Family and Caregiver Schizophrenia Discussion Forum

Hard times with my son

Hello all I have lurked here a while, but just needed somewhere to vent I suppose. So apologies in advance if it seems rude of me with no prior intro. But my son 21, was diagnosed with SZ in November 2018. Life has been turned upside down since then. Even though I knew he was getting sick for around 2 years prior as he changed.

Much has happened and I will spare the detail here right now, but he had a major psychotic episode in November which led him to being sectioned. He lives in Denmark I live in the UK. I have spent the last 6 months flying in and out of the county twice monthly. It is so so draining.

He is a little better , taking his meds finally and in an open unit. Health care is pretty good here in Denmark and mental health within the system is stable. But he is showng extreme signs of negative symptoms which seem to get worse not better. It is so draining.

They have tried a number of meds taking from Abiify to Olanzapine , which caused rapid weight gain and now he is on 4ml of Risperidone, his eating is much better, he lost some weight but Ihe wont open up at all. I feel like im tearing my hair out with this. We walk, we go places in the day but he says little or nothing. He seems emotionally dead.

I miss my son, the wonderful vibrant cheeky boy who seems to be lost to this wretched illness. I just think his meds need changing again, there was some talk of putting him on Clozapine but at the moment the team saying no.

I just dont know how to cope with him and the way he refuses to open up to anyone. He does get some delusions still, he admitted that much to his care team. Aliens and religious visions usually of a malformed type.

Tonight I met him out of the hospital unit, we walked to buy some food. He says nothing or not much, no emotion really i hug him tell him i love him, watched him go into his room. My heart breaks for him. 21 he should be out in the world with friends, having the best years of his life.

How do others cope with silence and emotional detachment ? Would CLozapine help ? or is it truly how it will be forever … so many questions sorry for the long intro. Im just so drained feel lost, and feel sad.

Thanks Dino. Father of Simon

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I think this is part of the process.
I remember my brother seemed to have lost his vibrant personality for a while, especially after major psychotic episodes.
The episodes are draining, physically and mentally. They leave a person feeling numb, detached and uncomfortable in their own mind and body. They don’t feel like themself for a while.
But I can assure you that your son will pull through and his personality will be healed with treatment and time.
It’s scary, but it’s a process. Keep being supportive and encouraging. He will heal.

For medication,
My brother went through a similar set of medication. That is also a process. The doctors need to see the effects and adjust the medication accordingly. Over time, they will get it pinned down pretty well, but it takes a lot of adjustments and observation.
Keep in mind that this is one of the most complicated problems a person can have. It takes doctors time to get things figured out.
Someone mentioned that the medical community seems to go a little overboard on men at first with medication. They assumed that it was due to the physical risk of a grown man going through a psychotic break. That seems to make sense to me.
The good news is that the severity of side effects will lessen as your son’s medication is adjusted and he makes progress in treatment.

Try to emphasize. You son is probably very much exhausted, mentally drained and frustrated with his symptoms and side effects. If he doesn’t want to talk, he doesn’t have to. If he doesn’t want to listen, he doesn’t have to. If he can’t crack a joke, or smile when something tastes good; it’s probably because he is struggling with very real problems.
Continuing with treatment and allowing doctors to adjust medication will help him through these hard times. He will feel better and he will start to be himself again.

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Hello Dino. I’m so sorry for your pain and worry. This is an awful disease.

Our son started to change at age 17. He was a star athlete, and a college freshman when his future was completely altered by a major psychotic break. He’s now 22, and he’s been home with us for 3 years.

The beginning was terrible. It was the shock and horror, the forced hospitalizations, and just the worst, most intense sadness a person could ever imagine. You’re there now. I know how you feel.

Your son sounds like our son did. There’s a period of a few years where this illness develops, and things change in their brains. Our son seemed so vacant and cognitively impaired as well, and it was heartbreaking to watch, but that was before he started monthly injections. With each month that passed, he started to come back.

With time on good and consistent meds, our son’s brain seems to have healed in so many ways. He spends his time home, with no aspirations, but he’s calm and happy, for the most part.

Two years ago, I would never have imagined feeling ok with where my son is, but somehow I’m coming to terms. I don’t know if I’ll ever really reach “acceptance” in my grieving, as the heartbreak will always be there, but time does seem to help us.

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Speaking only from my own experiences. I’d like to share that I believe that your son’s condition and communication abilities can improve with time, compliance, consistency, reduced stress and age.

Your son is very fortunate to have you, he may not be able to express himself to you right now but never doubt your importance to him and his future wellness. It takes awhile to find out what medications offer the most benefits with the least side effects. The process tests everyone’s patience.

Then it takes awhile for your son to become accustom to the ever changing brain chemistry, with the introduction of each medicine. The medicines may need tweaked or changed-others added or subtracted. It’s hard to continually adapt.

His doctor needs to know any progress or lack of progress-new or worsening symptoms that happen especially if your son is not very able to express himself very well to the doctor during his visits, that can be difficult for the doctor when prescribing what will work best based on verbal feedback.

I would suggest if you can go to his appointments with him that would be helpful to add your input. If that can’t happen, due to travel or distance then maybe a letter to his doctor letting him know your concerns and what you see specifically when you visit with him.

My son was diagnosed with Disorganized Schizophrenia in 2005- he was 21. We (the doctors and I) surmised after the fact that he likely started having the voices and delusions several years before but because he also had ongoing addictions we thought that was the main issue and early on had him in rehab. In the early days he barely spoke a word-ever. When he did utter anything at all-it made no sense.

I understand the complete frustration. It is extreme. I think what helped me the most and this may not be a possibility in Europe or the countries you and your son are in but I went to an extended free class on mental illness offered by NAMI here in the states and it was the ultimate eye opener for me. I learned so much about mental illness and what it is like from the perspective of the ill person. I think I gained the deeper compassion, and understanding I needed to be his primary caretaker, which is so far different than just being his mom. He went through dozens of medications and side effects and changes an hospitalizations, issues getting off of street drugs and away from bad influences etc…etc…2 suicide attempts …we tried so many many things.

Ultimately I moved away and he ended up living with me, I am his legal guardian, I handle all the finances, he is on disability, he lives a simple, predictable low stress life, he can’t work but in the years since 2005, he stabilized on clozapine and depakote, he has been clean and sober since 2009. He has developed several hobbies, music, coin collecting, TV, recycling, some minimal gardening and cooking, and he seems to love to go to parks -be in nature and attend festivals, fairs, and concerts when he can and he walks an hour almost every day with me.

I say “seems” because he still is not an overly emotional person although now he “gets” a good joke and can tell a good one sometimes too.

In addition his speech slowly improved, it took a very long time. I talked to him every day even if I didn’t get anything back or even if what he said made no sense. I kept at it. I learned (with counseling) that I actually spoke too fast for him to process, so I slowed it way down. Things improved. He responded more and more. I had to repeat things for him at times. I had to learn not to repeat them with any sound of frustration or exasperation. He could pick up on that and make him more quiet.

Now -today -we can have discussions, share interesting ideas, he is still never going to talk anyone’s ear off and he still tries to avoid phone calls but he has started making his own dentist and doctor appointments recently -so that is real progress. He is 35 now and has been free of voices and major delusions for several years. The remnants of the illness that remain (even with the wellness) is the persistent lack of motivation, inability to self direct, strong drive to isolate, refusal to maintain outside friendships and intermittent confusion and forgetfulness that can interfere with completing tasks from time to time.

He keeps notes and lists on everything. It helps him stay organized.

Compared to 2005 he is light years improved. I can relax with him now. Think of myself. Do for myself. Take a breath and laugh with him. He is not a typical 35 year old, but he has never been typical, I have stopped with what I consider to be “toxic comparisons”, he is who he is and I love him dearly-regardless. This may be his very best self. If so I am okay with that. If you ask him directly if he is happy he will say: “Sure! why do you ask?” that’s plenty enough for me.

I highly recommend that for your own peace of mind and to bolster the mental strength you need to be there for your son, that you seek outside counseling for yourself. I still have a counselor today and my time with her is invaluable to me.

Your son may improve in ways that far surpass what my son has achieved, there is no guarantees, unfortunately, I wish there was, but, with you in his corner and him willing to get the care he needs, there is much to hope for.

I truly hope you don’t mind that I have shared as I have. I hope the sharing helps in some small way.

You are not alone. I wish you and your son all of the best outcomes in the days going forward.

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Could be DP/DR

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Thank you all for your responses I am reading through them all! It is so strange so much of what you all share here is like a mirror of what I have seen my son go through. @Catherine your story especially could be my son to a letter!

@wreklus yes the meds are a process one my son is not yet stable with ,

Im reading through everythng here as I feel knowledge of this is going to be so important and right now I feel out of my depth on this. His mother is present but with her own issues (drinking) so I feel at times im in this on my own.

Today I met him, and was laughing to him self, not in a bad way but it happens more and more the past 5 or 6 weeks. On advise of his medical team, I do question him on it , in a very low key none confrontational way his reply when I ask what he laughs at is “nothing” … those words exact.

So its like his mind never switches off … I get angry at times because I miss my son, but my son of 3 years past is no longer present. We ate food today I talked, we walked, he did his laughing part but said little then went back to his hospital unit.

Thank you again each of you who have taken the time to respond to my message me and for sharing some of your own very real journeys with this wretched disease!

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Yes that kind of fits … he is certainly also with major negative symptoms of the SZ right now

I think your right on my son being exhausted although he does not show it. I saw him today he seemed tred in the eyes , thanks for your words .

Hi exactly the same age as my son DaybyDay !!! 17 so strange it can follow similar patterns. Wishing you only the best with your own boy and his journey and battle with this. Suppose sometimes its just one day at a time …

This could have been about Simon my son! word for word … I can identify with all you shared. And I do not mind at all you shared this with me and others here Catherine!! Your insight and views are helping me gain a wider perspective … I am happy your son is finding his own “space” peace and way of doing things. My son is no where near at the moment to where yours has managed to get to, but I hope in time he will be.

He is obsessed with completing his exams, but cant cope with any stress. His is of above average intelligence which is a double edge sword. The brain never switches off :frowning: He can solve a maths problem but can not make a cup of tea of hold a conversation or make a sandwich … and the voices in the mind seem never to be silent … im tired and sad today.

I am so happy to read though your son is free of voices and delusion! shows it can be done .

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When my son was 25 , a couple of years after the diagnosis but a relativity tranquil period, my son was talking about his day and working to get his young son out the door I said “it must be exhausting to be you” . He turned, looked at me and said “you have no idea”. The words as well as the look on his face and the pain in his eyes struck me to the core.

We’ve had ups and downs in the years since, but from that point forward I remember he struggles daily. Some days he is more successful at hiding the struggle, but it is always there under the surface.

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I’m sza and I just take one day at a time. I have some plans to move south in about 2 years, but raising my son and playing video games is what keeps me going

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I have the same advise as all the posts in this section.

Most of all, take care of yourself and give the meds time to work.

I am the mother of 47-year-old son
in a community mental health group home on court- ordered meds.

Hope and Blessings
from Vermont :white_flower::white_flower::white_flower:

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Hi thanks again for the responses it is very much appreciated.

When people say give time for the meds to work what are we talking here ?

My son started on abilify had to be forced onto that through court order as he refused all meds at the start. Abilify didnt really work then around December 2018 switch to Olanzapine which did start to calm him but gave rise to huge appetite … around late Feb early March they switched him to risperidone which he has is on now. It was slow transition as they had to slowly decrease the Olanz and increase the Risperidone as they went on.

He now on 4mg daily of risperidone which yeah he is calmer but shows real negative symptoms of the SZ … How long does it take to really see if this is working or are we past that stage now ?

His next med if this dont work would be Clozapine

sorry for all the qs but just interested in what others think on “how much time” it takes

thanks Dino

There’s no real fix for negative symptoms except maybe modafinil. If his hallucinations / delusions are decreasing that is a good sign. It took me 2-3 years on invega for all my hallucinations to fade

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Dino, from what I have read and have experienced with my own son, AP meds do not help the negative symptoms of this disease.

People often say that the medications make them or their loved ones feel unmotivated, lethargic, depressed etc. but in our experience, those are symptoms of the illness, not the meds.

During the early years, during the development of the illness, things changed a lot for our son. I think your son is still in those early developmental years. His negative symptoms may still be developing.

The AP meds need time to work on the positive symptoms, to help alleviate your son’s day to day fears, and stabilize his mood, but you may see more changes in the coming months, as the illness develops.

For example, my son didn’t start to hear clear voices until well after he started AP meds. His illness was still developing.

So, again, I think it’s important to remember, AP meds don’t generally help negative symptoms. Unfortunately, negative symptoms are just a really cruel bonus that many (not all) people with this disease get. My son is one of the unlucky ones. I hope your son is not.

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One of the hardest things I had to do was to say no to some of the things he wanted to do early on, like working, we tried several working options in various settings at various times of day etc, and each time the stress would cause him to lose ground and lose wellness and clarity, you could see him begin to unravel sometimes slowly and sometimes in minutes. It might have been having to not smoke except on assigned breaks and in assigned areas. It could be sticking to a specific schedule or even changing a schedule or really anything, new people showing up, someone raising their voice loudly. Finally I put my foot down and just said no more. Stability is too important. More important than social or economic achievement. He has been relatively stable ever since I conscientiously removed most all of his external stress factors.

My son is average intelligence, and had leaning disabilities in school, classes were really hard for him. He still, (like all young men) wanted to feel the importance of having a job and his own income, he worked when he was 14 at a local grocery store that had a special work/study program and he did very well, but it was the next year or two after that he started showing signs of being ill and running with a bad crowd that drank and smoked pot and cut school.

I was always a single parent and I dropped my kids off at the front door of the school each morning before I went to work, only to find out much later that my youngest (my sz son) walked straight through the school and out the back door.

School and work went by the wayside and the nightmare began so to speak.

My oldest son is not sz -I do believe he is on the spectrum though with undiagnosed high functioning asperger’s, I say this because he reminds me a bit of what you said about your son having a mind that never shuts off and being very smart and placing studies at a high value. My oldest is like that, he is 37 and married and lives on the west coast. He teaches English part time at an immersion school for Chinese and Japanese students.

His wife is Chinese and he speaks Mandarin and Japanese and a few other languages but he can’t handle social stress and he tends to come across as distant and unapproachable to others.

He has come close to what I call a breakdown when he was trying to go for his masters in language and work at the same time. He came close to another breakdown when his wife had to go to visit her parents in China without him and he was left alone with full responsibility for everything for a month. He barely ever calls me (normally) but at that time I think he called me twice a day and always under great duress. He hasn’t “cracked” yet -but I always worry that it runs in the family-because it does in ours.

My point is that it is my solid belief that in this fast paced high expectation day and age-stress in all of its varied forms is the arch enemy to mental health and stability. I wish you better days ahead.

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I’m so sorry you are going through this with you son. My son was diagnosed with sz at 20. In the last 10 years his diagnosis has changed several times, currently bipolar 1 with episodes of psychosis. It not a very exact science. My husband and I have done much research over the past few years and have found studies showing minocytline can help with negative symptoms. Our son takes 100mg two times a day and is improving. This is in addition to 2mg of risperidone and 250 mg of depakote. We didn’t see any changes for 4 weeks. It takes about 4 or more weeks to see improvement. Because we live in USA we had to find a doctor, not psychiatrist to prescribe. When he left the hospital last November he was barely speaking, sleeping long hours. Hospital sent him home on injectable resperal constra 50mg and 750 mg depakote. These meds have been decreased slowly by a pyschiatric nurse practitioner.
Our son went from not leaving his room to spending time with family and friends.He is beginning to look for part time employment. He’s is happy many days but still struggles on others.
Hope and love are key.

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When they find the right meds/dosage, things may change. My son has ups and downs, isolates, needy, at present not driving, going to gym or cooking. But is on his meds., Which have many side affects. At least he is being taken care of, which is all you can ask for. Unconditional love is the key, except the things you cannot change. And take care of you!

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