Urnotalone: Is there anything in particular, or perhaps a combination of things, that you attribute your son’s improved condition to?
Thank you for sharing 
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Have you considered a dual diagnosis treatment facility? Straight up drug and alcohol rehabilitation is often not friendly to mental illness. I’ve gone through rehab to hear lifelong addicts refer to ADHD, bipolar, and PTSD sufferers as “crazy”. Having a streak of activism in me, I promptly responded, “What chemical imbalance kept you putting substances into your body after losing everything you loved? We’re all crazy.” I’m sure that doesn’t describe most rehab stints, but there are so many reputable dual diagnosis facilities available that it might be worth looking into.
Good luck!
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Thank you so much for the list! Seems as if putting together a care package might be in order.
My mother used to swear by NAC for anxiety and depression. What do you feel are its major benefits?
Thanks for sharing!
Yes, I have my eye on two of them. He has to want to go and that has been the problem. They are extremely expensive and there is no guarantee he won’t leave. This is where we are now. Thank you for your kind words.
I have been crying almost daily since my son’s diagnosis of paranoid schizophrenia in 2013. It is the saddest and hardest thing in the world to bear! Our children/adult children aren’t the same. I think about my son who is 29 now when he was a sweet little guy with blond curly hair and blue eyes that twinkled and he was my angel. He was my firstborn. I’m crying now as I write this. There is nothing like how a mother feels about her child’s schizophrenia. At first, I told people. I told people I didn’t even know! I didn’t realize the stigma was really so bad! I tried posting a little bit here and there on FB with NOTHING, not a like, not a comment, not a private message. I was devastated! I was hurt! And I was ANGRY!!! I wanted to lash out! I realized that sympathy would be hard to come by, but empathy was impossible! One day (I don’t even remember how) I found some FB groups (private, closed, secret groups) one in particular relating to parents of children with Sz. It was a very good thing. I know I am not really alone in this awful sadness. All the mothers (and fathers, but different than mothers) felt EXACTLY the same way. It’s a “feeling” hard to describe, until one mother said to me, “It’s like a death.” Then I discovered more and more information about this very particular type of GRIEF. It’s called Ambiguous Grief or Enduring Sadness or Chronic Sorrow. You will see yourself in any of these. I do not believe the sadness ever truly goes away. And there is no real treatment for this. We just have to learn to cope and hopefully someday see that there is a reason for everything and that we are here for a reason. I still haven’t really come to grips at all with my sadness and despair, and yes, there are days I literally cry all day! Thankfully, my son is medicated and does well enough on an anti-psychotic medication, he lives about 20 minutes away with his dad (my ex). But I don’t really know if he is happy. He says he’s not depressed, but does say he has anxiety. Pretty apparent, as he doesn’t go anywhere, except to get his monthly injection. He doesn’t drive anymore, so doesn’t come see me. I have to go to him. He doesn’t read, watch TV, have a driver’s license, doesn’t have a cell phone and doesn’t want one, doesn’t use a computer, has no friends except for his sister who also lives there. He’s never had a girlfriend; although he is very handsome! And I’m really not biased . . . everybody says how good looking he is! But his teeth are looking pretty bad and his fingers are yellow and dirty from smoking so many cigarettes. He doesn’t have conversations, just answers questions, with one-word answers. He has all the negative symptoms. But he does now take a shower every day or at least every other day. And he still likes music. He listens to music and smokes cigs and walks around. Schizophrenia is genetic in my family.
I hope you find some comfort in the private groups, if you have a FB account. If not, there are other forums. Just start Googling. I hope you find some solace. I am quite isolated myself now because I just don’t have any interest. I’ve tried anti-depressants, but because I’m not really depressed (not clinically) they don’t work. I read and read and read and research every question that pops in my head.
Thankfully, I live with my fiance out in the country and we have a good life together. He tries so hard to understand.
I just feel so bad for my boy…
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I do not believe in really FULL RECOVERY, but I do believe there is some hope, if you do all the right things, and you have a team and you are on top of it ALL THE TIME!! Unfortunately, for my son, he is unwilling to do anything but take his monthly injection. It just about kills me to know that he basically has no life. He has family who love and care for him. He is safe. I will always be very very sad, and I know this is kinda normal for us (parents) I also do not have any false illusions. I am not pushing him, other than to now and then ask him if he might be interested in something or other, but it never works. He is sweet and gentle and a beautiful soul. He has retained his core personality. Yet, I just can’t seem to get over the sadness.
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I do that, too, my eyes are full of tears more often than not, and I can’t wear eye makeup anymore. Most days, I have the welling up and the tears everywhere, but there are days where I cry, sob for hours! It’s very painful! It doesn’t help that I’m very empathic and people always confide in me. But who can I confide in? Yes, the support groups (private schizophrenia groups on FB) do help and it is also important to educate yourself as much as you possibly can.
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I think as mothers, we all feel exactly the same way you do! I describe it as like a death too. I too get sad almost beyond consoling when I think of him as a little boy, my angel, my firstborn, and I have a very hard time looking at pics of him, playing when he was little. And that’s so unfair!! I’m crying right now too. And I will start crying at unexpected times, and sometimes I really cannot stop! But somehow, I manage not to cry right in front of him, I’m cheerful and funny and laughing, but the minute I start driving away (he lives with his dad) I start crying. The next day or two are horrible.
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As I said, I do not cry right in front of him, but he has caught me crying. I don’t think he knows I’m crying for him, but it did maybe upset him a little bit. It’s hard to say for sure, because he is so flat. But one day on the phone he asked me if I had been crying again. So even though they seem like they don’t feel emotions, they DO! In fact, I think they probably feel emotions very strongly, they just don’t know how to express them. It’s similar to their thoughts, I believe. There is actually a lot of thinking going on, but when they try to express what they’re thinking about, it comes out all wrong . . . hence, no more talking, or very little . . .I’m sorry about calling our children or other loved one(s) “they.” We all understand, though.
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You say the first few years. I’m into this journey four years now and the sadness hasn’t let up. I believe it will somewhat. Someday. I too have been doubled up in a ball crying, wailing, sometimes screaming to the sky. I’ve hurt my back. I’ve choked on my tears. We love our children so much. People who do not have a child, adult child, or loved one, but especially an adult child who was normal for the most part for about 20 years, do not “get it.” And they never will. Hopefully. I wouldn’t wish this profound sadness on anyone. I just keep praying he’s happy.
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Yes, the crying is therapeutic and I read that our tears are actually cleansing! Toxins are released with the tears. But I still wish I just didn’t have reason to cry so much!
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I don’t cry very much anymore, but I remember those days - and I’ve had 12 years to accept things.
I don’t mean this in anyway to sound like I’m being harsh to anyone who’s still grieving the loss of their child, and this is most definitely a loss, when I say what I’m about to say. It’s just what’s working for me right now.
I tell myself that crying never helped anything, and it certainly isn’t going to help my son.
I need to be strong for him, because he can’t be strong for himself - and that I need to leave my fear behind, because I am very afraid, and be brave enough to do the things that need to be done to help him, regardless of the risks.
I might make mistakes - in fact, mistakes are inevitable - but what happens if I sit here & cry & do nothing? Then, nothing happens. Or things get worse.
So, these are now my five words that I repeat over & over to myself until I pull it together:
- strength
- fortitude
- tenacity
- courage
- hope
That’s what I need to have to keep going - not tears.
The tears still come sometimes, but not nearly as often as they used to. Since my son has always kind of mirrored my emotions since he was a baby, this has been good for both of us.
Am I randomly sad sometimes? Yes, I am. I get this melancholy feeling of loss from time to time when I see something that reminds me of how much my son has missed out on. Like today, I saw two boys, maybe about 17 or 18, walking through the Wal-Mart parking lot just having a normal conversation. My son used to have friends and be like them. Not now. Maybe he’ll get there again one day.
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One of my favorite quotes is: “Things are as they are. We suffer because we imagined different.” Rachel Wolchin.
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My heart goes out to you. I think because you don’t see your son as often you are only left with what you noticed at your last visit? Could he gone to the country for a day and perhaps you could plan some things close at home to do. Do you have animals?
My sis in law is a Pdoc and she and I cried together when my son was first diagnosed but she said …, sooner or later accept it and go on.
Now I know this woman and if it were her daughter, she never could accept it but that is what we all must do. I cried every morning for a long long time but I don’t cry everyday anymore because I focus on little victories and am so busy keeping him from getting set back. I try to increase my faith and have began to attend church again. I look for ways he and I can do service projects together. It’s not great but it can be so much worse. At least I have him here on earth and I’m hopeful that after 25 things will smooth out a bit. She said if you can keep him alive until you are 25, you’ll be doing something so that is my husbands motto.
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Yes, we are in the same boat. My son takes his meds, but refuses to try therapy or engage in activities outside the house. The only things we do are - go to the bookstore to get a book; get coffee; go out for pizza at one place, or occasionally try another restaurant; get his hair cut once a month.
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Songs can make me burst into tears without warning. “Yesterday” by the Beatles, especially so.
Was there something that you loved to do before his illness? When I couldn’t stop thinking about my son it worried me. I finally found just one thing that I could think about that put him out of my mind for a little while. My mind needed the break. My life preserver was something I was deeply passionate about that requires all my concentration. While I know I will never get my life entirely back, I have gotten some of it back.
As parents we have losses also. We don’t just lose our children, we lose a part of ourselves. Some book I read, I don’t remember the name, had the line “I will survive this, I will be changed forever, but I will survive”. I identified with that line. I was able to accept I was changed and would remain changed. The old me will never be back and I do miss the old me, I was definitely more fun before;) But I will be okay and I need to be okay to help my son. I had to embrace the changed me. Probably a good thing because it looks like I am stuck with this version.
The first time in years that I really enjoyed myself and really laughed again was with another mom whose son had scz that I met at Family to Family. Not right away, so many people were in such deep crises in the class, but later when I started loving my son again. I had always loved him, my handsome, smart, sweet athletic, funny son, but I needed to love him with his illness the same way. That has been the biggest relief of all, to feel the same way about him as I did before his illness was apparent. I once told a doctor, before I knew what was going on “this is not my son”.
I know now, it is my son. He just has an illness and that illness has caused him to lose all those old adjectives for different, less attractive, adjectives.
As his illness grew and I, cluelessly, struggled to figure out what was going on and how to fix him, I began to isolate myself as much as his illness was isolating him. Turns out you just can’t say to other people, no matter how good a friend they have been - “hey, my son bought a gun and I don’t understand what’s going on with him”. I asked my best friend what she thought and she just brushed me off saying I was making too big a deal about it. If I ever see her again, I will tell her, it was a big deal after all.
My siblings don’t know. They aren’t supportive people, they just argue all the time. My son’s illness would just be fodder for family gossip or a big family argument. Just my mom knows. I can’t blame the scz for the loss of my sibling relationships, refusing to take sides in their arguments did that decades ago. In my family, there is no neutral territory.
We parents can’t let schizophrenia take our lives away, we must resist.
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Slw you are so right. I wish i could find that courage After 12yrs the fear is still overwhelming at times. Fear of burying my boy, fear of having to deal with the hostility, fear of his anger to me or to my younger child, fear he might hurt one of us or his partner and of what will become of him.
The daily crying others talk about only let up a few years ago but the low level grief is always beneath the surface.
I was so happy when my son found a partner a few years ago but the relationship has turned out to be so volatile. The partner doesnt speak to me and encourages his negative views of me and my younger son. She regularly tells my son to leave so he stays with me until she asks him to come back. He has taken to calling me in the middle of their arguments in which she says he is abusive and lazy - she doesnt seem to understand the negative symptoms. On saturday i calmly told him he can only be responsible for his behaviour and some of it is unacceptable. I have told him this many times and he accepted it. Did not go down well this time and i got a call in which he shouted at me warning me not to speak to him like that again. He put the pbone down on me. I know i need to speak to him but i just dont want to!
I find the unpredictability of his reactions so hard and i continue to live in a state of anxiety.
Hope. Its same for me. My family are not interested. Sons father was no help when he was alive. Its a tough road to travel alone. Important to reach out and find support wherever we can.
Sorry all. Venting. Not many words of hope today. There are better days. Just have to accept the down times are part of life as parent of an adult with sz.
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All along, in the back of my head, I knew that my fear of making things worse was actually getting in the way of getting him the help he needed. But, it took him getting really, really sick this year to force me to partially come to grips with it. I’ll be very clear though - it wasn’t fully my choice at all.
And, I’m still selfish in a way. He would probably be better off in the “right” group home where he could learn to be more independent. Maybe that will happen one day, but I’m not quite ready to give up that control and trust the universe to take care of him.
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I dont think its selfish to want to care for your son. I wish i could have done it. My son is 35 and has not lived with me since he was 25. I feel guilty, if i had known more i might not have been so fearful in the early days.
He can live independently but is emotionally still very immature. I wonder if distancing myself would make him less dependent but i dont know. I dont want him to be even more isolated.
I think you probably know whats best because your son has lived with you through it all. I sometimes feel as if i have no clue.
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In a way, we were lucky that he had his first break at 15 while he was at home.
However, it robbed him of a lot of life’s normal experiences.
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