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Author Topic: How to set boundaries with 22 year old daughter?  (Read 145 times)
yaneznayu

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Relationship status: legal guardian, primary caregiver
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« on: October 17, 2020, 11:50:46 PM »

Looking for input from people who have been through similar situations:
how do my wife and I set boundaries with our 22-year-old daughter, who I suspect has undiagnosed BPD?

Our situation is complicated and messy.  In short, our daughter has multiple issues including other (diagnosed) mental illnesses and also on the autism spectrum; we are her guardians as well as primary caregivers; she has almost no lifeskills, no job, no friends, and no desire to become independent; and she has been hospitalized multiple times.  My wife and I are beyond the last straw and just recently enough is enough; we are vacating our guardianship.  Of course, our daughter reacted that we are abandoning her.  And with all factors considered, she will be coming home after her current hospitalization (and all future ones) until the guardianship is finally transferred to the state, which can take weeks or months.
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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
formflier
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« Reply #1 on: October 18, 2020, 06:17:06 PM »

  My wife and I are beyond the last straw and just recently enough is enough; we are vacating our guardianship. 

Can you put this on hold while we work through this together with you on BPDfamily?

How will the situation improve with the state being the guardian instead of you guys?

Can you describe a couple of the things that led you to the point of taking this step?

Do you understand how she can feel abandoned?

Best,

FF
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yaneznayu

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Who in your life has "personality" issues: Child
Relationship status: legal guardian, primary caregiver
Posts: 8


« Reply #2 on: October 18, 2020, 10:19:15 PM »

Responding to some of the questions:

> How will the situation improve with the state being the guardian instead of you guys?

The situation will improve in many ways:
1) One big stress is that we are also her caregivers.  Because of her current struggles, she has been recommended for extended treatment in a locked facility, with 24/7 one-to-one supervision.  Because no place like that has been found, we have been struggling as best we can at home.  To be blunt, we cannot provide anything near that level of support.  At a minimum, one of us is trapped here, since she rarely wishes to leave the house.

Transferring the guardianship to the state would relieve us of the burden of trying and failing to provide something like the 24/7 one-to-one supervision.  My wife has chronic health issues and is struggling to take care of herself.  My work is suffering, which is an issue since our primary healthcare insurance is through my job.

2) She is repeating a cycle of home/hospital/home/hospital...  21 hospitalizations in 1.5 years, with no signs of stopping.  As her guardians, we are stuck in that cycle with her.  Since no place has been found for her extended treatment, every time she is discharged from a hospital, since we are her guardians, we have to take her home, where the level of support is inadequate (see #1).

Transferring the guardianship to the state will break the cycle, at least for us.

> Can you describe a couple of the things that led you to the point of taking this step?

A) She refused to continue with ABA therapy.  Her multiple hospitalizations were because of several factors, one or more of self-harm, suicidal actions, aggression towards us or others, destruction of our house.  She is already on multiple psychiatric medications to manage her symptoms.  Despite that, she was still escalating her dangerous behaviors frequently, and ABA therapy was recommended as a way to reduce or stop them.  She was fine with the ABA until they started talking about goals, and skills, and schedules.  She flipped and refused further.  She said she does not want to become independent, does not want to work on skills.  To us, her refusing ABA means that she is willing to continue the cycle of hospitalizations.

B) Her goal in life is for us to take care of her until we die, or become incapable of taking care of her.  Then, she would be okay with caregiver/guardian role transferring to someone else, or to the state.  And by take care of, that means the 24/7 one-to-one supervision.

She does not need that level of support the rest of her life.  She is refusing to take steps to get better.  She is not stopping the cycle.  That means that we have to take action to stop the cycle.

> Do you understand how she can feel abandoned?

Yes, but we also have to consider our health and well-being.  If we continue trying (and failing) to take care of our daughter, the physical and emotional toll will kill my wife within 1-2 years.  We have spent our emergency funds over the last 1.5 years on failed treatment attempts to help her.
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formflier
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« Reply #3 on: October 18, 2020, 10:27:57 PM »


OK..the giant question I am seeing.

If no place exists to give her the care she needs, how will she get that care simply by transferring guardianship? 

Or...did a place exist but because she had a "home" to go to, the rules said she could not go to a facility that existed.

(Still scratching my head here a bit and may have read something wrong)

I do get it that you guys have to take care of yourselves first.  Bravo for doing that!!!

Best,

FF
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yaneznayu

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What is your sexual orientation: Straight
Who in your life has "personality" issues: Child
Relationship status: legal guardian, primary caregiver
Posts: 8


« Reply #4 on: October 18, 2020, 11:41:35 PM »

> If no place exists to give her the care she needs, how will she get that care simply by transferring guardianship? 

Finding a place for her is one of the big obstacles to transferring guardianship.  Illinois does not place wards; we have to first find a placement, then the state will accept transfer of the guardianship.

So, we continue our search as we have been doing the last 1.5 years, though hopefully with some help from the state:

* since she has autism spectrum disorder, the best chances are to get her approved for placements in that category.  She is in the midst of pre-screening, so we are arranging to finish evaluations needed to get the pre-screening.

* another angle for searching is to stabilize her condition through therapies and medication, so that her prescribed level of support is reduced.  Prior to her crisis 1.5 years ago, her baseline had been much higher, much more independent -- imagine a 13 or 14 year old.  If she can return to that level, or at least partly, then facilities that turned her down may allow her in.  That is one reason I am so frustrated that she is refusing ABA therapy.

* there is a slim possibility that Medicaid would cover out-of-state placement.  Very unlikely.  She probably has a better chance of winning the lottery.

* unknown.  Meaning that even though it feels like we have looked into all possible options, we keep our minds open and keep listening to suggestions and referrals from others, and keep making phone calls / email contacts.  So far, nothing.
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mggt
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« Reply #5 on: October 19, 2020, 09:20:11 AM »

No advice.  Just wanted to tell you and your wife seems like you have exhausted all situations.  Good luck with finding placement for your d. We know here how difficult it is living with someone who has bpd and the constant hospitals and the every day of madness. Sending hugs and prayers. 
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Swimmy55
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« Reply #6 on: October 22, 2020, 11:40:24 AM »

I truly have no words...
From my limited experience ( you can click on my /anyone's name for my/ anyone's back story ) the journey with my adult son took a sharp turn when I was faced with the choice having him return to my house after an emergency ER psych stay  or not.  Unlike you, I didn't have guardianship over him  so I don't know what it would mean for your situation to not accept her in your home .  You could refuse after the next hospitalization and see what the hospital social workers say..and I am sorry it would have to come to that where you would have to wait for the next shoe to drop.

To my horror, in my situation, the only thing I could do was not have him come back to my house as he was violent with me  personally and he caused thousands of dollars worth of damage to my home.  The house damage was after I gave him the choice of either get help or get out of my house  after his physical violence escalated within a matter of 2 months.  I truly hear you when you are at the point when it's either him/her or us .  At that point , I had no choice at all but to choose me. Of course, I can direct you to the establishing boundaries drop down list here on this forum, but some of us know our situations are far beyond that- their dysregulation is too severe.When it's a matter of life or death , life ( and safety) must be chosen. Again, my experience can't compare to yours but I recognize that hellish fork in the road.  

.
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