The will to keep living after watching a loved one descend into madness

TLDR: Mom went into psychosis when I was 17, I am now 23F, and don’t see the point of living or doing anything if I’m just going to end up like her. Looking for life advice, other stories, and general commentary. Anything helps, really.

Hi, I’m currently a college student, and my mother went into psychosis when I was around 17 years old. I’m 23F, and south asian for reference. I was the first in my family to recognize that something was off about her at the beginning of her psychotic episode, but no one believed me. Her descent was slow and gradual, and by the time I realized what was happening, it felt like it was too late. Her delusions started off with what, at the time, seemed like normal issues; I would come home from high school and be greeted with her ranting about how the upstairs neighbors in our apartment complex were talking poorly about her and her ethnicity. As the months passed, it turned into delusions about them breaking into our house and threatening to harm me or rob us of our valuables. I thought it was strange that a relatively calm family would speak so ill of us in that manner, but I had no reason to disbelieve my mother. I began to suspect something was amiss once I began to catch my mother talking to herself, almost as though she was conversing with someone in the room, but the room was dead empty. The delusions she would report to my father and me worsened as time went on, and a year and a half later, she would cry to us about how the government put a chip in her brain and was listening to everything we were saying. That said authority figure was also conducting some sort of study on post-menopausal women and was, as she put it, remotely sexually harassing her. Strange beliefs to say the least, and it became evident to me that she likely suffers from paranoid schizophrenia, if not at the very least psychosis. It was difficult to say the least, to watch her descend into, forgive my stigmatizing words, madness from the ages of 17 until now. My mother was an accomplished woman in her lifetime; she has a bachelor’s, two master’s, and a PhD. She used to be a professor and would take me to her classes as a kid when she couldn’t find a babysitter. She did everything they tell you to in life: got an education, moved to America, got married, lives in a wonderful suburb, had children, etc. However, it wasn’t until her late 50’s that she began developing this issue.

When I voiced my concerns about my mothers mental health, I was immediately shot down. Told that I was imagining things, that everything was fine and I need not stick my nose in the business of adults. A big reason for that, I believe, is culture. Both of my parents are South Asian boomers that align themselves with more holistic methods of medicine. They find issue with the psychiatric industry, and deny that anything is psychiatrically wrong with my mother. I don’t entirely blame them for this, it’s quite normal for older or more conservative members of the South Asian community to not seek life saving treatment, whether it be for mental health, substance abuse, etc under the pretense of, “what will other people say”. Add on top of that, the general stigma against schizophrenia in our society, as well as the, some might say, rightful apprehension some might have against our psychiatric industry. The same industry that was (and is in cases) notorious for the mistreatment of patients with mental health issues. A part of me, in retrospect as I sit now and type this, doesn’t blame my parents for not seeking help.

My father believes that my mother has had black magic cast against her, and thus thinks the voices that she hears and talks to need to be prayed away. However, finding a “priest” who’s capable of doing this has been hard for him, so alas, he has taken (to my knowledge) little to no action in seeking proper care for her. My mother, on the other hand, suffers from what I believe to be anosognosia. If I’m to walk up to her and tell her that I’m concerned that she’s parroting ideas of the government putting a chip in her brain and recommend taking her to a psychiatrist, or a general physician at the least, I’m met with eyerolls and a puff of air that reeks of annoyance as I’m told, “that’s exactly what THEY want you to think. There is nothing wrong with me”. They alluding to what I can only imagine to be the government.

I’ve been helplessly watching my mother’s descent into madness over the past 5 years, and it’s been the most excruciating experience of my life. I lost my mother to a degenerative disease that slowly turned her own brain chemicals against her. I also lost my ability to see myself in the future.

What’s the point of life? This is a question that most people alive find themselves asking. There are entire religions and philosophies claiming to understand the answer to this question: catholicism, hinduism, nihilism, etc. When I was younger, I often wondered why I was put on this Earth, and it felt like an enlightening experience to figure out the answer to this question. However, after watching my mothers descent into this unforgiving illness, one that spreads like a virus and affects not just the host (my mother) but those around her (family and friends), I find myself asking this question in a much darker tone.

Schizophrenia as far as we know can be passed down genetically, meaning there is a possibility that I can meet the same fate as her. I’ve spent the last 5 years playing with this idea in my head on a near daily basis, and I find that both then and now, I find myself descending into my own form of madness wrapping my mind around this. I look in the mirror and very honestly don’t recognize myself anymore. I’ve become depressed, more so that I ever have. What’s the point of doing anything if I’m to end up like her? I’m failing out of college, I’ve spent the last 5 years numbing myself with food and drugs and partying. I went from being a straight A student with plans for my future, to now struggling to get out of bed and do my work. I find myself on a near daily basis staring at my computer screen yelling at myself to get my life in order, to read and do my homework for my classes, to shower, to nourish my body with whole foods. And yet, day after day I find myself unable to do any of the above. I spend my time dilly dalllying, scrolling on social media, and crying myself to sleep.

What is the point of working towards anything if there’s a possibility of me ending up like her?

The second part of this whole ordeal that I find the most difficult to grapple with is how isolating this whole experience has been. Schizophrenia, an illness that impacts less than 1% of the American population. It would be one thing if my mother was suffering from, say, substance abuse. Everyone knows someone that struggles from this, which is unfortunate don’t get me wrong, but you’re not alone in this battle. There are countless books, videos, documentaries, articles, podcasts, support groups, etc tailored to those whose family members are alcoholics, cancer patients, even those with Alzheimer’s or dementia. Schizophrenia on the other hand seems so hidden, so underground if you will. The average American’s experience with schizophrenia is either in passing by those who are homeless and suffering from the illness, or in forms of media like movies or TV shows that associate the illness with extreme forms of violence. Schizophrenia is not understood or intimately experienced by laypeople, which makes it an incredibly isolating journey that I feel like I’m trekking solo. No one my age seems to fully understand how this whole experience has truly turned my understanding of life and the human body into a fragmented maze that I cant seem to escape.

I guess my reason for writing this, aside from the cathartic element of self expression, is to ask: to those who have family members who are schizophrenic (extra brownie points if its a parent), how do you keep going? How have you found the will to keep living your own life despite the drowning feelings of grief or anxiety you experience?

How do I return to a place where I see a future for myself, and am actively working on it in this present moment? I feel so lost, scared, and stagnant.

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Number one just because your mother has a brain disease doesn’t mean you’ll get it too. Has she been to a psychiatrist and has an official diagnosis? It is unusual to have a schizophrenia diagnosis so late in life. Could be early onset of dementia or Alzheimer’s. Best thing is to take care of yourself. If you did get it There are some really good antipsychotic medications that one can take and live a normal life. Maybe see a therapist to talk this through- please don’t destroy your own life over a fear of something you don’t know for sure will happen- fear-future events appearing real- I attend Alanon and that helps me keep things in perspective. Enjoy your life, look for the good things, do things you enjoy, fill your life with joy, surround yourself with good friends- make a gratitude journal- you can’t cure, control or cure your mother but you can start today bu taking good care of yourself- be well-

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Thank you so much for sharing your story here,
It is beautifully written. You touch so many important subjects regarding the effects of schizophrenia on our family and ourselves.
I am sorry to hear that you are struggling with the thought of possibly one day having schizophrenia as well.
I know there is a lot of research available about the chances of genetically getting schizophrenia.
I am a sibling my brother started experiencing psychosis around 16 he has had good and bad years since then was never even diagnosed until around the age 35. He also suffers from Anasognosia does not believe his diagnosis.
There have been many paranoid delusions about the government tapping into his thoughts. Stealing his ideas if you will.
I sometimes think about will I eventually get this but I try not to let it over rule my mind, and hope that if I do I’m educating myself on how to help myself and how I would handle it . If I had any control whatsoever many do not.
I have often asked myself why him and not me. I don’t know anyone else in my family from the past present or future who has schizophrenia.
You brought up culturally the thought that your mother may be cursed I feel like this has happened for so many years with people and people are not diagnosed or they do not want to accept a diagnosis ,
A lot of times people just have that person in their family who does things a certain way or that aunt or Uncle who has always been that way and the family has learned how to act around them.
I’m so sorry grieving the person our loved ones used to be is one of the hardest things about this disease.

I do hope you have support for yourself join a nami.org family support group if you have not already you are not alone in this journey even though it is so isolating as you said!
I would like to thank you again for sharing your story I really needed to hear that today.

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When faced with a similar dilemma around your age, I chose to hide my concerns and covered up my academic failings and eventually dropped out after going through the charade of a “fake” graduation. Around that time I followed an older brother’s path into mental illness. But I did it differently. I had a few choices: give into the illness, take a fallaciously easy way out, or fight as best I could against it. But to me, with some intellect intact, it wasn’t a tough choice, since the other options had no good outcome: either a possibly painful and less meaningful existence or pointless escape that had a likelihood of being unsuccessful and put me in an even worse situation.

Embracing treatment and accepting the likely genetics of my illness, I decided to make my life matter by acting as if my life mattered. No one else can do that for you. I avoided harmful drugs, as implore you to do. I came clean to my parents and sought treatment. I got a job. I started studying part-time locally with the goal of completing my degree. I branched out socially. I got an apartment of my own. I found a partner. Tens years later, I finished my degree. I advanced in my career, and retired early shortly before the pandemic. In retirement, I pursue hobbies, do volunteer work and teach some classes.

Meanwhile, my brother has done very little with his life. He also finished his degree, but worked very little in his field. He self-medicated with alcohol and the combination of his illness and his drinking led to many hospitalizations, arrests, accidents and some jail time. He has a felony trial coming up, and as a non US citizen, he faces possible deportation to a country he’s spent only a few months in if convicted. He’s finally started treatment again, but it took the whole family banding together and refusing to bail him out. The sad thing is his bipolar disorder diagnosis and his symptoms are considered less serious than my schizoaffective disorder. He may finally turn his life around, but as a caregiver I’m skeptical.

There’s a quote from The Shawshank Redemption I feel is relevant here, “Get busy living or get busy dying”. I feel you’ve embraced the second while barely considering the first. Half of my siblings haven’t been diagnosed with a mental illness. My father lived most of his life undiagnosed. Three quarters by most measures had successful careers and meaningful long-term, if not life-long, relationships with comfortable retirements. None of us had easy lives and there are no guarantees in life, but not trying seems a sure path to failure.

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Hey Niv,

Your story was really touching and I think community helps a lot when talking about this seemingly taboo mental illness that doesn’t get enough help or mention. I really believe that 1% of the population is not an accurate representation because as you mentioned a lot of cultures don’t acknowledge the diagnosis in the same way as we do with western science. I have a friend that is 42 and hasn’t acknowledged his own diagnosis despite obvious symptoms (talking to himself, psychosis, repeating the same things over and over, paranoid delusions, etc.). It’s so hard to try your best to help them see that medicine and therapy can help them and they reject the idea and worse accuse you of being against them -which couldn’t be further from the truth. Of course there is a genetic link but, it doesn’t mean you have the gene. The good thing is you know the symptoms and have educated yourself about the disease which means you will take the right steps if you do have it. From what I’ve read from various resources out there try to be patient with her and get her to talk about her feelings in a nonjudgmental way and be there to support her. I hope she one day gets help although the system and family systems as you’ve mentioned don’t seem to be in our favour, there’s always hope. Some good things to think about are there is always new developments and I think AI can help lead to better research and perhaps future treatments. I know a few people that have also used character.ai and chosen the psychologist character by Blazeman(a former psychology student designed ai chatbot) to help with advice. Obviously it’s not a replacement for real psychologists but good to have something for those who can’t afford one or need something there in the interim. Real support groups like this and others such as NAMI could also help. One other thing is there seems to be some evidence mounting for a link between some autoimmune diseases mimicking symptoms of schizophrenia and some doctors are doing spinal taps to decipher this as discussed here: Mary Had Schizophrenia—Then Suddenly She Didn’t | The New Yorker.
I’m wishing you strength and hope and thanks for sharing!

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As you see a support group is very important.
Maybe their suggestions or their own stories will help.
My son has been dealing with schizophrenic
since 2012, he is now 39. On a once a month injection, which has some side affects.
He says he is not sick, but, every time he goes off his meds, ends up in psych ward.
Luckily he has a studio apt in our house.

Take care of yourself and if depressed, talk to someone, or join a support group.

My son didn’t plan this, but we all have to deal with it, with love.

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I sense a lot of fear in relationship to your Mom but also about your future. It is important that you find a good therapist who can help you through these issues.
One thing that my daughter who deals with a mental illnesses has a support system. She has a list of things we need to check about her life to prevent a relapse. Not sure your Mom is at this stage. Does your Mom have a therapist and support system? Maybe more later.

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Also if your Mom has anosognosia or denying a mental health issue read Dr. Amador’s book I’m not sick, I don’t need help. He uses the LEAP which helps you come alongside the person’s struggle. L=Listen E=Empathize A=Agree P=Plan.
I used this process with my daughter after her second break and it helped me focus on her and her struggles.
I do hope your Dad can get some support as well. NAMI family to family program is free and helps a family member understand more about mental illness.
Take care of yourself and remember there is always HOPE.

First, I read your story and I’m sorry for the family situation you’re in. You’re not alone; schizophrenics destroy families just like my brother Billy destroyed our family.

I have also thought a lot about the possibility of becoming schizophrenic. Since my brother was schizophrenic, I run a much higher than average chance of falling to this dreaded condition. This is tempered by my age; since I’m “over 65” my chance of meeting this dreadful fate is decreased.

But you have to look at who you are. I’ve always been very different than Billy. I’m very quick with math and an electronic design genius. I’m very ambitious and motivated. Billy on the other hand, has always been a “slow learner” and quite lazy and apathetic. I’m a big animal lover, while Billy was quite callous and inconsiderate.

You’re not alone. Your concern is quite understandable. Having a family member with mental illness is a terrible burden. You really have to take care of yourself first.

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You are not your brother and you might find what you need in therapy. Talk through all this grief, shame, anger etc. with a professional.