Friends, Family & Carers Forum

[sybill07]

Hi

Me again.

So we are at a really low point. Suffice to say, we can't pay the rent, and are looking very seriously at selling much of what we own, and living in a shared house/caravan or something.

I really think that this won't be helpful as it will be incredibly stressful on both of us. But I honestly don't know what to do.

I have spent nearly all this year dealing with centrelink and getting support for husband, and working on medical matters for him. End result: put my life on hold, and haven't really been working and so now things are rough.

I worry about the stress this has on my family. They try to help, but it is a bit beyond all of us. The support workers are out of ideas too. I have so many issues to deal with now being the 'failure' of the family (I know I know...)

I feel like we just need a bit of time to get back. All the work has been good - husband is on dsp, is getting treatment for physical issues and has a supportive employment agency - all exactly what I had in mind when i started this journey last year.

I'm afraid it's me now who is falling apart. My brain seriously is having issues.

But all I can think is that I have to pick myself up and go out and get some form of work. Any work. It may not be enough but it will be a start. I've been doing anything and everything the support workers suggest, but I find it very hard at times, especially when it seems like there isn't any help at the end of it.

I know really our life is easier than so many of you. But I am very concerned about my mental health, as well as my husband. I have found I am not as strong as I thought I was.

I would welcome any advice - I can't see which way to turn, and have lost the ability (hopefully temporarily) to make wise decisions any more. I really don't know what I'm doing, or what we should be doing.

I'm going with my gut instinct which is what I did last year - I need to look after my husband, and even though it was so very hard all those months, I felt he needed proper support. Which is now in place (amazingly, after all those false starts). But it needed me practically full time to be advocating and negotiating and communicating.

I'm ready to fight for him again, but I just don't know how. My gut feeling is that he needs stability. Extra stress and the stress of having to move and sell things is not going to be good.

What do you do when the carer needs care as well, and is falling apart?

[Mosaic]

Hi @sybill07 thanks for sharing.

It sounds like you're reaching the point of exhaustion trying to care for your hubby and ensure he is getting the support he needs. Your devotion to him in spite of these setbacks is truly admirable. But I wonder - what about you? Who is looking out for you? Do you have anyone you can turn to for support when you need it? If you don't have a strong support network in place, I hope this community can help to fill that void. You're among friends here 🙂 There are also carers organisations like Carers Australia or ARAFMI who you can connect with. If you're having a down day, maybe take a moment to call their helpline and speak to someone who understands. Hopefully this will help to lighten the load a little for you. Take care.

[Louise]

Well done for looking after your husband and getting him all the support he needs. Take time to congratulate yourself and even celebrate those victories. Can you manage to take a day or two off for yourself just to relax? You may need a few days to get a clearer perspective on where to go from here. It may not be wise to rush into whatever work you can find if you are seriously worried about your mental health. There are limits to what we can soldier on with....

[sybill07]

it's awfully difficult isn't it...

you have to soldier on, and keep going but i am being mindful that last time i tried to be a brave little soldier and carry it all on my shoulders, my brain went absolutely haywire and i woke up in hospital...

i have found a day off from the stress has really helped to gain perspective, and just give me time to listen to my instincts. so.... onwards.

[Louise]

Glad you are feeling better. My son is battling bipolar disorder at the moment  and the worry is getting to me. There's only the 2 of us in the household and I do worry about finances too although I try not to look too far ahead. I have a bad cold and was tossing up this morning about whether or not to go to work. I did go but had a minor meltdown just before midday and asked for the afternoon off. Thankfully I got it! I hadn't realised I was so fragile. I miss being able to talk to my sister ( she's busy with a new boyfriend) and my Mum ( she has dementia). I feel so lonely sometimes xx

[sybill07]

i think it is really important to not feel alone, even though that is really hard.

i was reminded again today to take the assistance of the supporters, but even that is hard.

what i find amazing (literally) is after months of centrelink saying one thing (ie you are not eligible), those in the know have advised differently and so we're trying again. or rather, we are trying together rather than just me.

those forms!!! it makes so much more sense filling them out WITH someone who knows the system.

i really don't understand. there is help out there, but when you ask for it from centrelink, they say no. but then when an advocate or support worker speaks with you, then the way is smoothed. how much stress and cost would it save if these things didn't go on for months and months... leaving you about to become homeless and unable to work before something happens

have you got a support worker or a carer supporter, or a good friend that you could just do something different with and have a laugh?

[Louise]

Yes, I do have friends but I don't have any support workers, and I suppose a large part of the loneliness stems from not having a partner.

Regards Centrelink, I had dealings with them for years as a single parent with mental illness myself and sometimes it was really awful, I fully hear what you're saying. It was horrible having to quit work 2 years ago to care for my son, just having to go through all those meetings and forms again, sheesh. Thankfully he improved and now I'm working again, I haven't needed Centrelink for over a year.

I am still on a fairly low wage, working about 25 hours a week, which allows me enough time to keep an eye on my son. which is vital at the moment as he is very unstable, always losing his keys, phone, wallet, leaving the heater and hot-plate on, has some strange ideas etc Not to mention the extra household chores that build up. i do require him to do some chores but generally it takes longer to prompt and supervise him than it would to do them myself.

Of course I'm hoping his condition won't get worse. At least I CAN support us at the moment. But if he gets worse I will have to quit work and go back on Centrelink. I guess if he was on a DSP and I was on a Carers Pension our income would be much the same as it currently is, which would be fine. But I really just dont want the aggravation of being part of that system.

Hope you are feeling more positive about the future

[GlassHalfFull]

It's amazing how similar the themes are between careers on this forum. Trusting your intincts is something I relate to and agree with. Despite the difficulties and barriers (money) it seems being a supportive and present carer means we sacrifice anything. Some practical strategies that came to mind (you may have already done) when I read your post was to see a financial counsellor who really help to find ways out of tight spots and are usually free. They have helped advocate and support me through some hairy times. They at least provide support and help make a plan and get control again. They take the cognitive effort out of solving tough money problems. The other is charities that are able to do short term interest dress loans or pay for essentials like electricity or food thus freeing up money for rent. Centrelink usually have a social worker too.  Sux that we have to worry about money when we are in some cases keeping our loved one simply alive. 

Hope you are doing better