Friends, Family & Carers Forum

[Repunzel63]

I live in the country but she lives in the city or near to it. That is another reason why she cannot come home. She would have no access to services. Not even public transport.

[MIFANTCARER]

Hi, I have worked with many Carers with Similar stories that end in feeling exhausted and feed up and I as a carer myslef also understand that feeling.

I just wanted to ask if you or your sibbling was reciving outside support??

I am not sure what area you live in however PHaMs or Partners in recovery are two great services that may help your sistuation. Also Mental illness fellowhips or Carer services in your local area.

They offer some really great support and respite services.

It is really great thet you have reached out with your story, I hope that you can find the support you need to keep things moving in a more positive direction for both of you.

Good luck  

[Repunzel63]

Am thinking you may have meant to have replied to Kiera80 as she is the one who cares for a sibling. I care for my daughter although she doesnt live with me. I have rung all known organisations inlcuding Phams. I ended up linking her with Orygen. She was with a psychiatrist and mental health nurse before which didnt go well at all for her or me. That went for a couple of years. She has had 2 different workers from Orygen thus far. It was her latest worker who put me onto this forum which I am finding to be much more help for me because I am isolated and work full-time but also because I am talking to people who go through the same things. That is of so much value to me because I dont feel as though I am being judged and as such feel comfortable to be open. 

I know that my daughter has to rely on outside help as I simply cannot do and to be frank am not qualified to do so despite the emotional drain. I am working overtime, continuously, to keep her with services but they continually say they are about to close her file because she wont turn up for appointments etc etc.That is the frustrating part as I cannot force her even with threatening to cut of money which her therapyst would not be useful as it just makes her angrier and feel threatened. She has to want the help first and foremost in order for any treatment to be of benefit. Its like a never ending merry-go-round really.

[Repunzel63]

I am trying to get my daughter onto the Disability Support Pension but am having difficulties convincing her treating doctors of the need for her to have that safety net. As a disability advocate a lot of my work is in support clients through the appeal process when there claim is rejected. She attended a medical review today and ended up walking out because they all said that they did not believe she would get it because Borderline is treatable. My argument is that anything is treatable but the fact that it hasnt been successfully treated in over 4 yrs now that this shouldnt be the case for her. I have many clients who have been successful in getting the DSP with this condition. I have a dear doctor letter that explains to doctors that when completing the medical report that they need to list all condtions and not lump them all under one. Eg Anxiety, PTSD, Depression. That way each condition attracks an impairment rating of which a total of 20 is needed. Problem for me though is that I know that they are going to say she is non-compliant. I also know that those under 35 have to go through Centrelink drs but for psychiatric illnesses they still have to provide evidence from a specialist.

Does any other carers have any ideas or stories of success in this area? One of the arguments put forward by my daughters case manager is that DSP and BPD do not mix well together as in the suffer tends to use it as an excuse to not get better. I totally disagree with this sentiment. I know my daughter has been trying to do various courses but has not been able to. She needs that safety net.

[Appleblossom]

@Repunzel63

Stick to your guns.  Nobody can advocate better than you for your daughter.

Re diagnoses.  I am still" pissed" that a general hospital changed diagnosis on my brother to suit the availability of beds for them and a psych hospital.  It happened 3 weeks before he did suicide. Sorry suicide is not a positive topic but it is real and getting more prevalent.

I dont want to be negative but also giving false hope can be a bit delusional. Its another reason why I am skeptical about diagnoses. 

Everybody has limits to the stress they can bear even gungho mountain climbers.

Its about getting the right kind of distance and the right kind of support.

[Repunzel63]

Thanks Appleblossom. So sorry to hear what happened for you. Suicide is a reality we all have to deal with. My daughter has attempted it numerous times and each time she gets out of hospital with no real follow up. She has been formally diagnosed with Borderline a couple of years ago and each time she ends up in hospital I get the psych person to contact her case manager. I get call from the case manager who is very sympathetic but says there is nothing she can do if my daughter doesnt attend appointments etc etc.

I think my problem is that this is part of the disorder. Unrealistic perceptions and goals. I tried to explain the rollercoaster my daughter is stuck in. She has hit rock bottom and I do not have the ability to get her out of it. She cannot access treatment, let alone understand it, until more immediate stresses are addressed. They focus on applying psycho therapy yet fail to understand that she cannot respond to that in the way they want her to with the constant threat of having her Centrelink cancelled because she is not attending school, she is about to become homeless because she is two months behind in her rent and all of the other constant crap that is happening to her. Its a seemingless endless cycle and all I keep getting told is that the condition is treatable. 

My daughter has just turned 18 but has the emotional intellegence of someone much younger. She has a very high IQ though so that means she comes up with some amazing escape schemes. Just recently she has come up with yet another course for another career change that of course no-one has money for and doesnt attract HECS. I keep trying to tell her she needs to focus on treatment first but it falls on deaf ears. I know she cant focus on treatment because the treatment doesnt help her with her immediate crisis's. All that seems to happen is that she gets shafted from one place to the next. They are closing her file because she isnt finding it helpful. I understand their dilemna but I question whether the treatment on offer is appropriate to the condition?

I need her to have that small measure of support from Centrelink via the DSP but if I cant get the specialists to complete the appropriate forms properly then she has no chance of even that. I cant even get them to give her medication that isnt on a weekly basis due to misuse (not allowed to say the other word in this forum I discovered) because they dont want to be responsible for any 'misuse' yet she can do the same with anything and has done so. I fail to see the logic here.

[Appleblossom]

@Repunzel63

Your daughter is so young and much angst and struggle is typical of her age. All I can do is send you warm fuzzy thoughts from my loungeroom through optic fibre. Some might call it prayer.

It is great she has imagination and some drive.

Its a pity she is not meshing with support systems, but that can also turn out to be a strength for some people who do it tough on their own.  I have family stories of that type too.

I am posting for me, and other users, but also for the moderators who might be a bit naive, about how uneven the playground out in the big wide world is. I just hope they keep open and humble and keep trying, but dont burn out.

I had one psychologist tell me sharply that there are plenty of services out there. 

I hear you when you say a few of the things about the system are illogical.

Eg I would have liked my son to get onto the Orygen DBT program but because of diagnosis he was not eligible. So it is like my DIY house renovations.  I will have to do the research and implement it myself.

People who think I dont work while I am on a disability pension have no idea or rocks for brains. I figure I am underpaid for my academic qualifications and lived experiences and am not taking cheek from anybody any more.  Not being feisty to you .. just putting the paid work versus the work of carers issue in perspective.

Hang in there.

[Repunzel63]

I find it interesting that you were allowed to mention that organisation but I was not and had to repost my reply without it being mentioned along with the word 'misuse' that was an obvious alternative for another word I couldnt use yet suicide it ok? I noticed that you also mentioned another organisation in your original post of which I got two versions one with it and another without it. Seems like the moderators have a glitch in their system maybe?

All in all though I think the real dilemna is that the organisation you mentioned as a hope was the one my daughter is involved in but because she is not in the right headspace to accept DBT she remains trapped and is sinking fast as a result. I know from years of research that that org is one of the most respected ones so it leaves me thinking what else is there for her? It seems that because of her age their seems to be a bit of a gap in services. Her case manager basically told me that herself. So how far down does she have to go before something can happen for her? I am not a treating professional. I am too emotionally attached. I just dont have the capacity to deal with this as much as I would like to and have tried for the last 4 years.

Thanks for the hug and prayers though! 🙂

[Appleblossom]

Its ok It must have slipped through. I am still getting used to the Forum guidelines and will remove it when asked.

[Repunzel63]

No fuss. Clearly I am too as I have only recently started and am finding it strange what words you can and cant use. I understand about orgs being mentioned in case of defammation etc. I suppose I should just read the guidelines when I get the time rather than waiting for that post to say it was removed for such and such reason! lol