Still dealing with so much guilt

Family
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I’m still struggling to break free from an overwhelming amount of guilt. I get asked by people to do things, and my thought immediately says, “why should I enjoy myself when my son is just stuck in his apt all day”. I feel like all of my energy goes to my sons needs and just mentally preparing myself for the worst all the time. Like him falling off the wagon and going back into the hospital or even worse, jail.

This thought just grips me and I can’t move because it immobilizes me and I freeze. The anxiety of waiting for the next episode is sometimes just unbearable.

I’ve tried to do things, and enjoy myself for a day, and I always find it’s useless, I’m always preoccupied with my son.

I’m sure I’m not alone with these thoughts…

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Im sorry , i feel your pain as i can so relate with that . The guilt is horrible . It makes me feel better when i talk with my son every day and do small things to make him happy . I get him to paint pictures on canvases ( he can paint well ) and sell them to me or my family so he can make pocket money and that makes him happy . When he’s happy i’m happy when he feels miserable i feel sick to my stomach like i’m grieving but every day is a different day and we need to stay focus and positive in order to help them which will ease our thoughts and minds . Remember you need to be strong in order to help him and that means trying to have a life of your own as well as look after your son. Its healthy for you and him . My son sometimes says to me that he’s happy when i go out with friends . I dont do it often but i still try and make the effort . Hang in there

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@Linda, I’m so happy you found a way to keep him occupied. I send my son a simple math problem a day. I also got him some crossword puzzles he seems to enjoy them and puzzles.

Thanks for the kind message.

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Remind me , does your son live with you ? is he 24 years old ?

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Linda, yes he just turned 25, when we spoke he was 24. And he has had his own apt since he was 20 :cry:.
Thankfully very close by, like your son.

I think when we talked you were in the process of looking for an apt for your son? I believe he was in college?

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I remember now ,we have similar stories , my son also diagnosed at 19 . My family helped me buy a condo for him and i am renting the other room to help pay for the bills . It almost didn’t work with the room mate a while back due to his paranoia but Thank Gd right now all stable . How often do you see him ? and does he live alone ? we are in Florida , you ?

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Linda I see him everyday for a little. We have days where we go grocery shopping together, we have days where we just go hang at the mall, he likes routine and structure, same times, same days (almost like in the movie Rainman).
He also comes over for dinner once a week with his brother and his gf, and some other members of my family. We try to keep it small. He gets overwhelmed quickly. So, yes I do see him at least 5 days a week.

We are in PA, I often fantasize about a sz caregiver convention where everyone from the group would attend. Somewhere centrally located so we can all just hug each other.

Only we know in the group what this road is truly like.

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I’m wracked with guilt. My son was such a high achiever, internally driven and soooo very easy. He used to get everything so easily. I remember he was often chosen to be this autistic students partner at school because of his calming ability. He received an award as the student who contributed the most to his high school. Captain of the debate team. State champion for National History Day. I used to call him my “just add water kid”…I’m not kidding. Now, I am terrorized by that memory. Like I tempted faith in the most brazen way and we are paying dearly. My guilt is endless…I had the flu very early in pregnancy. I was too intense as a stay at home mom. I didn’t get him enough help when he started suffering social problems in high school because he was so competent. I didn’t get help soon enough for him in college. When he cried and cried that semester I dropped him off and I didn’t do enough. I got him into the counselor and let him stay. I hate myself. My guilt is endless and I have been in the worst head space imaginable the last few days. It is misery in an echo chamber, since this illness is so isolating for caregivers. Lots of overdue crying and grief yesterday. I told my husband I am either living in terror or I feel like a stone. He has slipped since the pandemic. His sisters don’t want to talk to him bc he’s changed and he’s stopped even trying with them. It’s like I’ve lost my whole family. How do I live with this? I don’t know what to do and I am so, so guilty. Bad couple of days.

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You are an amazing mother !!! its so lovely to know you see him every day . I would like to see my son every day but i know that would upset my husband (long story , not easy and very stressful ) but i do see him also for short visits sometimes once or twice a week . we do speak several times a day and we txt a lot too . I have two stresses one my husband who does not understand and the other my sons condition .

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Hi Grace , you must remember this horrific illness is no ones fault . Try think positive and that way you can better your sons life and yours . Take you time to learn as much as you can about his illness and perhaps have a talk with his sisters to do the same too . This is no easy ride but we all need to be strong for them . one day at a time …

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@Grace, someone mentioned this awhile ago on this forum: “it’s not as casual as that”. There is no way you could have known, please try not to blame yourself. There is no way you could have triggered something like this, if had to be inherent, already there, waiting to come out. That’s what we do as mothers, we find fault in ourselves when our children are suffering or not doing well. It’s so difficult for me not to blame myself. I made some terrible decisions while my son was growing up, which all had negative impact and played a huge part in his demise. There are days where I can’t stand myself either. I go over It over and over in my head, what if I did this, what if I did that? Would my son now be a different person? I will never know. If it had been where my decisions didn’t impact him so badly, I wouldn’t be as hard on myself.

I live with this everyday. Going over things several times a day. I understand where you’re coming from. I feel like I’m stuck “back there”, and am unable to move forward and forgive myself. I don’t know if I ever will forgive myself.

Just wanted you to know I know where you are with this.

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Thank you. Even my husband doesn’t experience this like I do. It’s different for moms.

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I’m not sure if this is true about moms versus dads, but it sure feels that way to me. Terrible guilt and just always feeling intense heartache are my constant feelings. My husband somehow seems to be able compartmentalize and stay positive. I wish I could be that way too.

I gave birth to my son. I brought him into this now horrible life, that was once so wonderful and good. I know it sounds ridiculous, but I even feel guilt about that. Ugh.

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That’s very true in my case as well. My husband’s ability to compartmentalize is wonderful— in that he was so focused on how to get everything done when my son was acutely ill. But on the flip side, he doesn’t feel as shredded up as I do about him getting sick in the first place. The grief doesn’t strike him in waves, as it does to me. The same level of sadness just doesn’t seem to be there. He’s so task driven, he can’t just say “I totally get you. I’m destroyed as well.” It’s probably just as well—since I don’t know how we’d move forward with this if he wasn’t.

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I feel exactly the same way. I do not enjoy much of anything in my life anymore since my son’s illness. I try and sometimes I can pretend but I can never really feel truly at ease. Knowing he is suffering and will likely be suffering throughout his entire life tears me up.

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I certainly understand a Mother’s guilt, especially when the illness takes over the child (in my case a 32 year old veteran Son) and the once happy, gifted, honest, caring person you raised is now just the opposite, and you wonder what you did wrong. My Son has been diagnosed with many psychiatric illness over the past 8 years, but is also suffering from Anosignosia I believe, and therefore will not accept help for a mental illness, and threatens my life each time I bring it up. He has been homeless, friendless, and has isolated himself from family. He constantly begs me for help, says that he is dying, (does have low blood sugar), living in poverty (his choice)in his car, and traveling the country looking for a doctor (he’s seen about 2000) because he feels there is something psysically wrong, not mentally. I wake up each day with such anxiety, knowing I will receive at least 100 phone calls, deciding whether to answer or not, knowing what the outcome will be, always the same, being the “punching bag”. And then can’t sleep at night, worried about him in the cold. He is 16 hours away. Then if I don’t get the constant phone calls and messages, I worry that something has happened to him. Have called crisis lines, police, etc., not much help. I thought committing him for treatment was the answer, but am finding how difficult it is.

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I am sorry you are feeling so much guilt. I feel guilt, sadness, loss all the time. My son is 27 and had his first psychotic break at 23. He has his own condo that we got for him to live in. His first place had 2 bedrooms, but it was very hard for him to have a roommate. He tried a couple times with a friend, not friends anymore, but he is just too hard to live with. We allowed this friend to live there for free so he would have some companionship, but it failed. We recently moved him into a one bedroom condo which is closer to commerce. We took his car away about 8 months ago because he wasn’t responsible enough to drive. He would drive high, etc. I still feel guilty about taking away some of his independence, but we knew we’d never forgive ourselves if he were to cause harm to another while driving. We allow him to Uber places as well as drive him all over. But the guilt is still pretty intense. My husband handles his illness much better than I do. He can, like others have commented, still enjoy his life. I am in 2 support groups, see a therapist, and always read on this forum. It’s the first time I have ever written on here. I have come to the conclusion, I will have to learn how to live with the constant sadness and worry. Our son is adopted and I always feel maybe he could have been adopted by someone else who was stronger than me and maybe they would have done a better for him than me. My friends, therapist, etc think the total opposite that he is lucky it was us. In my heart, I know that none of us could have prevented this brain disorder that has taken over our child’s life. . We didn’t cause our children’s brains to have this. Please, please let us all try not to feel so guilty. All we can do at any given moment, is to be there for our child. I relate to almost everything everyone goes through. Ii feel like I live in a roller coaster. I never know from minute to minute what kind of mood my son will be in. It’s hard to get the abuse too. One minute he is nice and the next he is verbally abusive. I am happy I have this forum to read. After over a year of just reading posts, I am ready to share as well. It’s nice to know we have each other. :purple_heart:

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AS a parent I understand the feeling of yours. I copied a statement from Google qs follow:
It may be a reference of your problems.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

Smoking, alcohol, drugs, cannabis and prescription drugs stimulate Schizophrenia and Never been cured

There are three major hormones inside the brain which caused SZ. Dopamine, glutamate and cortisol are the key hormones which induced SZ syndrome . SZ patients almost all have auditory, hallucinations, insomnia, lower IQ, social phobia and ADHD.

Because antipsychotic drugs, nicotine. LSD, PCP, cannabis, amphetamine and meth. Which all have damaged brain dopamine, glutamine and cortisol systems. Our current prescription drugs made patient’s conditions worsen not better. Majority patients are became mental retarded, suicide and homeless. NO one was cured by our medical systems.

The principles to recovery from SZ are must quit smoking, alcohol, cannabis, illicit drugs and prescription drugs . This is the only way to start to recovery.

Then, we have to repair the dopamine system. SZ patients’ dopamine are too high. 5-htp can lower dopamine. Take 200 mg three times per day.

Glutamine hormones also very high. Take GABA 500mg three times per day. Take Glycine 1 gram three times per day .

Cortisol high can take 1 gram Ashwagandha three times per day.

Auditory and hallucination are hard to treat, you must quit all kind of nicotine’s. Take Bacopa 1 gram three times a day.

Isomina take Melatonin 5 mg, Passion flower 350mg, Chammomile flower 700 mg , Lemon Balm 1 gram and Holy basil 300 mg before bed.

Patients will slowly recovery in 6 months. Must Not Touch any substances which mention before. Or the conditions will getting worse. Regards!

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Hi! I hear YA! It’s odd I get anxious when I dont hear from my son and check when he is on FB messenger (it shows when last logged in). If he calls I get anxious that he is in a state. He has been pretty good lately in the pandemic but tis is his ideal scenario being able to read get into all the things he is interested in. I’m trying to deal with the guilt in the reality that this is genetic. A gene is most likely causing this over parenting its just too complex. I had my 22 year old son do a brain SPect scan so many issues with his brain that are coming to light. He doesnt like medicines so we are still gently discussing. He has a follow up ZOOM appt. next week. We have added in supplements based on their recommendation. Today I told him how do you know what it would be like until you try so dont discount it out. He is trying to figure out something he cant quite expess yet he is so deep and insightful … its truly a hard thing. I feel your frustration!

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My son lives with a room mate and she always complains and gets frustrated about his mess in the kitchen and i then call him to remind him to clean up . I can’t see him living with a room mate for too long either . He left his apartment once thinking her and her boyfriend were going to kill him ,we put his meds up and that helped thank goodness. Another time he believed she had Covid 19 and shouted and cursed at her to leave the apartment and threatened to call the police if she didn’t . She told him later that day that she got tested and she’s ok and he excepted it like nothing happened . I apologised to her and explained he suffers from anxiety and she was sweet and understanding . I know there will be more incidents in the future and i will deal with it as it comes . I just want to say it sounds like you are doing a wonderful job with your son , this disease is a challenge and we need to deal with it best we can .

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