Realistic Boundaries

Family
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I have a 20 year old daughter with a preliminary schizophrenia diagnosis. She had her first break in October, which lasted about two weeks, and her second break in March. Unfortunately, the second one was more severe and lasted until mid-June. She’s been hospitalized twice for a week each time since October and has spent eight weeks in jail since March.

This has been so overwhelming for everyone as it was completely unexpected. It’s like everything about her personality is opposite of what it used to be. She claims that she’s taking her medication in jail, but i have no way of verifying that. She is definitely much calmer and hasn’t said anything strange in a couple of weeks. She goes to court soon and has asked if we will bail her out and let her come home. Obviously, I don’t want my daughter to be in jail. However, I’d be lying if i said i wasn’t nervous. I’m so worried about what will happen when she’s released. Honestly, my stress level has been less while she’s been in jail.

I’m looking for advice on how to set realistic boundaries. I’d love to make medication compliance a condition, but i don’t know if that’s realistic. Also, I’ve been told that we need a safety plan if we’re going to let her come home. Has anyone successfully made one and what type of things did you include.

Thanks for any advice. This is all new to us. Still trying to learn to navigate it. We’ve been going to a NAMI support group and are planning on taking the Family to Family Class.

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Hello from another Mom.

I too can relate to your concerns. First, let me say that I have attended NAMI’s Family to Family class. I would highly recommend attending! I found it intense but helpful.

My son is now 30 and was diagnosed in his 2nd year of college.

At the beginning I had the same apprehensions as you. After awhile, I realized that even with the voices, my sweet boy was still there!! IE, didn’t worry he’d strangle the cat. That’s my raw honesty.

We have seen many psych docs and settled into a groove with his new doc. I even started working for a mental health office. Talking with providers was a huge help for me. The more you know, ya know?

Anyway, the most important thing I learned was to NOT stop his meds. At the beginning, he was doing pretty good. His friends told him he didn’t need medication so he stopped. That was the first decline. If he had only stayed on them then, he probably wouldn’t be suffering the way he does now.
Was told that in Europe they prescribed injections vs pills to find patients we’re much more compliant with their meds.

From personal experience, the injectables worked soo much better. He was doing great, kept the same (key word here) job for a year!

His then doc switched meds unbenost to me. For six months I watched him decline. Like he wasn’t taking anything at all. Changed back and it hasn’t worked very well. He suffers with the voices being cruel and of course the negative affect on our family.

Hope you see the trend here. This is just our experience but wanted to share I found it extremely helpful for us.

So would recommend speaking to her provider.

As far as boundaries goes. That’s a BIG ONE for us!
He has leaned hard on me and when he feels he needs me, he’ll call like 18 times in a row. Says it makes him feel better to hit redial. Doesn’t matter that I may be working or at an event.
Most of the time I am strong for him. But honestly? There are times I don’t have the mental capacity to help him.
My daughter and I got a hotel room the night before her first baby shower. He called me 81 times!
We’ve talked many many times about boundaries. Every soo often I have to go radio silence for a day or two. To just reset the clock. It’s worked for us but it will be an ongoing struggle.

Thank you for reading and hope you found something helpful fr our experiences.

Another Mom

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@JustMom Thanks for your response. I love my daughter very much and just want her to be happy and healthy. I’m coming to the realization that our life is likely never going to be like it was before her first break. I’m just hoping that we can find a way to peacefully live together.

Despite everything that’s happened, she still doesn’t seem to understand that anything is wrong with her. At this point we don’t have an established Psychiatrist. She’s seen three since October. I’m hoping that the court will order treatment as a condition of letting her out of jail. If not, i don’t think she will agree to take it. Without medication i feel that she will very likely either hurt herself or someone else.

Initially not staying here was her choice. She said she didn’t feel safe here and ended up briefly living in her car. We are going to agree to let her come home, but she will have rules. At this point they will be fairly basic. Must be respectful, keep her room clean, help with basic chores and let us know if she’s not coming home at night. I’m honestly nervous, but i have to try.

Again, thanks for the support. It helps knowing that we’re not the only family dealing with this. This is such a horrible disease. I pray that they find a cure or at least better treatment in my daughter’s lifetime.

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Hi, your boundaries sound good and hopefully things go somewhat smoothly. My son is 28 and it has been on an awful rocky road, He is not always med compliant and refuses exploring new meds and the one he is on, Abilify isn’t t working well , anyways I could go on and on about him. He also will call me 30 times a day sometimes and want me to take him places immediately, no matter what I am doing, he has so many delusions, I am learning to set boundaries and take day breaks from him. Good luck and stay strong.

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You are in a hard situation and no easy answers. What helped me with our daughter is reading and applying the LEAP principles that Dr. Amador has in “I’m not sick, I don’t need help.” Also here is Dr. Amadro website: About Dr. Amador - LEAP Institute

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Hello, My daughter came home from being in a hospital type setting for almost 2 years. She is doing well, doesn’t recognize she has SZ so there are still battles. She wants to get off of the shot she is now taking. Even though I think its good, If things go back to the nightmare they were before, I don’t know what I will do. The side effects of the shot are causing her a lot of physical pain and making it hard for her to breath. Making her very weak. I can see the effects of the shot on her and I don’t want her to suffer that way but she is so pleasant to be around right now. Ugh! I know that sounds horrible of me. Right now its please and thank you and I love you. Well we will survive or go crazy together this time. To get to this point it was playing a lot of hard ball, having her committed and even calling the cops several times. She is still on the committal for meds so that helps, she has no choice but to be on something and to be seeing a psychiatrist. Without recognizing she has a problem she would never seek help herself. Hope things work out for you and your daughter.

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I’ve never heard of a safety plan, I hope someone comments on that. All I’ve learned so far from every support group is that there’s not much good news. I try to be hopeful but I think we are resigned at this point that we are going to have to offer some kind of care and if he stays on his meds things are good, but if he stops taking them and we don’t know and weeks go by and then everything falls apart.

Just a background my son is 22 and started having breaks 3 years ago. Was finally diagnosed last September and had a good combo of meds and he was even insisting on monthly med checks with his provider. He was compliant, we had to set a boundary that he had to have his own place to live. First at that time we didn’t have a spare room for him to stay and also we realized it was too mentally, physically and emotionally taxing on us to have him living with us. We told him he could come over whenever he wanted, eat here, all fine. But we said no drinking here and no marijuana.

He complied with that but then 2 months ago he apparently stopped taking his meds. I have no idea why and then almost 2 weeks ago we realized he needed to get stablized. Well this time he refused to go to the hospital because they were going to kill him. And I was adviced by his provider to call 911 if we thought he was a possible harm to himself or others. Well the deputies said he didn’t do anything to warrant forcing him to the hospital so I asked them to suggest he go voluntarily. He called the cops in the past and responded well to their suggestions. Not this time, my formerly non violent son tried to assault one of the deputies, and they believe he may have assaulted someone earlier that day. So now he’s in jail and they know we won’t post bail. it’s because we don’t know what he will do and he could potentially make it worse for himself or put others in danger. It sucks, and I haven’t heard from him and now he can’t be in the hospital while he’s in custody because assualt 3 is a felony.

I hate that our hands are tied because we really have done everything we could to help and support him. I’m sorry that he has to be in custody but I hope in some way this helps, I realize it could make things worse, but we don’t see how bailing him out would necessarily result in a better outcome.

I think whatever boundaries you want to set you should.

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It is better that you don t bail him out because there would be no place that he could go if he was let out. Hopefully they will give him meds in jail and he will get stabilized. My heart goes out to you and your son and family. This disease is so devastating and so good at breaking apart families. Keep up hope, your son is still young and things can get a little better with time.

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I’ve talked to several of the psych nurses at the jail and they did reassure me that they have a robust mental health branch, better than most jails, and that they do restart AP but nothing else. Boy guy, and we are just kinda have a sigh of relief sadly because even though we definitey didn’t want this to happen it does give us a break. I did everything I could to try and convince him to go to the hospital. Sure wish he had listened.

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What a relief that the jail has a robust mental health branch - I wish we heard that more on the forum.

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I’ve heard of making a safety plan when in a destructive relationship especially in the area of domestic violence. Maybe you could tap into one of their groups that helps with domestic violence.

I’m not sure what AP is but if he’s only getting meds he also needs a good therapist along with the medicine helps. Support from family is also important.

It is truly sad that a person who really isn’t violent ends up in jail. Our daughter during one of her psychosis was approached from behind by the policeman and she thought he was going to do her harm thus fought with him. She was jailed and would have had a felony charge but we were able to hire a good lawyer who worked with us so she ended up with a misdemeanor.

Since she had been temporarily released from the hospital at this time she was then hospitalized again. It was heartbreaking for us that the hospital had let her out before her second hearing during which time resulted in the jail situation.

Another comment is that you can now call 988 for a mental health situation. Also in our state we have police specially treated to work with mental health situations and that has made a huge difference for us.

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AP “Anti-Psychotic” medication. shorthand also includes “Dx” diagnosis. Tx. Treatment. ect. SZ is Schizophrenia.

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The judge released him from custody yesterday and it’s definitely apparent that they got him stabilized on his AP meds. Even his attorney says she could tell he was better. I took the leased car that I co- signed back to the dealership and they were happy to buy it back. I just can’t trust him with it because he’s had so many fender benders. He took that news just fine. We have a good public transportation system here. He’s found a room to rent already and he’s trying to get his job back. He says he thought his meds were changed to 1 per day instead of 3 or 4 so hopefully I’ve given him some ideas on how to not get mixed up on his dosage. The judge wants to see his medical records so I’m really hoping they drop the felony assault charges, even if the judge makes him do some other mental health support program.

I’m always ridiculously hopeful, it kinda sucks but maybe, just maybe, he’ll not want to end up in jail for 2 weeks ever again.

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My daughter has been in jail for a three months now. She has a court date coming up. He attorney feels that she will likely be eligible for bail this time. We have agreed to post it, but I’m very nervous. She’s been medication complaint and seems to be doing much better. However, i worry that she will stop taking her meds as soon as she’s released. I also worry about how disruptive having her home will be. We have a lot of healing to do as a family.

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Is there any way to have her living somewhere else in her own space?

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Also, is there any way to make her release provisional on engaging with her care team AND taking meds? I know it is intrusive but if the meds and her carer’s are well engaged with her care, pulling her out of that will be more destabilizing than letting her stay in without you posting bail. I know this isn’t a nice thing to do, but she has reached a period of stability that the changes of an outside environment could make her backslide or go even toward a worse outcome. The thought process from her side is: “I needed meds only while I was in jail, I’m out and feel better I don’t need meds.” and then stops taking them.

This is the story of my brother. He cycled into homelessness when my parents weren’t able/willing to tolerate his non-medicated behaviors and drug addictions. He was also convinced that my parents were persecuting him and weren’t “his real family” because people were “calling” him to move to different states. (None of which is true, in obvious provable ways. He can’t furnish any details that aren’t either available online/easily disprovable as false. He didn’t have a phone. No one called in the caller I.D log, and nothing came for him in the mail.)

Alternatively, see if they have housing programs for her, due to it being pre-sentencing, I don’t know if half-way houses would be an option but reaching out to other services connected to disability housing or care/monitoring. It takes a team and very often NON family members to really keep our family safe.

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@hope @katydid5088_bert At this point we
believe that she will be staying with us. Her attorney intends to make medication compliance a condition of her bail. He did say that he doesn’t think the judge will grant bail unless we agree to let her come home. I’m not sure i could live with the guilt if i don’t at least try to let her come home. I feel that we will know fairly quickly if she stops taking her medication. Her personality is just so completely different. The rough part is knowing that i will have to report it if I suspect she not taking it. I’ll hate it, but I’ll do it.

My husband and I are still trying to determine what boundaries we’re going to require. For sure the biggest one will be no drugs. That’s a dealbreaker for us and isn’t good for her recovery. I am going to try to get her to sign HIPPA release forms as soon as she’s home. I’m hoping she will be grateful for everything we’ve done for her and agree.

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From my experience with my son, what I believe utmost is that they will work to make what they want work. I know, sigh, it’s straight from Amador.

My son never wanted to live with us, he said it clear as day. He didn’t care about boundaries or ultimatums because he didn’t want to live with us. Fast forward to this past year, now I live with him in his home taking care of him and getting him to all of his cancer appointments. He wants me here very badly. He had a scary psychotic breakout last fall and was yelling obscenities and for me to get out of his house. So I did, I packed up some stuff and was on the highway for home within 30 minutes.

Well that knocked him right out of it. He called apologizing and I returned the next day. We haven’t had that happen again.

If she wants to live with you, she will make it work within your boundaries.

There are times when my son (still unmedicated) is so different. There are still times when it seems like our “real” son shows up and we do treasure those times. Embracing and working with all of his presentations has been tricky.

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Hello,
There are so many complex issues with this illness. One step forward and two back.
My daughter has had schizophrenia for almost 20 years. The is medication compliant, lives with me and is not violent. She lives with me and I am thankful for this. Although I have low expectations from her regarding goals at this point, she must take her medication.
Your daughter at 20 is young. If you decide to have her home, you can have a plan in place in the event she becomes non medication compliant, violent or destructive such as calling the PET team. Best thought plans often fail with this illness. Sadly, It took the death of her father, my husband for her to settle down. I take it a day at a time. Good luck.

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