Family and Caregiver Schizophrenia Discussion Forum

Feeling bitter and angry my son’s illness isn’t socially acceptable

Hi,
He has been taking risperidon for 16 years. In the beginning he had extreme anxiety and vomiting often. He also would not eat and lost an alarming amount of weight. But he never experienced the hallucinations like he did before the meds. He also hasn’t had a psychotic symptom. What is his trouble is he has the negative symptoms of this illness. Doesn’t go out in public and has no interest in working or getting his drivers license or such things. But I’m very thankful for the good things. He keeps busy with different hobbies and YouTube has been great because he watches it to learn recipes, crocheting, crafts, and recently playing a banjo.

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Hello.

He sounds a lot like my relative, except that the latter, who was coping, or so we thought, until his divorce several years ago, has had some breakdowns/psychotic episodes that we attribute to adhering only sporadically to his medication plan. It’s hard to tell, since he lives alone, becoming irritated if we ask whether he has remembered to take his meds. It’s probably cold comfort for you to read this, but your son is extremely blessed to have such a loving force as you in his life.

The negative symptoms are such a hindrance to having the normal sort of life for which we all hope, particularly as they seem to tip others’ off to the fact that the sufferer is not “normal”. Although my relative is unusually sensitive to what he perceives as differential treatment or even the odd stare from strangers, I believe that the negative affect plays a huge part in others’ lack of acceptance and understanding. Ditto the media and the gun lobby, blaming every violent attack on “the mentally ill”, of course. Our own brothers and sisters should know better, however. Perhaps they are in denial or fearful that their own youngsters may develop problems.

My relative has been on Risperidone for ages, despite our attempts to get his doctor to change his medication to one with fewer side effects. We’d love to have him try Caplyta, for example, but it’s not on the preferred drug formulary for his plan. We thought that the low blood pressure, dizziness, anxiety, and apathy he suffers when on Risperidone might be enough to justify the change, but apparently not.

The first psychotic episode that my relative suffered, decades ago, had him standing stock-still in the middle of the front yard, staring intently for some time at the house across the street, prompting the neighbors to call the police. (We don’t know whether they interacted with him prior to calling the cops, but we understood why they thought that necessary.) His brother told me that he had known that something was very wrong when their mother, who was upset and crying at her son’s unprecedentedly erratic behavior, pleaded with the afflicted brother to come into their house, to no avail. When the police arrived, the SZA brother denied that anything was wrong, saying that the others didn’t know what they were talking about.

In more recent years, he was a stay-at-home dad, but found time to visit his elderly and now-deceased father often, running errands and providing assistive care. Now, even as he lives in a home that we purchased for him, buying groceries and other essentials with our help, he has increasingly struggled with being alone, and the burden on his brother who lives nearby has become overwhelming. For example, he becomes upset if the brother, who hasn’t yet retired, doesn’t visit daily, and becomes really distraught if the brother is delayed, as can happen with heavy traffic or unexpected phone calls. We’ve been looking at options other than a group home, but have concluded that he would not do well in an ordinary retirement complex, because his views are extremely left wing and he is highly intolerant of others’ perspectives. That’s too bad, because other singles we’ve known have been quite happy in such an environment.

I do think that, at this point, others are probably not going to change, particularly given the state of human nature. It would be nice if they could at least assume a veneer of acceptance, as polite people do regarding others whose behavior/appearance goes beyond what they might consider normal. Ignorance and fear are difficult to surmount, unfortunately.

My spouse’s aunt lost her husband to dementia, and, shortly thereafter, her 50-something child developed early-onset dementia. She handled the situation at home as long as she was able, subsequently finding an assisted-living facility that would take them both, so that they could be together, but she no longer had to assume responsibility for her child’s care. That was a very smart decision, as the child survived the mother by several years, and the latter died knowing that her child would be taken care of.

IMO, there’s a special place in heaven for those of you who are taking care of special-needs folks on a daily basis.

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Top DC federal judge criticizes “schizophrenic” DOJ approach to January 6 casesHere is yet another example of the misuse of the word. I am old and very tired. Please, if anyone could possibly get the word out that people suffering from this illness are human beings!! This society is ready to make such a commotion over anything that offends anyone. It is actually comical how hypocritical they are! Let’s get together and fight! I can’t do it alone…

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Have you seen this?

nami.org/Get-Involved/Pledge-to-Be-StigmaFree

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Maggotbrane uses the term “neurodiverse” . I believe this is the most correct adjective.

My older son has autism - I have never been comfortable with the tag-on “high functioning”. It has always seemed to me, even in his infancy, as though he had expanded brain capabilities.

Both of my sons are quite intelligent.

My only concern with using neurodiverse on the forum in the past has been that our newbies might be confused. As you all know, we still get a lot new people on the forum regularly who have never heard of anosognosia. They arrive here frustrated and angry with their neurodiverse family members. We have had several instances in which the families have gone back and educated their doctors about anosognosia.

I have thought about using scz/neurodiverse -or maybe it should be neurodiverse/scz? Yes, I like that better. Thoughts anyone?

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Some clarification of “neurodiverse”:

I borrowed it from the ADHD and autism communities. It expands on the concept of neurotype which is an attempt to classify types of brains. Neurotypical in their parlance refers to possessing a “normal” brain, while neurodivergent means having something different. Most people with autism and ADHD have no memory of their brains being typical, while people on the schizophrenia and depression spectrums do (absent anasognosia).

I think of it as a more inclusive antonym for “normal”, but I’m more comfortable with folks on the autism and ADHD spectrums laying claim to being neurodiverse, because they coined the phrase and differences in their brains are likely innate or acquired early in life.

I’m not entirely comfortable with “high functioning” either. The autism spectrum has Asperger’s syndrome. My guess is “Aspies” are likely the clever (and proud) folks who coined neurotypical, and if you hang out in their circles it’s used almost as an epithet. The TikTok algorithm doesn’t really know what to make of me, so I see a lot of autism and ADHD creator content and their jargon rubs off.

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I will ask my son for his thoughts on what he thinks of neurodiverse applying to his brother.

In the past he has preferred “Autie” to “Aspie”.

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@Maggotbrane @hope @RoseofSharon — I’ve always disliked the ‘Schizo’ label … every time I need to refer to it, I have to look up how to spell it, for one. I’d rather use a term such as ‘Neurodiverse’ and perhaps we could include a suffix to distinguish it? Maybe something like Neurodiverse-perception? I think that is more palatable than describing it as a mental disorder. So much info on the internet is written in a way that is offputting if you are told you have a condition and then look it up. My mother does not accept the label Paranoid Schizophrenia. If I have to refer to it at all, I will reference “anxiety” or “paranoia”. I believe if we improve the terminology and work on how it is presented, it will have a positive influence on acceptance {for those living with the condition and society in general}. I also prefer the term ‘condition’ over the term ‘disorder’. In any case, I recently read this excerpt on Goodreads, referencing opposition to a book written by a mother of a son with Autism. I don’t want to get into a discussion of the book as this is not the place for it, but it upset the Autism community {rightly so} and one reviewer had the following to say {which I believe aptly applies to any number of Neurodiverse conditions}: “ Autistic people, like all people, need acceptance, patience, and love. We don’t need to be fixed. We need to be accepted. First and foremost, we need to be accepted by our own families. We need to feel loved and safe in our own homes. We need respect for our stims, our special interests, and our privacy.” The reviewer concludes with some relevant quotes from a book about how some parents are inadvertently doing a diservice to their kids — trying to change or ‘cure’ them, rathering than accepting their actual reality and needs and supporting their personal agency — instead, they are “Enmeshed in fear and loathing toward autism, they (Autism Warrier Parents) condition themselves to forget that their children are fully human, and that humans respond best to compassion.” I see a lot of anger here on the forum, and I know a lot of that is related to frustration with not receiving enough support. It can be very daunting and alienating. As much as possible, we have to be clear about what it is that we need from others. Don’t be afraid to ask {nicely} — if you don’t ask, you don’t get. Don’t be afraid to insist when necessary. This goes for everyone in your circle {friends, relatives, doctors, pharmacists, first responders, etc.}, as well as your loved one whom you are trying your best to support. People cannot read your mind, and they are often caught up in their own worlds — you need to reach out and be specific — it isn’t always going to be rosy, but sometimes you’ll be pleasantly surprised and be glad you did. Those times will lift you up. We can all use a lift and as much as possible try to reduce friction, anxiety and stress. Make time for self-care … my cousin turned to healing crystals to help her cope with her son’s condition {same as my mother’s} and she said it helped her a lot. <3

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Hi, my “circle” is a straight line. It starts from my son and ends with me. Thank you, I’m just going to accept it takes all kinds. As I stated I’m growing old and haven’t the gumption to start any kind of change. I reckon I was just blowing off some steam… I am thankful to God my son is happy for now…

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@RoseofSharon and others … my son (SZ) also is intelligent and kind, just different. My whole family thankfully loves him and embraces him as an integral part of us. On the other hand, his father (my ex) continually rejects him. My son has tried over the years to build a relationship with his father who keeps putting him down, focusing on the things he doesn’t like about him and rejecting him. It hurts me so much to see, and my son won’t talk about it so I don’t know how much he is hurt but I imagine it must be a lot.
On my side, we (including his sister, step-dad, grandparents, uncle and cousins) believe he’s amazing. He’s getting close to finishing a uni degree which he’s worked so hard at and hasn’t given up even though he has had to take longer to do it than most students. He has been living independently and taking care of himself and socialising a bit. Why can’t his father see his achievements and encourage him instead of belittling him and discouraging him? I’m so proud that he is my son and I would never place conditions on him or try to tell him how to live his own life. It makes me incredibly angry and sad and frustrated to see him being bullied like this.
You’re all doing a wonderful job in your love and care for your loved ones. Keep going. We can do this.
:heart_eyes:

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Hi Lillies,
What an inspiration you’ve provided! Thank you!! It’s so comforting for me to learn of someone with my son’s illness to be thriving!!!
As far as his father is concerned, many “fathers” kick their offspring to the curb, whether the are healthy or not. He is of no consequence. Your son has you, and obviously you are doing an excellent job as father and mother! My son’s Dad left the picture long before he was diagnosed. Some men are just too childlike themselves to take on the role as father. Weirdly, I never had hard feelings. I figured he would not be beneficial in my son’s life anyway. Thank you for your lovely response, you made my night!

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I do like neurodiverse-perception. I checked with my older son and he had two thoughts. First he said that he believed the term neurodiverse is meant to be an umbrella.

He pointed out with the genetic research that places autism, bipolar and schizophrenia on the same gene thread, he believes that schizophrenia is present at birth, the noticeable symptoms simply make a delayed appearance.

I still worry about confusing newcomers to our world - as though most of us aren’t confused already :smiling_face_with_three_hearts:

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To me, neurodiverse-perception may more accurately describe the disorder, but it may also confirm the notion that sufferers aren’t ill, but simply are able to see real things that the rest of us cannot, as someone with ESP claims to be able to do. Integration disorder is good, but may be confused with some sort of racial issue. What about simply perceptive or perception disorder?

BTW, thanks for recommending Dr. Amador’s book. I called my BIL yesterday, and we had a very pleasant conversation, with no mention of his illness. I have sent copies of the book (via Amazon) to his siblings, suggesting that we try to find a local doctor who embraces this patient-driven treatment philosophy, as his current doctor wanted us to force him to have ECT against his will.

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Please thank your son, I appreciate his valuable input!

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Hello @RoseofSharon, @oldladyblue, @hope. I can relate to the way you all feel. I’m very moved by the support & kindness I’ve seen on this forum. Our Sz son, age 37, lives with my husband & me. He’s got a younger brother & wife who are sometimes present to him, but the responsibility mostly falls on us. We include him in all our activities. He’s sweet, gentle & bright, although he’s plagued by auditory hallucinations. We have an enormous extended family, but they’ve mostly forgotten about him. He’ll reach out to connect, but doesn’t often receive a call back. It breaks my heart knowing the stigma he endures, even among family members. He volunteers twice a week for a local food pantry, but is unable to do much more than this. He dreams of returning to college, but it’s not possible for now. We take it one day at a time. I’d like to join a support group, if any of you know of one in the DC area.

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I feel bitter for similar reasons, where my 2 brothers … my sons uncles will do stuff with him. But my other 2 sons, his brothers do nothing with him. I am also very bitter and angry for another more recent incident…more like explosion! I have been caring for my son for 26 yrs who lives with us. I have done everything in my power to help and support him, including gaining qualifications in mental health. I had a plan written up which was signed both by his then nurse, my son and myself, and it worked. He has treatment resistant schizophrenia and a medication was found that worked. With my plan and the medication , even though he had the odd blips he has never in 26 yrs been sectioned. Then someone who didn’t know him or me, decided to mess with his medication, even though I protested very loudly, I was ignored! So predictably he relapses , at the peak of the relapse in the space of one week separate incidents occurred, he was arrested and kept in police cells overnight, as well as other things that happened he was involved in a car accident with previously no accidents in the 15 yrs he has been driving. Then came the sectioning, my first experience of this in the 26 yrs he has been diagnosed. I won’t go into that, only to say I’m shocked at how patients are moved here there and everywhere like a parcel. !!

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Hello @therese , if you can find a NAMI in your area, I would recommend that. They have support groups and classes and are very very kind volunteers.

@sasone2one I am so sad at the relapse your son has suffered due to someone messing with his meds after being stable for so long. That you kept him from being sectioned in 26 years is a testament to how good your plan was. I hope things work out for you and your son.

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Hopefully you have everything documented, also with the nurse. I would maybe look into talking with a lawyer. Too see if there is anything they can help you with. Whom ever it was that changed his meds. “BAD word” its like they don’t care that they are messing with peoples lives. I feel your anger, and am angry just hearing this, and hope and pray there is something that can be done.

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I have everything documented including dates, I put in a complaint 4 months ago and about a month ago I was told they are investigating! I phoned them yesterday and said this has gone on long enough now and I think it is pretty straight forward and could have been investigated in a month not 4 ! I know they are going to try to get out of it, but the facts I put to them I know and they know they can’t.

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Sounds like your doing all you can good job! I hope someone is held accountable for what they did to him. And 4 months that’s just ridiculous their just hoping it will all be swept under the run and forgotten about. You go tiger mom, they don’t know who there messing with. Hugs and prayers to you and your son.

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