At crossroad with newly DS. Can he work and be independent?

[55books]

Hello Everyone, 
     I have read several posts and responses and feel very grateful to have found a group of parents who have been through this before.  Thank you in advance for reading my LONG post and plea for help. 
     My 21-year-old son has a lifetime of diagnoses behind him already---age six: ADD and Dyslexia; age 15: depression, anxiety; age 17: OCD, high on narcissism and other personality spectrum--but no distinct PD diagnosis; and now at 21: BPD, anxiety, major depression, substance abuse.  It is a constant whirlwind of diagnosis change and I don't have much faith in psychiatry.
       We sent him to a wilderness program in 8th grade, therapeutic boarding school in high school for 18 months, later a local private school with one-on-one teaching in order to complete high school, and most recently at age 20, three separate mental health facilities in just the past three months -- all these programs were recommended by the professionals who treat him.  My husband and I finally realized this pattern needs to stop -- his bad behavior, us seeking treatment for him ( he only like medicine, not therapy, so he is reluctant at best), further bad behavior leading to residential, him resenting us for sending him to treatment, him not participating or buying into treatment, us wasting our money, he comes home but slowly slides into bad behavior and starts cycle again. 
      2017 was a bad year for my son starting with a major depressive episode including suicide ideation but no attempt.  He was helped with new medication, but said medication caused many side effects, leading to self-medication with alcohol/xanax.  He was working part time as a meal delivery driver and spending all his time studying neuroscience and hoped to start college in August.  Earlier in the summer, we and his psychiatrist convinced him to have a comprehensive assessment at a highly recommended center in town.  They diagnosed him with OCD/anxiety/depression and recommended delaying college and attending residential treatment for OCD in the fall.  He refused and instead started college in August but had to withdraw after just five days due to crippling OCD and Anxiety.  That led to a week in a local mental hospital in September after we found him passed out on floor due to taking too much Xanax/alchohol (he had a prescription for xanax but abused it by taking several at a time).  He finally agreed to the residential OCD program but as soon as he arrived, he "miraculously" didn't have any OCD symptoms, so they discharged him with a new dual diagnosis of anxiety/substance (again no BPD). Even though we pleaded with them to look deeper, they couldn't keep him if they couldn't find anything to treat.  I can't tell you how frustrating this was, after everything we'd been through recently.  Their discharge plan of a day therapy program in our town didn't work since the program director didn't want to work with him after reading his case notes. They thought he needed more help.  My son said that was fine -- he didn't need a day program and he would work and save money until school started again in January.  We were skeptical but let him lead.  We agreed he could live at home after the OCD program in October only if he would work  and not drink or do drugs.  One the way home from that program, he took a day's worth of xanax at one time (Of course the hospital gave him his meds since he was 20). I told him that was his one "freebie." He agreed to let me dole out his meds, including the xanax.  One week later, he found a job bussing tables, but the first day, he drank/took xanax and walked off the job after 10 minutes.  I asked him to interview for another recommended residential program-- this one we were told would help much better since it helped people with a primary "psych" diagnosis and secondary "substance" diagnosis.  He agreed and was accepted but still believed he didn't have a problem. We were just waiting for a bed at this point, but still hoped he would figure things out on his own. 
        He also believed at this point that he would go back to college in January despite not being able to work or go more than a week without abusing alcohol/xanax.  The night of the third episode, exactly three weeks after he came home from the OCD program, he finally pushed us too far when his 17 and 12 year old brothers witnessed him stumbling around our house obliterated, verbally abusing us and falling down and crying as he told us how horrible we were.  After I got him to bed, I came down to find my husband and my 12-year-old hugging and crying.  I knew then he could not live with us. 
     The next day I gave him the choice of going to third residential program I described above or I could take him to a homeless shelter.  Since he has only been working part time for the past few years, he had no money and no means of support. He had stopped working in September after the anxiety got so bad he couldn't drive.  He agreed to go to program.  Now we realize that since this wasn't his idea, and he felt we forced him to go, he wasn't going to follow guidance or commit to program.  After two weeks, he stopped going to any groups or individual therapy, saying he didn't have a problem (this happens every single time he is in residential). 
      However, two good things came about during his month away at this third and final program. 1.They weaned him off of all his psych medicines (all were shown by genetic testing from the comprehensive assessment to be bad for him).  2. The doctor diagnosed him with BPD and discussed it with me in detail.  I then realized that many of his doctors over the years gave us clues, but never said the actual words "BPD."  We had heard "black and white thinking" since age 14 and other symptoms at various stages of his life but not until this last program did any doctor put it all together.  Not even when he had a comprehensive assessment this summer!
     During the last week at this program (just two weeks ago), my son stressed he had no symptoms of any mental illness nor did he have a substance program and only wanted to come home.  We held strong and told him he could not live with us, but we would help him financially until he found a job and could support himself.  He was very angry and threatened to never see us again.  Sadly, he wasn't able to find a place to stay.  He doesn't have a lot of friends and the ones he had were not in a position to have him stay with them.  A friend of mine who has know him since he was little has let him sleep on her sofa since he returned home.
      Since learning about his BPD, I have read a few books and realize perhaps sending him away those many times was the worst thing we could have done.  I still see signs of narcissism but after reading more about BPD, I am convinced this is the correct diagnosis.  My son says he DOES NOT have BPD since he has no fear of abandonment and doesn't even like us or want a relationship with us -- only a financial relationship. Yes, he actually said that.
     He has been back in our town for 10 days now and is still sleeping on my friend's sofa and looking for work.  He has had no luck finding a job, despite the holiday season. I believe his sadness, blankness and lack of affect is apparent and employers are leary.  He's about to lose his place to live and will need new shelter and, of course, a job. 
     Also, I know he will need psychiatric help soon (which I have already told him we will pay for) and I don't know how this next phase of his illness will look.  Every time is different.
     Here are my questions (finally!):
1.  At what point do we realize that our son can not function independently and will need our help always? 
2. Are we enabling him by helping him now?  I understand the tough love concept, but he has mental illness ( even though he says he has no symptoms now) so how can I let him be homeless and expect him to then find a job and shelter?  All doctors have said to let him fail completely so he will realize his behavior isn't working and change.   I understand that, but can't bear to let him suffer if he is truly ill. Does tough love work for the mentally ill?
3.  Where do I draw the line on helping him?  At this point, I am working probably harder than he is, sending him job leads (which he doesn't want) and looking for cheap rooms for rent that he could afford on a low-paying job.  My husband doesn't want him living with us and our two other children, and my son doesn't want to live with us either, but he can't support himself.  We have told him that if he could prove that he can keep a job, treats us with respect, and not take drugs or drink, then he can move back in with us -- but that will take a few months before we comfortable that he has truly changed his behavior.
4.  If the time comes that we realize he will always need our help, one idea I had was to finish our basement so he would have a home but also be separate from us as much as he needs.  But if I offer that too soon, am I enabling his dependence on us?
5.  Geez, I'll stop now.  I think you get the idea.  Help!

     

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

[JustYouWait]

Good morning, 55books.

Wow, that's a lot to unpack.  There were portions of your story that when I read them, I felt like I could have written them.  I feel for you and your family.  I feel with you and your family.

You are at the right place.

I'm fairly new to having a kid with BPD, my DD is 18 and was just diagnosed, but, like you... .many of her therapists, psychiatrists, and hospital personnel often said "BPD", but non w would "tag" her with it while under 18.  The reason we heard, over and over again, was that "They don't like to tag BPD under 18. The brain hasn't finished maturing." 

Whatever.

Your son saying "I don't have BPD because I don't have (insert the one thing they read about BPD symptoms that they don't think they have)" is similar to my DD.  I think (again, no expert) that it is a defense mechanism against the diagnosis.

2016-2017 was bad here, as well.  Suicidal ideation, self-harm, risky behavior, alcohol abuse, drug use, 8 hospital visits for self harm, 7 inpatient treatments, 3 partial hospitalization programs, a 5 week college attempt, can't work because she shook from the meds... .and chaos in our lives.  Please read that as intended, I an absolutely NOT having a "who's got it worse" contest, I want you to know that you are not alone.

The person with BPD has to want the therapy.  It is the basis of the beginning of healing or managing the diagnosis.  In my case, we sent her to residential with her at about 50% willing to do it, with the hope that she would see the light and commit fully to it.  It took three or 4 long weeks, but I think she has turned a corner... .we will see. 

One of the many problems with the diagnosis, as I see it, is that the BPD person has come to believe (and in my case) had been treated for, many other diagnoses prior to receiving the BPD tag, so they are convinced that their problem is chemical.  Chemical problems can be solved by a magic pill, just look at the commercials.  Who DOESN'T want to run barefoot through a field of daisies?  That looks AWESOME!  When the BPD diagnosis is given, the pwBPW realizes that it's internal, as opposed to chemical, and seeing a flaw of this size in oneself may be very difficult to accept, hence the "I don't have BPD" push back.  (Again, I'm no expert).

I apologize for the disjointed and all over the place answer, but I wanted to address the things in your post that jumped out at me.

Most importantly:  your and your family are NOT alone on "BPD Island".  It's a bigger place than you realize.  Glad you found your way through the jungle to our campfire.  C'mon over and sit on the log with us.  There's plenty of room.  (And I just got here myself).



 

[Lollypop]

Hi 55 books

First of all - welcome. I’m glad you’ve found us and you’ve started to read up about BPD. This is really really important. Take a look at the top right hand side of this page (Start Here) and you’ll find a ton of information that will help you. I want to say how sorry I am to learn about your situation; it’s exhausting and diagnosis is incredibly difficult to take.

I want to tell you that there is hope. You’ve started to work a few things out for yourself and that’s brilliant news. My DS27 got dx at 24 and to be honest this was the start for us. He was non functioning, drug use, no job, depressed with no hope. It’s turned around for us and he moved out about 5 weeks ago - it’s a sort of half way arrangement. My DS works, manages his money somehow, is functioning - it’s a miracle!

At 21 my DS wasn’t mature enough to cope. He didn’t have the skill set he needed. I concentrated so hard on job and no drugs and with hindsight I got this wrong. It’s a complex situation isn’t it. I’ve got a younger son too so I know how the whole family can be affected and my heart goes out to you.

At what point do we realize that our son can not function independently and will need our help always? 

For us, “always” wasn’t an option although my H despaired at my DS ever being able to live independently. We had to find a way, even if this meant my DS was declared as permently unfit for work then he’d had to go through that system, receive benefits and live independently without us being responsible. That is what we decided.

We returned him home and the dr declared him fit for work, my DS refused to sign on for benefits while he “looked” for work. Faced with a situation where I had an adult living at home who was physically able to work but was passively aggressively refusing we deviddd to provide a bed and food only. It was a momentous decision to not give him cash nor provide a phone or car.  It was our first step to treat him as if he was a real adult.

2. Are we enabling him by helping him now?  I understand the tough love concept, but he has mental illness ( even though he says he has no symptoms now) so how can I let him be homeless and expect him to then find a job and shelter?  All doctors have said to let him fail completely so he will realize his behavior isn't working and change.   I understand that, but can't bear to let him suffer if he is truly ill. Does tough love work for the mentally ill?

My DS felt such a complex range of emotions, racing  thoughts, unable to think clearly, desperately confused and unhappy. Lack of self confidence and motivation, too scared to do anything, he self medicated. He took the path of least resistance and while we continued to do things for him he didn’t have to learn how to take responsibility for himself. We tried to force him to do it all at once - for us we just set him up to fail. It wasnt realistic for him to be able to do everything at once.

I finally tried something I’d never tried before. I decided to change my approach. Instead of focusing on his drug use, his lack of job and all the negatives I focussed on our home environment instead. I made it light, caring, emotionally supportive. I do not allow drugs in my house or smoking - that was my one rule.

3.  Where do I draw the line on helping him?  At this point, I am working probably harder than he is, sending him job leads (which he doesn't want) and looking for cheap rooms for rent that he could afford on a low-paying job.  My husband doesn't want him living with us and our two other children, and my son doesn't want to live with us either, but he can't support himself.  We have told him that if he could prove that he can keep a job, treats us with respect, and not take drugs or drink, then he can move back in with us -- but that will take a few months before we comfortable that he has truly changed his behavior.

I stopped doing everything for my DS that he should be doing himself.  I once taught him to tie his own shoelaces, from them on I stopped tying them. If my DS wanted money then he had to work out for himself how he’d do that. It’s best he learns how to problem solve himself. Doing deals doesn’t work for my son - he gets emotionally confused. I keep things simple as possible. I learnt to do this through better and more effective communication skills. Take a look at SET.

4.  If the time comes that we realize he will always need our help, one idea I had was to finish our basement so he would have a home but also be separate from us as much as he needs.  But if I offer that too soon, am I enabling his dependence on us?

I can see how this situation would resolve your situation and your fears. I felt that if I made my DS too comfortable he’d have no motivation to ever move out. There are some on the forum that create a half way arrangement, financially supporting and very gradually reducing financial input. We couldn’t afford that and also my DS would not have been able to function in the very early days.

We all want the same thing in life: to be loved and understood.  By learning about BPD you’ll find that you don’t react to his behaviours in the same way. You can see this is about learning how to be the parent he needs, one with boundaries that are given in an assertive but caring way. I needed to learn to get back to basics and I got myself a plan.

My DS refused treatment - I respected his decision. As my skills got better, our relationship improved and he now listens. He trusts us now to not react or to fix his problems. We placed the responsibility for himself where it belongs, in his lap. It’s been a long slow process. We inched forwards and he’s gradually learnt by making his own mistakes. After all, that’s how we all learn.

I hope I’ve helped you in some way. I’m sorry this was so Long a reply,

Do you feel your son is fit to work at the moment?

Hugs to you, I know it’s tough.

LP