Hoping for Hope

[Noname909]

Nineteen years.  Nineteen years, I’ve been loving and caring for my son.  He started out as the joy of my life, and as my only son – my adopted son - I lived every day to make his life full of joy as well.  We were the parents that always went above and beyond.  Yes, we spoiled him, but more importantly, we filled his life with as much love and affection as any child could want.  We had some initial signs – some physical developments that took longer to develop and some initial ADHD and focus issues at 5 or 6 that we started to treat.  We spent money on every doctor imaginable to make his pathway easier and to understand how we could help him.  Social difficulties started manifesting themselves in elementary school, we gave him a loving family, support, help with friends, and access to teachers and tutors.  Behaviorally, he was oppositional and argued all the time, which created numerous family conflicts and shouting matches, but he knew his family always was there for him and loved him.   He had always been the sweetest, most lovable, and creative child, it was hard not to overlook the rough patches and focus on the joy of him being part of our family.  I even took him on a 11-day international trip to see the wonder of another part of the world.

Then around 6th grade, the bottom started falling out.  Signs of anxiety, low weight, friend relationships ending, and school absenteeism appeared, and eventually, psychiatric hospitalization.  My world of “your son has some ADHD and focus issues” turned to more serious concerns about depression and panic attacks, along with something I later learned about called “conversion disorder” (three different occurrences, by the way, where I ended-up carrying my son who was paralyzed from the waist down).  After holding him back a year in sixth grade, we managed to support him through middle school as his oppositional behavior increased and the arguments began to intensify.  He begged us for a brother, and always having wanted to have a bigger family, we eventually did when he was around 9. 

In high school, his behavior became more aggressive as he grew larger.  The opposition persisted and got worse, he started making more risky decisions, and when he didn’t get what he wanted, he lashed-out verbally and started to become more threatening.  The pattern of escalation finally resulted in us sending him to a residential treatment facility for a year and a half out west, when members of the family started getting hurt.  The hope was that the anger was something he would learn to manage – through DBT, peer groups, and more structure, he would develop coping skills and come back with more ability to manage conflict.  It never happened.

The behavior didn’t change, despite extreme expense, countless medications, hospitalizations, and I can’t tell you how many therapist hours.  And once returned, the kids he now started hanging out with were much different, often times troubled teens in one way or another.  Now the verbal escalations from him were much more intense and hateful, extremely angry, and very hurtful.  According to him, we were the cause of his problems, had never been there for him, and were horrible people that – when he was really upset – “he hoped would die”.  When he exploded, he would break things, damage items in the house (including family heirlooms), and slam doors so hard that things would fall off the walls and crack the moulding.  He called us horrible, shocking names, wishing we had never adopted him and making it known in these moments that we were not his parents.  My younger son was experiencing the trauma of all of this – nothing that any little child should have to go through – and I was powerless to protect him from it.  I was a prisoner between two worlds – one where I was trying to keep a career, raise a new child, maintain a marriage, and live a happy life – and one where I was subjected to constant conflict, disappointment, and verbal abuse. 

I cannot count the extent to which I went to try and “save” my son.  Medical professionals, treatment, medicines, help with friendships, giving him love, support, great birthdays and Christmases.  But every year was worse than the last.  More depression, more anger, more verbal abuse, more financial cost, and more risk to the family.  Every week we were reminded in some way what terrible people we really were.   And nothing was ever enough to soothe his anger and resentment.  No medicine, no therapy.  Whenever I tried to talk to him to understand what we could do to help him, his verbal responses were always short, shallow, and uninformative.  I couldn’t reach my son, no matter how hard or how many times I tried.  Yet despite all of our attempts to intervene, he has worsened without recognizing his decisions or behavior as a root cause.  He is so self-unaware that he doesn’t understand social cause-effect relationships, he is patently dishonest, and he is never wrong.  Convinced that marijuana is the answer to managing his anxiety, he can’t admit that his chronic GI issues may be related to his excessive use, despite the fact that that his doctors are telling him that this is likely the case.  Churning relationships, increased feelings of abandonment and isolation with diminishing ambition are leading to more and more talk of self-harm and desperation.  As time has gone on, our concerns have turned to hurt, loss, and now fear.   Fear for our own safety at times, fear for his safety at times, and fear of the future.  Every day now, I wake up wondering what the next shoe will be to drop.

Everything I’ve said about myself, my wife did as much or more as well.  She poured her entire soul into her relationship with our son, sacrificing herself in the process.  As a juvenile diabetic for many decades, she has had major health issues and concerns.  A little over a year ago she had a heart attack, and had two stents put in.  Combined with her diabetes, heart disease, and other auto-immune challenges (there are many), she has a lot of risk factors.  The stress at home has certainly not helped.  I would be shocked if in many cases the environment has not accelerated the decline associated with some of her conditions.

Which brings us to COVID-19. 

When the news of the Coronavirus broke, we were naturally very concerned for our high-risk family member.  Our attention turned to how we would distance with two children in the house, one troubled teen who was very impulsive and a younger one who didn’t really understand what was going on.  We quickly learned that our oldest had no intention of distancing, even if it meant increasing the risk to the family, which of course he didn’t acknowledge.  We were in a really bad spot – an emotionally challenged nineteen-year-old with high risk-taking behaviors and a highly contagious disease on the rise.  It all came to a head one day during a conflict in which more hurtful words were exchanged and our son made some disturbing verbal threats.  Between the health and safety risks, we made a decision to move him out of the house and into an extended stay hotel.  This, of course, accelerated family cash burn and our son’s risk-taking behaviors.   Calls from the hotel, calls to the police, reports of seedy people outside the hotel.  He started threatening to “show up” at our house if we didn’t give him what he wanted, when he wanted it.  He would arrive and then demand entry, banging on the door.  Unexplainable damage to our son’s car, living expenses, and relentless daily calls for money have all taken a toll on our lifestyle and our psyche.  He also refuses to maintain regular meds.  As a final act of compassion and attempt to provide him a start in life, we rented an apartment for him a few months later and continued providing support.  You won’t be surprised at this point to learn that nothing changed afterwards.  Daily calls harassing us for money (he finally got parttime work in retail but can’t come close to supporting himself), car breakdowns, suicide threats, a hospitalization, and more volatile friendships, many of whom are highly questionable.  We’ve now become the villains in his life.  Horrible people who “did this to him”, weekly calls where we are verbally abused and harassed until he gets what he wants, whatever it is.  His technique is to call, or text, or threaten to show-up, or do whatever he can to disrupt our lives until he gets what he wants.  It’s like being terrorized.

Today I live in constant fear of today and for the future, in a kind of prisoner’s dilemma.   My son, who I love, has become an abusive person to us.  Each time the phone rings, or the text dings, I shudder.  He makes it impossible to have a positive relationship with him, yet I want it so desperately and wish only for his happiness in life, whatever he chooses.  Nothing I do makes a difference, or matters, or is deserving of any recognition on his part.  He demoralizes us constantly and drains our financial resources with a complete and total lack of empathy.

On the other hand, I don’t see how he can support himself.   He has no ability to control his spending, no career, and lives day-by-day.  The less money he has, the angrier he becomes and the more he tries to force me into positions of financial pain.  There’s no financial support from the government – he has to be virtually homeless to qualify.   And the prospects for self-reliance are not good – his behaviors are risky and despite his verbal claims to want to go to a 1 -year technical school, he has shown no ability to regulate himself enough to be able to stick with something requiring that level of commitment. 

His therapist, an extremely competent and impressive woman who we admire greatly, believes he has classic signs of BPD, and probably Bipolar Disorder.  I’ve had to adjust my thinking to transactional, conditional interactions with him as a result of her coaching, but I still feel the loss of a child, enormous guilt over what we could have done differently, and an ongoing emptiness left by years of emotional abuse and trauma. 

If you’ve managed to read to the end of my story (and I’m very grateful for that), I can imagine you are thinking that I am not alone.  I’m sure that’s true.  But right now, it feels pretty lonely here.  No one understands, no one can help, and no one has any solutions.  Unfortunately, that all points to very little hope on my part. 

If curing BPD from a med or a book were that easy, someone would be very rich, I’m sure.  But I don’t know how we’re going to manage the next 20 years of our lives, and I owe it to our family and youngest son to at least try.  Someone, anyone that can make sense of all this and coach us through the interactions.  Someone, anyone that can help us understand the options for our son, how we provide those to him, and how we help him succeed.  There has to be a way to live a more productive life than we are living now.

I could write pages, chapters, and books, and there is much I haven’t said.  This is the first time I’ve ever, in 19 years, sought help for us through a support group.  It’s new to me and it’s uncomfortable, but I know we need it.  We don’t know where to turn, and most importantly, I don’t want us to forget how to live.  Maybe someone out there can tell us how we start remembering to do that again. 

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

[Swimmy55]

Welcome.
Your story is very similar to mine with the difference being my son got violent with me and I had no choice but to petition the court have him put into a psych hold/ restraining order.   He also is BpD with mood disorder and substance abuse.  It broke my heart , but the choice was to continue living in a life threatening situation/ being terrorized. He has refused therapy and meds once he turned 18.  I was a single mother trying to deal with an out of control raging  teen.  Therapeutic hospital, group home, etc...You can click on my name to get more backstory from previous posts. 

First of all , you are obliged to take care of you.  Not him as he is an adult.  You have to know you are as important as he is.  Here is something for you to peruse through and take into consideration: https://bpdfamily.com/discussions/search-info4.htm
 
In my particular case I also found it very helpful to get my own therapist to add to my network of support and I joined 12 step programs for family members such as Codependents Anonymous( CODA).  You can get your life back.  Please write back to us as you can.  we are here to support and be here for you.

[Beachtime]

Dear Hoping, I can relate to so so many things in your story. It has been so hard. The worry, sadness and stress takes such a toll on parents. I cry daily but have no idea what else to do except hope and pray that someday things improve. I love my son so much too and never want to give up. I feel that others who don’t deal with this don’t understand the deep pain that parents dealing with this carry around daily. I wish there was a way to deal with this and feel ok and even happy again.  Thank you for sharing your story. I hope and pray things get better for you, your wife and your son.

[Turkish]

Hello Noname909,

I'm sorry that you've been dealing with this for so long, but I'm glad that you reached out to others.

Speaking as an adopted kid who hung out with other adoptive families, we can be a tough bunch, and sometimes the damage in early life is done before we are adopted, even young. I was 2.4 years of age. How old was your son?

I'd encourage you to read through the link that Swimmy posted, and look at the Safety First! linked therein.

First of all , you are obliged to take care of you.  Not him as he is an adult.  You have to know you are as important as he is.  Here is something for you to peruse through and take into consideration: https://bpdfamily.com/discussions/search-info4.htm

What do you fear if you let him live his life as he sees fit? You've moved him out, which is a first good step for your family's safety. Given that people with BPD feel unworthy of love, cutting him out further might intensify those feelings, yet it sounds like everything you did through much sweat, tears and money didn't change how he felt inside, with twisted BPD perceptions of himself and the world.

[Beachtime]

I don’t have a lot of advice as my husband and I are trying to figure out many of the same things of how to help our son, not make things worse, while still taking care of ourselves. What has helped alot has been reading everything on this site. Reading the lessons and watching the videos has been so helpful.  I have learned so much about the counterintuitive ways of speaking to and dealing with a pwBPD. I read the parenting posts and learn a lot, but I also read the other groups posts because there is so much valuable insight and advice, and a lot of common issues that I learn from. (Caution: There is some parent finger pointing as the cause for the bpd in a few posts but I do not dwell on those posts.) I actually journal and take notes from what I learn. It is starting to help. We have a long way to go on this difficult and painful journey but now we have some direction from experts who get it. Wishing you and your family peace and healing.

[NorthernMom]

Hi Noname909,

I read your entire post, watching my future unfold in front of me with my now 18 year old daughter.  If she doesn't follow the exact same footsteps, it will be very close...unless something tectonic changes in her life and she receives professional treatment that works.

You, your wife and your family are NOT alone.

If you haven't considered family counselling or even starting just yourself, that could be something to think about and put in your 'tool box'.  I started counselling this past Monday and just having the cerebral space to go 'someplace' with my guilt and shame to help with that step was the right move.  There is no quick fix, but for me this is the right first step to be strong for my entire family.

Keep posting and reaching out. 

[Sancho]

I can connect with all that you say especially ' Each time the phone rings, or the text dings, I shudder'. Your story is our story - there are differences of course, but the core elements are the same.

In particular I can identify with trying to set up BP DD independently - at great expense of course. She is 30 now and I have come to the conclusion that she simply can't run a household, however small.

I've also come to know that for a long time it was not only marijuana that she self medicated with - and this exacerbated the symptoms of BPD enormously.

When relationships broke up inevitably she came back home and the yelling, abuse and threats came with it as she was withdrawing from both being in a relationship (usually with someone similarly dysfunctional) and substances.

So what has been helpful for me? First of all coming to the conclusion that there was no point in pouring more money into the hope that she would become independent.

The next helpful thing was getting to the point of calling the police when she was with a partner in my house and there was violence. Somehow the shock of the police being involved was helpful in helping her understand that I was willing to go that far.

The next thing is 'letting go'. I still find myself thinking of ways to help, things to say etc. We all have those pictures in our minds of their beautiful tiny faces when they were little, the good times and their young enthusiasm - and the connectedness we had with them - and we so want to reconnect. But what is happening in their minds is so different now.

So I have step by step moved back - I don't respond to the abuse, in fact I am just 'here', side by side. I could never have imagined that my life would be like this, but I am gradually taking my life back, one tiny step at a time. (on a bad day I can't say that though - I just feel despair!).

I hope you can find a way forward. Coming to this place has helped me over many years - just knowing others are going through the same thing.

[Noname909]

Thank you all for your replies and thoughts. 

@Sancho, you are probably further along in your acceptance than I am.  I have just now started realizing that this in more of a way of life than a "phase", but it is part of your "letting go".  Knowing how much to help (19 is such a young age, especially when they aren't really 19 emotionally) is what I struggle with understanding now.  And the consequences of not helping range from dire to returning to being my problem anyway.  I've at least made baby steps toward being willing to call the police - this last time because he threatened suicide and then cut off communication.  I feel like I can do that now.  But I hear you, I may need to eventually come to the realization that he can never be independent.  I guess I still have some hope; we'll see.  Thank you so much for your comments.

@NorthernMom, you are right.  I think counseling would help.  This is my first step.  Now I need to find the right resources.  The greatest help to us now would be understanding how we handle the (irrational) interactions.  I admit I am not great at it and I internalize a lot.  Do you just look for local people or is there an online resource you use for counseling?

@Beachtime, I will definitely watch some of the videos, thank you.  It's funny you mention journaling, this email to all of you was kind of my first entry.  I see why it could be helpful.  What was your experience seeking experts?  Were they local counselors?

@Turkish, thank you.  My son was a 6-week prematurely born baby when we adopted him.  He's been catching-up ever since.  Yes, moving out was the best decision we ever made.  But he does not make mature decisions sometimes. And my fears are that he either makes decisions that ruin parts of his future, or cost me dearly to get him out of.  I'm not ready to accept that homelessness could be a consequence of his actions (if I were to completely let him live life as he sees fit) when I know I can keep him from it.  Yet, I know that this is a slippery slope.  I feel trapped.  He can't support himself, but he can (and likely will) abuse that support because he can. 

@Beachtime, thank you so much.  I agree, and particularly extended family members don't understand.  If I had a dollar for every time I got some advice about "tough love" I'd be a rich man.  Those that don't experience it personally are able to safely distance themselves from the never-ending emotional assault that all of this takes on direct family members.  Deep pain is right - my wife and I have said repeatedly to one another that we feel like we've lost a child.  I don't mean that to sound overly harsh, and I understand that those who have really experienced the loss of a child may find that offensive, and I do not mean to offend in any way.  But it feels a bit like I've lost my son.  And I want him back, and there's nothing I can do.  And I don't know if I'll ever get over it.  But I'm trying.  So, thank you for your comments.

@Swimmy55, thank you I'll look into CODA.

To all of you, your replies mean a lot.  Thank you for taking the time to send them.  If anyone can point me to someone that can be a sounding board to coach us through this, please let me know.  And I will look further at resources on this site.

Finally, please know that I am deeply saddened by your individual stories as well, and I am inspired by your courage and perseverance.  I appreciate having the opportunity to use this message board resource.  This is the first time I've ever met people like us, and that is a big step for us for sure. 

[Resiliant]

I read your post.  The whole thing from start to finish.  Then I cried.  Hot, hot tears of - I don't know - connection I guess.
I wish I had more time to say more but I'm just going to say that I am thinking of you.  God bless you.  I feel your pain.  You are not alone in this.
Hugs

[NorthernMom]

Noname909,

For counselling I have access through my employee and family assistance program.  If something wasn't available like that, I would be calling my local health authority for community mental health services and start there.  Some have drop-in services, some need appointments.  Some may have counsellors to book with, some have social workers to screen the clients and can put them in touch with local resources that best match the circumstances.  If those 2 options for any reason aren't available, next would be doing a search of Psychologists in your area and calling them with a brief questionnaire to determine who might fit better and resonates at least on first impressions with the things you are trying to gain support with.

Boy did it ever hit home when your recent post referred to feeling like you have "lost your son."  That is entirely how I feel about my 18 year old daughter.   And then I chastise myself for daring to feel that way when I know people who have lost their children to fatal illness...then I see a picture in the house and start crying AGAIN!

I can't wait for my appointment again on Monday night to try to take more steps forward and deal with this hell much better for myself so my whole family doesn't fold in on itself.

Thank YOU for your words.  You are helping us just as much.

[Swimmy55]

Yep, that hit home when you've stated you feel like you lost your son.  Same here.  I 've read somewhere that sometimes we have to learn to love a stranger.  Meaning, re- learning how to love a beloved person that has an altered personality.  This is where radical acceptance comes in ( and I have a hard time with that myself).

I  also am  triggered by the "tough love" .  Instead , focus on what is for the highest good for everyone involved, especially ourselves. 
For therapists I will point out a post from Carnation  that may give you a starting point:  https://bpdfamily.com/message_board/index.php?topic=347207.0

Here is a post from this forum on Radical acceptance:  https://bpdfamily.com/message_board/index.php?topic=90041.0

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

[Noname909]

@Swimmy,

Thank you for that article on Radical Acceptance.  It resonates, and it reminds of me a couple of watershed moments I had in discussing my son's situation with his therapist.

The first moment occurred when she told me that I should get ready to accept the fact that he may not ever be capable of going to college and that I needed to lower my expectations (for post high school education, career, etc.).  Now remember, this was back in the time when I was interpreting events with my son as an evolution from ADHD, depression and anxiety to something that started to look a little more like bipolar disorder, because his behaviors seemed to go beyond what you might expect from the prior three.  This new view into what he might have was somewhat new, and I hadn't yet rounded the corner to thinking that this could potentially be a life-long condition yet.  So, radically accepting that he was not going to college, and perhaps may not be able to achieve what I may have thought earlier in his life was freeing for me, and I was perfectly fine with it (I didn't need him to be a brain surgeon, I just wanted him to be happy and healthy).  But it was a turning point, and it allowed me to take pressure off of him and myself and redefine success in a whole new way.

The second time came when we started to come to the conclusion that he likely had BPD.  For years we've tried to interpret behavior that we couldn't explain - explosive anger, inability to accept responsibility, his unstable relationships (including with us), the dishonesty, destruction, attempts to use us, etc. etc., all the classic signs - unsuccessfully.  The therapist told us that BPD sufferers, especially with those that have narcissistic tendencies, may have difficulty relating and feeling empathy the way others do.  That fit with a lot of past occurrences.  What she said that was so important for me was that I needed to view my interactions with him more as "transactions", because that was the way he may be viewing them.  In this way of viewing my relationship with him, I needed to explain the conditions he needed to meet in order for him to "transact" with us in the way that he wanted.  "If you want x, you'll have to do y to get it".  Rather than appeal to his logic, or sense of responsibility, I needed to appeal to his desire to obtain something and spell-out the conditions for getting it.  Now, mind you, I'm hardly the model example of this way of thinking, I'm trying every day to get better at it, but I saw it as a watershed moment for me in radically accepting that my relationship with him would be different than I always thought it would be.  Kind of goes back to your point about learning to love a new person.  What I need to do now is apply the radical acceptance thinking more broadly to our lives with him for us to begin to move forward.  I will certainly think on this more, so thank you. 

As one final note on the transactions idea to those reading this post, my son is a master manipulator of circumstances down to the most minute detail.  So spelling out conditions for "transacting" with us is easier than it sounds in practice, but the concept was liberating for me because it allowed me to stop expecting him to feel empathy for his actions, and it motivated me to stop trying to reason with him.  He didn't respond to logic, consequences for himself, or consequences for others.  He just wanted what he wanted.  What I needed to do, and what made sense to me, was simply spell-out a way for him to get it.  The difficult part of this, of course, is dealing with all of the arguing that ensues about the conditions we set.  This is a work-in-progress. 

[Swimmy55]

Good point about transactions vs interactions.  Hits the nail on the head. 

Also good about lowered expectations .  While my son did manage to graduate college, he couldn't "adult" by keeping a job, putting a plan together for moving out, refused therapy and self medicated with hard drugs etc etc.   He got extremely sick and violent with me and I had to petition the court for a psych hold and restraining order..    I guess what I'm trying to say is I hear you and go easy with yourself on the idea of your child being able to go to college or not.   Re-define what success is for you regarding your son.   Everyone here has a different story about our BPD kids' journeys.

Yes, establishing boundaries is one thing ,and keeping them is another.  Stand tough! My son would find a work around or just crash through every boundary I put up when he lived with me after graduating.  Stand firm- I can't say this enough. 

As much as you can , concentrate on your current successes with your son: 1. He is getting help from a therapist.  This is a huge, massive deal , which in my opinion is equivalent to working towards a college degree.   Maybe even more so, because he is willing to fight for his life, and he could learn skills and coping that could allow him to have foundations to  live a better existence.
2. You are here in this forum and looking to build up your own network. You are getting info on establishing boundaries- these are more successes. 
Keep writing back here as you have need. We are here with you and for you.