Forgot to add in here that psychosis is a result of an over load of chemicals just like a hypo in those with diabetes is caused by an overload of sugar in the blood.
The above is what I learned through piecing together research and info I have read and made my own sense of, I have just this which also refers to the areas of the brain I mentioned
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Key words: hippocampus, HPA-axis, psychosis, schizophrenia, stress. ā¦ as well as potentially playing a central role in the devel- ā¦ terol in the adrenal gland.
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Thank you for all of this.
I hope you write a book. I would even try to write one with you because I feel like there are so many facets to truly caring for any human being who needs medical treatment, especially one with a severe mental illness.
I have complex PTSD with dissociative features, somewhat under control at this point, so I understand exactly what you are saying about the subconscious, though I had never framed it that way. To me, when I get ātriggeredā (though I hate that word because then I am weaponized, itās more like being rung or struck), it really is like I am back in the bad experience fully. There is no logic, present moment, conscious thought going on. I become terrified and cannot think or react to what is happening around me; every stimuli becomes painful, even a pleasant breeze on my skin. This loss of contact is so similar to what happens during psychosis that it makes sense there is a physiological basis for the separation from reality. My episodes are simply undefeatable by reason once I am in them, but I donāt usually have delusions or hallucinations driving my behavior while I am completely frightened and out of touch with reality.
We humans are so fragile.
Really interesting. Thank you. I will look up the links.
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My son started out with PTSD ex military, psychosis can occur with PTSD, as well as other conditions not only schizophrenia. If you take psychosis out of the equation the symptoms of PTSD are extremely similar to symptoms of schizophrenia. There are many who have challenged the existence of schizophrenia and I some times wonder myself. Disassociation is a common experience, maybe even a coping mechanism like being on the outside looking in. I think everyoneās experiences can be similar but are also unique to them as rarely if at all do two people have the exact same experience. I know someone who used to pass out or go into a trance when the anxiety overcame here, she couldnāt speak or communicate with you when this happened. She was like this for a number of years, today although she is not a 100% better but slowly she gained power and control over the symptoms and eventually became a nurse, she qualified around two years ago. So the here and now is not permanent. People can and do get through their experiences, it is recognised now that all mental health problems have roots to PTSD. As for writing a book I have often thought about it, I expect if we all got together and contributed our own experiences it would be a great book 
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There really isnāt a book about chronic and persistent severe mental illness for family members in a caregiver or other major support role that is realistic. I am happy that the available books are recovery oriented as I, of course, hope that my family member recovers. 90% of the suggestions in those books are wildly unrealistic in their level of expectation for people in an acute phases of serious mental illness or those who experience persistent psychosis.
We have sets of problems that are not typical.
Also, we have really good experiences with our family members that are not typical. At the same time we are trying to be good family members, friends, and equals we are trying to be caregivers and help our family members access necessary treatment. In the US, there are almost no supports or services, plus super expensive health care which does not cover most of the needed services for severe mental illnessā¦
I think the reason they donāt educate people is because people would wind up in total despair since there is almost no help, support, or treatment available. If we are not educated, we tend to blame ourselves. That was the WORST part of NAMI Family to Family, finding out the evidence-based treatments that would have helped my family member and then coming to the realization over the next two years that, except medication, these vital medical treatments are totally unavailable to a person during first episode psychosis and certainly never delivered in a timely manner that would prevent second, third, fourth episodes of psychosis.
Where we live, the only way to receive a handful more of the numerous vital services (unless a person is extremely wealthy) is to qualify for Medicaid AFTER one has already become disabled. Nightmare.
I really hope you write a book because I would really like to read it.
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When I have thought about writing a book I have the idea of writing it for carers but to include professionals so the professionals get the message so to speak. I ended up being employed to support carers both one to one and support groups amongst other things, although I did prefer the one to one. I recall one home visit I went to, it was the carers partner who had schizophrenia and there was a red alert label on the file indicating he could be aggressive. I went to the house one day and he stormed in the room, shouting "Iām not mad! I must admit he scared me but I remained quiet until he stopped being angry and told him that I new he wasnāt mad and started talking about recovery and the physical side of the condition. He sat and listened to me and every time I went there after this he used to join his partner in the meeting and we would all sit and discuss the topic and I would share stories and what I had learned. From that day onwards he was absolutely fine with me, and to my way of thinking this is how things should work. I do think you should connect to the real person and not the diagnosis, and I do think the diagnosis no matter what it is can undermine self worth and for some they react by rebelling by refusing medication or becoming aggressiveā¦ because they are angry and donāt want to be labelled as being different than everyone else, and they are not different. I donāt want to get on my high horse and go off on a tangent like I feel like doing as I will just have to copy and paste into the book from here haha. I did once have my own website also a carers forum I set up on yahoo they both lasted over 10 years but I have taken them down now. I got to know quite a few carers through my site from different parts of the uk, one being Georgie Wakefield, Georgie has written books, has her own website and has also wrote quite a few poems. This is her website http://www.georginawakefield.co.uk/. The following poem of Georgies is my favourite Called āProudā
My youngest son, Christian John,
Suffers from schizophrenia
He suffers each day in silence
With a kind and gentle demeanour
But look deeply beyond his label
To the baby I held in my arms
To the cheeky mischievous 4 year old
who captured the world with his charms
to the bright intelligent 10 year old
Who excelled at school in his study
To the 12 year old football fanatic
Whoād come home exhausted and muddy
To the handsome carefree teenager
Whoād greet me each day with a kiss
To the son Iād lay down my life for
But the man I was destined to miss
He waded through the torment
Hallucinations and angry voices
Robbed of the sweet years of youth
And denied so many choices
He coped with public ignorance
and the pain inflicted by stigma
Accepting that mental illness
Is viewed as a kind of enigma
Because my son was sent on a journey
There were demons he had to face
Along with painful memories
He struggles each day to erase
Now heās quiet and unassuming
But to me he stands out in the crowd
Heās the son he was always destined to be
And the one word describes my feelings and thatās
āPROUDā
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as for the medications, the reason they try others first is because for some they work and others they donāt and I suspect they are cheaper than clozaril. Clozaril is given as the last resort because of the side effects especially on the blood, they know about the effects on the blood now which is why they have blood test on a regular basis. if the bloods cells are affected this can wipe out the immune system, before they were aware of this some people lost their lives as a result. As with all medications they have side effects, some experience them others donāt, my son has been taking clozaril for 13 yrs now and his blood test have all been clear. So it is all a bit like trial and error.
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I completely agree about connecting with the real person.
How do you start the conversation about the physical aspects of the illness with someone who has been diagnosed?
Thank you for the beautiful poem and the link:)
To be truthfully I donāt really have a particular line I use, but I think what helps is for you to read up on the subject even if you only look at the links I have posted. When you have read and thought about it, work out in your you mind how you make your own sense of it in a way that you believe it. when you approach the subject it may not be in a way that you planned to do it like that day, just through having a conversation maybe about any symptoms your relative is experiencing. I usually include the stigma and how my son feels about this, which is usually about what he thinks others think of him. I also tell him he looks as normal as anyone else walking around and nobody can tell he has the diagnosis either by looking at him or speaking to him. I also tell him by the way he responds to the symptoms he is quite normal. I use comments like its a physical health problem and the symptoms of this affect his mental health and contributes towards they way he thinks when this happens. I will mention that psychosis can happen with other diagnosis not only schizophrenia, peril natal psychosis following child birth I used to work on a maternity ward for 15 yrs and have witnessed this a few times. This indicated hormonal, and another time in my last job while visiting the psych unit and spoke to a lady who had been admitted with symptoms of psychosis, her past history included post natal depression, she had test carried out and it was discovered she was going through the menopause. As I have mentioned previously people can become psychotic as a result of PTSD and I will bring all of this into the conversation, anything you can find that links to psychosis other than the diagnosis already given. I remember once I drew a rough sketch of the neuro transmitters with the brain fluid running in between drawing straight lines from one transmitter to the other to represent how it should work and ziz zag lines to show what happens when there is an imbalance giving out false messages I also drew the brocas and cortex to show how the voices occur by drawing a line from one to the other with an arrow at each end explaining about the short circuit. What I drew had no resemblance what so ever to the brain it was just how I visualised in in my mind. When I explained my understanding of what happens, my son got it and made one big sigh, like a sigh of relief! The only thing I will add you will probably have to keep repeating this at different times and keep saying the same thing. But its worth it in the end
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Thank you Sasone for your insight. I donāt get on here often enough. After Clozaril we went to Envega shots once a month. She rarely hears voices, and is learning to tell me when she needs a klonopin. She is also on lithium which Iām concerned about. Both contribute to weight gain. I control the meals with her preferences in mindā¦we both love vegetables fruit and fishā¦and we walk every day the weather permits. Wish your son well, exersize helps the mind and body.
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My son was taken off AP Abilify 15mg at our request. It was stopped over a 2 week period which is ludicrous. Ive learned since a 10% reduction per month would have given best chance of stopping these meds.
He too suffered rebound psychosis.
I so regret not researching thoroughly but I trusted his psychiatrist at the time.
Beautiful poem thank you for sharing that.
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It has taken my other two daughters years to understand their sister illness and suffering. My mother and sisters have always been very kind and supportive towards my mi daughter. My take on her sisters are that they were very afraid of what they saw and perhaps ask themselves - is this something that can happen to me. Itās easier for the sisters to see her as causing her own problems. Eventually life has a way of catching up to reality. Both of the other two daughters have had their ā come to Jesus moment.
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My two brothers are good with my son, and will do things with him, his two brothers donāt do anything with him. I once asked my second eldest son, when I am no longer here would he look out for him and he point blank refused. That hurt me to hear him say that, although my youngest son has recently bought a house very close to where I live. He said he did this so he could be on hand for his brother when myself and their dad are not hear. The youngest son has always been close to the son with schizophrenia, being his big brother. The second eldest did get worried that he might get a mental illness because the older son had it, as there has been references to genetics being involved. So maybe you are right in thinking that your daughters could be thinking that its something that could happen to them, just like one of my sons thought! Although I must admit if you give it your all in caring and supporting, it can take over a big part of your life.
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@sasone2one " though I must admit if you give it your all in caring and supporting, it can take over a big part of your life.+
You are so right - āit can take over a big part of your life.ā Iāve been at it for about 15 years. In the beginning I thought I could fix everything but my daughterās mi is insidious ā it has affected almost every part of my life from my job (Iām now retired), my marriage and my relationship with my other two daughters. Iāve reached a point where I canāt do it any longer so Iām so relieved that she is in a group home and not on the streets (my biggest fear). Now my focus is on raising her two small children. Both children are such great kids ā they are funny and make me laugh a lot and also at times I think about all the mistakes I made in raising my own children and very motivated to not make the same mistake. Raising grandchildren keeps me busy 24/7.
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Ditto, caring for my son has affected all aspects of my life in the same way it has affected yours and no doubt all parents who stick out the ride. Although my son still lives with us 20 yrs later, he refuses to mix and socialise with others outside of family so he basically lives in a bubble. My marriage lasted but there were a few times I thought it wouldnāt! As relationships go when I look back this area of my life has also been affectedā¦ because I stood by my son and would do the same again. As for those mistakes you mentioned, we can all reflect back and think maybe I could have done something differently. I think thatās about being older and wiser, they say we learn from our mistakes. But what ever mistakes you feel you have made, this has no bearing upon your daughters diagnosis. I think we all think its something we have done wrong that is responsible for our kids becoming unwell, especially in the early years. When we make mistakes it is not something that is done with intent or deliberate, thatās why its called a mistake!
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Look up NAMIā¦They have a 12 week education class called Family to Family that covers lots of related topics and education on each mental illness. They also have good resources.
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