@Mom2 - I have that same feeling. Seems like my son is ok to be in the state he is in and he doesn’t seem sad - just a bit confused and is happy to be left alone. (That is when I see him).
I wish with all my heart that my son would share with me about his voices. He won’t. It is agony seeing him, knowing he is involved with his voices but I don’t know what they’re telling him. Lately it has gotten very bad again. He went off his meds because he said they didn’t help with his voices and just made him groggy and tired so now, I don’t know if he’s holding steady or getting worse. Seems like he’s getting worse, if I’m really honest. He sees a caseworker once per week but I don’t know what he tells her either.
My son and I used to be close but he is a complete stranger to me now. It is heartbreaking on top of all the grief and sadness.
JooJoo, I’m so sorry you’re going through this too! My son is currently in the hospital so I have a little more time to ponder that same thought. I wonder if the reason they don’t share the voices with me us as parents is that it comes back on their own with hospitalization.
Also my husband thinks he has to point out to my son that laughing out loud and talking to your voices is not normal. I on the other hand pretend everything is all right. We are all he has at the moment and he resents us for it. We love our son and try so hard to help him but the prognosis does not look good for him. As parents I can so relate to not knowing if we are helping or hurting him. In the end his recovery is up to him, isn’t it? We can only set boundaries in our homes to protect all of us.
I truly hope your situation improves and big hugs for you this morning. I hope your day is bright.
With 1% of the population, approximately, hearing voices I hope, someday, that we can ask the question, “are you hearing voices?” as neutral and non-judgmental as we would ask about any symptom. It is also my belief that voices, in and of themselves, aren’t the bigger issue. The bigger issue is delusional thinking - believing certain thoughts, ideas or what the voices are saying that just do not concretely seem to be the case. I’ve heard of people living with voices and going to work and living comfortable, conventional lives. I don’t think my son will be one because along with voices comes fear, anger over feeling a loss of privacy, and delusional thinking. My son did not really talk to me about his voices until he was on medication and stable. I guess, with all that said, my question would be - are there other symptoms that cause YOU concern and how does he feel - if there are symptoms interfering with the life he wants there is, of course, help. If you feel terrified to leave him along and if he seems distressed or delusional, you could have him evaluated at home for possibly forced in-patient care. Trust your instincts - you know what you are doing. When the time is right and his perspective is more stable he may be very willing to talk to you about his voices. At the moment, they may be telling him not to talk to you, that you might be hurt if he did, etc…there is really no way to know. But if he is not the person you knew and distressed and you don’t feel comfortable leaving him alone - his behavior is unpredictable - he may need assessed. Yes, the meds are so frustrating. They take a few weeks to work and they do make them tired. However, with time it usually gets better. I believe there is a least of the worst combo out there for everyone. Another poster had success with taking her son to a holistic doctor and found evidence of a black mold allergy and this doctors recommendations seem to be helping. For now, though, most of us can find some kind of relief with the currents meds or combo of meds. It is grief- it is a loss, but there is lots of reason to hope. I always tell my son - if these voices are of Creation - they would be loving, if they are friends - they would be loving. If they are a disturbance in your language center of your brain or unloving voices - get rid of them. That’s hard to understand if there is delusional thinking though . Best of luck. Prayers to you.
Sometimes people have to keep the voices and other hallucinations secret as a requirement or request from the voices themselves. I had positive symptoms of psychosis from severe depression and PTSD; I was not allowed to tell anyone “here” anything about the world I inhabited. Sometimes I knew the world I was in was not real in a traditional sense, but experienced it as another reality MORE real than this one. Sometimes the hallucinations were pretty seamless with one large reality containing all of it, both the real and my own world. I didn’t think twice about keeping things to myself that I had been asked to keep secret. I never would have told anyone. I talked to myself and “responded to internal stimulii” while functioning pretty well most of the time, as in, I never fully lost connection to this reality for very long. So I could behave reasonably well the vast majority of the time.
The big problems come when people lose touch with shared reality or the worlds blend in frightening ways and people respond to the inner world with actions in this one. I agree that the hallucinations are not always debilitating since I spent years hallucinating and also being mostly okay.
No one can disrupt the inner reality with news or logic from shared reality just like I could never convince anyone in shared reality that what was real to me was real, though I did accidentally try at times. Very painful.
Recovery from mental illness is up to many, many people including compassionate doctors and loving family members. Basically, people need a real reason to try to navigate the real world that is often frightening and incomprehensible on a very basic level for those of us who have suffered severe symptoms of mental illness. Family, friends, trees, real good things in this world are the reason people come back. It is not up to us whether or not there is a reason to come back. It is not up to us whether our bodies respond to medication.
My loving family members and friends gave me the needed footholds in this reality by caring about me in the most kind and basic ways. Still, I have not make it all the way back. I have a good prescriber and a good counselor. I have many setbacks.
What finally exiled me from my (internal) world was when my family member became very ill with what would be diagnosed as schizophrenia. I was needed and I tried to respond. But I am still, at times, experiencing non-hallucination symptoms of mental illness while trying to help someone.
All I know is: give people a real reason to be in this world and make it as simple as possible for them to be here when they are experiencing difficult symptoms. I am fully human and want to be here. Partially, I don’t know how, having lost time and not developed “normally”. The main reason, though, is that real medical illnesses prevent those of us who have severe mental illness from being and doing all we wish to be and do.
Treat adults with mental illness as well as you treat anyone and with the exact same respect and courtesy is the message I would send to the dad who tries to correct medical problems with advice.
Thank you. Well said
Hi, I am new to this forum. I am a mother taking care of my 15+ year old daughter who was diagnosed with Autism and Sc. She was a fine child untill the age of 13+ then she was acting funny, was paranoid. Then we realized that she coudl hear voices and see things which are not there. It was devastating for the family. I am home from work taking care of her and it breaks my heart to her suffer in silence. It is so painfull to hear other of her church friends goign for camps and so on and when I told my husband that I dont want to hear her friends doing funs because it hears me so badly as a mother and the response from my husband is ’ you still havent accepted that this is how things are for us’ and dont understand why he responded as such, can anybody help me explain please. Thank you so much
I would like to respond more, but I’ve just woken up and have not had my coffee yet. However, you posted this (if the information is correct) just 44 minutes ago, and I don’t want you to feel alone in this.
So, short and brief…I’ll come back later to fill in any gaps.
Our son dx at 7/8. He’s a week away from 14yo.
Over the years we both “felt” different things about scz. (husband and I). We were/are seldom at the same place at the same time. This is okay, just takes some reminding when I “don’t get” why he “doesn’t get”…
You’re not alone…when I read the threads of this forum (past threads), I was really surprised at how many felt alone. I know I certainly did. (When I stumble across my first post, I sound so very sad to myself.) Reality is that we do not need to suffer in silence. There are others. I’ve been here only a few months. This place helps. Asking questions helps, having a place where I can talk to other mothers really helps. At least for me.
I’ll try to write more on this later. BUT…one thing: two people look at things from two different perspectives.
Sometimes gender influences, sometimes roles, sometimes past experiences…but the bottom line is that two people bring two completely different brains to the table when faced with a trauma. They are then supposed to somehow “be of one mind” when addressing the situation and unitedly form rational thoughts in order to make critical decisions.
It doesn’t happen like that. Not for me/us at least. At different times my husband has been the “clinical” one, stating simply that “this is like that”, with a kind of easy peasy approach. Other times, he’s the one crying, expressing verbally how much he has been holding in. The worries, the fears.
That’s a lot to keep inside.
Just my two cents…
He thought about it, and has adjusted (to a degree). It’s just his approach. My husband did the same…and it seemed to me like he spent a few years in the “so this is what it is” place. For him, this place was less emotional. He could focus on “how things are now” instead of “owwwww, this hurts!!”
Notice though, that neither he nor I decided that we were going to “feel” or “not feel”. At a certain point, it just did. The emotions, the sadness, the worry, the confusion…well, these things come at different times. How we deal with them changes just as much too.
It’s our “normal”.
That sounds bad, but it’s not really.
I guess what I’m trying to say is that you’re not alone. There are lots of other mothers who are willing to share their experiences, thoughts and joys in regards to this very private and sensitive subject.
Good morning from the west coast.
It’s a new day, and the start of a fresh week.
Thank you for your candor. This is very helpful. I didn’t know that in addition to caring for an ill family member, you yourself have struggled with the same symptoms.
I have been attending the NAMI Family to Family class and they often refer to mental illness as a brain disorder. I really like that. It is much more indicative of illness of a physical nature, which mental illness IS. You just can’t see it.
Regarding my ill son, I never know if I am doing too much or not enough. It is a constant balancing act. The main thing I try to do is keep the stress low and to keep things kind, respectful and as regular as possible. I like your comment about ‘having a real reason to be in this world and make it as simple as possible’ . That is SO very helpful
During the very rare occasions when he wants to talk about his symptoms, I listen intently.
He did say that he has ‘techniques’ to keep the voices friendly. I don’t know what these techniques are, but trust he is being honest with me. He has talked to his sister more about his voices.
I still don’t understand why he won’t talk to me about them. Sometimes I wonder if maybe he doesn’t want to disappoint or scare me? I just don’t know.
Thanks to everyone who has been apart of this awesome thread. The sadness is ongoing and we do have to find reasons to hope. It is easier on some days than others - that is for sure!
Yes! Ask them, “Are you hearing voices?” in the same way you’d ask someone if their foot hurts worse or better today. Wouldn’t that be wonderful?
I can actually tell when my son is hearing voices because he is not entirely present. He doesn’t interact with them out loud but he misses parts of ‘shared reality’ conversations and needs things repeated a lot. He also stares and lurks and if you didn’t know he was ill, you might find it a bit creepy.
His delusions seem to have gotten a lot better though. That is what the meds REALLY helped with and since he has been off (xyprexa) the delusions haven’t seemed to return BUT some of his ‘out there’ thinking certainly has. He has some pretty radical ideas about things. I am trying to accept it.
It was a blessing for the family when my brother-in-law, who owns a company, handed my son an assembly job. it is simple, low stress and involves very little interaction with people. For now, it’s perfect for him and it gets him out of the house four days per week.
He still doesn’t have one real friend. He only communicates with online personalities, especially charismatic ones. But in general, he doesn’t show any real interest in people. It is all he can do to just deal with what is going on his head and go to work. He does some online learning/studying when he can focus.
As for leaving him alone for more than a day or so, my biggest fear is that he wouldn’t eat. When we found him in psychosis, he looked like he had been in a concentration camp. When he was on zyprexa he ate everything in sight but now that the meds are out of his system, his appetite is iffy again.
He says he knows how to keep his voices friendly. That’s what he told his sister too, only in more detail. I hope that is true.
I really miss having good talks with him though. He has really distanced himself from me and I am not sure why exactly.
Thanks for your thoughtful response!
I was reading your post to my husband this morning - its one of the most important posts on this forum as it answers the questions that family members ask over and over again and it offers us an incredibly understandable insight into the worlds of our family members.
People say over and over “its their journey”. I really struggled with that statement the first time I heard it. I thought “I am here, I can help” I guess our role is to support their journey the best we can, listen and let them navigate.
Its asking a lot Hereandhere, we will need to be as strong as our family members.
Thanks is not enough, but thank you so much. Hope
I am terribly sorry for not replying you earlier, I prefer to spend computer time alone but I don’t get that oppurturnity always. However, I was so so happy to receive a reply, thank you. Thank you for your kinds words and reassuring words which made me feel not alone
I am sorry to hear that your son was diagnosed at the age of 7/8. It must be really tough on you and the family. Is he on meds ? My daughter has changed 3 different meds and now she is on Invega 9mg in the morning, Quetiapine 100mg for the night.
Are you working full time or taking care of your son full time ? Is your son going to school, if so how is he coping there?
It is really nice to hear we are not alone, thank you.
Yes.Totally agree with you with the above.
Hope to keep in touch with you, take care.
We’re doing okay right now…things are moving smoothly and he’s more alert than he has been. Slowly some improvements too. I try to remind myself to use this time to rest, find peace, and not worry about what the future will bring. (So far, I’ve reminded myself of this at least a hundred times today…and it’s just about lunch time!)
He is on meds…Seroquel (Quetiapine, all his meds are the generic form) 300mg, Sertraline, Clonidine and Hydroxizine. He also uses a special rx shampoo or the skin condition on his scalp, it’s almost like “Cradle Cap” that babies get…it builds up skin and turns into a yeast infection. Ich…adds to his belief that his “hair hurts”.
Hmmm…let me see what else?
I stay at home now…husband and I recently reviewed this desiscion (he lost his job a little over a year ago), and decided once again that I will continue to remain at home. Our boy is not public schooled at this time (he has been) and has been in a heavily medicated state since his last suicide attempt (just before husband lost his job). We have another boy, a year older who is in high school. He (right now) is beginning to show signs of severe anxiety, so we are keeping watchful eye on this, providing as much communication and support as possible to help him learn how to deal with this.
Our younger boy was excited about returning to school prior to the crisis period I referred to earlier. He wanted so badly for everything to work, so did the school. For him, it’s the stress. The pdoc feels he has scz, but also depression and severe anxiety. Now? He refuses to go.
He’s a sweet boy, very polite. AND…very quiet…and…if he doesn’t feel like doing something, well, it’s not going to happen. It’s more than behavioral…he simply cannot. If he believes that something is not going to go well, then that is his deepest belief, and it takes him down. The belief alone, the worry and anxiousness alongside seems to knock him to his knees. So, we’re taking this one step at a time. The pdoc has ordered a neuro pscyh eval in March for him. I think we’ll have a better understanding after that.
I can’t remember, do you have just a daughter, or other children as well? Are you at home too, or are you balancing work and home? How are you doing?
It’s great to hear back from you…
Thanks for the share!
We CAN do this…
This is our younger boy…he does this frequently. Does anyone else find that their child complains (seriously) about their joints hurting, to the point that they sit down, no matter where they are? He’s a BIG BOY…bigger than me…and he just sits down. Like this…I can honestly say that I feel a “timer” begin when he does this…time is running out, and I need to get him back to the car and home again. (Another reason the the pdoc is urging the evaluation.)
Below is both boys, near the end of the crisis period I referred to. He was actually starting to smile again, and I caught it on camera!!! A little over a year ago…how much they have grown.
I know how youfeel. My son was 15 when he had his breakdown. He is now 26. I cannot bear to look at old photo albums of him and his sister. When he was young and adorable and so full of life. It is like an alien invaded his body and I do not recognize him anymore. So sad.
HI Squid, Thank you for sharing about your family and thank you for the photos of your lovely sons. May God Bless them.
I know it is not easy to settle down and take care of ourselves especially when there are a lot of chores and things that needs to be done. I take care of others first ( meal prep, cleaning, laundry, grocery shopping & etc) and put myself last ( guess this is what most mothers do) . When I run out of energy and I happened to be alone at home, I go to my laundry room and empty aaaallll the tears and emotions in me, I cry out to God asking for strength, I let all the tears out, just crying away like a baby sometimes for like 10-15mins and I surrender everything, I let go. Many times to my surprise it helps me to get up again.I get my strength again.
But I also need a longer time for myself (a Me time alone when my daughter is not around) to straightened out my thoughts, to get my perspective right and not all the time I succeed.
Very interesting, my daughter has that too. She has a long hair and I wish she could wash her hair every 2 days but its not easy to make her do that, I should be happy that she washes itonce a week.
I stay at home now too and my husband too lost his job last summer and thank God he found a new job , he works only 50% and comes home early to help me out which is very thoughfull of him.
We have a son who is 13 years old , younger than our daughter. He is hanging in there. He says he misses his sister a lot because they were best buddies before this. My daughter does not respond to him as before. We tend to encourage our son to be with friends so that he will have a life.
I feel for you, I can understand what you and your husband are feeling about your other 2 sons. I hope they will pull through this quickly.
My daughter goes to school but only for 2 hours, but she is not in school all 5 days in a row, she is extremely tired,I send her and pick her up at school. She has no friends in school and I wish she has. ´She starts school at 9.30am. For example this week she went to school twice which is on Wed and Thur. At times, when I drive her to school and stop on the entrance of the school and she changes her minds, she doesn’t want to go, the reason can be 'its too much voices ’ and so I will have to turn around the car and head home. Days like these is very tiring and frustrating, it has happened many times now, in the begining it was very exhausting and frustrating and now I am tryign to get used to it with a lot a patience. She lots all her interest and doesn’t domuch at home, just sits on the soffa and listens to music, I try to engage her in acivities but she refuses.
Sometimes, I get some motivations from youtubers who has this illness and are coping well and encouraging others. It gives me hope and some motivation.
Take care, I will pray for your family and all the families out there and all who are suffering this illness. Don’t give up hope, we will get through this.
Hi Juliej, I too have this pain to see old photos of my daughter. I agree and I know exactly how you feel.
" When he was young and adorable and so full of life. It is like an alien invaded his body and I do not recognize him anymore. So sad."
Yes. That was then. This is now.
An alien has taken over my son’s body as well. Sometimes I can hardly bear to even look at him. The sadness is overwhelming. He recently relapsed so I’ve been in a very bad space. I breathe with him. I watch his every move. His days are my days. I can’t separate myself from him and I truly wonder how long I can keep this up.
I am snapping at my husband, ignoring my mother and alienating friends. I’m just a mess.
Do you have any family or friends that are supportive? You cannot make this journey alone. It is too much for a single person to bear. As mothers we not only see our sons pain but feel it as well.
We do have to separate ourselves from our children and take some time away from them…even if it’s s trip to the grocery store. If we don’t take care of ourselves we will be no use to our children.
My son takes 2 steps forward and 1 step back. Your son will get better.
Are there any support groups in your state?
I do have a few friends and family members who are there for me. Just takes a phone call, which is the hardest thing for me to do. When I am stressed out, I isolate myself by my own choosing. I always have, even before the illness.
Yes I am involved in NAMI and a multi-family-group within the Early Assessment group that my son belongs to. But even with all of this outside support, the sadness and grief can be overwhelming at times. I’s sure everyone can relate.
Every time I get my hopes up, they are dashed. My son going through relapse feels like a PTSD experience for me. He is back on meds and doing better for now. But a few nights ago he kept getting up in the middle of the night. I hear the latch on his door… am so sensitive to that sound and it raises my cortisol level instantly. It is a trigger for sure - because insomnia was the first sign of his last relapse.
I realize I can’t go on this way. But then I also realize human beings are capable of extraordinary things.
I think sometimes I feel guilty - like how can I try to be happy when my son is going through this? I guess I feel at my core that I don’t deserve any reprieve because my son doesn’t get any. Does anyone else feel that way? I know it is not healthy but I just can’t help it.
Trying to be happy is a constant battle…I do want to be happy for my son though. I try to act happy but I seem to never feel it on the inside. Rather than happy, maybe I am settling for not being unhappy… I do try to be grateful. Grateful for the things in my life that are going right. Grateful that my son is compliant with his meds, doesn’t do drugs and doesn’t hear voices.
When my son relapsed I too felt the PTSD. Just the thought of having him evaulated for hospitalization made me sick to my stomach… thankfully my husband was strong for both of us.
You can never give up hope though. Surely better medications will be developed that can help. Hope is the only thing that keeps us going!!!