Arranging support for adult daughter

[DriftlessRider]

I'm the Dad of an adult BPD child (and autisic, depressoin, anxiety, etc). She's 21. I'm really very lucky, my marriage is strong, our relationship with our daughter is strong, and she's committed to her own care.

We are in the stage of getting her services. Getting her on SSI disability, getting her on state MNSure health insurance, getting her into residential treatment. Although she's been sick a long time (cutting as an adolescent, several mental health commitements for suicidal ideation over the years), we are still just now figuring out her diagnosis and trying to figure out the way forward.

Anyways, it's a funny role parenting here. I understand completely that she is an adult and no longer a child. Maybe too well, for too long we've been gently trying to nudge her out of the nest. After her to get a job, etc. But now I realize that she is likely to be a large part of our life well into adulthood. She will be largely financially dependent on us, and emotionally, and we need to be a big part of facilitating and helping arrange for her care. I firmly believe she will not survive without our unconditional love, and won't move forward without our logistical support.

So, when I just called the county health department to arrange a meeting between my daughter and a case manager, it's difficult that they are skeptical of me and my motivations, and unwilling to work with me directly. I mean I get it, but I'm also just trying to schedule a meeting, not discuss care or anything. I feel the need to prove I'm not an overly involved helicopter parent, I'm just a parent helping my kid.

Not the worst problem in the world, just another thing to navigate I suppose.

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

[Only Human]

Hello and welcome DriftlessRider

I'm glad you've found us and that you've reached out for support as you navigate this new territory with your family. It's so great that you all are working together, that your DD is committed to her own care. A strong foundation will surely make things easier. As will learning all you can about BPD - we've tons of information, articles, workshops, and best of all, lots of parents on similar journeys. I'm glad you're here.

Is there a reason your DD can't make her own appointment to meet with a case manager? I know that with my own DD25, I can't talk to anyone without a release on file from her or, at the very least, verbal permission at the time of the phone call. Sometimes she asks for help, most times she wants to do things on her own, and then there are the times she asks me to be in the same room with her when she makes phone calls, as a backup.

It's important to remember that the things she can do for herself, she should do for herself. It will help her to see that she is capable, give her confidence and it will ease the load for you and your spouse.

I look forward to getting to know you, DriftlessRider - you've come to a really great place for support.

~ OH

[stampingt1]

Welcome DriftlessRider,

I'm new here, too. Our son is BPD 18 just diagnosed a few weeks ago along w/ other medical issues. We are trying to get the correct meds & dosages. He was having nightly meltdowns at home only. Now they are every other night. Baby steps!

He is trying to complete high school. Hubby usually makes his appointments, so that he can adjust his own work schedule to go w/ him. The therapist wasn't aware of these meltdowns until hubby told him.  Now will be having weekly sessions w/o hubby.

A couple years ago, I met w/ his school counselor because I was worried about his grades & his behavior. I really didn't get anywhere because he was an honor roll student w/ no behavior issues at school. I, too, wonder what the future is going to look like for our son. Definitely, not what I had envisioned!

ST1

[DriftlessRider]

I, too, wonder what the future is going to look like for our son. Definitely, not what I had envisioned!

Hi ST1. Letting go of what the future holds has been so much of my experience. Through wife's and my work we get free tuition for our kids. We have literally been talking about the kids going to college since they were toddlers. (Once my son and I argued about whether he would live at home or away for college. Finally I told myself, let it go, it'll work out, he's only three   But she hasn't been able to stay connected to her classes, she has registered for some but has withdrawn from most. Not that college is really that big a deal, but independence and stability are. I've just had to let go and let the future be what it is going to be.

I still have waves of panic when I think about health insurance for her, and stuff like that. But we'll work through the process. Trust that in the end daughter is sweet and brilliant, and we are supportive, so it has to work out.

The other issue is guilt. I avoid it best I can, it's self-indulgent, but this process has taken so long. We should have got more services for her before now. We have waited to "see what happens" so long. Best to keep looking forward though, not back.

Sounds like we both have smart kids. I think that kind of masks part of the illness, and part of the reason I thought she might "just get over it". It's nice that you are on top of this now.

[DriftlessRider]

Is there a reason your DD can't make her own appointment to meet with a case manager? I know that with my own DD25, I can't talk to anyone without a release on file from her or, at the very least, verbal permission at the time of the phone call. Sometimes she asks for help, most times she wants to do things on her own, and then there are the times she asks me to be in the same room with her when she makes phone calls, as a backup.

It's important to remember that the things she can do for herself, she should do for herself. It will help her to see that she is capable, give her confidence and it will ease the load for you and your spouse.

Thanks for the warm welcome OH. It's good advice. I walk that line of "how can I help" and "let me do that for you". In this case she asked me to setup the appt. She has problems with follow-through that I don't understand, but I'm sure are rooted in the depression and anxiety. As it is, we will make the phone call together today. She has a couple people helping her, and she is not actually clear on where their from (clinic? county?). Just need to get organized right now, and hearing the same thing at the same time will help.

I have high hopes for DBT, and we're trying to arrange for an residential intensive treatment. It all happens so slow, and I wish we were closer to the cities so there were more resources. But we're chugging along.

[stampingt1]

DriftlessRider:

I have high hopes for DBT, and we're trying to arrange for an residential intensive treatment. It all happens so slow, and I wish we were closer to the cities so there were more resources. But we're chugging along.

I agree w/ your statement. We are looking at an outpatient DBT that's 2 hrs away that meets for 22 weeks for 2 hrs.

ST1

[FaithHopeLove]

Hello DR
I join the others in welcoming you. It seems like you are doing the right things to help your daughter. I know what you mean about worries for the future. I worry too sometimes. But there is hope. The best predictor of a positive outcome for a person with BPD is a supportive person in their life. Our children have that. We can't change them but we can change ourselves in ways that help them. There is a lot of great information on this site that will help you do that. I hope you stick around and learn with us.

[Mr. Dake]

Hi Driftless Rider,

Welcome from another newcomer.  Our daughter is a high school Junior.  I wonder about her future and the level of our involvement, financially and emotionally.    I've worked as a case manger and one thing that I know is that I want and need someone else at some point to serve in this capacity versus my wife or myself.

[DriftlessRider]

Daughter and I called the county together, she did the talking I took notes and gave her just a couple prompts. Good reminder for myself that she's grown up a lot and is very competent, she did great. So freaking smart it's scary. Still glad I was there to support her and hear it first hand.

We talked to the intake person for adult disabilities, and she took a bunch of background information to put into the system. Our the goal of getting a case worker assigned to her and that's the first step. Not sure exactly what the case worker does actually, hopefully someone to help navigate us through "the system". I don't know what to ask for, need a guide and I hope this is it. Her therapist said she'd need to be on disability to get a case worker, and I was hoping the case worker would help with the process to get her on disability. Honestly, thought the therapist would drive a lot of this, but apparently not. These are the sorts of things we're still wrapping our heads around.

Daughter wants partial hospitalization with intensive therapy (me too). I want her to have DBT treatment and I thought they would happen at the same time, or were the same thing. She thinks they are different. I assume they could be different but don't need to be? Anyone know?

Next is talking to the "MinnCare Navigator" at the county, someone who helps with the state health insurance program. Which, strangely, is completely separate from the case worker thing. It's a journey

[Only Human]

Daughter and I called the county together, she did the talking I took notes and gave her just a couple prompts. Good reminder for myself that she's grown up a lot and is very competent, she did great. So freaking smart it's scary. Still glad I was there to support her and hear it first hand.

So great, DR - it really sounds like your DD is committed to doing some work. You too, she's lucky you're in her corner.

I know very little about "the system" as we were fortunate to have excellent health coverage when my DD was an adolescent and now that she's an adult, she's not interested in seeking treatment. Hopefully, other members will chime in with something helpful.

~ OH

[Mr. Dake]

Driftless Rider,

DBT is a specific form of treatment.  In patient or out patient treatment could use any type of treatment.  Think of Keto as one type of a diet.  There are any number of different types of diets that a person can be on.

I would not expect a counselor to assist with receiving disability.   They would have treatment goals pertaining to functioning better/feelings that they would be focused on.  A case manager provides support with receiving benefits (I worked as a case manager for 5 years with mentally ill in supported housing and with homeless veterans).

It sounds as though you're on the right track.  Good luck!  

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

[wendydarling]

Hi DriftlessRider

It is so heartening to hear your DD wants to help herself, she is ready. I can't recommend DBT enough as it has helped by DD. 14 months weekly skills group and one to one with DBT therapist, she's come a long way, managing her BPD. My experience (UK) is one form of therapeutic treatment at a time. It was explained to her at the time start with DBT, reassess your needs, then consider Schema, Mentalisation... My DD also had success with meds for her non BPD - depression, anxiety, psychosis..., though this did take time. My DD is at a point of deciding what next.

Can I ask what 'partial inpatient' is and why this is your daughter's preference? What does she think she'll gain?

How does your DD spend her days, you say she's not working.

WDx

[Mr. Dake]

A partial hospitalization is when someone participates in the programming during the day, but sleeps at home at night versus in the program.   Typically, the person is more stable and doesn't require 24-hour a day support in order to be safe.         

[DriftlessRider]

Thanks for all the input. @wendydarling, I'm heartened that she is invested in her own care as well.

Whether it be inpatient/residential, partial-hospitalization or on some schedule locally, I think she wants some immersive/intense therapy. As Mr. Drake says, I think partial-hospitalization is intensive daytime treatment then home for the evening.

It's tough. You get cancer or break a leg and the Dr's get a plan. You get referred, you make an appointment, action plan is generated and you do it.

This mental health thing ... doesn't seem nearly as action oriented. Seems to be so much less direction or help. Maybe it's harder to fix than a broken leg, or the treatment options less clear than cancer. But she see's a therapist, a psychologist and a psychiatrist ... and no one tells us what to do next? Just wait?

Well, she had a diagnosis done up at Fraser in the Twin Cities a couple weeks ago. We have a initial report from them and  are waiting for their final report. Always waiting. And wondering. But I'm hoping it includes some recommendations for next steps.

Ah, I'm grumpy now. I have a cold and need a nap

[FaithHopeLove]

Enjoy a nice nap, Driftless. You deserve some pampering.

[stampingt1]

Driftless Rider,

Couldn't agree more w/ your statement of "This mental health thing ... doesn't seem nearly as action oriented. Seems to be so much less direction or help. Maybe it's harder to fix than a broken leg, or the treatment options less clear than cancer. But she see's a therapist, a psychologist and a psychiatrist ... and no one tells us what to do next? Just wait?"

We are hanging on by a thread! Our DS has appointments later in April, but we need help now! We increased one of his meds. Hope that helps, but takes a while to see results. At the same time, he is trying to complete his final trimester of high school, which is almost impossible to do.

Seems like Mental Healthcare is so broken. Not enough providers to the ratio of patients, etc!

[wendydarling]

Thanks for the partial-hospitalisation explanation, I've not come across full day intensive programmes here in the UK.

Driftless Rider, ST1
Same here From the initial assessment came the diagnosis 8 weeks later and a treatment plan with a tag of a 12 month NHS waiting list here in UK.  I thought they were joking, they were not. I became a polite and persistant pest.

My heart goes out to you both and everyone, hang in there.

WDx