Hi all. I’ve been reading through this thread and am wondering how you all managed to understand this awful, inconceivable illness that most of you had no previous knowledge or experience of, but your husbands can’t? Why is it you could go from shock, fear, confusion,etc, etc to a place of understanding while it seems to completely allude them?
Please know I’m not criticising or disrespecting your relationships or spouses, but what you’re describing makes me feel mad on your behalf, while amazed and inspired by your patience, tolerance and your unrelenting drive to know more, understand more and support your children. They certainly aren’t lucky to have this illness, but very lucky to have you all in their corner. God bless you
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I think a lot of it has to do with just being a mother. I can’t speak for every woman but for me, when I found out I was pregnant, my entire internal landscape changed. Who I am began to fundamentally change and it’s never stopped. Having her, being a part of her creation changed me in ways I can’t exactly put into words. I have, for many years, called it my “Metamorphosis into Mom”. It was a slow process happening over the days, weeks, months, and years since her conception. Being a mother requires you to rise above. Failing your child or children, for almost all mothers, is not an option. It’s not possible to quit or give up. You’re responsible for them for your entire life, even when they’re grown and on their own, even if it’s just to be there to support them through the challenges of their life.
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I think it’s that this topic has a self-selecting group of respondents…
What I have noticed is that people who think things “should” be a certain way or think that people “should not” behave in certain ways have a harder time paying attention to what is actually happening and then trying to understand why.
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One other thought I had on this later tonight. For me, it was a quest for answers that helped me manage to find understanding. I wanted to understand what was wrong with my child. I spent several years following my husband’s thought patterns. He felt she was just deliberately disobedient, a liar, and acting out so more discipline (from me) would put her straight. I was too easy on her and allowing her to verbally abuse me. I spent three years following that only to discover it was completely wrong and we were making it worse for her. My instinct is that corporal punishment is never an answer but for some reason, men seem to believe in it. It’s the idea of using brute force to get something done, dominating it into submission. I think men are wired that way, it’s a part of their DNA. Whereas for women, we’re built to nurture, to teach, and you can’t do either of those things if you can’t first understand. I sought to understand my child first, so that I could find a way to help her. Once I understood her, I could understand better why she was behaving the way she was. I learned years ago in a parenting class that children (and all humans really) act the way they do for a reason. The puzzle is understanding why.
And you’re right - the drive, the maternal NEED to know more is unrelenting. Right now my every waking available moment is spent seeking to understand and it’ll continue until I feel I have a decent grasp on all the aspects of this for her. Even if it takes the rest of my life.
I think the hardest part is standing firm in believing I know exactly what is best for my child and sticking to that in the face of others opinions. My husband is more supportive than many husbands are, but he has his flaws too. His stress levels get too high and he takes his anger out on me randomly. He doesn’t mean to (and he’s never physical) but I’ve had to realize he has his own breaking points and tolerances and ways of dealing with it. This whole situation has caused some boundary shifts in our relationship. Fortunately the major of the time he’s kind, considerate, and loving. Every now and again when it gets too much he snaps for a bit. I’m still trying to train myself not to react or be triggered by it, to stand strong and no reciprocate. He always comes back to himself. It doesn’t help that this situation has seriously affected our sex life either - I don’t respond the way I used to, it’s like I’m muted. I can only guess it’s due to the extreme stresses every day. We’re still working to adjust to that “new normal”. There are a whole set of pressures on a marriage relationship as a result of all this.
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In our Family to Family class, after reading a list of symptoms, they ask the family members if they believe they struggle with any of the symptoms of mental illness on a lesser scale.
I think for some of us on this particular thread, our husbands do have issues of their own. Both of my husband’s brothers have paranoia issues as well as my husband. Their paranoia does not make them the easiest of people to live with, but they are able to hold jobs and have families, unlike my son with full blown scz.
A couple of years ago when we were attending a double memorial service in a different state for husband’s parents, our older son rode with us. We were in the middle of our Family to Family classes and brought the material to share with our older son. The instructors were trying to convince us Jeb had scz and we wanted his brother’s input. The hallmark of scz is the hearing of voices - don’t laugh, but at that point we had not hooked together Jeb’s auditory hallucinations as hearing voices. Even with Jeb living inside with us at that time, it took months after this car ride to actually hear him talking to his voices. He would leave rooms abruptly sometimes to go speak to his voices in private. Jeb likes some of his voices. Much later while reading on this forum, I finally realized the auditory hallucinations which were always people being ugly with him, which he attributed to anyone who was actually nearby, were indeed voices. Our FtF instructors thought we were in denial - given all Jeb could do and still can do on some days, I still think we were just ignorant. Jeb was confabulating his reality to make sense of it.
The lead instructor, if she were present now when I am writing this, would probably raise her eyebrows at all of you.
Back to the funeral. After the private graveside service - the two brothers would only attend if the rest of the relatives weren’t going to be present, back at the hotel, one of my husband’s brothers announced he was sure one of the aunts was already back at the cemetery digging up the flowers we had planted at the gravesite. This particular brother went into a bit of a tirade about how she hated him. The other brother added, “did you see the (other) uncle’s new boat? You know he bought that with money stolen from our parents”. Both refused to attend the church memorial held the next day because of all the anger they held toward the siblings of their deceased parents. None of this was real. After they left my older son said to his dad - How about we discuss YOUR brothers’ paranoia?
ALSO - we must factor in that Family to Family says the biggest struggle in marriages dealing with a child with mental illness, is that the two people are on two different levels of understanding. Its a bit of a road from denial to acceptance, people on two different levels are going to have disagreements - many of which will lead to the collapse of the marriage.
Some things in our lives we can’t accept - whether its denial, grief or ignorance blocking our path - until we have worked our way there.
When I was depressed for two years after learning both of my children would need kidney transplants, I isolated, felt anger at the stupid things people said, and tried to deal with the pain of my children having to suffer a future without good health. I wore sunglasses for a couple of years to hide the stupid crying that would pop out on its own. Finally, I read a simple novel with a character struggling with pain and in many ways the loss of her own self. A lot of my identity was wrapped up in my children. I had my own career working with a passion of mine, but my greater pleasure had always been being their mother.
The character realized she would never be the same again in her life. She also realized she would exist, but she would be different. I think I had to accept the loss of my self and embrace that I would be different. Fighting embracing the new reality of me took some time.
My passion is in sports working mainly with males. I know males have such feelings as deeply as females. I have often felt that men feel some things even deeper than females.
If men can’t protect their families, their sense of self identity is just as lost.
Takes a lot of work to process for everyone.
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Thank you all for your replies. No criticism was meant but what you have said here has helped me clarify a few things. I mainly come to this forum as my husband had schizophrenia, however my brother also has it (and 2 of my cousins, plus there is a long history of depression and anxiety in my family, but that’s perhaps a story for another time). My whole family struggled with what was happening to my brother, but what you said here is very reminiscent of my parent’s reactions. My father accepted it, but no way near as quickly as my mother, and perhaps never really understood it. He did try, but I know that he avoided a lot of discussions, although I think this was because he found the whole thing too upsetting. He and my brother shared a lot of interests and hobbies and were both artists. My father always believed my brother was infinitely more talented and it broke him to see that talent be subsumed. He was never good when any of us were sick as all he wanted was for us to be better, but he couldn’t make that happen. I figure that’s a fairly normal parental feeling. Anyway, your comments have made me understand their dynamic better, so thank you.
Hope, what you said about similar behaviours in all the men in your family was interesting. I’ve been reading a lot about separating the illness from the person and recognising which behaviours are the illness, not the person. I’m not sure if you’ll all agree, but I’ve thought of all my family members with varying types and degrees of mental illness and they all exhibited self focused and self centred/absorbed behaviours before they got sick. I don’t mean selfish or mean, or the negative connotations of this, but very focused on themselves. It manifested differently but was common to them all. The nature of schizophrenia leads to a focus on the self, but this was already there to a degree in those I know with this illness. Plus the need for few friends, isolation, distrust of people who seemed fake, etc. I’ve also read on another forum of early diagnosis in children as young as 8 or 10. Now I’m wondering when this illness really begins. Genetic condition, born with it, but the standard belief was it emerged in late teens/20s. Perhaps not, it’s just the symptoms worsen? Anyway, I think I’m going off on a tangent. Thanks again, understanding and knowledge are the best tools for coping with this and this forum is invaluable for providing it. Xx
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Many of us spend a lot of time wondering if some childhood behaviors were early signs. My son’s behaviors changed. When he began isolating his last two years at college, this was a huge change. He ha always been highly social. He had a classic prodromal with psychosis emerging about 7 years after his initial changes. My son has the insidious version of scz. He is now quite paranoid and fearful.
Which book was it? I read alot and that one sounds good.
I’m sorry I don’t remember. I read constantly and it was a long time ago, like 2002.
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I’m the same way. Very few titles or authors stick in my head and I get them at the library.
@Hereandhere And I have a friend who remembers authors names, titles of books and movies, she has a catalog in her head. She can’t believe I have to look at my current book to tell her who wrote it.
My favorite books are long - I used to look for them in the library by their thickness on the shelf. Now I borrow books from the library on my kindle - multi step process sometimes to find out the length of the book. I need a section called LONG BOOKS.
Easy to remember George RR Martin as I wait for the next book. Always could remember Diana Gabaldon’s name. I am a fan of her Outlander books, currently rereading because some points in the dramatization seem wrong. I can remember the name of Liane Moriarty, the Australian author. Her books are of a decent length and keep you entertained. They are quite different. I give her books as gifts to friends who read. I have to tell them, stick with it, some of her characters are tricky to like, it will be worthwhile.
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Linda,
He’s not disrepectful on a regular basis. He really has to be angry about something to get to that point. He and I are very close and have a good relationship. I think he knows that I’ve always been his biggest supporter and will always be there for him, no matter what. He knows he needs me and won’t do too much to jeopardize that support. He has gotten so much better since being put on different meds since mid-July. Huge difference. It took him trying to commit suicide and attacking his dad and going after me with scissors to get him hospitalized agaiin and the p-doc switching up his meds, but worth it for getting my “old” son back. Try to remember that it isn’t the “real” him when he’s been disrespectful. He is in there somewhere. I know it is so completely difficult when they are being hateful. I am hoping and praying you’re having a better day today.
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Hi Lisa,
I remember reading your story, and am really happy for the positive outcome!
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Odd thing, when I got married, my husband and I neither one had a strong burning desire to have kids. About 6 months after getting married, we decided to discontinue using birth control and see what happened. Three years later, I still hadn’t gotten pregnant. By that time, it was something both of us really wanted. We had almost given up when I turned up pregnant. From the time our first son was born, I knew that being a mother was my purpose in life. My kids are everything to me, so going through this journey with my younger one is just, as I see it, part of my “job” as his mom. When I had him, I signed on for better, for worse, in sickness and in health, just like my marriage vows. I honestly for about 98% of the time am happy to do it, am not resentful, and I still work full time! I had a rough childhood which I think made me extremely strong and self reliant and prepared me for having two mentally ill people to care for. My husband says I am his rock. That is my ultimate compliment! Anyhow, thanks for your kind words. It surely helps in the rough spots to have this forum.
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Thanks, Jan. It is nice to have some good news to report!
It is, but it probably shouldn’t be…
Bear with me a moment. My son is in his 30s. We have been dealing with this illness for approximately half of his life…part of the time prior to diagnosis. In the beginning there was confusion, hurt, anger because none of us really knew what was going on. Then there was the diagnosis and denial, more confusion and sorrow.
We moms, we like to think we are invincible–we got this for our child. We can somehow make it better if only…
In reality some days you may have a good understanding of what is going on. Other days you will be lost. Even worse are the days you see the pain and sorrow on your child’s face that will break your heart all over again. In the end it does not really matter what caused it and understanding does not stop their shifting sand of reality.
What you can do is learn to set reasonable boundaries–both for your daughter and you. Surprised you there maybe? You see, life is going to go on. Other people in your family are going to need you and you are going to need other people.
When my son was diagnosed it broke my heart, but his illness did not become the center of my world. We pulled together and included him in the process whenever able. However, there was no free pass. While expectations changed, there were still certain expectations of civil behavior (the exception being psychosis–that is a whole other story).
It has been a rough year for him, but recently my mom was diagnosed with Alzheimer Dementia and his response…Grandma and me are a lot alike and I am going to be there for her. Of course his being there is very different from my being there, but it is ok. Why? Because he reached outside his world and that is always a win.
Take care and do not burn yourself out.
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I just discovered this for my husband. Unlike my guilt which was around my inability to act and recognize, and some of the ways I acted toward her, his was feeling helpless to protect us all. It doesn’t matter that No One could, he wants to. And on top of that he is struggling to provide for us all as his income dwindles due to an incompetent dispatcher. We are both grieving in very different ways and for very different reasons. I worry for him because his grief is harder to solve. I can work on forgiving myself. His issue is something bigger and harder in a way because the expectation is unrealistic. He can’t fend off some invisible monster that is mental illness. There’s no beast to vanquish. There are problems to solve but only I can solve them because he isn’t a legal guardian or biological one. For now I have attempted to help him by telling him that him supporting and taking care of me frees me up to help her.
I think we should pin this post because there is always some husband somewhere freaking outJK
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My husband just the other day, looked at me and said: “I’m grateful for our insurance. You do realize that insurance is part of my contract negotiations? I’m only as good as the company I work for, and that scares me.”
He doesn’t talk in long dialogs. He just doesn’t. I heard him though…and I was glad he said something…as he made me realize something I hadn’t realized before.
He has to negotiate each and every time he hires on with a new company for insurance that will keep us from going under financially. He has to acquire, and then keep that job, and hope when this contract ends, that it will lead into another contract, with another agency with enough economic strength to provide insurance yet again.
There have been times of unemployment where we are buying our sons prescriptions one week at a time. Seroquel XR was $800 per month the last time we paid out of pocket, mmmm, a year ago? Savings goes FAST. We actually keep partial bottles of his meds as insurance.
I just wanted to say to other wives/mothers: My husband and I are very close…and yet, I missed this. The pressure he is under every time he goes to an interview. The fact that he has to discuss insurance from the very beginning, and worry he won’t get the contract if the insurance isn’t enough. We have had times where the insurance was insufficient, and it takes years to rebound financially. (At least for us, we have no extended family, one income.) The worry that he is under…
I didn’t know.
And I can’t help him.
Okay…I can bake the scones he asked for this morning!. 
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I would encourage anyone with a diagnosis to think about SSI or SSDI if possible.
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