Family and Caregiver Schizophrenia Discussion Forum

Do you ever feel trapped or in way over your head?

Sometimes it feels like it’s too much. Does anybody have the experience of taking care of a loved one suffering from schizophrenia all by themselves?
My mother is schizophrenic. She has a psychiatrist and takes her meds. But she has horrible psychotic breaks all the time. It’s not because she goes off her meds it’s just the way it has always been. And I have to deal with them all by myself. No support system of any kind.
I can’t get sick, or go out with the few friends I have left, or date otherwise she’ll throw a tantrum. It’s like I can’t have a life or she’ll have a psychotic break. The night before yesterday I went on a date for 2 hours, 2 blocks away from our apartment with my cell phone by my side all the time in case she needed me, and even so she had a violent psychotic break. Among all the virulent things she said when I got home she told me I could never leave her alone not for one minute. She’s still on the psychotic break. 35 hours and counting.
And it’s not like I ever planned to leave her. I assure her over and over that she’ll live with me until she dies.
But sometimes I need a break.
At least a couple of hours to myself every other month. It’s not unreasonable. I feel imprisoned. Does anyone ever feel like that?
In her mind I’m allowed to go shopping or to the drugstore by myself but that’s it.
All the friends I once had are married and having children and sometimes I resent my mother because I known I can never have that. And I feel guilty for resenting her.
These are the cards I was dealt with and I should make peace with it.
P.S.: Please excuse my English. It’s not my first language. I live abroad but do hope you can be kind enough to welcome me in this forum. I joined in yesterday and it has been very helpful so far.

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Yes. A lot. I tend to overdrink to medicate and forget this never-ending boat anchor of our 1% lives… And I’m happily married so we have a ‘team’ and it still gets overwhelming. Hang in there. Love always wins.

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Yes, your feelings are normal! You may be familiar with the idea that comes from the airlines: You have to first put on your own oxygen mask before you can help the child sitting next to you. We cannot solve all problems. I don’t think anyone expects us to give up our own lives for another person (although some may choose to do so). It does not have to be all or nothing. Yes, our lives are different, and yes, dealing with this illness can be time consuming and exhausting, but really, we need to take care of ourselves. I encourage you to find ways to do that. Our loved ones with SZ are typically more resilient than we give them credit for.

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I read some other post you wrote on another topic, and please don’t you ever feel like a failing father! You are there for your son which is much more than I can say about my own father who ran for hills and left me all alone with my schizophrenic mother when I was just a baby.
All of us here know how hard it is.
And you were brave enough to face you son’s condition and stay by his side. You’re definitely not a failure.
About your son’s meds: my mother’s been on Haldol but only during her psychotic breaks. Kind of a SOS medication. I’m not a doctor but I cannot imagine a person living on Haldol permanently. Of course every person and every situation is different. But I think you should follow your instincts and question his doctors about other meds.
And by the way, thanks for making me feel less guilty. I too tend to over drink and indulge myself buying lots of expensive shoes.
I’ll hang in there but you have to hang in there as well.

You’re very intuitive. I’m exactly on that crossroad: do I choose to give up on my own life or do I hospitalize her?
The former is more likely. But I’ll try to think a different solution. Not all or nothing you said.
I’ll take that into consideration.

Hi Joana,
If I were you, I would put your life first. it seems like as long as you live with your mom, you will not have a life of your own. Is it possible that you get help for her by hiring someone to help out a few days a week? How old is your mom? Would she be eligible to live in some kind of nursing home?

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When living with someone who has active psychosis, the answer to your question is: yes, Yes, YES! And to be dealing with it alone, wow, for sure. And to be dealing with it your whole life from childhood to adulthood, well, for sure you would feel overwhelmed. It takes great love, patience and a truly heroic effort on a daily basis to battle psychosis in your loved one. It is so hard to “find” your mother aside from the illness, it was hard for me to find my daughter.

Regarding Haldol, my daughter takes an injection monthly. It was THE only drug that stopped her psychosis, and she would never have taken pills for any length of time, which is why she had to be hospitalized 5 times in 2.5 years after her schizophrenia started at age 32. If I hadn’t managed things in a way to take advantage of police, court, hospitals and the medicine I knew worked for her, she would still be psychotic. She is in her “new normal” now, working, pleasant at home, saving money, a loving daughter.

If your mother isn’t on a daily medicine that works, I truly believe in trying forced hospitalization till she is stable, not psychotic, and on a medicine that works. The problem is keeping her on meds after she leaves the hospital. I was lucky, a court order to stay medicated or go back to jail after an arrest was the path that led to my daughter staying on her meds.

You deserve time away alone from your mother’s care, without her making your life horrible when you return. I once just up and left and flew to my sister’s 1000 miles away for 5 days as I was truly overwhelmed. I left without saying a word to my daughter. I hope you can find tips and tricks on this site to attain some peace for yourself. Although I can understand drinking wine and buying too many shoes. I did both.

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I could relate to so much of what you wrote it brought tears to my eyes.
The part about ‘finding my mother aside from the illness’ pierced me.
It is an every day challenge. That’s the root of so much of my own problems.
Since I was 10 or so I don’t call her “mother”. It was too terrible and unthinkable to have her for a mother. She beated the hell out of me and that wasn’t even the worst part. She would spend weeks without speaking to me (the silent treatment).
Apart from the time I spent with my grandparents I had a very unhealthy childhood.
I call her by her name and mostly by something that would translate roughly as “my little child” (that’s how my grandpa called her). It’s the complete inversion of roles. So yes, I can very much empathize with parents that have sz children. Even though I have no children of my own.
It was my coping mechanism not to hate her. It’s not like you have the tools to understand this disease when you’re a 10 year old kid.
But I’m an adult for some time now and I feel a great responsibility towards her. It’s my responsibility to take care of her. To take good care of her. To love her no matter what.
It’s not easy most of the times but it’s not something I can run away from.
Regarding the meds, I guess I’m blessed that she never even considered stopping taking them. But she’s been through every drug aprroved by the FDA and she doesn’t improve.
I have a bottle of Haldol in my drawer just is case. It indeed shortens the time span of her psychosis. Had to use it twice last week.
Thank you so much. Best wishes.
P.S.: hope you could understand something.
I should definently work on my English. Sorry.

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Just a quick note and food for thought:

There are many or more times that the people under your charge feel exactly the same way (trapped and/or in way over their heads). They may not express it well, and act out in frustration, but this is a source of commonality and possible empathy. Consider expressing these feelings when you practice LEAP. My thinking is LEAP and thus empathy should not be a one-way street. It’s a chance to express how your loved one’s state of mind and behaviour makes you feel-- not just the other way around,.

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Sometimes I do feel like it’s me or her, unfortunately.
I totally understand what you’re saying but what can I do?
Where we live we don’t have good hospices and/or nursing homes. And I can’t afford a psychiatric hospital for a life span period (she’s in her early sixties by the way), and even those hospitals are awful places.
It’s not like I could leave her there with a clear conscience.
But this idea of hiring someone is not bad at all. I’ll look into that.
I appreciate all you said, truly. I’m just not like that. She’ll probably give me a heart attack and I would still stick by her side.
Thank you for being so straightforward. Truly appreciate that and will take your opinion into consideration.

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Hi Joana. First of all- thank you for posting this.

I have never been in the position of responsibility with my schizophrenic twin that you have with your Mom. I am not my twin brothers guardian and nor would I want to be. The bravery and strength you have shown your mother is remarkable.

I’m responding to your post because no one should ever feel guilty for wishing you had a “normal” family life. It’s perfectly natural to find yourself imagining what life would be like if your mother wasn’t schizophrenic. It’s also perfectly reasonable to want some free time to yourself. You can’t continue to ignore your own personal needs forever without building a major resentment towards your Mom or her illness. I’ve tried with my brother. It didn’t work. I hope you don’t mind me saying- but it’s completely inappropriate for your mother to expect you to drop all your personal dreams and goals. It’s simply unrealistic. But only you can determine what kind of life you want and what goals to pursue.

The irony of having a mentally ill family member- is that we as family/loved one’s are placed in such bizarre circumstances- that we question our own sanity. I know I have. This website and NAMI meetings put me in a better place mentally.
Welcome to the site and this community.
Love. R-

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Thank you so much.
It feels lonely. My mother is not on a psychotic break anymore, but who knows for how long.
It’s like I’ve lived my whole life stepping on eggshells.
I’m not that brave or strong.
My grandfather took us in (and he literally saved my life). He loved my mother so much but when he realized how ill she was he made me promise him I would take care of her (and his elder son who suffered from sz as well, and my grandmother). He saved my life and it felt fair. It still does. My sz uncle has died but he lived all his life under our roof. It wasn’t easy all the times but I loved him very much. Always treated him with kindness that I can say.
My mother is very different from my uncle. She can be vicious and violent. But she’s my mother. I can manage it. I love her, afterall.
I won’t leave her.
Hope you can make my journey easier.

I hope Joana that you surf and read on this site when you have the time, you will learn so much here and find emotional support for yourself too.

By the way, your English is just fine!

It sounds like you are a true caregiver, having helped your mother, uncle and grandmother in your life. That is a family trait that not all people have (caring for their family members that aren’t your children). A friend of mine just passed on recently, she was 85, and her children are all just squabbling about her estate, no one has even held a memorial for her. She never had any support from her children. So sad.

It is best to find small ways to care for and comfort yourself, and to do them regularly, whether it is a bubble bath, some new music, favorite foods, etc. I would say that getting out of the house (perhaps leaving your mother at the same time everyday while you go out for a walk on your own? and then making it slowly longer each time?) or with a “babysitter” might be a good way to care for yourself.

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@Maggotbrane I am continually amazed at your insight and ability to express meaningful and helpful commentary that truly adds significant value. I am thankful for the many contributors to this site, but today, especially for you! Thank you for caring and sharing!