My daughter was living in her car, then she was in jail and the jail workers wrote in her file that she hits her head when she hears voices. But she never admits to hearing voices and that anything is wrong with her. She was hiding from doctors for a year and she definitely had a cognitive decline. She was very highly educated but lost everything, her career, all moneys, her car was impounded and she lost it and all her stuff in it till the last panties. I am just wondering how could she deny her illness if she hears voices? Does she want to talk to them? She is in a hospital now, but she is physically abusive. They want to get rid of her, just waiting for the covid restrictions lifted.
Good question , i ask the same about my son , even if they hear voices they deny their illness and my guess is that they dont want to admit they have a mental illness as it is stigmatised . I have also watched a video with someone with insight and she said sometimes she doesnt have insight during a mild psychosis . Its a guessing game , very difficult to challenge . If i try to discuss with my son about it his mania erupts so i keep quiet as long as heās med compliant . I have never heard my son talk with stimuli but often hear him laughing with the stimuli . Hang in there , she needs you , remember its the illness that causes all the craziness not her . Love her and support her all you can as its so important for her recovery .
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Look up anosognosia. Itās often a feature of the disease.
From personal experience, your mind does whatever it can to explain what it perceives, and tries to prop up your ego by telling you itās normal or that the experience makes you special in some way. For me, it was the FBI surveilling me, yet I thought I could hear bits and snatches of what they were saying and I intuited the rest. Voices might be thought of as āspiritsā or āangelsā or ādemonsā or God or the Devil speaking to you. Maybe itās space aliens or you think you are psychic and you are contacting the āGreat Beyondā. Itās very real to the person and itās very distressing and ineffectual to try to argue them out of it.
Donāt chase your tail trying to apply your outside āreasonā, you will almost certainly fail. Watch the following video, it will explain anosognosia and better ways to communicate with sufferers.
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Linda, thanks. I love my daughter, but she lives alone on the other side of Canada. She cannot work and receives her disability pension there. If she comes to my city she needs to go to a psych doctor here and she wonāt do that. She lost her family too, her husband and their son. She is violent. Its impossible to live with her. I am wondering if she will get her driverās license back. Her doc took it from her. She lost everything and still she does not want to take her medications. If only she was not violent and resistant with meds we would take her to live with us. We support her financially.
Dear maggotbrane,
Thank you very much for your explanation. As you definitely have the insight into your disease are you very upset about having it? Were you devastated when you realized you were sick. I am asking these questions because I try to understand my daughterās refusal to come to terms with it. I wonder if she is as devastated as I was when I was diagnosed with cancer and have to fight it for years. She was successful in her medical career and she lost it too. I just dot know what to say to her to make her take the medications.
Do you care about your family? My daughter never did. I thought that she was a psychopath from her childhood, but she was academically very efficient. Now she is low functional.
Thanks again for your help. Your explanations gave me some comfort and a hope that things might get better.
@Mypreciousdaughter, initially I didnāt accept that I had SZ or SZA, so I wasnāt devastated or upset at all. That would have been a complete non sequitur. I knew I had a problem, that the FBI was apparently following me, and might incarcerate me so I tried to convince my family to support me turning myself in. When that failed I started seeing a Jungian psychologist, yet refused to take medication. The thought was this might help me with the FBI down the road.
I was frustrated and angry with the situation and my loss of agency and my inability to convince anyone of my delusions. I tired of people constantly contradicting me, telling me that I was bad, wrong, too emotional, not emotional enough, everything would change if I just took medication etc, I perceived it as being put down, devalued and oppressed. At times I thought family members may have been in on the conspiracy. I was also confused and puzzled why the FBI was following and persecuting me. My guess is your daughter is stuck in this mode of thinking, and as such just doesnāt believe sheās illāfull stop. No denial, no devastation, no upset, her brain just doesnāt process or accept anything is wrong or her diagnosis. Thatās Dr. Amadorās point in the video above, and I think the sooner you understand this, the better.
Because I lucked my way into a LEAP-style recovery, accepting my diagnosis is in complete opposition to your expectations. It was a turning point in my recovery. It defined my recovery, but not me. I never call myself āschizophrenicā or āschizoaffectiveā, nor do I allow others. I have a disease, it doesnāt have me, and I am not my disease. I think defining yourself or your loved ones as such is harmful, stigmatizing and limiting. I am proud of my recovery-- not my illness. I know myself and my illness well, because of my experience-- not in spite of it.
There are details to my recovery which worked in my favor. I donāt believe I was ever handed a diagnosis until I was discharged from a mental hospital even though I saw my psychologist for a year prior, with a single visit with a psychiatrist I thought was grossly incompetent. They both probably told my mother my diagnosis, Iām not sure. We never discussed it in these terms. I had some problems and I was working on them in therapy. My parents might have preferred I take medication, but supported me seeing my psychologist.
I didnāt fully accept a diagnosis until a while after hospitalization, when I came to the conclusion I would likely lose my job if didnāt begin medication after consulting a more competent doctor. He didnāt give me a diagnosis either, he just prescribed a single AP drug and had no real comment on my prognosis. Somewhere along the line I forget exactly when, I told my psychologist I identified as having SZ. She calmly said, āoh, what makes you think that and what does it mean to you?ā Neither my psychologist or psychiatrist had pathologized my condition or made any mention that it limited me in any specific way, and we identified and tackled (or avoided) challenges. I viewed it as a problem to be solved and I set out on a recovery strategy.
There were points when I despaired the impact of social stigma of the disease, but not the disease itself. And recovery was definitely hard and a lot of work. There were plenty of times I wished I wasnāt challenged by my disease. But I didnāt see failure or giving up as a viable strategy, and no degree of wishing or silver bullet seeking would make it go away.
I have a fairly warm, but not particularly emotional, relationship with my family. My parents are aged, but still alive. For a year or two in recovery I would attend NAMI meetings with them, but we eventually moved on and didnāt need that support. Iām in touch with my siblings and am closer to some than others. Iām a part-time caregiver to an older brother who has bipolar disorder. While I employ some LEAP strategies in dealing with him, I canāt say these are as successful as Iād like.
I see a few common mistakes youāre making in relating to and understanding your daughter and her behavior.
First, you may think you are āputting yourself in her placeā but youāre not. The exercise with the audience member in the video demonstrates this dynamic. What you are doing is a form of projection. How would I respond were I in her situation? For starters, you arenāt her: you have different values, different experiences, etc. More importantly, your brain is not impaired. i.e. to my and your knowledge you donāt have schizophrenia. Only she knows how and what she thinks and feels. Specialists like psychiatrists and psychologists, and people like me whoāve experienced the disease may have better guesses of whatās going on with her, but ultimately sheās the only one who knows.
Thatās why the first step of LEAP is Listening. Donāt assume or project how your daughter thinks and feels, patiently and persistently ask her. And try not to ask leading questions, like āWere you devastated when you realized you were sick?ā Emulate Sergeant Friday-- just the facts, maāam. Better to ask āHow did you feel about how you came to your present situation?ā You want to ask neutral questions that donāt force your interpretation and values onto your subject.
Second, in my experience, when SZ (or SZA in my case) manifests, you are forever changed. You are not the same person any more. Your brain is changed or ādamagedā by the illness. Think of this more like a stroke where with treatment a sufferer may or may not gain some facilities back, and even if they may appear to be their āold selfā that person is actually gone. Iāve done some reading on neuroplasticity lately, because it may have factored into my recovery, and thereās a common misconception that the brain adds onto itself to heal, but a more accurate description is it destroys itself to rebuild and adapt.
In your context, maybe your daughter isnāt capable of doing medical work any more, or maybe sheās changed as the result of her illness and she wouldnāt enjoy or value that work now. Stop trying to see her as who she was, and see her as who she might become. For example I wanted to become more social and work with people in my recovery. I even asked my employer if there were opportunities to pursue this, but I furthered these goals outside my workplace. I also considered retraining to become a āmental health professionalā in some context, but I decided there was too much schooling involved and it didnāt pay nearly as well as my trained profession, so I looked elsewhere-- namely this forum.
Third, you need to be realistic and incremental in goals you eventually share with your daughter. There are accounts on this forum where a first step was getting her daughter outside of her room for some of the day, and from there maybe getting her do go on walks with her and then maybe agreeing to take medication, then getting a job etc. And be aware SZ thinking wonāt necessarily seem logical to you, and thatās okay as long as you get results. For example thereās one LEAP practitioner on the forum whose daughter takes depot medication injections, but doesnāt accept that sheās sick. In this case, does it make sense to force the issue and point out this inconsistency? No! In my history, good decisions that led to recovery were consistently practical (and impractical) decisions based on context rather than logical consistency.
I started seeing a psychologist, because I thought it might help me with the FBI. I got a job through a contact of my fatherās because my mother insisted on me working if I lived at home. I didnāt turn myself into the FBI, because my parents didnāt support it, and I thought it might jeopardize completing my degree, and I took classes to further that goal. When I was fully psychotic, I trusted a sheriffās deputy because she wore a star that figured into an internal mythology, and she brought me to a mental hospital. I signed myself into the hospital rather than being commited, because it happened on a Friday and I knew they could hold me for 72 hours regardless, so the outcome would be the same whether I signed in or not. I decided to start medication, because I feared I would lose my job. I took up singing and eventually acting, because I thought I was talented and might become a āstarā in some capacity. And so on. My point here is I made pragmatic choices to further my goals, I was very lucky, and my parents supported me. They didnāt try to force a specific agenda. These were my choices, but with support and input from them. And because of this Iāve been self-sufficient for over 30 years.
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Maggotbrane, you are invaluable on this site. You even donāt know how much you are helping me.
My daughter has a strong desire to get back into her profession and I support it, but her behavior makes it unlikely. I think that she believes that accepting the CTO (community treatment order) will kill her chances.
As a result she has more loses. When I tell her to agree to the CTO and you get most of what you lost she gets mad at me.
I would like her to stay as long as possible in the hospital now that I donāt worry about her car in the impound. (They charge $60 per day).
The doc took her license away indefinitely. She was violent with the hospital staff. I have a scientific background, so I read different studies. It looks like higher oxidative stress and lower pH in the brain might be harmful.
I think I am intuitively doing what the LEAP method is suggesting.
I might have more questions in the future. I am glad that you overcame the inosognosia and get your life under control
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Thank youā¦
@Mypreciousdaughter another detail you seem intuitively realizing is that thereās a bit of a mourning process that you and your daughter would go through for her old self to hopefully rebuild anew. The anasognosia will make it harder for her, and you seem further along in the processā likely again because your brain isnāt impaired. This doesnāt mean sheās incapable of moving on, or you wonāt get stuck too.
It often pains me to see people stuck because they canāt find their way out of the maze. To me the symptoms of SZ were part of a process that led me to recovery. Part of the problem in my opinion is how people look at things. For example I āheardā or misperceived or intuited the voices of FBI agents presumably in the apartment building next door and I tried to communicate and reason with them in various ways to convince them to go away. My relationship with them changed over time from thinking of them as oppressors to calling them āfriendsā. I even made an acronym for themā āFriends Being Interestedā. I got to a point where I didnāt need them anymore, my delusional world became smaller because my real world became bigger. And it took a change in how I thought about them (and myself) to achieve this change in frame of mind.
Maybe I have an intuitive tendency to think this way. When I returned to my parents house as my SZ and delusional systems manifested, it was summer and I helped my mother build a pond in the backyard. When finished, she filled it with goldfish. Fall came around and the goldfish got bigger and the leaves fell and kept getting into the pond. My mother took some extra window screens and covered the pond to try and keep the leaves out. A day or so later, the goldfish all died. They were poisoned by the metal in the screens, and my mother was despondent. She said building the pond was supposed to be a healing process. I thought about it a moment and said death is a healing process. This apparently was the right thing to say at the moment, but was also very true.
She restocked the pond and we took the goldfish inside for the winter and they spawned. Later they were hardy enough to last the winter. My sister gave her a cat and we jokingly called it our cat feeder. And so on. My point is how you and your daughter think about her problems or illness or whatever you want to call it is as important or more important than the illness itself.
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this is one of the most beautiful posts I have ever read! You are amazing and so insightful. This will help a lot of people! Perception is key. I agree 100%.
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I call my daughter every 2-3 days. We live on the opposite ends of Canada. Today I called her again as she is in the hospital for more than 2 months (medicated). Today she finally explained to me her philosophy and I finally understood it. If I donāt try to find out about bad things they will not happen. I should call, ask or find out only about good things, then they will happen. If I worry about problems these problems will materialize. If I forget about them they would go away.
Thatās why she forbade me to inquire about her car in the impound, or to inquire about her bank account.
Now she demands from me to pay her professional fees for which she has no valid license or she would never talk to me. How do I deal with such demands?
Hi, my daughter has schizoaffective disorder. Sometimes, she would tell me that she is happy that I didnāt go along with her demands when she wasnāt well. Best wishes.
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Whenever Iām unwell, I think that I am just waking up to being enlightened and that Iām basically the last to realise the true nature of reality
I believe Iām being mocked by everyone whether that be ravers outside my window giving me mental abuse through telepathy right through to being in mental health ward in hospital because it was a facility to help those struggling with enlightenment in the sense of a Buddhist retreat centre. If Iām in the regular community in the outside world where no one sleeps but to enter each otherās dreams or that Iām in a block of flats where the other people in the block are all in on it
Basically what Iām getting at is that everyone around me is better at telepathy and communal thinking than I so I canāt enter their mind but They can enter mine
When people tried to help I felt threatened because I thought they were concerned for me because they could see me failing before their eyes.
Their sympathy terrified me because it made me a failed and doomed or something vaguely like being taken away to die because I had failed
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Hi Three, Thanks for your honesty. That sounds really distressing to constantly feel threatened and mocked. You said this is what it feels like when you are unwell.
How is it for you when you are feeling well? Do you have moments or period of feeling well during the same day or weeks when you are having distress. What do you do that makes you feel more at ease?
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Hi
I have also had periods of time when Iām not paranoid when unwell, simply on some kind of fear of dying of cancer, but feeling spiritual towards the other patients.
Iāve been in remission for 14 years. When Iām well, basically have few really obvious symptoms
Other than if Iām going through stress, I might get a slight wobble but only for a few hours
Itās hard to say what Iām like when Iām well
Age 20 I was living with my family, going to uni for 1 yr, coping socially, although only with my one friend and not coping academically really either ā¦ a year prior to that I found one shift a week in a charity shop and lying around was all I could doā¦
There is also the period of time just after an episode really seems to last about 3 months where Iām at some sort of in betweenā¦ like I might at worst see and hear stuff that was very convincing only a month earlierā¦ the symptoms are slightly more moderate and there are moments when I have to fight.
That isnāt usual for me
Iām usually compliant, the one time I tried to go without meds my whole world collapsed on and off for a year and subsequently another year
When I am well I usually still have voices a few minutes at a time once or twice for 5 minutes or so
This has got less over time
Iām 45, I met my husband 14 years ago, and basically I function just capable of less, Iāll never work full time or study more than a day a week
I exercise sometimes quite a lot with a lot of encouragement
I do all cooking washing cleaning shopping and really enjoy itā¦ my husband and I both have mild autism, so we are both gentle souls, and I can cope.
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Sorry just rambling on
I have times when Iām half unwell yes, but that isnāt the normalā¦
How is your daughter at the moment?
I Used to cope by striving ā¦ I wanted to see if I could beat my illness, be better than most, high achieve
It ended me up in hospital a few times, through stress
I have occasionally had half day long psychosis but this is not the norm.
Once every couple of years or so if I have too much āgood stressā like a holiday and lose it completely
From the outside I go quiet
For about 15 years I had an enduring psychosis which I would go in and out ofā¦
Being told to do things or say things that were told to me by breathā¦
When first unwell And before hospital became necessary I was capable of going to school and switching it all off for a few hoursā¦ taking the tube in was a telepathic nightmare
The things that help?
No expectations
Non judgemental love
I suppose acceptance, being listened to, encouragement
Encouraging only if itās appropriate to how I amā¦ like not to get off my buttā¦ that is only helpful if Iām 100 percent well and need a push to dietā¦
Or to do something I wanted to do, like go running, my mum was very much my coach, lots of lifts and waiting for me to finish, even if that was 10 miles later
Doing something basic helps, like charity shop work, or youth club for 2 hrs a week
Yoga used to helpā¦ the one thing Iāve done extensively without encouragement I just loved itā¦ until I did kundalini yoga and met my soul, canāt do it now
Working with the soil always helps, ! farm work or gardening or outdoor park upkeep or tree planting or gardening at a meditation retreat centreā¦
Iām sorry but there is probably a lot of grieving to do.
My sister has said to me that I was a burdenā¦ that is very true
Antidepressants might help
I didnāt want to be on a cocktail of meds so seriouslyā¦ but 10 years of depression later I was given them because I had about 1 good day out of 7
The psychiatrist called it lack of joy and itās enough to need antidepressants
I think it made me less anxious as well
Depression is a recognised part of the illness
My youngest sister has been psychotic for 7yrs, she lives with our 77 year old mum Most of that time she shouted at mum for hours most days because of how alcolic she is
She quit 6 months ago
Our middle sister had onset about the same time as me, she deteriorated fo4 12 years and after spending 2 years on a psychiatric ward was killed by a car on leave
I know this illness from the inside and the outside and I still have so few answers
I hope I can help with my story. Iām still bad at giving direct help
@Maggotbrane and @three.
Are you guys always on meds even in remission. Is the dose lower or the same?
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Not always, there have been times Iāve flirted with not taking medication. If Elyn Saksā memoir The Center Cannot Hold is typical, I think a healthy portion of āhigh functioningā people with SZ attempt or experiment with this. In my experience psychologists and psychiatrists canāt tell or donāt question if you are medicated as long as you seem stable and continue to come to sessions.
In my case it always seemed to catch up with me one way or another and I would resume medication. Iāve never relapsed to the point that I require hospitalization since my first visit, my coping mechanisms, symptom masking and self monitoring are pretty good. Iāve been through 5 different AP medications and aside from one time when my dosage was decreased after a year or so on my first typical AP medication, dosages tend to either go up or stay the same.
My dosages tend to the lower end of the scale, and nowadays the ACA mandates that AP medications are āfreeā for my insurance. My present medication has few side effects at my current dosage, so taking it seems cheap (or free) insurance.
My take on desires to go off medications for high functioning folks with SZ boils down to a grab bag of motivations: side effects, inconvenience or cost; ego as in, Iām better, smarter, etc than my disease so I should be able to get by without it and can self monitor and start to take it if necessary, and maybe I was misdiagnosed or have spontaneously recovered (thereās observations of this effect in some studies). I think regardless of your coping abilities, taking meds is cheap insurance. The benefits far out way the costs.
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My tack would be to say youāre sorry, you tried, but they wouldnāt take your money because her license expired. And youāre sorry to have to give her this bad news but you did your best, and you know it was important to her. Sometimes it can help to feign anger and frustration at āThe Manā thatās keeping her (and you) down. Dr. Amador often mentions itās okay to say you are sorry when you get things wrong, that studies say these apologies will likely be accepted.
When I worked in food service years ago, parents would say that the Coke machine was broken, but their kids could have juice or water, etc. Since parents paid the bills, Iād play along. This is a more elaborate version of this game. I think itās entirely fair to exploit cognitive and other deficits for the greater good, and Dr. Amadorās methods do so without him elaborating on how and why they work.
He suggests delaying and promising youāll give an answer at a later time when you get cornered into a difficult question or ultimatum. I suspect the gambit is a subject might forget due to cognitive deficits of memory or racing thoughts and other distractability . Avolition and poor executive planning could be exploited here too. The listening and empathizing part of LEAP favor a āreporterā style of interaction. Letting them tell their story by asking neutral open-ended questions and repeating it back to them to make sure you get the facts straight and then reinforcing it by empathizing the emotional content serves to feed ego needs of telling their story, feeling heard and understood and feeling respected. It also gives them an opportunity to articulate and organize often jumbled thoughts and feelings in ways they may not be cognitively capable of on their own. I suspect the process may make inconsistencies and paradoxes in their stories clearer to them and lead to better insight.
From my experience police and other responders seem to know these tricks and more. When I was in a psychotic incident I felt I got āplayedā and there wasnāt much I could do about it. Without going into too much detail, I was trespassing and perhaps causing a disturbance and by asking questions and listening people were able to get my name and address and from that were able to contact my parents and my psychologist. And I talked to both on the phone, but they were unable convince me to leave. I donāt recall the mechanics, but in my confusion they were then able to get my keys. Later they conspicuously drew shutters. Not long after that, a female deputy arrived and asked me to leave. By then it sounded like a good idea. I complained that the people had my keys and the deputy asked if I owned my car, and I said no, my parents didā so she said there was little she could do. Checkmate! My mother then arrived on the scene and I was offered a choice: leave with her, or with the deputy. I left with the deputy.
In writing this, I realized how similar the process is to police interrogation techniques and how they sometimes can lead to false confessions. If police donāt know or donāt care that a subject has a SMI, they can exploit their cognitive deficits and Agree and Plan their way into a confession. Of course Dr. Amador is all āgood copā and aims to train caregivers as the same, but putting his methods in a different frame may make the dynamics of the situation clearer to budding practitioners.
Caregivers have a tendency to throw up their hands and think they are helpless in these situations, but they have more power than they realize. They think more clearly, they have more resources, they have friends, family and doctors and lawyers and such who may support them. As with the police, these are power games and understanding the strategies and dynamics involved help find opportunities to Agree and Plan to exploit their charges weaknesses for the greater good.
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