. Her shot is something else to her (not an anti-psychotic to her, but it IS a very strong anti-psychotic), but she takes it.

I am so sorry that your sister’s doctor basically “caused” this relapse by reducing her medicine so drastically. I would suggest that if your sister does anything at all, or says anything at all that can remotely be taken as a threatening action that you get her force hospitalized. My daughter said, “everyone in this house should be dead” and I called the police who took her. Another time she was simply stabbing a desk with a knife point over and over and I called the police. It took 5 forced hospitalizations and two arrests to get her med compliant. It is a very very hard road.

I’m glad you found the site, read as much as you can, and post for advice and support. I, too, found the site from Reddit years ago now. Advice here and joining NAMI helped me solve the psychosis for my daughter. I wish you the best of luck.

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Straightforward and practical advice - thank you, I need to hear them. It also made me realise at least I do one thing right: I never argue with her delusion and generally leave her be. I’m guessing that’s why she chose to stay with me for now. I just have to keep reminding myself to not take things personally as this is about her illness.

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Thank you for sharing your story, @oldladyblue! Your daughter’s case seems like a tough one. Does she live with you? You sound like a remarkably strong woman, I wish I have half your strength to go through this.

My sister was involuntarily admitted both times, the first one involved the police and they were the one who sent her to get assessed as she was also manic at the time. I’m actually hoping we won’t get her hospitalised again this time, as it was traumatising for her the last time it happened in 2007. But getting her to understand she needs the med to get better is really tricky. We also became complacent and let our guards down since it’s been so long since her last relapse and she’s been doing so well all these times.

I’m reading through Dr Amador’s book now to hopefully get some ideas for her to acknowledge she needs help. How did you get your daughter to agree to take the shots? Do they (the shots) help with the delusions or just to manage the manic side of her?

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I can relate to a lot of your post (my husband is in month 9 of a relapse).

I’m glad you’ve found Amador’s book. He has some role plays on his website that are also very useful. His book/website and this forum are the two most helpful things I’ve found.

I can relate to the roommates who don’t like each other much experience - that was my experience all summer. And I also can relate to how hard it is not to take the behaviors/attitudes personally.

Amador’s book (and the suggestions from others here) have helped me focus on my relationship with my husband, which has improved quite a bit. I can’t tell at this point how much of this is due to my attempts to change how I interact with him vs. some degree of spontaneous symptom recovery. I imagine it will become clearer at some point.

My husband and I also had some control issues over food. When he started sliding a few years ago, I started preparing healthy meals three times a day - basically because it was nearly the only thing I could do to help. Once he had started medications and had recovered a bit, he gave every indication of appreciating this. However, once he relapsed, he began to get angry with me over meals and shopping.

If you think about it, you did over-ride your sister when she indicated that she didn’t want anything and you ordered it anyway. You did it with loving intention, of course, and you probably were looking ahead and wanted to make sure she had something to eat if she got hungry later etc. but I am wondering whether her ultimate take was that you weren’t listening to her?

The real power of Amador’s approach is that it does involve trying to really listen and understand the other person’s perspective. I do think that underneath things (for me) is the idea that, “well, I know best because you are crazy and I am not”, even though I never say this. My husband and I get along much better now that I am trying to listen to what he says, even when I think I know better - maybe I do (and in some ways, I probably do), but maybe I do not (and there certainly are occasions when I am wrong).

I think if I were in your shoes (and I could bring myself to do so), I’d try apologizing to your sister about buying her food even when she said she didn’t want it, that you meant well but that you realize now that you weren’t listening to her and tell her you won’t do this again. I have no idea whether or not she’ll have any response to this, but at some level, she’ll probably appreciate it.

And you can apply this approach to other areas, of course, when you realize you are in conflict instead of being allied - until perhaps at some point you really are allied again.

My husband is still trapped in the house due to the ‘armies of evil’ outside but at least he seems to be starting to see me as more of a partner/ally again as opposed to a jailor who might be working with the forces arrayed against him - which feels a heck of a lot better to both of us, I think!

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My daughter was court ordered onto meds while in jail, and put on the shot in the hospital (she was released from jail to the hospital because the judge asked me what help I needed and I said “medication”). Once out of the hospital, she took her shot for 3 months to “stay out of jail”. Then the court order wore off, and she kept taking the shot because it helps her work and keeps her out of the hospital.

Yes, she lives with me. She would otherwise be homeless. The years of psychosis were wearing on me. But I couldn’t give up on her until I tried everything in my power to get her on meds. And thankfully she got arrested, and the judge was helpful. It is a year now since her arrest and last hospitalization.

I use Dr. Amador’s book a lot to gain agreement on things, but she still doesn’t believe she is ill, or that she is on an antipsychotic. Her delusions and hallucinations are mostly gone, but not all gone. I no longer try to talk about the past with her, and I don’t rock the boat about her psychiatrist visits and her shot. She seems to have accepted them, and just goes. I felt guilty for awhile at “tricking” her into staying on her meds, but the result is soooooooo much better than the nights and days of manic, paranoid delusions and hallucinations. I would do it again.

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That is a very good point that I have to be careful about in the future. Funny thing is, I’m usually the kind that would listen to what people want/don’t want, mainly because we have a controling mother who’d tell us what to do instead of letting us think for ourselves. I thought I gave her the choice because she had indicated she wanted something, then for some other reason she decided to not want it anymore. That’s why I said I’d order the food and she could decide later if she still wants it. I guess she did make a choice when she threw out the food.

For me, the hard part to navigate this is because she changes her mind really quickly, it’s hard to keep up sometimes. She’d be ok with sharing food one day, then suddenly go extra possessive about her own food the next day, to suddenly ask me out to lunch the next day. I don’t know what she wants until that moment sometimes.

Is that a trait/symptom of sz? Does you husband change his mind from time to time as well?

Please don’t feel guilty about tricking her into taking the meds, she absolutely needs them. I read in Dr Amador’s book that with every psychosis episode, part of the brain cell gets damage. That is why the anti psychosis med is there so it’ll give the brain cell the chance to heal.

I guess I find it interesting that your daughter’s case was court ordered and she had to take the shot as per court’s requirement. It probably depends on the severity of the manic episode and whether there was harm (or potential harm) done to the public, but in Australia most sz case the police would just get them assessed by mental health professional/psychiatrist, and then they’d decide whether they’d need to be held in a ward or what the next course of treatment would be. There won’t be criminal records as opposed to what seems to happen in The States, unless they did break some laws or causing harm to the public.

It seems to be working in your favour though, when your daughter got arrested. Because then she could finally get the treatment she needed and on the path to be well again, albeit begrudgingly at the start. In my darkest thought, I had hoped that my sister gets manic again so I finally have a reason to call the emergency services for her to get help. But I should probably be grateful that she’s calm and not causing anyone or herself any harm.

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@ThingsIDont Hello, I’ve been sitting back and seeing this thread develop. I’m what some call a highly functioning person with SZA and laypeople might say I’ve recovered. Given there’s always a possibility of relapse and recovery is life-long maintenance/vigilance, I’m not always comfortable saying this. I try to share with caregivers my insights into the disease and the underlying thoughts and feelings involved, and point to any blind spots and different approaches a change of perspective may bring in case it helps them.

You say she had been doing well on Abilify. How would you define this? You also say her doctor reduced her dosage at her request. Do you know her reasoning? Do you believe she is still taking medication at the reduced dosage? Do you know her dosage before then?

I wouldn’t blame the doctor here, he or she is in a choice between a patient refusing medication altogether, versus at least taking some medication and perhaps with anxiety over symptoms or other reasons she may ask to return to higher dosages someday. A reality of voluntary medication regimes is compliance is not 100%. Some of this is baked-in and doctors tend to over-prescribe, but patients often fill medication and adjust dosages themselves or horde medications to save for a rainy day when they think symptoms are worse. Abilify is relatively free of side-effects compared to other medications, and it has a very high half-life so a single dose once a week, while unusual, might possibly work. I believe the dosage mentioned is considered by some to be borderline therapeutic, but dosages, symptoms and brain chemistries vary. My guess is the 5 mg daily was her base dosage and she asked only to take it once a week. Taking it once a week likely means levels vary throughout the week, but the half-life as I recall is a very long two weeks, so it’s more feasible to dose this way with Ability than other medications.

From what you are saying, my guess is your sister may suspect some sort of poisoning or environmental issue causing her harm. It seems also that she’s trying to control her environment to reduce her exposure. Taking Dr. A’s approach, I would try to get into the headspace of how you might act and feel if this was your reality. I think you have an “in” with her as far as empathy and rapport goes, because of your history of anxiety and depression. Use it! If you model talking about your fears and symptoms etc, she may start to feel empathy with you, or better understand what you want from her.

Either way it helps to foster a bond of confidence between the two of you, and you have little to lose and it may make you feel better too. It’s very isolating and lonely being in the midst of a paranoiac spiral. When I was in these, I had a Jungian talk therapist as an escape valve, but from what I gather she doesn’t have such a thing right now. Trust is built largely by empathy and action, not so much words, so you might think of some sort of gesture like getting food she likes from your childhood together or going to restaurants or shops or other places you might both share positive feelings about. The one advantage you have over a therapist is you know her life experiences in more intimate detail than any therapist ever could, and may be able to leverage positive feelings, likes and dislikes to build trust. The downside is that she also knows your weaknesses and times you may have failed her or you quarrelled etc, but I think you have a better shot than a parent because as siblings your shared experience and familiar status is similar. You also have a leg-up on a therapist, in that you don’t have to waste time on a lot of exposition. And while you can’t be a neutral as a therapist might be, it’s harder to distrust a family member than a stranger.

I must admit, I haven’t read Dr. A’s book. I need to put it on my Christmas list I guess. But I do intuitively understand the premise and having visited the underlying thoughts and feelings, I believe it should work. But it definitely will take time, and a period of seeing things from each other’s perspectives. And unfortunately, you’ll have to do the most work, because the caregiver goes first in this game.

Feel free to message me if you’d rather not answer some of my questions publicly and good luck.

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Oh yes! He is all over the place in terms of pretty much everything, from big things (such as his degree of trust in me vs. seeing me as an enemy) to small things (such as what he feels like eating).

Perhaps because his symptoms are relatively mild (i.e. mostly positive symptoms of delusions with low level auditory/visual hallucinations but relatively mild cognitive/negative symptoms), we have been able to have some good talks about our relationship - agreeing to disagree about his symptoms (as he also experiences anosognosia), but able to really talk about our areas of conflict/confusion.

In a weird way, it has been positive. We both agree that feeling alienated from our spouse is the worst part of the entire experience for us, and I think talking about this has brought us closer again.

I think you and your sister probably have the same potential.

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I totally agree. It was a turning point in my relationship with my husband when I shared my distress about our situation with him. I’d been trying to protect him from my sadness/anger/grief/anxiety, but that just fed his sense that I was working against him.

He has expressed doubts about the sincerity of my distress at times, but I do think that overall, it has been very helpful, and our relationship seems to be gradually normalizing.

Dear ThingsIDont, such a dreadful dreadful disease, this forum is invaluable and without the advice on here I really don’t know how I would have coped.
I am also trying to navigate our mental health system in Australia.
You could reach out to Carers Australia (not sure if your are in a city or country area) to help with your own well being, they have meetings for like minded mental health caregivers once a month, those meetings have helped me find resources I was not even aware of.
CA also offer 6 free counselling sessions.
Take care, you are a really caring sister.
Maggie46

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@Maggotbrane, thank you so much for taking the time to comment and share your valuable experience. As little as 3 months ago, I would say my sister was like you, high functioning sz with no delusions and hallucinations. She had been living with no symptoms for the past decade. She pretty much lives alone, with our parents went over to visit about once a month for a week at a time. I usually see her about a handful each year, with us taking turns to visit each other. She has a good career and now owns her own business. Last I heard, she fired her 2 staffs recently when her symptoms began to show.

I’m not sure of her previous dosage, but I knew she was taking half a tablet every few days. I think it might have been twice a week, and that was back in August when she came to visit me. At the time, she was freely putting the med on the kitchen counter, even joked with me when we watched a series where someone was taking antidepressant, she said “Oh I’m taking mine on Sunday”. (I know it doesn’t sound like a joke but context was long and unimportant to tell here.)

I don’t see her med anywhere this time. The Doctor met with our parents and admitted while he saw something wasn’t quite right during my sister’s last consult (late October), he was unable to reject her request to reduce the med to once a week. Her reason was muscle stiffness particularly on her fingers. She had mentioned in passing before that she gets muscle cramps sometimes and her fingers feel stiff from time to time. But didn’t seem like it impacted much of her daily life as she still played musical instruments often, and lead an active lifestyle (she runs and swim a few times a week).

I kept thinking, as a doctor with years of experience and expertise, he should have some ways/authority to get the patient to continue taking the med. But that could be my anger talking. I’m just so angry and kept thinking this could’ve been prevented so easily.

I guess what makes it harder for me was this came so suddenly with barely any warning. We still chatted normally around late October, then some weird texts came in early November when she had to go away on business trip, then she came back pretty much a changed person. This shell of a person formerly known as my sister.

Before, she has an active social life and also very active at her church. Now she walks with her head down, avoiding eye contact with anyone. She resigned from her church positions, shuts pretty much everyone off. She’s been shopping a lot since she got here. It almost feels like she’s buying things to replace the ones she already has with new ones, because some of the things she buys I know for a fact she has identical ones back at home. Is this what you meant by some sort of poisoning and environmental issue? Could you explain more on that? A lot of this doesn’t make sense to me.

I wanted to have a heart to heart talk with her, basically asking what’s wrong, why did you suddenly change so much. But I don’t know if that would bring more harm than good. She barely talks to me now and mostly kept to herself. I thought today was a good day because she asked me out to shop with her. But as soon as we got back, she shuts herself in the room again. When we were outside, she’d walk behind me mostly. Unless we got to a shop then I stayed back so she could shop freely.

Sorry if I’m rambling on. I don’t even have a filter on what important to share and what not anymore. I hope I didn’t miss any of your questions.

How did you approach to have the talk with your husband? My sister and I barely talk since she got here. She mostly kept to herself and limit herself to the briefest response when I ask her things. I don’t even know how to begin “the talk” with her. She used to be able to joke about things like “did you hear that as well?”, basically wanting some reassurance that she wasn’t hearing voices again. Most times, there was indeed a sound and I told her that. I thought that had meant she had some sort of insight that if she starts hearing things again then something is definitely not right. She was usually a smart, logical person, but how was she not able to put this together and realised that she wasn’t well. Sigh.

Sorry, just had to let that out. I know now that is the anosognosia in play. This is just very frustrating that a usually very smart person could turn into someone that doesn’t make sense. I should probably adjust my thoughts to start accepting her as she is now.

Hi @Maggie46, thanks for letting me know about Carers Australia. Thought I had exhausted all my resources with the multiple helplines, CATT teams, and even calls to some hospital to enquire about their mental health service procedures. I’ll give CA a call when I’m not with my sis to enquire about the meetings. I have some ideas on what to do if she becomes manic again, but in the mean time I’m just trying to get through to her as much as I can.

Thank you, but to be honest, I want her to get better for my own selfish reason. It took me years to finally have my sister again after her last episode, to finally not to be afraid of her again, to finally not having to watch every single thing I say so not to set off any unknown “explosives” again, and then suddenly this happened. It’s like an alien suddenly took form of her and tried to immitate her without success. It blindsided me and I just want to have my sister back.

@ThingsIDont thanks for your reply. You mentioned manic states in some posts. Has she been diagnosed as Schizoaffective? Not that it matters that much, but I was curious. It’s a little odd that she was taking medication alternate days before, it’s normally prescribed daily although I’ve seen it prescribed with alternating (higher) dosages on weekends. My guess is she isn’t taking medication at present.

Abilify doesn’t normally cause stiffness. This was a selling point, as it is called ‘activating’ , meaning it encourages movement and does not make you drowsy. Most of the atypical AP medications are much better than the typicals as far as stiffness goes, you barely notice you are taking them. And stiffness is more of a full body effect, for me it was in the neck and shoulders. From your description I would guess her dosage was quite low. Medication comes in fixed dosages and leans to a more typical (higher) dose tablets. Being instructed to take half tablets usually means a low (non typical) dosage. Same with alternating days or double on Tuesdays etc.

Does/did she work with her hands a lot, aside from music? I know I had to give up guitar because of tendinitis/carpal tunnel at one point, because work had to come before play. Arthritis comes to mind too. When you stop medication it’s generally for various possible reasons: you feel you don’t need it or can manage on your own, some side-effect real or imagined is perceived as interfering with something you want to do, or you miss the feeling or excitement you had when you were ill and want to experience it again. My guess from what you are saying is she’s in the side-effect category.

Replacing items likely means she thinks they are poisoned or have something planted within by outside forces perhaps to surveil her. She doesn’t trust your items, and thus far doesn’t seem to think you are part of any conspiracy, or at least hasn’t voiced that concern. Although her behavior seems odd, there is likely a sort of ‘logic’ or consistency to it. She may think it is self-evident. Her silence may be a form of protection of herself or you from outside agents. If you don’t say anything it can’t be used against you.

As I understand it, she came to you and she left her own place. Do you think she came specially for your help, or just to escape her home which may be ‘bugged’ contaminated, etc? My first thought would be to take her on a long drive, perhaps out somewhere remote like a nature reserve and see if she feels more comfortable and talkative. The idea is it’s hard to surveil her that way and/or nature might be perceived as freer from poisons or contaminants. As I said her behavior seems odd and mysterious, but will likely have an odd but consistent logic. When you are in this sort of state, you may feel you can’t trust anyone, but to unlock the mystery and help her, she’ll have to feel comfortable with opening up about what’s troubling her.

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She was diagnosed as paranoid schizophrenic with psychosis back in 2000, and again in 2007 on her relapse. These 2 episodes occured in 2 different countries, and she was manic both times. Police was involved in 2000 and emergency services came to take her away from her home in 2007. Both times she was admitted to psych ward, but stayed for months in 2007 as opposed to only weeks in 2000.

I’m not too sure what her medication was before 2007, it might have been Clozapine. It made her gained weight and that’s mostly why she stopped taking them. She still has issues with weight and food, but so far has been eating at least once a day from what I observed.

Ah yes, she also complained about being tired all the time, especially on days where she takes the med (Abilify). She used to survived on at least 5 shots of espresso per day, and still feeling tired. She could have used that as her reason with the doctor as well, to have her med reduced to once a week. Apparently, she has stopped drinking coffee since late October. No reason was given. My guess is she thinks now that her medication has reduced significantly, she doesn’t need coffee to stay awake anymore.

Good idea with the long drive. She has already told me she wants to go shopping again tomorrow so I’ll have to drive her to that wretched mall that I loathed because we’ve been there 3 times already this week. But, I’ll ask if she wants to go for a walk at the beach/lake/nature some other day.

She uses her laptop all the time when she works, and she plays a few musical instruments including guitar, keyboard, and drums. She did say she felt chased out of her home because our mum stayed back as she was worried about her. Initially, she only intended to stay for a week as I was supposed to fly back to her (today actually!) for the holiday season. But she extended her stay until after the new year, so that means I’m staying back too. (This was after a lot of back and forth with her saying I’m free to do whatever I want but she’s staying here, and I kept saying over and over that since she’s here there’s no point for me to go anymore because no one would be there!)

This is it. I’m under a lot of pressure from my family to get her to take her meds, they even want me to just send the emergency service to “pick” her up again. But I’m really hoping there’s a better way than to lock her up again, as it was very traumatising for her (especially that 2007 one) and also for us.

You have given me a lot to think about, and pretty much educate me on Abilify as what I know about the med is just what drugs.com told me. I did see it being mentioned many times as the drug of choice for sz, as it has relatively mild to no side effect. Thank you for being here.

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This was likely olanzapine (Zyprexa). It was commonly prescribed around that time and was notorious for weight gain.

I’m a big coffee drinker myself and have had problems with stomach upset and GERD from time to time and quit. Let me guess, she doesn’t smoke. It seems if you aren’t hooked on cigarettes, you drink coffee.

Has she switched to tea or something similar… you mentioned a mug.

My favorite antipsychotic drug site used to be https://crazymeds.net/pmwikir/pmwiki.php/

There’s still good info there and it’s educational and non technical, but it’s not as well maintained as it used to be. I think the person/persons who maintained it got into some sort of conflict, I don’t quite understand what happened.

Yes, this dreadful disease IS very frustrating. We all want our “old” loved one back, but generally have to get used to the “new” normal. I still get very depressed regularly over the fact that I will probably never see an independent functioning daughter again. She is a sweet person still, on her meds. Today she came to me and apologized for not being like her brothers (who work, have houses, are independent, etc.). That was quite a statement for her. That is the closest she’s commented on herself with insight that she is not the same as her brothers (who are 10 years younger than she is).

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