Children of Schizophrenic / Schizoaffective Parents, How do you find the strength to keep fighting for them?

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I’m new to sharing my story in a forum. I should have done this sooner after reading some posts. My mom has schizoaffective disorder. It started when I was 7 years old and I am now 30.

It was a very rough time back then. First there was only sadness that I saw in her and lot of tears. Soon after she told me about how my Dad got killed, murdered, and the man in front of me is just a copy, not real, but here to harm me. She told me about many men standing in front of our house ready to unalive us, the moment we would step out. I was very afraid as a child. But my dad was there to explain it all to me. Even Though he got upset a lot, he still managed to make me understand that this is not my mom talking but rather her brain not working correctly. When she finally turned hostile against me, by planning to jump off a bridge, my dad took me and we moved out. She came to my school a bit later, looking for me and when my teacher wanted to take control of the situation and put me in front of her, my mom cried. Stating that I have passed too and I am only a copy of the real child she has lost.

These are actually the very few clear memories I have from my childhood. She did therapy afterwards and she also got medications. She believed she had a “Nervous breakdown”. She was mad that my dad moved away and an 11 year custody battle followed after.

She had her ups and downs throughout the years but never as bad as back then, until 2017. It got immensely bad, refused medication, hearing voices, being paranoid. I tried to help, especially with her housing and financial situation. We might not have the child-parent bond but she still is my mom and she does not have much family in the country she lives in. I had visited her in the clinic and it was just very hard for me. It unlocked memories I had long buried or forgotten. With the help of some social workers I had as a child, we got her a guardian that took care of a lot of things. I felt like we were getting somewhere and I continued with my own life, by moving to another (neighboring) country.

For some odd reasons the court allowed her to dismiss said guardian after half a year. We as a family didn’t even know that. All I did to help her, all the time I put in and she just kicked it away. She was stable-ish until 2019. Pandemic was hard for everyone but it did something else for the people who are already fighting certain battles. She almost lost her home, she was more stubborn than ever and even though her brother lived with her, everyone just called me and asked me to fix things. From neighbors, to uncle, courts and my brother. I didn’t even know what I was doing but I tried to work thru all that pressure and expectation, collecting evidence against my mom to maybe get her into the clinic by other means, while at the same time getting her a new guardian, because how am I supposed to do all the help, while in a lockdown in another country? I am grateful for the court and social workers who don’t have to help me but they have been giving me great input. When she finally had the guardian she was willing to go into the clinic by herself, get new medication, while the guardian got her a lawyer who managed to persuade her landlord to let her stay in her home. I could finally breathe, for a bit and deal with my own life and other people around it. Last year I lost my best friend to cancer. Usually she would be able to say something to give me strength and I already miss her, but moments like these make me miss her even more.

Today I got a call from my 18 year old brother, he thinks that she might be in trouble again. That there is no guardian because she suddenly has a lot of money to spend. While she had the guardian he had a strict financial plan for her. Her money spending has always been an early sign of an underlying problem.

I don’t even know what to do anymore. I feel like my life is on standstill, waiting to fix the next issue that she causes. While I do work great under pressure and the past has shown me that I can accomplish many things, I am just drained of it all. I can not always be occupied by it.
I’m in a very loving long term relationship and my partner is very understanding. He gives me a feeling of vacation, homeness and a drama free zone. He is ready to start a family. My mom, his mom are all nagging for a kid. But how can I commit to a child, while I am kind of co-parenting my mom? I would no longer have the capacity to fix everything. Who will be there for her then?

I know this is a long post and I am very sorry for it. It was hard to narrow it all down. But I am very interested in how other people manage their parents’ situation and balance their own life. Are you also kind of alone with it?

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Hi Rina,

I am so sorry for your loss, losing a best friend at any age is difficult and you really need her support in your life. Your partner sounds wonderfully supportive, maybe in time he will be able to become your best friend as well as your partner.

My MIL had scz, as did one of her siblings. My husband’s childhood was rough and he made the choice to distance our family from the chaos of her life as much as possible.

NAMI offers a course called “Family to Family”, my husband and I took the class years ago when we realized our son had a mental issue of some sort (later defined as schizophrenia). The class offered excellent advice and we were able to make a plan of how to proceed with our son - thanks to actually doing what we learned at Family to Family.

The first lesson is that your life, your partnership and future children must always be your priority. Helping your mother should not be your priority. NAMI teaches that we must prioritize making sure everyone else’s life stays on track. Personally, I think of it as “containing the damage”. My son’s never-ending struggle must be contained to his life and not damage the lives of the rest of us.

I understand how easy it is to get caught up in the lives of parents with issues. When our family members have troubles, those troubles do tend to be urgent and they will happen over and over and over again. It takes time and effort to learn how to live easily and happily without waiting for the next shoe to drop.

Like NAMI also recommends, a therapist for you can help you make changes in your life. You are looking for a compass to help you move forward, a therapist is a good place to start.

If the family pattern is living circled around Mom’s latest crisis, this will be a hard habit to break and the others might not understand. Good luck to you and may you have the strength to follow through with your decisions.

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Welcome to this site. Do come back often to read and to post.

I agree 100% with @hope. Her comment below is very very wise, although it may be hard to accept for you: "The first lesson is that your life, your partnership and future children must always be your priority. Helping your mother should not be your priority. @hope "

You DO need to help her as you can, but not overtop of your own priorities. Schizophrenia is a lifelong illness, your mother, unfortunately, may never manage her own life properly. I believe you have to let her live her own life. And you live yours.

You did what you could, she threw away the care you set up for her. Let if go. Live your own life, have your own partner and children.

A friend of mine, a lawyer and his 3 siblings, bought a home for their schizophrenic brother. They set up a trust and let him live his own life. Eventually, he walked away from his house and disappeared “traveling”, so he threw away a stable life provided by family also. It happens.

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Welcome @Rina - none of us wanted to be on this forum - but it provides hope and light for those who come. You’ll realize you’re not alone. All caregiving stories have sadness, loneliness, and fear. We are in this together - doing our best to show love to our family member in crisis, while not sacrificing all of our own lives. Hang in there. - Sando

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I thank you all for your replies and suggestions. And you are right, I thought I put some distance and boundaries up, but whenever there is something I fall into a default mode of “I need to fix everything asap”. I do feel guilty if I am not available right away, it’s an old “habit” of mine. But I will work on that!

I will have a look into NAMI, I am not sure if I qualify for it, because I am from another country but maybe there is a similar program where I live.

Again, thank you all for your input. I think I stressed out a lot when I heard the news of my mother. After getting in touch with her temporary guardian, he told me that she is actually doing fine for her condition. The matter has been exaggerated by the few family members that are living in her area, which makes my work/help way more stressful than it already is.

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So many hugs. It’s horrible to know exactly what you are talking about but I understand. My mother has BP type II that is well controlled and my brother has SZ. (untreated until recently, with a story that involves a lot of familiar elements otherwise.)

@hope Everything you mentioned is spot on. I have had to deal with being the “fixer” for most of my life, and only know with more therapy and insight have I stepped away. I’m in classes for my college degree and landed an outside job (non-caregiver) that I have loved.

Before this, I was my brother’s full time caregiver, as he refused to consent to any outside carers and kicked them off his case, even though we and many others worked hard to get him the help. More recently, I had a phone call with him that entailed him blaming me for his issues/calling all my family members via search apps, for their phone numbers ect. That’s stopped with a lot of interference on our end, but he still continues to harass us via his delusions. For now all of us have his number on a record that automatically goes toward a legal file reconfirming he cannot and should not EVER be released from State care.

No one in the family has the mental, physical, or financial means to care for him anymore, and he’s never really developed a life that he can call his own. His friends are mostly scammers and creeps (re: drug dealers, which I’ve found to always be more dangerous and risky than the users) It’s sad, but you cannot change them. Their mental health condition is theirs an theirs alone, without legal recourse, you already know it’s a long and hard road to accept that, with what limited resources their are, nothing will really change their life circumstances unless something like a miracle happens.

Given the number of times my brother had “miracle” delusions and wacko faith/spiritualism healers promise him the moon and back, I hold little value in them, although I still wish and hope that some change would be possible.

In regards to your mother’s care, getting her into a state facility OR permanent conservatorship with someone else (Guardian Ad Litem) might be the best option to preserve your own MH and her wellbeing. My brother has become resistant to any of us handling his Tx over the years despite direct evidence that we’ve done the best we possibly can for him (esp. trying to preserve his right of choice for medication or care). His file takes up a whole safe if not more, of my parents house, and lawyers, friends, and others have spare/solid copies of all the information which proves he is a risk to the public and himself. Due to his MH issues, there’s no way for him to have the records expunged OR to have decisions made without medical and legal counsel present.

He’s in a facility now and will have the option to move to a special housing unit for independent living away from my family for the first time in years. It isn’t great, but my parents are too old/ill to take care of him and they don’t want to die working. My dad already moved heaven and earth to keep us safe and cared for with my mom’s issues and he can’t/doesn’t have the energy anymore to deal with my brother. (Medical Issues and a recent Heart Attack). My mom has been stable for ages with the same medication and medical/legal set up that we really only adjust for things like their aged care, now that we are thinking about it.

At this point, my entire family is on the same page. We have to let him do what he will do and go where he will go. The quote “Am I my brother’s Keeper?” Gen 4:21 is a damning one but applies in our case. We can’t keep him locked up. We can’t keep him pushed away, so putting some monitoring in place and giving him enough support to be cared for is the best we can do.

Making adult social services aware of her case, (I suspect you’re very familiar with them) might be the best way to get the ball rolling, without having everything fall to you again. Remember, as I know many a Social Worker who pressures others to taking care of their family members again, you have your own life. NAMI recommendations in family to family, run contradictory to the social care model, so sticking to boundary preservation despite an “expert” outside opinion is essential. Bring as much evidence or date/time proof as you can. A Family Law attorney will be able to subpoena the correct documents if you give them a timeline/list of major instances in MH decompensations and lack of care. Her landlord can actually back up anything she refutes so far as failure to care for herself, as can your family, if they are willing to get involved.
They might view it as a betrayal, but if you frame it with the reality that neither they or you, can fully take care of them all the time, they might become open to letting other counsel and organizations take the reigns again. They need to help get services on the same page when it comes to her state, and the lack of ability they have to getting her cared for, ect. It’s neither healthy or realistic to see adults and young children who need to earn their way to a decent living put in the position of permanent caretaker in this day and age. In a better world, that might have been possible but it is not the reality.

On a lighter note, please look at some hobbies. Try anything that seems interesting, YouTube and thrift stores can be very accommodating to learning new things for little upfront cost. I hopped onto gardening and crafts via these free resources, and it’s been awesome to experience freedom and co-workers that are completely unconnected to anything to do with MH or MI like my brothers. All the best.

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Hi @Rina

I am the son of a schizophrenic mother. Though our situations are different. I’m the older brother. I am estranged from my mother going on a decade now. Though she lives in the same state.

Just wanted to write and say I know how hard it is having a parent who’s not there to be a parent. Who says things that aren’t true.

Sending you love and compassion.

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