Anosognosia - does it ever diminish?

Family
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In my case, I calmed down when I was near a stream of water. I’m not sure why, but it put me in a calm mood before the police arrived. I knew something was up because the people who called the police started closing the blinds, I suppose so I wouldn’t see the police coming.

For SZ, I think a better indicator than ‘Sundowning’ is what I’ll call allnighting. I was up for multiple days and couldn’t sleep before a major psychotic break. My diagnosis is SZA, but I’ve heard similar accounts for people DXed with SZ.

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The same for my son, the first warning sign was always that his hours would switch around and he would be up all night.

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So many good things in this thread…not sure how I lost track of it…
The memory thing, or lack of, is interesting. I see this with my MI partner. He doesn’t seem to have much recollection at all of his years I call his ‘constant crisis’ years. Entire ongoing life experiences, engagements, behaviors, generally exquisitely poor choices, hygiene and lifestyle… just gone. Which is hard for me personally because I DO remember and some of it left residual impacts and effects for me and others close to him, and none of it can ever be talked about because of corse ‘that never happened. You’re lying’ etc. etc. I’ve often found myself thinking the same as OldLadyBlue, that it’s a way his mind might be protecting itself from its own traumas. Maybe what was happening for him (and us) in reality was in conflict or contradictory to his ‘internal self identity’, and he couldn’t claim it as it often betrayed how he saw himself and his own beliefs as the true person he identifies as. It’s hard to remind myself that a person suffering delusions will inherently be imbued with the talent of confabulation, creating scenarios of events in their mind or memory to confirm or validate their belief regardless of facts presented that contradict it, it’s not just excuses. And the ‘flip-flop’ behaviors, I call them, that Doyouknow mentioned are very familiar to me also. Chaotic, angry, often violent outburst of all kinds of random nonsensical accusations often followed by running manic out of the house only to happen on a neighbor and suddenly it’s all gone, a completely civilized person having a friendly conversation with the neighbor walking their dog (…WTF?!?.. and my heart is still pounding and my hands still shake and my breath still choking me in my chest because I was trying to remain calm and collected and reasonable…really? Whaaa…wow! My nerves are shot)
On therapy. CBT (cognitive behavior therapy). When I still had my own delusion that I’d be able to get my MI partner into therapy willingly because he’d suddenly gain insight, and maybe we’d be able to find a neurologist or better yet a neuropsychiatrist (fat chance. I was obviously off my rocker) I also ran into difficulty finding anybody who used CBT as one of their modes AND had experience with SZ. In fact, there were none. But I loved how Hope, your son, was able to use this to his mind as a ‘life coach’. He identified goals for wanting to engage and maybe better develop his skills at meaningful relationships for himself. As long as he didn’t think the therapy was because he was ‘sick’. I think I may be coming close to getting my partner to talk to a relationship counselor, as it doesn’t hold him accountable or suggest that it’s him that’s sick, but rather ‘we’ can work on (or me). Baby steps, right? I also thought I should mention CBT is the basis for something called SMART Program. Stands for Self-Management and Recovery Training. It was initially instituted as an alternative for say an AA or NA support but has become widely used for any impulse-based issue like quitting cigarettes, managing anxiety disorders, depressive disorders, PTSD, eating disorders, sex disorders etc. The idea is to train yourself to identify precursor negative thoughts and distinguish them from your feelings and teach yourself then to manage the negative or irrational thoughts or beliefs then rationalize through the choices you make that lead to the behaviors you’re trying to avoid. Kind of like the old ‘just because you think it doesn’t make it true’. This is a globally active and recognized program, has multiple live groups every day, and is available online free anywhere you can get internet. I don’t know that it can be accessed via mobile devices, I imagine for privacy security issues, but it may be something worth checking into. You can get a workbook used on amazon I think too for pretty cheap if you’d just like access to the basic fundamentals.
Finally (sorry so long) thoughts on anti-psychotic meds. The side effects can be pretty horrific, especially with what are referred to as ‘first generation’ AP drugs. Things like tardive dyskinesia (tremors, jerking, involuntary movements of the limbs or face like chewing or tonguing) can be pretty upsetting for both caretakers and for our loved ones. We used Seroquel (a ‘second generation’ AP) for my mother when she progressed into what’s called Loui-Bodies dementia, generally characterized by intense fear and paranoia, (lucky for us she was more often just mildly agitated and non-violent). My partner has a sibling that also suffers MI but has and always has had insight, and uses Seroquel as a PRN (as needed).
Best of thoughts to all of you and stay strong. As always, remember to be good to ourselves!

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Ha, it seems anasognosia/denial is contagious. Seriously, intuitively I see the spectrum comparison and I understand the motivation behind distancing yourself from the illness of a loved one. My brother became ill first, and I was determined not to end up like him, and well I didn’t and I did. I recall in my senior year of high school moments when I was feeling a little ‘spacey’ and thinking I better not tell anyone. And all through my prodrome, I covered up symptoms from my family. When I accepted my illness and started my recovery, my brother was an example of what not to do.

I find the difference between the DX and the caregiver forums on how the communities deal with unhinged posts or posters very interesting. There’s a more of a ‘do not feed the troll’ sentiment here, and I find myself looking into the posting history of people when I disagree or question a post, so I don’t engage. This grew out of past experiences of innocently engaging people and finding a history of fixed fringe beliefs. There’s seemingly more of what I’ll call folie a deux situations here. Perversely, insight into the illness is inherent in a forum where a DX is a prerequisite, and enables more healthy discussion about whether a poster is off-meds, having a bad day or is triggered etc. Frankly @hope I feel you have to pussy-foot around more here, and was hesitant and anxious of bringing up the subject of what I consider an elephant in the room, so thanks for acknowledging it.

Because of this spectrum aspect, I’m often puzzled why caregivers have trouble identifying with some of the symptoms and behaviors of people under their care. To me it’s often intuitively obvious many symptoms and behaviors are shared, just turned up to 11 in the DXed. Oh well, we all have our blind-spots, and I try to point them out and explain them without passing judgement.

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Just really wanted to pull that out -

We woke up one morning to find my son waiting outside for my husband to leave for work. He said “he wanted to show his Dad he wasn’t afraid of him”. We called for a CIT officer, for some reason they sent a SWAT team response. I ended up meeting the SWAT teams outside with their guns drawn as my son retreated into his place when they arrived - I didn’t even know the ATM rule- luckily I didn’t move toward them.

I am so naive, it took me a while to realize that one of the younger SWAT team members was shaking with fear with a gun aimed at me because he was afraid he was going to have to shoot me. (or maybe afraid he might discharge his gun by mistake?)

They made the decision to not storm his apartment and left after seeing my husband to his car.

I left to run in the local park, still shaking from the SWAT encounter - not 15 minutes later my son called asking if he could go into our house to use our computer to print. Just like it was a normal day.

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For me this is the trickiest part of our forum. I shouldn’t be surprised by “folie a deux” situations, given my background, but I was. When I consulted over different questions (and responses that puzzled me) on the forum with my FtF teacher, she pointed out that we had “spectrum consumer” caregivers on the forum. I should have realized, bipolar is in my family, my dad and mom both with spectrum versions, Mom will admit to anxiety to justify her Valium. Two of my siblings are extreme enough to warrant meds, only one medicated so far. I moved my young family away from my family to escape the “fun” of constant holidays with extreme emotions running the show. My brother finally did get medicated just a few years ago in his 50’s - he was self medicating heavily and ended up threatening to kill his boss’ entire family.

My brother was totally surprised by his diagnosis. He wanted to speak with me after his diagnosis and 45 days in a mental health facility, as he knew about my son’s diagnosis of scz (the others of course never mention my son’s diagnosis to me or my brother’s to him). He wondered if I had been as surprised as he was to find out that so many things in our lives growing up were a result of bipolar parents and siblings.

I was aware that my family was extreme, but really, for years I just thought they were bad people. During the discovery of my son’s schizophrenia and all of the research that followed, I did realize that the wild storm that was my childhood at home was a result of mental illness.

Often, caregivers on and off the spectrum, just want handholding or shoulders to cry on and we do have some excellent responders on the forum with consistently gentle responses. Family to Family teachers say we need to focus on moving on with our own lives while helping our family members - I have found this to be a message that is often not well received.

I have been pointing out elephants for many years, its often not appreciated but always badly needed. Please continue to enlighten us and explain and thank you for taking the time.

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47

Yes, my son does the same; can act normal . They wanted to discharge the same day he was admitted once. I refused… said you need to OBSERVE hims behavior longer. Tell him he has to stay… you will see the bad in him come out. Sure enough, they ended up keeping him.

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My son’s pattern was -

  1. episode of overwhelming psychosis, which included screaming, breaking things and threatening me;
  2. a calming in police presence, and self-policing of what topics he would raise with them;
  3. post admission to the hospital, a complete let-down of defenses, but usually no longer yelling and angry. Pacing and incoherent talking. He told me once that the hospital felt like a safe place, I think he felt he could release things without consequences from those Forces that were always watching when not in the hospital.
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I’m sorry, but here’s where I call B. S. on caregivers’ surprise at this behavior and lack of putting themselves in their charge’s place.

Thought experiment: Okay, you get pulled over by the police. Maybe you were speeding or texting on your phone or accidentally ran a red light or were coming home from a party and had a few drinks or maybe you can’t think of anything you’ve done wrong. Do you: get extremely nervous, admit to every possible transgression you may have committed and ask the officer to write you a ticket and take you to jail, or try to project a calm demeanor, admit no wrongdoing, wait for the officer to tell you why he pulled you over, and do everything you can to avoid a ticket and/or jail?

We’ve been conditioned all our lives to be careful what we say around legal authorities and strangers, and other people with power. I don’t care who you are, what your mental state is, or whether you are guilty of anything or not, your behavior is different in front of policemen, judges, doctors, lawyers, teachers, or any authority figure with power over yourselves or your loved ones.

It seems you are faulting people for behaving in a more rational fashion. Wasn’t that the point of someone calling the police in the first place? A policeman’s job is largely de-escalating tensions, hopefully without taking someone to jail or firing a shot, etc. They call them peace officers for a reason. Their uniforms, badges, vehicles, tools, weapons, sirens, flashing lights, loudspeakers, voices etc are all projections of power used to deter and defuse social tensions. And guess what? They work.

Now I understand you might be puzzled if they return to similar previous behavior when officers or other outsiders leave, but this is commonly reported in domestic calls or when social workers visit etc, in contexts where mental illness isn’t a primary concern. Or in the workplace when the boss is away on a business trip or vacation, in school when a substitute teacher leads class or a supervisor observes the class. There are studies that note these psychological effects. One that comes to mind in the workplace is the Hawthorne Effect, but there are many others. In Physics there’s the Observer Effect, and Heisenberg’s and Schrödinger’s work. I’m sure there are examples in Philosophy and other fields. Bottom line is when people are aware they are being observed or there’s the possibility of being observed, behavior changes. Caregivers tend to see the worst behavior of their charges, because they are around them the longest and see them in familiar settings.

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What an eye opener! Nothing major, just basically behaving just like real people. I love it.

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The flip flop behavior has left me filled w anxiety. The behavior after what just took place is crazy. How can we ever be able to process this and at the end of the day find peace.

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Worth also mentioning - my son’s psychiatrist said that the longer my son is in one place or at one job, the stronger the paranoid delusions will grow in that location. She said he collects “proof” of his delusions over time. A fresh start restarts many of the delusions. Moving him when the delusions become troublesome seems to help a good deal.

Edited to say - a fresh start “resets” many of the delusions.

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It is something major. It’s disturbing for those of us who have to process this. ESP. When the immediate family want to pretend they have never seen this.

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Yes, the effect on us can be quite large. My husband and I realized we had been traumatized by the behaviors.

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I think she’s being somewhat facetious, but there’s truth in what I’m saying. I chose to be a bit over the top to prove a point. Think LEAP or you’ll likely spin your wheels forever. You don’t have agree with everything, but you can try to look at things from their point of view.

So you don’t like how it feels when other family members or doctors or police don’t believe you. It’s frustrating right? It makes you angry huh? Now imagine how it feels when you do this to your loved one for sustained periods of time, telling them things they believe to be true aren’t true. Funny, you have more in common than you thought…

The thing is these are behavioral responses to context. In my world these are coping behaviors that can be leveraged into coping in the outside world. In my case I functioned in a job unmedicated where I masked symptoms for a year with supportive psychotherapy, but I spoke of delusions at home and had misperceptions of stimulus in that environment. Eventually as @hope suggests my psychosis crept into my work environment and I came to the conclusion that I should give medication a try lest I lose my job.

Dr. Amador’s approach is largely behavioral. One can be motivated to behave better around police even without insight, because it’s an uncommon situation and the behavior is in your interest. It’s tough to sustain it without medication. For example how long does it take from seeing a police car and traffic speeding up? Not very long huh? Much different if they follow you everywhere you go.

I think it’s possible to be aware of consequences of behaviors, but not the cause. I think we do this all the time. It’s just harder to accept when you know the cause and ‘sufferers’ don’t. The phenomenon is not solely confined to mental illness, however.

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I’ve repeatedly run into accounts of what might be called ‘high functioning’ SZ apparently managing, for the most part, for a long time, perfectly well outside the home, in public, at work etc. sans maybe a bit of social awkwardness or occasional mild ‘eccentricities’ then having their worst episodes at home or when they are with the people that they feel closest or safest with. (Very interesting, Hope, the idea that he ‘collects proof’ of the delusion the longer he’s in one place…) I think that it’s not a matter for caregivers, so much, of not identifying with normal responses amped-up to an 11 or them being surprised at having never seen it before (which, pretending to have never seen it is a bit…odd. To me. I have found it advantageous to be as direct and frank with first responders as possible, but that’s my experience) but it’s more of an extended exposure to intense, scary, violent, or unpredictable situations over time that leaves it’s mark emotionally, psychologically, and physically. Like those kinds of things would on ANY person. I’m ok describing it as trauma, or abuse even in some cases, and I believe we need to consider and take that seriously as people who choose to have our loved ones close. For ourselves. And then the feelings of intense isolation, depression, when we can’t talk to anybody to process it out. Maybe we are experiencing them having episodes that nobody else gets to see. Maybe we are experiencing violence that we can’t talk about because of stigma or fear of harm coming to our loved ones…
A couple of the greatest things this forum has allowed me personally, is that ability to have a safe place to just vent, as someone said earlier just a shoulder or an ear, but mostly being able to hear others’ stories. Everybody sharing their experiences here, and I mean EVERYBODY, however vividly, has been a massive part of me ‘holding it together’ because I’m not judged and know somebody anybody out there ‘gets it’. The sharing of information and resources has been invaluable too. So thank you to everybody here!
As far as healing… I mentioned SMART earlier (CBT-based program) and I had found a group that every time we met opened with “What did you do this week INSTEAD (of getting caught up in the anxiety or the thoughts that perpetuated the depression when you caught yourself in that cycle)?” It’s a good practice. A good question…
Many answers. ‘I walked…I breathed (mindfulness)…I went for a run…I bathed my dog…I planted in my garden…I went to the gym…I pulled out the distributor cap and replaced it in my truck…I painted a landscape… I journaled and wrote out all the thoughts… I rode my motorcycle… I played my piano…I did my dishes…’ Not my bag, but to each their own! The BIG question it’s really asking is ‘what did you do for YOU this week instead of defaulting to the negative or the pain?’ Sometimes there’s no help better that we can give to anybody than the help that we give to ourselves… and sometimes it’s really just the little things. And sometimes, it’s getting to the therapy that we need too.

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@Wisdom I don’t mean to minimize the trauma of caregivers, I feel it every time I come here. I’ve also been a caregiver of sorts since I was 17, my sister and I were talking about associated trauma last week and how it completely blew our minds, yet seems both funny and surreal now. But this is another source of common ground, however. Psychosis can be intensely traumatic. Some caregivers report an amnesiac response in sufferers which is often a sign of deep trauma akin to PTSD. I remember things quite vividly, my episodes haunt me, much of their content are only known to my therapists, but if you dig deeply enough people may be surprised that the ‘important papers’ minimized by caregivers in the ‘gee people with SZ are messy thread’ are notes or journals of their experiences. Perhaps incomprehensible to caregivers, but meaningful to their wards. I know I have a ‘crazy file’ going back to the 80’s.

A common response to trauma is to internalize feelings and this happens on both sides and I agree therapy can be helpful. Loneliness and isolation? Another feeling shared. I could go on, but it’s my premise of participating here. It’s a role I often serve in teams in work environments. I call it ‘playing left field’. Offering a different perspective to those willing to collaborate and work together on problems. To me that’s what LEAP is all about.

The SMART approach is interesting to me as well. It’s funny that’s evolved as my opener in my therapy sessions now, listing positive steps I’ve taken and significant events in my life since the last meeting. Problems and conflicts are relegated to the continuing / old business part of the sessions. I have a axiom I tell my therapists which may resonate with caregivers: I know all my problems, it’s solving them— that’s the hard part.

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Agreed. If you don’t take care of yourself you won’t be able to help anyone else.

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I am so grateful to be able to process what has been happening to my kids and I and make more sense out of it. I have learned some very interesting things and I am also able to see it from an angle I never saw before. I kept thinking I needed to save his life. He’s confused and doesn’t know it . He’s sick and isn’t aware. I see how very frustrating that can be for the person who has this Happening to them and me as his wife keep telling him he’s sick he doesn’t want to hear that. He is also not sick meaning like with a cold going to get better. This is his normal so I need to not keep telling him. I just can’t get him to help and our loved one is causing grave trauma and abuse. But is this the cards we are dealt and it is what it is. Bc I kind of feel we don’t get to pick and choose our family. So are we to just deal with it. He won’t get help. Directly refuses. Says he knows.

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It was weird @RM46 how I felt toward myself when I couldn’t solve my daughter’s active psychosis. I felt as if I didn’t deserve to feel good myself since I couldn’t help someone I loved to not suffer. I did try to take care of myself, but often did the opposite by not eating properly, not sleeping enough and dropping out self care and nutritional supplements. Almost like I was punishing myself for being a bad mom.

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