Yet another meeting with Borderline (BPD) team

[Simion]

I am new to this on line group & have found it really helpful. I have shared some of my journey on different boards. Today I need support, suggestions or even a been there done that. I am meeting tomorrow with my diagnosed Borderline (BPD) young adult daughter & one of her treatment providers to discuss our latest estrangement.
It has been about a month since we have had contact. This seems to be the pattern for us now that she no longer lives at home. I had to have her move out, the situation was far to toxic. We are both trauma survivors. I have complex PTSD with dissociative disorder and she has complex PTSD & Borderline (BPD). I have been in therapy dealing with my mental health issues for many years. She has been in treatment facilities & hospitals nearly her entire life. As well too many therapist to remember. [ state insurance revolving door of treat providers ] The journey has been a living hell for us both, more so for her as she was never equipped or prepared to experience such things. She was a child who’s life was stolen from her. Abused by bio thing it broke her. She has never been the same since. That’s not to say genetics & all the other knicks and knacks of mental health issues were not going to be a part of her history. However that first soul injury did permanent damage.
It was 20 years of living hell. Not just our issue but the added insanity of the so called system of justice & protection. Finally enough was enough, I honestly felt one of us is not go to make it out of this alive.
She gets an apartment through the state my agency. However she doesn’t function as an adult. Of coarse they will provide this, this & this. No. Long story short I am still doing things for her, groceries, doctors appointments and fighting with state agencies to get them to do their job. Relationship wise nothing has changed. I still set boundaries, she disregards even when I keep to them. And when we do spend time together always a blowup. I leave as there is nothing rational to work with & it’s abusive. Then I email her & let her know not acceptable don’t contact me I need my space. She’s good at this she’ll keep to it for a couple of weeks & then theres a crisis. So we as a family have been telling her figure it out yourself. You don’t get to abuse people & then want from them.
That is cycle tomorrow meeting is to discuss new ways to communicate. I am not good at manipulation & bull , I’m honest straight forward about what is acceptable & unacceptable. Obviously that hasn’t worked & I’m not into playing rock. That isn’t me but I could use some real response, ideas. Thanks

 

[Crayola13]

How old is your daughter? You mentioned she was abused by the biological parent. This would explain the borderline personality disorder. Plus, she already had a genetic predisposition to mental illness. People with this disorder are very difficult to treat. Have you considered medications? Maybe a specialized type of therapy like DBT?

 

[Simion]

She is in her mid twenties. She has been on medication, is not always medication compliant. Really needs to see a psychiatrist with knowledge & understanding Borderline (BPD) for an evaluation. She is not interested. I am aware of the dynamics to Borderline (BPD). I have known for years this is what she had, unfortunately the psychiatric community will not endorse that diagnosis until one is 18. My hope is that one day that opinion will change & with any earlier diagnosis the treatment needed can be received & maybe there will be a better outlook for people with Borderline (BPD). The symptoms my daughter displays are the same as they have been since she was a little.
I am hoping there will be an opportunity to discuss DBT at our meeting today. I plan to attend today meeting remaining as low key as possible. Owning that for all I know intellectually about this illness, I have much to learn about communicating with her given both our issues. For us to move forward, I need to go slowly.
Thanks so much for your response, I appreciated the reminder of how difficult Borderline (BPD) is to treat. Knowing this allows me to be calm and centered, without expectations.

 

[Simion]

Well that went well. NOT! Another ride Borderline (BPD) Ferris wheel. Tried to go forth with the plan I had be calm acknowledge although I know much about intellectually Borderline (BPD), I do not know the communication skills needed to be helpful. Couldn’t even get the entire thought out & she pounced like a jaguar. She had her own agenda & wanted to get her way. As far as she was concerned things were fine between us till I lost it over grocery bags. Her perception, not about to argue. Mad that she was not invited to go on vacation with her sisters & I. From my perspective I didn’t want to go on vacation & have the drama and rage that comes with her. Last time I took her on vacation, she went off screaming how she’d like to stab her sister. She is so impaired she can’t understand what one has to do with the other. Real world consequences. I tried to be validating of her feeling, expressing that I see how she would feel left out, sad angry. That set her off more. She wouldn’t have to feel that way if I didn’t do this to her. The wheel spun faster when I would not give her an answer about vacation. I wanted to know what could we both do to make this relationship better. I asked her treatment provider if she knew of anyone who specialized in Borderline (BPD). I was asking for myself. Someone who works with family members. I couldn’t even finish she was pissed , jumping to I was not going to change her therapist.
Nothing accomplished. The in-home mentor thought it was positive that we spoke. I wondered if she was in the same room. I know my daughter thinks all’s good. Even as she threw out some nasty comment as I left.
So over all of this! Sometimes I wish I could just hate her and be done with her for good. If anyone else did or said 1/1000 of the things she has they’d be dust in the wind without a second thought. I walked away from my entire family as they were so toxic & abusive. But my child….

 

[susiestar]

I am so very sorry that you are having to ride this ugly ride. I wish there was a better way to help her. Sadly, right now you need to focus more on yourself. I understand completely that you would not tolerate this from anyone on the planet except your child.

They do have people who will handle her shopping, be in charge of her money etc.... It really doesn't have to be you. In some ways, having someone else in charge of her money might help as you would not have control over that for her. What social services do not tell you is that if they can pressure you into doing things for her, then they don't have to do them. I have had many social workers swear to me that they cannot just take a child because they don't have enough places and for so many other reasons. If they can pressure you to do something, they don't have to worry about it. If you refuse to do it, then they have to. So let your daughter or her social worker(s) and team do the daily stuff you do for her. Step back and let her deal with the way they want to do it.

Then maybe slowly work on your relationship with her. Start with very short, casual meetings. A cup of coffee, or a short walk or something. Some way to be together that doesn't need to you control things for her and doesn't involve a lot of money or anything else. Just work to step out of the caretaker role and to let her be the adult she is. She has a safety net to catch her when she messes up. You can be there for if and when they fail. I do know how hard it is to step back, especially when they tell you that it is "the family's job" to do this or that. Lots of people don't have families and social services has to provide what they need or help them figure it out.

 

[Simion]

Thank you for your kind & supportive response. She has a “mental health agency “ that is supposed to be providing all of those things. I did address that at the meeting & gave her the notebook of all the documented meetings, zoom calls, service plans, agencies that I have contacted & filed formal complaints with. If I had given up on her & didn’t care for her as her illness leads her to believe she would have no services. The mental health system is a complete failure. What social services doesn’t tell you is that these services even exist. A young adult with disabilities wouldn’t be able to fend for themselves. A life on the streets is what the future holds for many of them. I’ve worked with homeless women and have witnessed first hand the atrocities these young women have experienced. I was not about to let that happen to my child. It was a full time job simply advocating for what was her rights under the law. I wish she could know how very very much she was loved & still is. It saddens me that she feels so alone & unloved even if its not the reality. It’s the reality she lives. All I can do now is continue to hold to my boundaries & live my life. There won’t be anymore sit downs with “ so called treatment providers. “ I have been trying to remove myself from the caregiver role for sometime. Due to serious failures in the mental health system I have not been able to. She went to an assisted living placement & was violated by one of the male residents. Due to safety issues she had to return home & then Covid hit.
I feel this is a closure stage for me & maybe sometime in the future we can go for coffee.

 

[Mirabelle]

Hello Simion,

I hope things are going ok for you at the moment (as ok as they can be of course.) The frustration you expressed with social services, and that susistar also commented on, is extremely relatable. It is very hard to relinquish responsibility for your adult child when social services will not do their job.

We were approached by a mental health agency called ACT about six months ago after my son's last stint in the psychiatric ward. They are funded by the state, and had us switch my son's disability benefits to something called Direct Care so that they would be funded and permitted to provide services for him. Well...........it has been mostly a joke, and not a funny one. The psychiatrist he was supposed to see every two weeks in reality sees him every two months. The person who arranges for suitable employment has been a complete no show. A new person my husband spoke with two weeks ago candidly admitted that my son's application for public housing had fallen through the cracks and that they would have to start over again. This is after months of other staff assuring my husband the wheels were in motion. At one point they tried to put him in a nursing home for people with severe intellectual disabilities. A highly intelligent young man with schizophrenia and bipolar does not belong in such a place. They told us at the time it was their only option and acted as though they were exasperated with us!!! Pardon!!!???

As you said, the people who are supposed to be supporting him in daily living are just not. So we are still taking him to medical appointments, ensuring that his prescriptions are filled, making sure he has groceries etc. All of this is paid for by his disability check, but we are still playing the role of responsible support staff afraid to go away for the weekend. A hard row to hoe when we are told frequently by our son that his situation is our fault, and that we owe it to him to house and feed him forever more because we are his parents.

It was helpful to read susistar's comments that such agencies will try and put as much of the heavy lifting on the family as they can to relieve their own burden, when in reality our children are ENTITLED to these government services as disabled individuals. It is really quite disgusting to me. As you say, how in the world could a disabled person advocate for themselves or have the first idea of how to access these services, or realize that they even exist, without an involved family. It makes me sick.

My husband is poised to make our first formal complaint. He is concerned that we might be blackballed. So we are not sure quite what to do about that at the moment. How have your complaints been handled? Do you think they have helped or hurt your case?

I wish some peace for all us in this journey.

With best wishes,
Mirabelle

 

[Simion]

Mirabelle. I only just now saw your response. I had to take a time out for myself from all of this. Living with an adult child who has been ill for years is exhausting. I need time alone where everything isn’t about mental illness & all the crap one endures along the way to try & get services for their child. [ adult or pre adult ]
My heart aches for you & your husband. It is devastating to be offered state services that you honestly believe will help your child & then learn the reality of what a lie most of it is. Your situation with social services doesn’t shock me at all. Other people will say “ that can’t be. “ It can , it is & will continue to be this way if people remain silent. I have made a personal vow to never remain silent to the suffering or injustice of another human being. Silence to me is akin to being complicate with those who oppress & harm innocent people. My life experience has taught me how deceitful & unjust people & institutions can be. The higher the power the greater the deceit & injustice. Social service agencies have a gold star rating in this category.
I hear your husbands concern of being blackballed if he were to file a complaint. The other side to that coin is becoming the parent they learn not to f### with. I will tell you honestly filing a complaint is about as easy as getting services. These state agencies have all there rules & regulations as to how to go about it. Personally I feel a # 1 requirement for being a state agency investigator is to be a narcissist. They are there not for you but for the agency. The one agency that I found to be most helpful is the Disability Law Center in the state that I live. These are people dedicated to helping the people.
My personal experience has not been great in filing complaints by any means. Six or seven out of ten, resulting in some form of action taken. Two major victories. One which lead to immediate housing for my adult child & the other an investigation into agencies financial management. For me each filing of a complaint of failure to provide said services that a person is entitled to under the law is a win in itself. It’s a paper trail, a history that may one day lead to another family’s to their personal victory.
This is my child, no matter how mean, ugly & heartbreaking her mental illness is, the bottom line is she didn’t ask for this. I’m not about the three C’s. Granted I didn’t cause it, I can’t control it to cure it. As a mother I can act on my conscience to not fail to do what I can to give my daughter a shot at life. If my child had cancer, would I tolerate the crap that’s handed to parents whose children have mental illness. Would I so casually 3 C’s my way with cancer ? No! Would I march straight into hell & go toe to toe with Satan himself to save my child? Without hesitation.
Mirabelle I wish you & your family all the best. Your an amazing wife & step mother to this young man. There are many biological parents who wash there hands of these kids but not you. You are a gift to this family.
I will close this not with an apology for length but with a tale of caution. If we don’t advocate & fight for our children then we must know we leave them to death. I know too many broken parents who used “ tough love “ and regret it today as their children have committed suicide, been murdered or overdosed. If you have ever heard a parent wail & watched as they fall to their knees upon hearing their child is dead you would do anything to hold these agencies accountable.