Just went through a hellish scene.

[Anonymous]

I am so sorry, OP. You sound like a great mother and what you describe is scary and sad. It could be any of us. There but for the grace of God. I'm sorry you have been dealt such a terrible hand. It is unfair and you're allowed to be angry and grieve. Hugs to you and the rest of your family and especially your precious daughter.

[Anonymous]

I'm so sorry, OP. The picture is enormously complicated and painful. I think the only part you can work on is your feeling of personal shame.

This is not your daughter's fault, not your fault, not anyone's fault. Please try to lighten your burden by knowing that it doesn't matter what Joe on the Street, or even your next-door neighbor, thinks about your daughter's mental illness. To hell with Joe on the Street AND the next-door neighbor if they don't have compassion.

Just focus on keeping your daughter and the rest of your family safe. Take deep breaths. You've done nothing wrong, and you will find a workable solution.

I hope you do have a place where you can go and cry and grieve: a therapist, a support group, anyone who will offer you kindness. I think you need that kindness most of all.

[Anonymous]

My prayers to you and your family OP.

[Anonymous]

We had a mental health crisis with our stepchild a few years ago and received really good advice and referrals from Child and Family Counseling in Fairfax. They might be able to point you to some resources.

[Anonymous]

HUGGS TO OP.

As a parent you do the best you can. Sometimes it is helpful to talk with a professional for outside guidance, suggestions, or even a sounding board. Perhaps you made the best decisions you could in the moment. If in a similar situation, could you be better equipped to handle things better? A professional helps guide you through these issues to help your family through these types of crisis.

What is the long term options for your child? She is an adult with a serious disability in which there should be public services and assistance. In my area, the JCC Social Services Agency in Rockville helps parents navigate the public assistance options for their disabled adult children. They work with people of all faiths. Perhaps they can guide you to an organization in your area or give you a starting point to begin.

https://www.jssa.org/service/individuals-with-special-needs/

[Anonymous]

Thank you all - this is OP. Will just quickly respond while at work.

Thank you all for kind messages, and I am so sorry for all the other parents here who are suffering like we are. I am glad we have this forum because otherwise it can be such an intensely lonely experience. My heart goes out to you all - I know exactly what you're going through but I pray your situations never get as bad as ours is.

With seeking government help, well we can keep her on DH's insurance (which is much better than mine) until she is 25. DH's insurance is good and has covered a lot of her treatments at private hospitals, but not all of it so we do make co-payments. I think the coverage w/government help will be even lower. But after 25 then yes she is going to need government assistance.

DH and I definitely need therapy but there is little time. With three kids and both of us working, it has not been realistic to try and look into that. I am considering some sort of online therapy though after reading these kind messages here. If DH and I can speak with a therapist online or from the phone when I'm home from work and the kids go to bed, that might be more manageable.

If you think this is the worst scene I have witnessed with her...far from it. Her real psychotic breaks happened 3 years ago. Now she is getting ECT, which insurance only partly covers. We are paying the rest out of pocket. But the ECT has been helping and she is not having these episodes as frequently as she did before. That is why we are hopeful that she maybe one day - we don't know when but God willing one day - she will be able to manage her life. Schizoaffective disorders are very hard to treat with traditional anti-psychotics so she has been on a cocktail of medicines to keep her going.

Their effectiveness has been hard to measure. It's like beating something with a hammer when what you really need is a chisel.

[Anonymous]

If your not being kind or supportive of this woman, you need to get your ass off this thread. How on earth could someone be more focused on the term "white trash'? -- instead of finding a way to be kind and considerate of this woman and her predicament. Ugh.

[Anonymous]

PO here. That's "you're" lest the grammar police come after me.

[Anonymous]

PP.. For crisssakes and these damn tiny letters on my phone.

[Anonymous]

HI OP, I really sympathize with your situation. My ex and MIL have bipolar, MIL's with psychosis. Psychosis is very scary. One of the hardest things is when it happens in public and it has just enough of an edge of reality to it that people don't know whether to believe it or not. It's one thing when a person is so psychotic they say God is talking to them or they've been contacted by aliens; people immediately see there's a problem. It's another thing to have a relative make crazy but possible allegations. Then, no one knows who to believe, and they just want to move away from you, which is really disheartening.

Some suggestions --

1) Please get connected with your local NAMI (National Association for the Mentally Ill) chapter. In addition to monthly educational and advocacy chapter meetings and support groups, NAMI offers courses about mental illness. I really recommend them for all of you, kids included. There are also services for "consumers," but it sounds like your DD might not be capable of taking advantage of these yet. Their 12 week family to family course is the BEST. Yes, that is a long time. But, it is well worth it, both in terms of education, and in terms of building support and being connected to others with similar issues.

2) Using NAMI or the Treatment Advocacy Center (in VA), please figure out about commitment or outpatient treatment laws in your state. Your child is over 18, which makes refusal to participate in therapy very tricky.

3) As part of #2, you should also get familiar with your local police mental health support services. Calling the police is a very scary proposition with a psychotic mentally ill person. Many police do not know how to handle this situation without escalation, which sadly, can end in violence to the MI loved one. Many states are getting better about this. Some have created specially trained police units who are knowledgeable about mental health issues and are more geared toward encouraging someone to treatment. You definitely need to have an emergency plan in place -- who do you call for what kind of problem? the police? the local crisis mental health team? your doctor? an ambulance? there are good resources on this thru NAMI, Treatment Advocacy Center and your doctor/health insurance company.

4) Who have you told IRL about your child's illness? Each of you (dad, kids and mom) should have real, live people that are your friends or people you know from support group that you can talk to about these issues. You will have to think carefully with whom to share. There is still a lot of stigma about mental illness. I have been surprised that some of my very well educated friends have basically suggested that my MI loved ones illness is my fault in some way. Obviously, those are people who aren't really part of my life in the same way anymore. I haven't cut ties, but I do realize I can't share my fulll self. I have been very surprised by the number of people (including family members) who have been VERY supportive and accepting.

5) Please look at the book "I'm Not Sick, I Don't Need Help" written by Xavier Amador, a Columbia Professor whose brother had schizophrenia. The book discusses in detail the phenomenon of ansognosia (unawareness of symptoms of illness) and ways in which family members can build communication with their MI loved one that encourages them to get and stay in treatment.

6) Another book -- by Elyn Saks, called The Center Cannot Hold. She is a professor of law at USC and has schizophrenia.

7) Another book -- David Karp, Burden of Sympathy. A wonderful book about the way in which family members conceptualize their responsibilities toward MI family members. Parents are in the hardest position because most of us never want to walk away from our child and would do anything to help our child get better. Yet, at the same time we are often advised by therapists to "put our own oxygen masks on first" or worse, told that we have our own pathologies (codependency) or are causing our relatives difficulties.

8) You might consider looking at joining the BPSO listserv. Schizoaffective disorder basically has features of both bipolar and schizophrenia. I found the bpso mailing list to be the absolute best support a person could ever have. One of the hard things about MI is that all the illnesses are often lumped together for support, when really they have quite different features and require quite different approaches. Look at bpso.org and write and explain your situation and ask if you can join the listserv (get a separate email address though, as it does generate lot of email at times).

9) Depending on where your DD is in her treatment, you might look at www.clinicaltrials.gov. NIH does many studies on schizophrenia, and sometimes these provide access to amazing care and sometimes months of inpatient medication monitoring and then stabilization. But, each study is different and you have to fit a set of requirements. Read them and bring any of interest to the attention of your doctor.

10) You should do therapy for yourself. It is a totally normal and necessary thing to need in this difficult situation. Please look for a PhD clinical psychologist who specializes in schizophrenia and/or schizoaffective disorder. A regular therapist won't have the knowledge to help you. Many hospitals accept lots of different insurance. If you need to ask your DD's doctors to give you a referral and help speed the process.

11) Do investigate day programs. It is not a realistic long term plan to think that you and your husband and other kids can watch your daughter 24/7. Does your insurance company have a social worker who is working with you long term on planning? You can't coordinate care by yourself. Do you or your husband have an employee assistance plan that offers the benefit of a person to do research on different treatment options (like day programs)? An EA program might also have a legal services benefit, so you can consult an attorney about getting your daughter to sign a health care proxy so you can get health care info and make treatment decisions on her behalf.

12) Finally, I know ECT sounds awful, but as you seem to see, it can be very effective. My MIL had to do ECT multiple times, but each time it helped. (In between she deteriorated due to alcoholism). There is hope for stabilization. Life will never be like we imagined it might be, but there is something new and positive and productive that can happen long term.

Wishing the best for you and your family.

[Anonymous]

Anonymous wrote:If your not being kind or supportive of this woman, you need to get your ass off this thread. How on earth could someone be more focused on the term "white trash'? -- instead of finding a way to be kind and considerate of this woman and her predicament. Ugh.

Because OP's snobbery is keeping her from seeking out the help that she needs. She is so busy keeping up appearances because of stupid class snobbery, she isn't getting help her daughter needs. It's not being unkind to point that out.

[Anonymous]

Anonymous wrote:Thank you all - this is OP. Will just quickly respond while at work.

Thank you all for kind messages, and I am so sorry for all the other parents here who are suffering like we are. I am glad we have this forum because otherwise it can be such an intensely lonely experience. My heart goes out to you all - I know exactly what you're going through but I pray your situations never get as bad as ours is.

With seeking government help, well we can keep her on DH's insurance (which is much better than mine) until she is 25. DH's insurance is good and has covered a lot of her treatments at private hospitals, but not all of it so we do make co-payments. I think the coverage w/government help will be even lower. But after 25 then yes she is going to need government assistance.

DH and I definitely need therapy but there is little time. With three kids and both of us working, it has not been realistic to try and look into that. I am considering some sort of online therapy though after reading these kind messages here. If DH and I can speak with a therapist online or from the phone when I'm home from work and the kids go to bed, that might be more manageable.

If you think this is the worst scene I have witnessed with her...far from it. Her real psychotic breaks happened 3 years ago. Now she is getting ECT, which insurance only partly covers. We are paying the rest out of pocket. But the ECT has been helping and she is not having these episodes as frequently as she did before. That is why we are hopeful that she maybe one day - we don't know when but God willing one day - she will be able to manage her life. Schizoaffective disorders are very hard to treat with traditional anti-psychotics so she has been on a cocktail of medicines to keep her going.

Their effectiveness has been hard to measure. It's like beating something with a hammer when what you really need is a chisel.

You are expressing suicidal ideations. You don't have time to NOT go to therapy. You have to take care of your own mental health before you can take care of your daughter. Put your own oxygen mask on first.

[Anonymous]

Because OP's snobbery is keeping her from seeking out the help that she needs. She is so busy keeping up appearances because of stupid class snobbery, she isn't getting help her daughter needs. It's not being unkind to point that out.

Even if this were true, so fucking what? Do you want to help her or chastise her? You might be more effective if you took a less judgmental stance yourself.

[Anonymous]

Anonymous wrote:

Anonymous wrote:If your not being kind or supportive of this woman, you need to get your ass off this thread. How on earth could someone be more focused on the term "white trash'? -- instead of finding a way to be kind and considerate of this woman and her predicament. Ugh.

Because OP's snobbery is keeping her from seeking out the help that she needs. She is so busy keeping up appearances because of stupid class snobbery, she isn't getting help her daughter needs. It's not being unkind to point that out.

Untrue. Are you familiar with mental health care in this country? It is a hot mess. Her daughter has been inpatient at several well-regarded facilities and is receiving outpatient ECT, and is on medication. She is getting her child help. The professionals have failed her so far IMO.

[Anonymous]

FYI: get your daughter on Medicaid. Even if you have private insurance for her now, Medicaid acts as a secondary payer. So, for example, your out of pocket cost for treatments or medications could be less.