Friends, Family & Carers Forum

[Former-Member]

hello @Janna

You have come to the end of your tether. You are a human being with feelings and emotions of your own.

You feel that you have done all that you can for your son. The so called organisations that are supposed to be there to support you clearly have not, if at all, not done their job.

You are drained, exhausted, fatigued and have no energy left for anyone not even yourself.

you have been let down by the mental health system.

your love for your son is still there buried in all of the disarray. You just dont have the strength or energy to even think about it, let alone look for it.

I think that you have reached a state where auto defence has kicked in survival of yourself. you are just in a robotic state at the moment.

No surprise. You have faced unbelievable grief and bureaucrats.

I am in the process now of trying to locate my missing adult son, diagnosed with paranoid schizophrenia whilst detained in publichealth system. the so call ed mental health team assigned to him, whom supposedly offer so much support to him and family according to the paperwork are a waste of space. The care coordinator who has hardly contacted me at all. i have been doing all the ringing around gleaming information, doing sleuth work. she finally contacted me for the first time a couple of days ago. she was assigned to my son in october. she did not like the fact that i questioned her role, what she had been doing, she just wanted to talk at me in a condescending, intimidating tone. I just kept asking more questions , my anxiety heightened but not rude or aggressive just forceful my husband described it. i call it being assertive. she asked me as i was following up could i please keep the team informed. my response was why theyhadnt with me. well then i was told that i was rude and she hung up on me. so much for support when you are out of your mind with worry because you have been told that your son is seriously ill and needs immediate assessment and treatment. he has gone interstate.

so yes i understand how you fee. do not feel guilty. do not feel that you have let your son down. your love is still there and you will find it and feel it again. just for now be gentle with yourself and take little steps in your day to day stuff.  i dont have a magic wand or any magical answers ;i wish i did i truly do as i bawl my eyes out in writing to you. i just want my real son back. i want to hug him and let him know how much i still love him and no matter what he must never forget that. He has verbally abused me and sent me horrible text messages and his dad too. this is the unwell side of him. he does not behave like that when he is well.

the interstate mental health team who are meant to go out and assess himn were supposed to ring me last night. 4.14pm today and nothing. so i am going to give them a call. if i dont get any help from them. i am going to ring the hospital. im not sure after that but i am not giving up on my son. take care. be gentle with yourself so that when you are ready you can start from page 1 with your beautiful son.

I believe that people who have schizophrenia or similar illnesses are gifted and are on a higher senses level than us and that is why they cant be diagnosed properly.

so i am looking for my beautiful, gifted, son.

[Janna]

Thank you @Former-Member for your kind words and for also sharing your story.

I feel a little better now that I have been able to vent some of my frustrations with the mental health system and offload some of my feelings.

My son has improved a little over the past few days - perhaps he knew that I was at breaking point .. I don't know.

I've also had a little time out for myself just to get me out, about and focused on something else for a while.  All things combined have helped and I'm thankfully not at the crisis point I was in a few nights ago.

I'm so sorry to hear about the ongoing problems you are having with your son and can't even begin to imagine how much concern you have for his well-being.  I'm also sorry to hear that you also have experienced such poor and unprofessional service within the mental health system, but unfortunately this area of health is extremely under funded and subsequently under resourced.

My son does not have schizophrenia, but I also believe he is highly intelligent and have my own theories not too unlike yours.  

Many thanks for your lovely reply.  I hope and pray that your son is located soon.

Janna ❤️

[ErikaJ]

Dear Janna

Yes it is very disappointing to find that after all your best efforts your son is stuck in the same place and merely existing.  As much as you would like him to have made some gains, the fact is that he hasn't... not really.  Now all you can do is ACCEPT this.  Accept that he is is his room.  Accept that he is like the "living dead".  Accept that he is not what you'd like him to be.  This doesn't mean that you give up offering to get him out of his room but don't feel rejected or a failure if he rejects the offers.  Accept that he is not ready to move past this point and that he may not be ready for a long long time.

If you had a child who was blind, you'd seek help from doctors.  But if after consulting every specialist in existence the child still could not see, you'd just have to accept that he was blind.  You couldn't be angry with the child for having this disability.  You wouldn't love him less.  You wouldn't blame yourself for his condition.

It may be helpful for you to think of BPD as a disability like impaired vision, something that just is and it is noone's fault.

Acceptance of your son as he is may lift the burden of feeling like you have to fix him, which is exhausting, disappointing and all consuming.

I wish you strength and peace in the knowledge that you have been the best mother he could possibly have had because you have done everything.  All the best.

Erika

[Faith-and-Hope]

Hi @ErikaJ .... welcome to the forums.

Love what you wrote for @Janna.

💜💐 @Former-Member .... thinking of you.

[Janna]

Thank you @ErikaJ for your reply and welcome to the forum 😊

Although I do accept where my son is at, I have difficulty accepting the whole situation because he showed that he had the capacity and potential to improve whilst in residential care.  Using your analogy regarding a blind child - if you consulted doctors and engaged in treatment that restored sight, but then the treatment was removed and the blindness returned - that's sort of where I am at with my son.  If he had not shown such significant improvements in the first half of the program (before his main therapeutic alliance was removed) then I would more readily accept this situation.  I think that's why I feel so frustrated - I know that he responds well to the right treatment, but I can't provide it and can no longer access services that can.  So in the blind child analogy that would be like knowing your child can see with the right treatment, but you can't provide it and neither can you get it because of the constraints of the health care system.

Unfortunately I will have to accept that this is what it is right now and hope that someday, somehow my son will be able to access his own internal resources to help himself.  I just wish there was more I could do right now.

Many thanks for your reply again

Janna ❤️

[Faith-and-Hope]

Hi @Janna ... 💐

I can so relate for a different reason.  I have a high-functioning daughter with an intellectual and physical disabilities.  When she is met with low expectation by others, who approach her as though she were infantile, she responds at that level, and my protests are over-ridden when I try to discipline her into responding at her actual capacity level.  

So frustrating.  She treats it like a game, ignorant to the fact that it is damaging her opportunities to function at a higher level, with greater opportunities, within society ....

And I am so familiar with that sense of disempowerment .... one teacher asked why I (or they) ought to be bothered with her formal schooling stating "after all, what is her life likely to be ?"  I was floored, then furious ... the woman could see that D2 (daughter2) could read, do maths, and write, and was refusing to engage with her.  If she wasn't capable, I could understand, but she clearly was ...

Hearing you, feel for you .... 

Hugs n hugs .... 💗💕

[Janna]

Thanks @Faith-and-Hope.  Your situation, although different, sounds similar and very  relatable.  It is beyond frustrating to be forced to accept no help or the wrong help, when the right help can and does work.  Meanwhile, my son suffers and so do I.  

Hugs to you

Janna ❤️

[ErikaJ]

Hi Janna

I hope that you found something to smile at today.

I am sorry that I hadn't understood that your son had made progress in the residential facility because in your  "Lost Hope" entry, you wrote that your son "has been through the entire mental health system and emerged without any positive gains".  Perhaps you wrote about his progress in a prior entry.

I don't know your full story, so I can see how my analogy about the blind child missed the mark.  Now I understand that your son made positive gains with the right kind of treatment, which is no longer available and this is incredibly frustrating.  As you say, there are many giant holes in our mental health system and I think we carers need to somehow be part of the solution.  We know what the issues are and there are so many of us so surely our collective wisdom and voice could influence the powers that be.  You hinted at writing about the inadequacies of the mental health system.  When you feel up to it, I'd love to hear about it.  I think many of our stories have a degree of similarity about them.

Stay strong.

Erika

[Faith-and-Hope]

@Janna 

I think it becomes a combination of things.  Sometimes I speak up and stand my ground.  Other times I let things go because I can't see that it will change anything in terms of the other person's attitude, and will just leave me feeling worse off ... Sometimes the other person is respectful, and very sweet, but wrong, and there is still no way through.  

Mostly I take it back to my daughter .... just focus my attention on her and her boundaries, and try to find peer support for her.  I don't know what I would do without her siblings cos they and their friends are the biggest support.

It's about the person rather than the illness or disability.  If others get to know them and appreciate them for who they are and what they struggle with every day, it's the engagement of compassion that seems to help the most, trying to put yourself into someone else's shoes.

Walking with you ....

💗💕

[Janna]

Hi @ErikaJ
No need to apologise for not understanding. Without the back story, and with the blanket statement I had made, you weren't to know.

My son responded very well for the first half of the residential program he was in. He attended school (in the facility), was doing well, his mood improved, as did everything ..... until the psychiatric registrar which had been assigned to him for "therapy", and with whom he had built a very strong therapeutic relationship with, left because her posting was over. He was devastated. Then there was an unacceptable gap of approximately 6+ weeks before the incoming registrar started and was in the position to engage with him. Meanwhile my son was without any professional support, other than from the nursing staff. The relationship with the new registrar never took off because they just didn't "click" and also because my son's mood had dropped and he was "over it". He never really recovered from this and felt like he had been abandoned. He gave up. What was proven though was that a combination of medication and intensive and ongoing therapy worked.

The truth is that my son did come out with some positive gains (which are hard for me to see when emotional :face_with_rolling_eyes:)- the main one being that he is more in touch with his emotions and more able to effectively communicate. He still does engage in some things such as a dinner out occasionally, a trip to the hairdresser, etc, as opposed to nothing prior to his admission. I'm not sure if that could be attributed to the program he was in, or is simply because he is now 1 year older and maturing.

I would be more than happy to share my ramble about the mental health system so stay tuned I'll do it soon.

Janna ❤️