Mental Health is Such a Lonely Road

[Louski]

I went and saw our doctor today regarding my daughter's newly diagnosed BPD. We discussed the type of treatment she should be getting and the lack of proper treatment available where we live. He was all matter of fact like "yep, there is a lack of mental health help out there, yes, this is a lifelong thing having a personality disorder - this isn't just something that's going to go away, and more questions, okay have a good day."
I just left there feeling so sad and defeated. This past 5 years trying to figure out what's wrong and trying to help my daughter has been a battle at every turn; we have found everything out on our own, through trial and error, constant research and persistence, and I really feel like you are on your own and no one gives a PLEASE READ. The people we encounter are just paid by the hour = they really don't care. No wonder suicide is an epidemic in our world today. Sorry to vent but that has been our experience of the mental health system.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[PeaceMom]

Welcome Louski,

Such a lonely road for both the patient and the family caregiver.  I’ve gotten more from books like “Loving Someone with BPD”, “Overcoming Borderline Personality  Disorder“ and the informational materials posted here than from any doctor, psychiatrist or therapist. I’ve decided that to truly understand the nature of this beast you must have a loved one with BPD. 

Hopefully, we can support you here and let you know that you really aren’t alone.

[Louski]

Thank you PeaceMom

I’m reading Stop Walking On Eggshells and I Don’t Have to Make Everything All Better. Also Codependent No More and am in a CODA group.
I will read the ones you’ve suggested too. It’s true that no one else understands unless they have or are living it too. I will continue to learn through info on this site and am glad I have this community to reach out too, especially on the hardest days!

[PeaceMom]

CoD No More was one of my first books, but honestly I still struggle a lot with the term “CoDependent”. In my mind, enabling is doing something for one who is able to do it for them self. My DD20 uBpd can do many things herself and by golly, I do NOT interfere there. However, I am still providing much more support (emotional and shelter) than most adults require.

 This appears to outsiders and even some clueless therapists that I’m “enabling” and thus CoD. This being misunderstood by the medical community has been devastating to me.  I’m a compassionate mother, I’m not a manipulated idiot as some have insinuated.

Sorry to vent here but thinking of years of misguided medical “advice” makes me slightly nuts!

[Louski]

I understand what you are saying and I believe that our kids do need more support than others require and I am preparing for that. Anyone who judges you as “enabling” has not walked in your shoes. I think we all intuitively know what our kids need. All parents are codependent to a degree but I know I’m way over board so will continue my work.
Vent to me any time I’m so glad I found support here:)

[Abra]

I agree with all you have said.  My DD20 is very capable in many areas of her life but still needs a lot of support.  I want her to feel that there is always someone there for her, whatever.  To me, that is not "enabling" but being a kind and supportive person. I don't interfere in her life (she is at university) but she knows I am here if she wants some support. Often as mums we know instinctively what our children need but there are so many "experts" telling us what we should and shouldn't do in all areas of parenting that we are made to feel what we do is wrong.  As you say it is a lonely road and none of us need that extra pressure.

[PeaceMom]

I’ve also been told by T that it’s really not my role to give the extra support she really needs. I’ve asked if not me, who? She’s been in T off and on since 5th grade. What would happen weekly is that she’d bring her latest crisis and talk about that for an hour. I think my T is really concerned about me providing this high level of emotional support because it’s so very draining.

In theory, a great support group for her, weekly T and the ability to call T during week with issues is best option. That is what the Linehan DBT model requires. Theoretically, this sounds ideal. Practically, we live in a huge city and these programs exist but they are very expensive, typically don’t accept insurance and are 50 miles away. So a 3 1/2 hour commitment 2x a week. This is prohibitive for us.
If she were more motivated or more mature, she could counsel 1x a week and do the DBT workbook and join any local support group. She could do her own makeshift Full DBT program. Maybe someday!

[Louski]

Abra,
You should be so proud your daughter is in University! I hope one day my girl can be out on her own (I don’t care if it’s work or school- just life on her own instead of mostly in bed). I will support her from afar, be her best cheerleader, and at least she will know someone is always in her corner.

PeaceMom,

We are in the same boat. We don’t live in a big city with adequate resources so now I’m trying to find a good CBT therapist, am on waiting list for local psychologist for DBT.
If I felt like my daughter would really make a commitment I would drive 4 hours away to another province and pay out of pocket for therapy but at this time I know she’s not ready. She’s still reeling from the diagnosis - it’s caused her to go backwards again. As a parent I’m just anxious to get on with proper treatment so all I can do is set things up for her and hope she will go to appointments I make. I wish we had been given better direction when this all began

[PeaceMom]

When DD was hospitalized for S.I. a little over a year ago, I set up a 7hr/day, 8 week DBT intensive. I drove her everyday and waited 7 hours then drove her home. It was a 10 hour day 5 days a week.

She was taught all the skills, but when it was over she went into 1x week T and the skills fell away. It seems like maturity and prefrontal cortex development might be a critical piece of working a DBT program. Would love to know what Dr. Linehan thinks about very immature teenagers and their likelihood of improvement in these intensive programs.

My DD is adopted and has had all kinds of trauma (due to her dangerous choices out in the world). Ive been told for 5 years that until she becomes very stable emotionally, they can’t do trauma work. Do she lives in a cycle of being traumatized by current and former trauma - then emotionally dysregulated - then goes and does something further traumatizing herself. around and around she goes.

Hopefully, your DD will buy into the fact that she CAN find relief from her symptoms if she learns and incorporated the skills.

Hi Abra,
I agree that attending University comes with so many challenges and if your DD is fairly stable there, that’s terrific. Being her cheerleader from back home seems very reasonable.

[PeaceMom]

I had one other thought on how an intensive DBT program could benefit them even if they don’t buy into it or even practice all the skills. The consistency of the program, the T, the others in the group could all simply act as a cast around a broken bone. Simply buying time while the bone heals itself and preventing further damage while the bone can’t support itself.

[StressedOutDaily]

It seems like maturity and prefrontal cortex development might be a critical piece of working a DBT program.

Last year our DD started seeing a DBT therapist, however she would never "buy in" enough to get her into the weekly skills group. Then she spiraled and ended up in the hospital and RTC, etc...  Her DBT T, and the T's she had at the RTC and PHP have said that part of the issue is the immaturity, and sometimes it is waiting until that development and maturity happens before it can sink in and the real work and healing can begin. 

My DD is adopted and has had all kinds of trauma (due to her dangerous choices out in the world). Ive been told for 5 years that until she becomes very stable emotionally, they can’t do trauma work. Do she lives in a cycle of being traumatized by current and former trauma - then emotionally dysregulated - then goes and does something further traumatizing herself. around and around she goes.

.  Peace Mom, you pretty much have described my DD,  I think you have mentioned before how similar they are.

Louski - You are so right, it is a very lonely road.  This board helps with that a bit, at least for me I feel less alone.    The NEABPD website has lists of providers, maybe there is someone closer to you.   We are very lucky to live in an area with many Mental Health resources (still not enough) and I had a hard time finding appropriate doctors...the NEABPD website was where I found the DBT practice that DD went to.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[PeaceMom]

SOD
Thanks for this piece of validating information. If I’m honest, at 19 or 20 I would have struggled with an intense DBT program too. Even if the desire is there for them bc their lives are fairly miserable, that doesn’t equate with the cognitive skills needed to navigate these programs. Studies show the prefrontal cortex isn’t fully up and running until age 25 or 26. Hmmm
This has me wondering even more about the success rate w/this 16-24 yr old population. Again, maybe it’s simply the cast analogy. Holding them in place so as not to further injure themself...
Point to ponder

[Louski]

PeaceMom
Omg you have tried so hard to help your daughter! Wow 19 hour days we live our kids so much there is nothing we won’t do.
I think you are right immaturity and brain development is against them. It is such a terrible time in life for them to be dealing with this.

SOD
Thank you I will check that website. It’s so frustrating to think she was diagnosed a month ago and I’m still waiting for CBT therapist to call back and on waiting list for local psychologist for DBT. Meanwhile my daughter tells me every day she wants to die and I go to work and pretend I have it all together.

[Louski]

PeaceMom sorry I meant 10 hour days!

[pear]

Lonely road indeed. Does anyone have any experience with providing constructive feedback to medical professionals that don't get it or get it wrong? I am upset about being painted as the enabler or as the mom denying the mental illness in her medical records. There are out-of-context or blatant factual errors and subjective opinions against me in the therapists records.  I really don't feel like there is a way to correct the medical record of inaccuracies without furthering the overbearing or out-of-touch mom filter that I am being seen as. I have given feedback to customer care people in the past and feel like I am not getting anywhere. I hate to alienate a resource that we will likely need when it comes to future hospitalization. It is so maddening. I swear the report is evidence of finding what one expects to find and finding some more of it by asking the delusional patient with BPD who is still delusional. Do I just absorb these blows and carry on? Opinions? 

[Big M]

I swear the report is evidence of finding what one expects to find and finding some more of it by asking the delusional patient with BPD who is still delusional. Do I just absorb these blows and carry on? Opinions? 

My opinion is don't bother trying to correct their misperceptions.  Just focus on the big picture, helping her get better.  Our daughter has convinced her current therapist that she doesn't have BPD.   Trust me, she does.  When her therapist said this to us in a family meeting, I just smiled and said "I don't think it really matters what label we attach to the problem, we should focus on helping her get better".  Previously, she convinced a therapist that her parents were the source of all her problems... to the point this therapist was pushing her to try to legally emancipate herself.  Luckily, our daughter didn't go through with that, we think at some point she realized what she'd done to this therapist and decided she needed a new therapist.  My experience with medical professionals is that they do not change their minds easily.. no one does, but I think the situation with the parent of a BPD child is such that the providers are convinced from the outset that you are a part of the problem (and we are.. just not not necessarily in THAT way), and there is little point in trying to fix their perceptions, and the best strategy is to take a few "hits for the team" and focus on the ultimate goal of helping our kids get better.