Family and Caregiver Schizophrenia Discussion Forum

Why are Family members and those diagnosed with schizophrenia not educated on the subject?


#1

I have been supporting my son who has a diagnosis of schizophrenia for the past twenty years and can safely say for about the first ten years it was a bit of a nightmare. I have read some of the post on here and can relate to everyone of them and even feel the pain family care givers go through, because I know exactly what it’s like.
Your son or daughter is given this diagnosis, drugged up so they appear stabilised and sent home in the charge of mostly parents. All you know is what medication they have to take and the dosage, but nothing else. You are left to deal with something you don’t really understand or how to help your loved one. When you ask anything you are told its confidential and come up against a brick wall. Thinking back on this and the lack of support caregivers are given, I think this is disgraceful, in fact I know it is!

As parents especially mothers there is an inbuilt instinct to want to fix something when your child (adult or not) is suffering or has problems. But with this diagnosis you feel utterly helpless, and we are because we haven’t been given the tools to know what to do only to keep feeding them medication.

This used to torment me, so much so I started researching on the subject and also the physical side of what happens internally to cause the symptoms. I also attended many seminars in different parts of the UK plus some one off course. Joined groups which had both caregivers and those with schizophrenia and also internet forums. Over the years I learnt quite a lot and included my son in all of this, gave him information and also stories about people in recovery. I also explained about the physical side involving glands in the body and brain. It took a time for him to take these things in, but with patience and perseverance we got there. The one thing I always questioned was these symptoms do not come from fresh air, something physically has to happen within the body to cause them.

Then there is the person who has been diagnosed we have to consider, we know as parents the pains and distress this causes us. But what about our relative? There is the stigma to deal with, they have grown up hearing this throughout their lives, what I could see in my son is that he internalised this. What he had grown up hearing he felt everyone looked at him like this. Some of the voices he heard were calling him a nutter or loony, day in day out, and other things that deeply distressed him. Its the stress that feeds the symptoms, talking and listening even reasoning with logic helps but never dismiss what the person thinks or feels. Because I talked and listened to my son a lot and heard not only about the voices but also visual hallucinations, I tried to change places with him and imagine how I would react if I experienced the same and believed it to be reality. When you try to look at it this way, you may see that the way your relative is acting or responding is quite normal, relaying this to them giving this understanding also helps.

When you think about it, it really isn’t right or fair that we are just left to deal with this alone, neither is it fair on our relative. If they had a recognised physical illness and needed equipment to be cared for at home, you would be shown how to use the equipment or maybe how to give injections if needed.


#2

@sasone2one So well said and I couldn’t agree more.


#3

Thank you for your insight and hope.


#4

There is hope mom2 even though in the early years we cant see the light at the end of the tunnel. I got my hope about 3 yrs into my son being diagnosed at one of those seminars I mentioned. When both myself and son listened to a story about recovery from a person diagnosed with schizophrenia. Nobody even mentioned recovery before, but this gave me the drive and determination to take on schizophrenia it wasn’t going to have my son! This person had been through the system and came out a bit of a rebel, he married a nurse and they set up a business teaching and spreading the word about recovery. His name is Ron Coleman from Scotland UK if you google his name you will find his website one of the books he wrote was 'Recovery an alien concept" among others. Recovery doesn’t neccerily mean cure but a far better place than the person is in the early years. Where they manage the symptoms a lot better, my son has got there. He has gone from someone who would not go to the shop 2 houses away, or walk up the street, to learning to drive, go to the gym and watching local football team play, his uncle goes with him, and out and about in the car. Although he is not good with socialising, he is a placid and kind hearted soul. He used to use alcohol to cope, but hasn’t touched it for 13yrs now,after I was forced to give him an ultimatum.


#5

Thank you Catherine. Also I have just read you profile and agree with you about being proud of your sons. We all experience both different and simular journeys and its good to be able to give others hope of a good outcome eventually. There wasn’t much of this around in the early years of my son being diagnosed, especially from professionals who I had the most contact with. Xx


#6

Sasone2one I so appreciate your words of hope. I just read them again to my husband. I just found this forum and the timing was perfect.


#7

mom2 reading this to your husband is exactly what I used to do. Try reading it to your son or daughter and give them hope. The hope I gave to my son is what drove him to look to the future, it was possible to get out of the hell he was going through. I remember vividly on one particular day about 10 yrs down the line him saying “I have to think my way out of this”.
Looking back I really wish I knew more about this diagnosis but professionals keep us separate. Don’t get me wrong I have gotten along with every psychiatric nurse my son has had, the problem was the barriers the system causes. And they never seemed to listen to anything I said after all of the research I had done it meant nothing. So I did something about it, I heard of a course that was going at the local college and enrolled, it was a level 3 qualification in mental health care, equivalent to an undergraduate qualification. I went for it and was the only non professional on the course, and I passed the exam 18 months later!! Part way through the course a position came up for a carers development worker in the mental health services, I applied for it and got it. I often worked with both the caregiver and their relative attempting to educate them too, although the part involving the relative wasn’t actually in my job description I mainly worked alone so there was nothing stopping me. haha… I worked there for 10 years


#8

Thank you I will do that!


#9

Thank you for your story of going bAck to school. My daughter was in college.At this time she can’t see a future for herself and I feel I’m her main cheerleader and goal setter. At her treatment team have very low goals for her-I’m not willing to settle for that.


#10

Hailey, having those low goals from a professionals point of view is taking things slowly. I know this can be very frustrating and everyone is an individual so for everyone to be treated the same doesn’t always work. But giving hope and encouragement is the best medicine, things wont necessarily work out as quickly as we would like, recovery does take time. I don’t blame you for not wanting to settle for low goals for your daughter, every parent wants the best outcome possible for the son or daughter. You know your daughter and know what she has been capable before her diagnosis, something the person doesn’t lose after the symptoms appear. I am speaking about academically the person doesn’t lose what they have learned, what I found with my son is he would make progress in small steps often taking two steps forward then have a blip (I always referred this to blips because I got to know that it would pass, but his nurse would say he had a mini relapse but I still stick to the word blip) with the blip he would go one step back. I always looked at the one step back as still gaining one step forwards. So each time he had a set back all wasn’t lost, even though these blips happened along the way all of the one steps forward he gained slowly added up. When he had a blip I would take a step back for a while to allow him to settle down and then slowly start encouraging him again. Its really about not giving up but at the same time not pushing too hard. This is what I have learned from my experience. BTW I was 50 when I went back to college, so its never too late to learn no matter how old we are :slight_smile:


#11

Thank you Sasone2one. Your reply and experience helped me so much today. It has been a hard morning. I went back to school in my 50’s also. It is ironic that my choice of study was Special Education. Worked mostly with Behavior Disorder population. Now I feel lost, at times trying to pull up what worked on a more rational person. What helps me the most is to remember it is still all about being calm, descalation, sometimes just hugging her tightly helps. I like your “blip” term rather than relapse. You helped remind me 3 years trying to find right medication is not a long time.


#12

It does take a while to get the best combination of medication for an individual as what works for one person does not follow that it would work the same for everyone. All medications have side effects and again not everyone will experience the same side effects. One particular medication had a side effect of vomiting, and this is what my son got. At the time he was in the depths of psychosis he never left the house unless someone was with him. He started thinking someone was poisoning him,and avoided eating, even water would come up. A year down the line he turned to alcohol so the more that went down the more came up and i am in no doubt the medication came up with it. I suspect from the beginning of the vomiting before alcohol was involved his medication was coming up and the reason he wasn’t making progress. Long story short, again nobody would listen to me, even though I kept pointing out the side effects, so I went to the director of mh and kept on pestering him until he did listen. This was a turning point, the nurses started working with me and listening it was from this point with medication changes that my son started to move forward. So I would suggest all caregivers follow their instincts and learn about the medication. I can understand that lost feeling Hailey psychosis is as confusing for us as it is for our relative. I felt totally lost and in turmoil in the early years for me it felt like I had lost connection with my son. But now I realise he was there all of the time and schizophrenia is separate to who the person is inside. I now refer to schizophrenia as it, I do not like the term schizophrenic as to me this attaches to the person as an identity. It is not who my son is, he has a name and personality that makes him who he is.


#13

well said I stumbled on the orthomolecular treatment approach by accident. been several years on now. I think it does help, but certainly isn’t a cure. he fits the ‘high functioning’ definition so some days aren’t bad - but then there are the other ones!! we all know!! I’m pretty much a my way or the highway type. but still have massive depression days worrying about what happens after me i’m 75. we don’t have any real social circle to help him out after me he is dyslexic as well so will always need a payee for ssa, help with bill paying etc. forget family and govt services are scarce at best. I just don’t know what to do but just keep plodding along day after day.and trying to have a meaningful conversation about the future doesn’t work. but I know it could be so much worse. a difficult situation for a control freak!!


#14

I know what you mean about the worry of what will happen to your son when you are no longer here. I think this is a common thought with parents in our position. I certainly think about this quite often, although my two brothers spend time with my son they are near my age. I cant say family outside of this would step in, my son has made it clear he wouldn’t want to live alone and said he would find this depressing himself. Which I can understand as he doesn’t mix socially with anyone outside of family. As for government services there isn’t much they offer except medication so there is nothing there to fall back on. Your comment about your way or the highway made to smile, but don’t agree with your last comment that this makes you a control freak. You know your son, you understand him and know what does and doesn’t work, you will know more about your son than any professional could or ever will. Just like I know all of these things about my son as do other parents know about their own children…adult or not. The longer we are in this position or situation the more we learn and understand what we are dealing with, and what works, what doesn’t work and what causes harm or distress to our relative. And this makes us EXPERTS by experience!!! We don’t need a degree, we have something more than any degree could teach us… So your way or the highway is exactly how it should work :slight_smile:


#15

Sasone thank you for your encouragement. I understand the frustration of a parents intuition and not being heard, that must have been a very hard time for all of you. My daughter’s treatment team is very helpful. I have to be careful because I think I have made at least two very poor med suggestions and they backfired. One was Abilify, my oldest daughter said it gets great reviews, so my Dr agreed to try it…and ended up in the hospital. The other was Risperidone. I’m learning the more I read that some medications are toxic for some people, and my Dr agrees. So that led us to Clozapam…She is 4 weeks in and tomorrow she has appointment to see an onacoligist because it killed a lot of white blood cells. I have faith she will be fine…I just do not know where we will go from here.


#16

Hi Hailey all medications have side effects some worse than others, although I have never suggested a specific medication I did once back up my sons request to come off them, as at the time he Ws engaged to be married and the side effects, one being the vomiting and the other affecting his personal relationship. Actually back then he wasn’t so bad and even before he went on them for the first time, although he had problems it was nothing like what followed. Like your daughter he relapsed, this was far worse than at the start of the illness. I later discovered that coming off antipsychotics causes a rebound psychosis which is far worse the the original. From what I have read since coming off these meds should be done really slowly, in my sons case it wasn’t. I think the meds your daughter is now on are called clozaril? Same ones my son is on, because of past experience and all the other side effects, I must admit I have intervened with this one and he is on a low dose of 250 grams a day and doing well he still has side effects which I won’t go into, plus extreme weight gain. But I guess we have to weigh up which is worse, the side effects or quality of life.


#17

Hi. I couldn’t agree more with this lack of educating both the person and their support system. I was brought into the ward to meet with the MD and SW after my son was admitted during his break - the dx of schizoaffective/ bipolar / poly substance abuse. It was a 15 min discussion and I was told " do research on the Internet " so for the past 2 years I have. But the lack of support from the medical community was disgraceful. it is a life altering Dx for my son as well as our family and everything we have learned has been due to experience of relaps and research, not by good direction from the medical community or local NAMI support groups either. No one tells you what to expect, how to navigate the disability system, how to look for supportive programs …the system is a mess and I have to say I feel that delays better recovery for our loved ones.


#18

I do fully believe the person who has been diagnosed should be educated so they will understand what is happening to them. not just told its a chemical imbalance but what actually happens within the brain and how this is linked into other organs like the adrenal glands. Its not all about the brain even females following childbirth can develop psychosis! People being diagnosed have as much of a clue about these conditions as the family does, all wrapped around stigma, which often leads to internalised stigma which only adds to the symptoms through the anxiety this causes. While reading your comments both myself and husband were nodding our heads in agreement as with other post I have read. I do not think the medical services actually get the impact this exclusion and holding us at arms length actually does to our mental health! I do also sometimes wonder if they could actually answer the questions we have of the physical side to these conditions. It feels to me like they are only taught about medication and chemical imbalance and some different therapies. Therapies might challenge the thoughts but it doesn’t explain what is actually happening inside physically to cause the symptoms. I think this sort of knowledge could help everyone involved to explain the experiences people have like voices and paranoia.


#19

What is the adrenal gland connection? I guess I could Google it, but I’m interested in some direction.

A bunch of physical things go on during psychosis…

Thank you!


#20

Hi Hereandhere
This will probably be a long story and it started when I became depressed and the doctor drew a rough sketch of how the adrenal gland works, explaining about good adrenalin and bad adrenalin and how too much bad adrenalin can affect us. This got me thinking about my sons experience, re: voices, hallucinations and paranoia. I do have a tendency to question things to try to make sense of something, so I understand. With the voices, I knew my son was hearing them as with hallucinations, all I got when I researched schizophrenia was they were symptoms of the illness, just like professionals in the field react. I felt this was a bit dismissive, and my thoughts were that these symptoms do not come from fresh air, something must be happening inside of the body to make them occur. I learned along the way about the conscious mind and the subconscious mind, the conscious mind being in the here and now, like I am talking to you right now and I am conscious of what I am thinking about. The subconscious mind is where we store our memories, experiences, beliefs and fears when something happens from something you have experienced or believe this triggers a thought on a previous and the memory of that experience. For example say you have a fear of spiders, you are going about you daily life not even thinking about spiders, then you see one and instantly go into panic mode, this is coming from you subconscious memory seeing the spider jogs the memory and the thoughts of fear enter you mind. We also are aware of the stigma surrounding these conditions just as our loved ones are, these are beliefs held by people who do not understand and often treat and refer to people with these diagnosis as mad etc. (I have a reason for writing all of this first before I get to the adrenal gland) When I tried explaining to my son when he was quite unwell about the contents of the voices being linked to the subconscious mind, he would argue that he wasn’t thinking about what he heard that it just came from nowhere. What he couldn’t get at the time was when it comes from stored memories from the subconscious mind the thought reaction is instant just like the reaction to the spider all it needs is a trigger in the spiders case to see one! Part of the contents of my sons voices related to stigma, he would here voices telling him he was a nutter and loony, this is what he thought others thought of him all stored in the subconscious mind. He also had visual hallucinations where he saw the devil, I believe this was him trying to make sense of what was happening to him as he thought he was possessed. This comes from our religious beliefs, all stored in the memory bank of our subconscious mind, if we had a different religious belief the devil in this faith might represent something completely different. I had to say the above so you could get what I am saying about the adrenal gland and bad adrenalin. The adrenal gland is situated in our stomach, which is probably why when something cause us stress or fear we experience a feeling in our stomach often related to butterflies. Short lived stress that passes in an hour or so isn’t harmful, its the ongoing stress like psychosis that triggers ongoing adrenalin to be released which becomes bad adrenalin. When the adrenal gland is triggered this triggers a reaction to gland in the brain the hypothalamus gland and pituitary gland situated at the base of the brain to produce chemicals into the brain fluid between the neuro transmitters that send messages from one to the other and basically control our body. For example if we burn our self we feel pain, if the neuro transmitter wasn’t working correctly this could result in us not feeling physical pain. When the adrenal gland is being stimulated ongoing at the same time the glands in the brain are pumping out the chemicals, so the more stressed or anxious you are this is feeding into a vicious circle. The more chemicals that are released into the brain fluid causing an imbalance this affects the neuro transmitters instead of messages running straight across from one to another these messages become distorted which cause a malfunction in other parts of the brain and feeds into the psychosis. My questions were initially around how voices occur, this is the result I came up with after going from one site to another looking for answers. Two parts of the brain are involved The brocas area of the brain which is the part we use when thinking, like recalling the words of a song in your mind, the other part of the brain called the auditory cortex if the part of the brain responsible for hearing, usually these two parts of the brain work independently of each other, but because of the chemical imbalance and false messages being transmitted this causes both the brocas and cortex to work simultaneously not unlike a short circuit in an electrical circuit. The brocas produces the thought the thoughts coming from our subconscious and the cortex gives the illusion of the voice. Which all starts with the adrenal gland over working. I did look into the visual hallucinations which is much the same principle, but if I don’t stop now I will end up writing a book!