joining - at end of tether

Hi @sybill07 i dont have much time for writing as Im a 24/7 carer for my two kids with MI. I just wanted to say that Ive read your story and I feel for you. I can identify with many of your feelings even though my story is different in specifics, its also been similiar in feeling the slide of my own mental health as I try and hold a family together with little to no support. Being born into this society that isn't yet able to provide adequate care for people in need and having to hit homelessness, mental health breakdowns, loss of children/spouses etc. before qualifying for any sort of assistance. Its demoralising, victimising and plain unfair.

I've briefly written about this before, but I am not getting much time to update and detail (teenager stuck to my hip), however, we got a social worker through Good Shepard and she was able to come out to my home and break down all my issues and problems with me, set goals and workable stragegies, access services, programs and provide support etc. Your geographical area and family situation would mean probably a different support organisation, but I encourage you to find professional support of this nature.

@sybill07 I'm so sorry you're suffering so badly. I am in a different situation, but I can identify with yours. I'm also near the end of my tether and I just can't keep doing this the way it is.

You need help and I'm sure there is someone out there to help you. What state are you in? I know there are others on this forum who can point you in the direction of services.

We were living overseas when everything fell apart, and getting back was a nightmare that hasn't ended. And yes, Centrelink were terrible. They lost hubby's application and we had to do it all over again, while i had to deal with the anger that comes every time something doesn't go according to hubby's wants.

And I took away ALL the money and hand it out as asked, because he has no idea of how to manage it anymore. He has discalculia (no ability to understand numbers). I am a full time carer for him, because he can't be trusted alone not to damage things, because he can't remember, care or understand.

There are two payments you can get as a carer from Centrelink. One is not income assessed, and is about $120 a fortnight and you should ask about that. I know dealing with them is crazy. It takes so long just to be able to ask a basic question. You may also be able to get carers before hubby gets his disability. They put me on carers within two weeks of applying.

As for feeling so down, what are you doing for you? I came onto this forum a few months ago, in absolute overwhelm and the wonderful people here gave me a lot of good ideas on how to cope. Not everyday is ok, but it's improving a little. Getting help also lifts the load. I'm still falling between the cracks, since i don't have a fixed address. I get angry. Very angry and wonder what I did to deserve being put under this much pressure. Nobody who isn't in the same place can hope to understand the stress and distress it puts us under. So keep venting here.

Hello @sybill07,

I am sorry to hear you have run out of coping ability. I hope you feel better for sharing your story. It seems from what you write here you are doing the right thing and trying to access the support you need. I know from my own experience that generally people will be concerned with the welfare of the partner with the MI first. I think this is probably appropriate to a degree because they are more vulnerable. It is hard being the strong one without adequate support yourself and although I have never considered suicide, probably in part because of my Catholic upbringing, I have been at the point of wondering if I too have a MI. At that point I felt hopeless.

Getting involved in a forum helped me to find some hope. I hope it helps you too.

Cheers.

Thanks everyone

i know i came across as an ungrateful and grumpy cow - it just has really got to me again.

I am grateful for the support we do receive - we have the best pyschiatrist who bulk bills us, the medicines are now cheaper because he has a concession card.

I should add in interests of full disclosure - what happened last year that took me to hospital was out of the blue, and a big wake up call to us all in the family. I was so focused on caring and earning money and working long long hours that i started to only be able to focus on one thing at a time (most unlike me), and feel dreadful because we weren't eating properly, or i'd made a decision that was incorrect. In hindsight, i was not coping, even though i thought i was. things had got on top of me. Amusingly, while in hospital er, i demanded my laptop and access to wifi so i could keep working. 'i have to work! they're depending on me!' That got shut down very quickly by the er nurse 'madame, this is NOT a private hospital' I'm told what happened was a 'disconnect'. I don't actually remember. I remember feeling trapped and v unhappy and literally like waves of black closing in. And then being in hospital. so literally my brain decided to shut down and jump out the window.

I've been trying since to rejig things and rethink a lot and share more with the family. But yesterday again it all became too much and the stress that i'm a burden on them (my parents are old, my brother has a family etc)

i'm going to access carer support because i don't think its fair just to lay it all on my family. I think chatting with others and 'venting' is valuable. even if i do sound like a selfish cow. But quite honestly i do feel resentful. it's been hard. our plans seriously hit the dirt. his family don't think there is anything wrong with him and are in denial. i think they secretly think someone drugged his food (not me) and that's how it all happened. it's my family who bear the brunt of it all.

i miss being normal. i miss sharing responsibility. i miss intimacy. i miss being able to talk about memories - he just doesn't remember much! i miss being able to plan things. i resent living in fear and missing out on SO MUCH because we just can't afford the petrol. you know how it is. and at the moment, i feel like the responsibility is solely on me to manage the household, bills, menus, adequate nutrition, exercise, mental stimulation, health checks, employment stuff, cleaning the house, doing the gardening, managing appointments AND do my own work and be the one who is planning for the future. and then feel like a failure because of my own depression i can't get it all done. and then feel like maybe the best is to just bite the bullet and get a fulltime job and be a wage slave but i'm not sure that is the best for him. when i was working fulltime, i couldn't be a proper support for him. i had to share the work stress with the home stress and, as you might believe, it just got me more stressed.

i feel like it is me who has to be cheerful, positive, not stress him too much, be the instigator of every fun thing as well as be the fun police 'no we can't afford that', do most of the talking, try to motivate him, be the one who is the tale teller at the drs - i think he's more depressed, he can't sleep at night etc. if it is up to him, everything is fine because he lives just in the moment. i'm the one who has to remember and bring it up so the dr can have the full picture and better placed to join dots.

oh dear - i'm venting again. but you all know what it is like. i get told off for talking too much to other people, that's because i'm starved of adult conversation!! i literally get grunts.

i think on mon i will try to make an appt with a counsellor. i'm not sure what a social worker might be able to do but i'll try that too. i really think talking to people who understand is valuable. and i hope to be able to learn some lessons too.

it's that everything is overwhelming and nothing is fun stage... i love gardening and reading and writing and history and diy and stuff, and i just can't find any joy in them at present.

one question (and not a ranting vent i promise!)

Has anyone else had the experience where for years you have tried and tried and thought you were doing ok and things were inching forward ever so slowly at a glacial pace and then suddenly something happens and you realise that you're not waving, but drowning? Everything isn't working? More water is coming into the boat than is being bailed out? And you start to think that if only you had done something different earlier on, maybe it would be better?

basically the humiliation of realising that you just are not coping? as a middle aged adult, i find that a scary concept i guess - to not be able to cope

Ranting vents are fine! Talking too much is fine too. I do it. I know I do. Starved of adult company all day, every day. I don't have a job to go to where I can have adult time.

Coping? What's that? Drowning. Absolutely.

We lost pretty much everything we had, when we lived overseas, in part due to hubby's brain injury (and a few other events) and returned to Australia with no home, no jobs, no income and then got hubby's diagnosis of anoxic brain injury.

We live in a caravan which is hell on wheels, pun intended with someone with an ABI. I fight to get us into a home but we housesit so I can have a little bit of space, but that still comes with challenges. Everything is just so hard when your partner has a brain injury and behaves like a toddler having a permanent tantrum. I fight to get enough money together. I fight to manage to do all the daily things, take care of me, handle the abusive language, fight off the obsessive, compulsive behaviours and the bullying and control (hubby thinks I require micromanaging, down to how and where! I wash my hair, use the bathroom etc) even though he can't remember (or cares) to wash his hands or use soap when showering.

And after I do everything, when I am able (some days I can barely move), I have to check on every single thing he does because he can't be relied on to do anything correctly and he lies about almost everything, when he feels like acknowledging I spoke.

And, no, coping isn't something I do real well. I do have major health issues of my own, both physical and mental. I try not to think much about what I could have done differently, because if I look back, I know taking my husband back after we were separated for 18 months was the wrong thing to have done even though he hadn't been broken then. But I didn't and this is what it is. I look forward and make plans.

so....

an interesting time at centrelink.

as far as I can see, there is no real support out there. you have to just manage by yourself.