Have your say

22 March 2012

Your Carers story

Please tell us your Carers story. How has the Carers community impacted on your life?

Discussion Topic: Carers Community 65 comments

 
 

24 April 2012

rowena gibson says:

My son was diagnosed with schizophrenia four years ago when he was 18. At the time we were living in Cairns and renting privately. As his behaviour was sometimes intolerable we were eventually evicted and had to apply for public housing. We were eventually housed in an area of Cairns that had an extremely high crime rate. Over the 3 years that we lived there we endured several incidents that impacted upon our lives in a traumatic manner. The most serious of incidents happened approximately 10 months ago when an intoxicated 16 year old stole a van up the road and drove it directly into our lounge room wall at 3am on a Sunday morning, damaging a brand new lounge that I had purchased only 3 days earlier. After this incident we moved the tv into my bedroom and we stopped spending any time in the lounge room, in fear that it might happen again, as we lived on a very busy corner. I was not compensated and when I applied for a transfer, I was told that it was not a matter of urgency as it was a one off incident. Several months later an intoxicated indigenous woman walked into our home at 6am on a Sunday morning and went into my daughter's bedroom and tried to wake her up. After this incident my daughter was too afraid to leave the house and even walk down the street, in fear that she might encounter the woman again. She eventually stopped going to school and I had to start home schooling with her. After several attempts to gain a transfer through the public housing system with no results, I eventually gave up my public housing dwelling to move down to the Sunshine Coast where I could be closer to my brother for family support. I also had to leave a job that I had just started 6 months ago and enjoyed very much. I have now found a place to live in Caloundra and I'm enjoying living here very much, although the rent is very high and I'm struggling financially. I tried to get some assistance from the Dept of Communities in Maroochydore for public housing, but my attempts to gain understanding of my situation fell on deaf ears. I'm am now seeking employment in the Mental Health Sector as I was working as a Mental Health Support Worker in Cairns and enjoyed it very much. I went to Cairns Tafe last year and gained a Certificate IV in Mental Health to gain an understanding of what my son is going through. I was also taken off the Carer's allowance about 2 years ago as my son's case manager at the time deemed him as independent. Unfortunately my son is not 100% independent and I am constantly helping him financially and having to prompt him with personal care and drive him to and from appointments etc. I feel that I have been overlooked by services and have not received the support that I'm entitled to. Does anyone out there have any suggestions?

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28 May 2012

Slimski replied:

Hi Rowena: Sounds like a pretty ghastly chain of events, but like you are pulling through. I respect your positive outlook, and hope you find a job in Mental Health soon.

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16 October 2012

jan whitton replied:

I can so relate, BUT, for your sake you MUST loose the word "entitled to", or noone will help you...Perhaps, not received the support I have needed?
You want their help so you need them onside.. Good luck..

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10 December 2012

Joan replied:

It's so hard to get the help you need. I've been battling the system for over 30 years and despite all the money the government throws at the Disability Sector not much seems to get through to where its needed. I really feel for you Rowena.
I don't have any suggestions to help you I'm sorry, we really are on our own in coping with our adult children.
All you get is feel good buzz words if you are lucky!

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21 January 2013

rodaussie replied:

I'm the kind of person who never accept no as an answer. If someone tell me no I study the laws online and check my rights, so I can based on the law argue with someone. Normally works if I have the reason by the law.
About work I have just graduated from Medtrain in You must Sign in or Register to post a comment.  

26 August 2013

tismeusee replied:

I sympathize with u Rowena, when I was caring for 3 family members all at once I got no help at all including housing ( and we had been on the list for 8 years. now there is just the three of us we have too much money coming in ( they don't count your out goings especially extras like disability stuff special shoes etc. Ive been a carer of family for near 30 years fighting and battling and all I have to show for it is no retirement , a prescription for anti depressants and visits to the psychologist ( we are only allowed 10 per year govt funded. god im so tired. im sure u are 2 unions wont help us , today tonight /a current affair don't want to know about carers. any idea how we can organise a nation wide carers strike, id love for us to take all those we care for into our local Mp's offices and walk away see wat they do then. PS mums health is deteriorating rapidly memory etc ( she just turned 80) don't know what I wll do wen she is gone. we need to do wat the Egyptians are doing a mass demonstration till it brings the govt down.
viva la revolution. I will leave now I have to go take my meds in order to cope with life

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24 April 2012

DonnaMichele says:

I just don't get it? Why is it that my family has to deal with a situation that has no solution? Mum has started a full time job while Dad is out of paid work. This makes Mum happy because she loves working and the chance to refresh her career after years of caring for their adolescent son. Dad is unhappy and feels isolated, just like Mum once felt. Dad wants a job, and soon gets one. Now Mum has the stress of deciding what her future is once again. Dad is happy but who will look after their son. A group home hasn't been an option; he's very dependent and often ill. We are both professionals and we both love our family but we can't win whatever we decide. I just don't know what to do. Its not like this for most other families.

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28 May 2012

Slimski replied:

Hi Donna: It sounds very complicated and I hope it sorts itself out soon.

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9 October 2012

Care Actually replied:

Hi DonnaMichele. Clearly I am not fully aware of your circumstances or that of your son/brother. You said you 'don't get it' but in saying that and posting your story here, you probably are 'getting it'. (More appropriately getting belted over the head with 'it'!!). As a carer and also coming from a business and customer service background I do not accept lightly the barriers that have and still are constantly thrown at me by my 'help'. Ideally your caree would be cared for at home with funded support and you and your family would pursue work, school and keep this just between you and I A SOCIAL LIFE. This is in an ideal world and you have clearly requested this without success. Your model might be a mix of work at home/at office. Test the water with the social life and build on it. I am a no-one who has achieved what I have suggested to you by a lot of determination. We carers are easy marks due to our stress levels and frustrations. I was able to challenge that perception and move forward. Happy to be of more help based on your specifics via this forum if you wish. Cheers

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10 December 2012

Joan replied:

Donna/Michele - I have what I have been told is a "good package" of funding for my son at present, and he goes out with support workers 4 days a week. I am not able to work though, he isn't gone enough hours for me to get to work and do an eight hour shift and get home again. And if I did get work I don't think I'd cope with the added stress anyway. By the time I get him ready and out the door I'm already a wreck!
My way of handling it has been to move to acreage in the country and try and live a more stress free life with my animals and gardens to relax me.
I've found I just have to accept the "disabled" life and stop trying to have a "normal" life.
The "stress levels and frustrations" Care Actually talks about have just about done me in.

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24 April 2012

Kylie says:

i care for my 79 yr old father in law that has had a stoke,cancer, radiation, dementia; I found him today weeing in his bedroom, how do i handle this as he had no idea he was doing wrong. I got angry at first which i feel terrible at, but he had no idea please can anybody help me with this situation?

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28 May 2012

Toni replied:

Kylie you are human. First reaction would be shock and anger. So please don't beat yourself up about your feelings. I am dealing with similar things....what we need are some experts on this forum to help answer our questions. So I can only suggest, talk to your doctor about you and the person you care for.

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27 June 2012

ryn replied:

Hi I have been dealing with this for approx 3 months now with my mother who has alzheimers and is just gone into the last stage. She used the bedroom, will sit on the bed as if it was the toilet, also the bath tub anywhere really and makes such a mess, . The only way i can keep it under some sort off control has been to lock all the bedroom doors, bathroom, laundry etc.. And leave the toilet door open wide so she can see it, but most off all i always have to have 1 eye on her, and ask her every now and then if she would like to go to the toilet, or just take her to the toilet and see if she will go. Once they get to this stage it really is a full time job. I have just about given up my whole life to just take care of her and dad. Good luck. It is really had. And stressful.

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12 March 2014

steve replied:

just a suggestion, bring the toilet to her, a bed pan and frame in the room might help, I care for my mother and a 21 year old with severe ADHD also a family member who has had three strokes so I understand about giving up your life, try to get some respite care through your local council is a start, I am looking into this now as I have decided after years of caring I need to have a break and so do you. don't feel guilty about it you deserve it and need it.

good luck we do care about you

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24 April 2012

Annemarie007 says:

Hello,

I have been caring for my Mother now for nearly 3 years in my own home.

When she came out of hospital, she was given 3 months to live in August 2009, but due to my diligent care for her, she has survived until now.

The reason I am writing this letter is because we have recently moved from Perth, WA to Jabiru, NT( 3 hours east of Darwin) as my Husband changed employment.

Jabiru just recently shut down their community aged care programme and now it is running from the Darwin office.

I was told that I can only receive a Caps package in Jabiru, but as my Mother needs high care, I feel that this package would be not able to cater for her needs.

I had the opportunity to put her in a nursing home, but after having her in there for respite for 1 month, she deteriorated rapidly due to the lack of one on one care that she needs.

I am willing to look after her for how ever longer she may live.

The problem is my Mother really needs a EACH D package to assist me in looking after her.

I have read about Consumer Directed packages that would help me immensely as I could hire someone in Jabiru to help me with the extra hours that she needs.

I only get 110 dollars a fortnight for looking after my Mother full-time and I feel that the Federal Government does not really give a damn.

I am writing to you to find out how I can get one of these packages, even if some how it was controlled from your end.

Kind Regards

Annemarie Hird

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27 June 2012

ryn replied:

Before you can get any sort of decent package you have to get your mum ACAT tested, with should be able to be done through the darwin hospital, and from there you should be able to get more information for the next step. I have just been through all that for my mum, but no one would give me any package except Caps until she was ACAT tested. Since then i have been able to get each d package and more,,. Good luck

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28 May 2012

Toni says:

It amazes me how diverse carers lives, backgrounds and situations are. Read someone else's story and it can make your life seem like 'we shouldn't be complaining'. After a difficult incident tonight, I searched the Internet to find information on his to cope. I felt desperate. My own blood pressure must be sky high from the stress and worry. I can't seem to find support that I need. Coming from a regional area, there are no support groups...and perhaps I would not have the time to meet anyway. A net forum would be great. Please can we get some experts answering some of our questions. I think it would help generate more discussion on this site...which would lead to more usage. Also could be fun to have some humour cartoons, jokes or funny stories. After all, sometimes the situations are so difficult, laughing can lift the situation and normalize things.

Who am I? Married, 4 children, full time professional, attending uni completing a second degree, volunteer life saver and since 1993 been carer for a special friend. My friends mum died but before she did, she asked for me to care for her son. Now our friend is 69 years old, lives with us. He has cerebral palsy, autism, high blood pressure, diabetes, incontinence, depression, paranoia, OCD and recently psaroisis. ( we have to apply cream to his body twice a day). I am not a nurse...so some of this stuff is damn hard. For my friends dignity too. We do laugh a lot. He's like the rainman (fascinating). Problem is that I am becoming increasingly exhausted. My husband I are having trouble with when and how to place him in permanent care. While he is rated as needing high care, we can only get 3 showers per week. Not enough with incontinence. Both my husband and I have to work as we have mortgage and supporting 4 kids at university. Most of the time we can cope. My husband I seem to work well together in this way. But when our friend does things like eat a whole box of cornstarch, so he doesn't soil himself...and then suffers adverse affects. No reasoning seems to work. We are frustrated and the situation seems hopeless. We just need someone to talk to about weird stuff. I have so many funny but agonizing stories. Anyway doctors are great...but often it's just...here is another pill. We are up to 18 pills a day. It's a worry.

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16 October 2012

jan whitton replied:

Hi, Where are you Toni?

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28 May 2012

Slimski says:

Hi Annemarie: Hang in there and I hope you get your package soon.

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7 June 2012

jo says:

I have a Son Who has A typical Autism, On a minor scale. I live 45km from my closest doctor, and 2 hrs from a major town with any kind of specialists. Since having him diagnosed at 4 just before starting school, I have been offered no help whatsoever from anyone, Except a specialist once who has since partially retired due to his wife becoming Ill. I wanted to get my sons eye sight checked as the first time he was 4, before school, He wouldn't speak, wouldn't make any eye contact, and wouldn't even move his head in any acknowledgement. So for me to get his eyes checked, i can only do it, if a doctor states that there is a problem with his eyes, other then that no one will help me. I couldn't get early intervention as he started school and once in school, They told me they couldn't help him. The system "rural" is just that... remote and not helpful, I dont know where to go, who to ask for help, and i myself am on a waiting list for an anterial cervical decompression & fusion, this year, then once recovered from that, i have lower back surgery, what he wants to do there is something im not sure of yet, I also have a husband who is an amputee in a wheelchair and he is quite self sufficient but still i help him with a fair few things, I just dont know how he is going to cope, with our 4 kids, 1 autistic, maintaining house, while i am 8 hrs away, and out of action for 6-12 weeks. Does anyone know where i can go, who i can talk to. I lost my job due to the medication i was taking for pain, and i dont believe anyone will hire me again following surgery as i'd become a liability... :/ Thanks for letting me share, I dont have many if any one to really talk to. :(

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25 June 2012

at a loss replied:

It is sad to see so many problems every one is experiencing. My heart goes out to you all. I was feeling bad about my situation till I read this forum, and now well, I almost feel lucky by comparison. I am 39, have a teenage son, and an adult daughter. My mother was diagnosed with cancer several years ago, and my father is an alcoholic. I was caring for them both as best as I could, helping them out every day at home and going to all mum's awful radiation treatments and preparing her food and helping her eat and use her stomach tube. Meanwhile dad was utterly useless, drunk all the time, vomiting in his sleep, soiling himself all the time and crippled with ataxia from muscle wastage from the alcohol.
I stopped work when I found out mum had cancer, and I didn't mind, I would have done anything for her. Sadly she lost her fight with cancer just over 12 months ago. My father was hospitalised and detoxed shortly before then, and though he hasn't had a drink since then, the road to recovery is a long one. Being elderly too, he is incapable of looking after himself, so when mum died I gave up my house and my son and I moved here to live with him and I became officially his carer.
I have a sister who lives ten minutes away, we rarely see her because she "can't handle it", so I have little or no support from her. Dad has suffered from depression for most of his life, and can't cope without medication to get through even the slightest thing these days. We recently had to get him taken off valium, as he had (in place of the grog) become addicted to it, and was taking more and more of it.
He is fragile, cranky, rude and unpleasant - and that's when he's in a good mood. He refuses to go into care, even for a dew days as a respite for myself and my son. He says we should feel free to go away ourselves if we want - but of course, he knows he can't be left alone, because he can't look after himself. We have care in the form showers three times a week (he won't do more, despite suffering urinary incontinence) and that's about it. He is chronically emphysemic but won't stop smoking, and suffers from alcohol induced dementia in the form of poor concentration and virtually no short term memory.
They say we carers make sacrifices, and we do, and because we do actually care about our loved ones. As awful as he is, I hate to see my dad sad and fragile, and I know I will never see the man he used to be again. SO who is it I am actually looking after, sometimes I am not sure.
Tonight I'm reaching out because I discovered dad had set fire to one of the rubbish baskets with a cigarette. He was in the room with it and hadn't even noticed the room was full of really thick smoke and that the basket was burning. And I realised, really realised, this isn't going to get any easier, it's all downhill from here.
Anyway. Everything I've read tonight tells me at least that while we might feel like it, none of us are alone. Thanks for that.

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25 June 2012

Ali says:

My request must seem pathetic after reading all the above stories!!
My husband has MS, is only just mobile, with help from a cane. I'm trying to find some respite for myself, so I can visit my daughter in NZ who is having a baby soon. how do you get help for your loved one , keep his dignity & get a break for yourself?? Finding it difficult to find respite services in rural north coast NSW...any ideas?? Cheers Ali.
PS Believe anything is possible, if we try!!

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26 June 2012

at a loss replied:

Dear Ali, that's not pathetic at all. If you are unable to get full respite, would he manage with a combination of services ie meals on wheels/ day respite from an aged care service/ help of a friend or neighbour? Or can your GP organise an ability assessment and referral to a relevant service? Your life too is precious, and your daughter and your grandchild. I hope you can find a solution.

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28 August 2012

StevenC replied:

You can contact any government services listed here:
http://www.ncahs.nsw.gov.au/support/index.php?pageid=859&siteid=189

They should help.

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25 June 2012

Emma says:

I am the partner of someone with bipolar disorder. He is generally quite well, but is now having his 7th manic episode in 8 years. Each one lasts for 3 months or more, and during that time he is impulsive, aggressive, violent, and completely disconnected from reality. Of course, he is always sacked, and to complete the financial struggle, usually sells all the possessions he can fit into his car to take to cash converters - TV, VCR, mobile phone, laptop, etc, to buy drugs (although when he is well, does not have a drug habit, and is a law-abiding citien). We have never been offered support, financial, emotional or otherwise, in all this time. Are their services we can access when we need it most? I feel I am close to breaking point.

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4 December 2012

Harleysmum replied:

Hi Emma. I want to give you a big hug as I can certainly empathise with your situation. My husband also has Bipolar disorder. Fortunately (?) he has Bipolar 1, which sees him having regular emotional swings and depressive episodes, however they are not as bad or as long as those with Bipolar 2. I am a 'giver and carer' by nature so that comes easily to me. What I struggle with, though, is that we have financial commitments that were made when he was well enough to work fulltime and bring in a very significant wage. I work in a very well paying job but now that he has had to reduce his work hours and take a position of employment that is lower paying than what he used to do, we find it extremely difficult making ends meet and have come perilously close to not being able to make our mortgage payments and pay our monthly bills. We do not live ostentatiously, nor do we have a large, modern home, but the mortgage still remains to be paid. Less joint income, added costs of medication, specialist appointments, and counsellor sessions all pile up on top of the existing debts. And ... we get no financial support because I am considered to earn too much! No consideration is given to the fact that we are in a financial situation that we were comfortable with prior to him becoming 'disabled' by his illness, but which now threatens to cripple us and turn our life upside down. I am his CARER! If I left him, he would likley suicide, or at the least fall in a heap on the ground and be unable to work at all - resulting in him having to go onto a disability pension /possibly into care / and certainly into government provided housing. But I love him without question and would never do that to him, or to US. But where is the recognition for what we are going through and some level of financial support for our situation and how we are handling it? We are in our 50's and have both worked fulltime most of our lives, so we have certainly contributed a large chunk in taxes.
I also struggle to remain strong and not have a breakdown; it is certainly not easy.

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9 August 2012

molly2 says:

Hello, I guess I just need to write what I feel at the moment. I am a single woman and I have my 82 yr old mother living with me and I also look after an uncle who is 85, but lives on his own. On Friday he was found in the street all confused I spent all the afternoon in the hospital with him but managed to get some help in looking after him. When I got home my mother was all angry with me because I spent the afternoon looking after my uncle, which she feels he doesn't deserve. Yes, he is hard to handle and just because she refuses to have anything to do with him, I still feel obliged to look after him as no one wants to have anything to do with him. I was going to take my mother away for a couple of days but now have to put things on hold until I get my uncle settled. I think that is why she is angry at me because I am putting him first and once again she has to wait. Thank you for letting me write my bit sometimes it just helps.

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23 April 2013

maria replied:

My mother is 82 years as well and has just gone full time into a nursing home, her choice, but she would turn nasty every time I had to look after someone apart from her to the point where I had to put her into emergency respite, she liked one on one attention, and my youngest daughter just had an operation. you are entitled to a certain amount of respite whether they like it or not,

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28 August 2012

StevenC says:

I'm 20 years old in Sydney NSW.
I care for my ill mother whom has Huntingtons Disease. I've been caring for her ever since I dropped out of school in year 10.

Over the past few months however, the stress of the caring role has built up.
I sit here, thinking that my life has no meaning anymore.
It only started this way over the past year or two however.
I mean, I used to enjoy life, enjoy wondering what the future held for myself and everyone else.
Though now, I don't want to know, as the only possibilities running through my mind are ones that don't end well.

Why not end it here? Why not opt out before fate kicks in and kills me when I begin to actually enjoy my life?
Suicide wasn't ever an option, up until now. I never liked the idea of people taking their lives when they
had so much to live for. Though now I've realised why they did it. I know what possessed their mind to take their own
lives.

You might guess fear, cowardice or anything around the sorts. Though it's not, it's whatever they made it to be.
People have the power to quit a race or competition anytime they want to. They have the option to quit their job and quit school if they wanted too. Those are the things that people should worry about, not when someone wants to quit their life.
I've realised that if someone actually wanted to kill themselves, then they must have had a very good reason.

People frown and pour shame on those who have committed suicide, though why? Why not let a person choose the way they
leave this life and enter the next? Sure, it may be a selfish act upon others, though you couldn't imagine the damage
that living is doing to the person who wants to opt out. The constant feeling that noone understands you and noone will ever understand what you're going through.

Sure, there may actually be 1 person in the world who understands exactly what I'm going through, though that doesn't mean
that every counsellor, psychiatrist and doctor are going to understand what's running through my mind.
I've turned to alcohol now and then to subdue and calm my mind out of the thoughts of suicide.
Though the effects of alcohol only last so long, and I'm way past the point of self preservation.

So what do I do? Do I come clean to my family? <- I already have.
Do I notify a doctor so they can stuff me on meds? <- Don't think so.
Do I opt out? <- It's the only unlocked door I see.

But then you ask, why haven't I done so already? There must be something keeping me alive.
I've thought around for a long time, what keeps me alive today. It's the feeling of being loved and involved.
I am involved in every single one of my relatives lives. Yes, I've made some if not alot of mistakes in the past, though I've tried to make up for those mistakes. How could I leave them in a position where they thought they were helpless?
How could I leave my brother and my mother in a position where they wish I had have just given life a chance.

so I'm going to try and better my life. I'm going to seek the help I believe I need.
I may not like the idea of getting better and coping, though it's the only way to move forward.
I don't want to leap into a dark abyss, with an unknowingly fate awaiting me, I want to try and get better. Not just better for myself, though better for my family and friends. I want to try and live my life the best to my ability and enjoyment.

I want to show them that I can be better than what I've displayed. I can grab hold of my future and steer it where I want.
Sure, I could be working at McDonalds with a low payrate for the next few years, though that's better than sitting at home doing nothing all day. It's not exactly that I do nothing, I care for my mother 24 hours a day, preparing her meals, washing her clothes, cleaning up the house and her room. Though I could be doing so much more in life, and I'm going to.

I didn't post this to take a side. I posted this to hopefully help those out there who still feel like I do today.
You may have given up hope in life, though don't give up hope in yourself. Just because life has handed you the worst cards you could ever imagine, doesn't make you any lesser of a great person. I still don't know what the future will hold for me.
I don't know what awaits me after I take this leap of faith into the world. Though I keep my chin up, hoping that it will be better than what i've been dealt so far.

I urge you to take this leap, try and confront your problems rather than opt'ing out of them.
Seek help if you need it, ask your friends and family for support. Don't give up, believe you can win this race.
Good luck.

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16 October 2012

GregDingo replied:

Hi Steven, I'm caring for my wife who has HD also and yes I know what a hard road it is. If you haven't already found it there is a Website called HD Australia that has a Forum that may give you some assistance / advice on how to deal with some of your problems.

Mate just remember, we (the carers and sufferers) are the real "Champions" not the overpaid egotistic sportsnuts!

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10 September 2012

Katrina says:

I have been caring for my Step Father for the last 4 years when my mother passed away, She died in my arms struggling to breathe because she had asthma and emphysema.
I have been struggling with the guilt of her death since she died. My brother just says to get over it and I have tried but every night I relive it because my Father is doing the same thing, getting on his ventilator machine and gasping for breath.
Im 38, when I was 30 I was in a relationship which broke down after I injured my back at work riding a race horse, I didnt recieve much of a payout and went through all the back rehab and work rehab and then I was put on diability support. I started to do some internet studies to keep me occupied. Then my mother and father started getting really sick from asthma and emphysema so that started taking up a lot of time trying to help my parents and keep my problems under control.

This last year has been agonizing for me, I see my dad slowly dying and I have become isolated since caring for him I think about suicide because just seeing dad slowly waste away is terrible and at 38 not married and no kids it seems so hopeless for my future.

I have a sister and 2 brothers. The last few months my younger brother and his wife have been helping me when they can. I spoke to my sister inlaw about how depressed I have been and contemplated suicide (Which I have spoke to my doctor about and he has been helping me). But a week ago I started having a sense of urgency about dad, he had 1 day in hospital because of his struglling to breathe and 2 night doctor visits and early the other morning he called to me the same way as mum did the night she passed away. I called the ambulance and he was admitted to emergency. When I was taken in to see him the nurse was warning me not to panic when I see him as he was unconscious and had the machine breathing for him, the doctor came over and said he could go either way and did I know what his wishes were if his heart stopped. I didn't know so I asked if I could call my family and they took me to a private room and called my sister up telling her what the doctor said. An hour later my sister comes in and I start crying and she asked me why was I crying, then started yelling at me saying all I wanted was attention and I felt I couldn't get her to understand that Dad was in hospital not me.

I am a total mess now. Mentally I don't know what to think. Dad will probably come home and I will have to do the same things as I have been doing, changing his depends, helping him shower and get dressed ect. I feel I can't even talk to my family about any of this. They hardly come to see him and I lie to him so he doesn't feel like they are neglecting him.
The future seems hopeless and bleak for me, I can't ask anyone to share my life while caring for my father, and I have become isolated because since mum dying in my arms I have panic attacks around a lot of people.

I don't know what to do, I'm such a mess and have no family support.

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12 September 2012

StevenC replied:

You cannot blame yourself for the unfortunate events that occured to your mother. I haven't been in your position nor would I ever want to go through it.

38 isn't that old, you know. It's not too late to seek help, whether you find it difficult or not. I know how hard it is to tell others what you're feeling, though unless they know about it, they won't be able to help you. The first thing you need to do, is to admit that you need to help yourself.

You shouldn't be struggling with this on your own. You should look into getting some fortnightly or monthly respite for yourself, so you have some time to yourself. Even try and get a few hours respite, just so you can try and get a referral for a therapist or psychologist.
Only people who have cared for another person, know what the stress can build up to lead to. This could include suicidal tendencies, depression or even aggression. Though we have to learn to ignore these feelings, to be a better person not only for ourselves, though for those who we love and love us back.

I've recently sought help for my own depression and suicidal tendencies. At first, I was a bit worried to tell someone how I felt, though after I had told him how I felt, I felt as if a weight had been lifted off of my chest.

They describe depression as a big black dog, sitting on your chest. When you try and get up in the mornings, the dog is holding you down, telling you not to bother to get up and live your life. Don't let that dog control you, tell yourself it will get better from here. I can't guarantee it will be an easy path, though I can guarantee it will be the best path for you.

Good luck.

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3 October 2012

Lbarry says:

I became a carer to my beautiful daughter Ashlyn-rose she was diagnosed with Prader-willi sydrome a few weeks after her birth I was 19 years old when I had her .. Through out my pregnancy I felt something was not right I was very worried I couldnt feel her move much I was scared the doctors then picked up something was wrong, my little girl was losing to much weight and fast I was then rushed in for a emergency c-section new years eve and there she was my little miracle only weighing 2lb 13oz 6 weeks premeature the doctors then told me my daughter will never be normal.. My world was crushed :( but I mean what is normal? Soo doctors were clueless to think what could Ashlyn have and why so fragile and such low muscle tone.. So they done some genetic testing and wow we finally had a diagnosis Pws at first it was a relief and a few days later it hit me my daughter requires special needs I was scared spent many nights thinking about my daughters future and thinking how will I cope my daughter was still in special care at this time she spent 3 months there It was hard having to deal with Ashlyn being in hospital and not at home with mummy and daddy I spent so much time worrying and crying I then became depressed post natal as they say, by this point I was very very scared I knew my way of thinking was not right I then contacted the doctors and got help.. My daughter was being tube fed for 10 months of her life and was on home oxygen for 6 months.. we fly to Brisbane every 3month to have sleep studies done and see specialist at the Pws clinic no it hasn't been easy and sure has its ups and down but wouldn't have my life any other way I love being a carer /mummy to the most precious little girl :) Ashlyn is a healthy almost 2year old a very determined lil girl and doing so well :)

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9 October 2012

Judith Collins says:

A sense of ilsolation in one's own fear, trials and tribulations crops up from time to time. Nine years ago my husband was given 3m to 18 months to live. He has pulled through numerous life-threatening bouts of illhealth. In 2011 I lost my beloved father-in-law. His death has leaft a whole in my life. A sense of emptiness. And with this, I feel less able to cope with the challenges of life and the fear of losing my husband.
I took on the care of my 87year olf mother-in-law. Insulin dependant diabetic with mild dementia.
Life has no personal space. No brightness. Very little laughter. Every mal is governed by special diets. Sometime I just want to breakout and have a hamburger. Though, I have neever been a junk food eater. To supplement the cvost of living, I grow all of our vegetables, fruit herbs and spices. It gives me breathing space and a sense of fulfilment in the daily chores of caring. Up extra early. Off to bed when everyone is medicated and tucked in for the night. Only to be woekn at 2am because one or the other has had a toileting accident. Washing floors and cleaning toilets when you are half asleep is challenging.
It's been years since I've wandered through a shopping centre.
In the past I have looked at respite services but never taken them up. I don't wish to free myself and escape from those I love so deeply and dearly.
It's all in the mind.
When one has been to hell and back countless times, a part of you stays there. Consequently when you climb out it takes very little negativity to send you back there.
Each day the love in my husband's eyes holds protects me from a pit of despair.

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16 October 2012

hoolibob says:

I am currently the carer for an elderly red parking pass disabled senior 70yo female. My mother suffers both rheumatoid & osteo arthritis, asthma & has blood pressure issues. HACC’s have determined that it is unsafe for her to bathe herself and assist with respite for me once day a week. I have applied for both Centrelink Allowance and Centrelink Payment because on a good week based over a twelve (12) week period I am in attendance at my mothers house for 27 hours a week assisting with personal care only. I can not acknowledge the at least 5 hours housework that includes picking up and disposing of dropped tissues, taking out filled bins, washing dishes, disinfecting floors because general cleaning is allowed to be included. I can not acknowledge as part of my 27 hours watching educational shows 5hrs per week with my mother like Letters & Numbers (selected because Alzheimer’s recommend word & number puzzles) because you are not to include as part of personal care watching television. I can not include taking and accompanying my mother shopping because she is unable to drive long distances and her parking pass will tell you walk very far.5 hours per week. 42 hrs per week all up on a good week. I can not include the fact I have assisted in converting mum’s bath to a shower because despite the fact there is supposed to be a grant to qualify you have to work out who covers you this took about 6weeks get it acknowledged to was needed this was done and then sit and wait for 6months for someone to come out and say what’s needed to be done then go from there.

Despite legislation that states that if I am unable to work due to the constraints of my caring abilities I have only been approved for Carer’s Allowance. I requested a review of the refusal of my Carers Payment now about 6 weeks ago. I note that two phone calls were made to me from Centrelink Toowoomba office to try and talk me out of this request. During the 2nd phone call I was told I basically had no chance of success at review because Centrelink were using as the basis of their approval process an internal social security memo from I think 1990’s that set the minimum criteria of qualification 58 hours personal care time a week and that care had to be provided 7 days a week. I pointed out to the 2nd caller that this could not be the case because the social security website allowed carers I think 66 days off a year. I pointed out to this 2nd officer (that was in possession of a letter detailing every single hour of my average days) that as both my mother and I reside in a minor remote town the chance of me being able to find an employer willing to pay me 4 hours the minimum for casuals for my hopefully free 2hours a day were zero and I demanded my right to have my application reviewed. I was advised that this would take about 4weeks. It is now about 6 weeks. During my phone call today to find out how my revue is progressing is met with a response that Human Resources are no longer bound to any time frame for revues and I am required to get another doctors report. The last doctor ticked all the boxes correctly and stated my mothers condition would not improve and stated as my mum has had her disabled parking pass for I think over 20 years I’m guessing he’s right. Amongst that bundle of forms was my mother giving permission for Centrelink to access any further information from the doctors or any other source to validate the claim.

Currently I am performing care to my mother 45hours and because I am on the newstart system expected to maintain 25hours voluntary work and 3hrs small business work 73 hours a week I keep hearing about the proposed National Disability scheme as an almost 50year being run into the ground physically and emotionally I hope its great because I will be using it a lot quicker than I thought I would need to thanks to Human Services.

I have received an invitation from Allora HACCs for their carers lunch for carers week. Will I be able to go with my schedule what do you think?

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25 October 2012

Kate replied:

I truly understand and hpe this gets resolved. It does seem incredibly unjust. all the best, Kate (another Carer)

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25 October 2012

Kate says:

I have been caring for my sister who is 50 and has Parkinsons Disease and Bi-Polar and my 82 year old mother who has a myriad of health problems. I am 48. It isn't easy but I want to do this because I can. I have grown up children and am widowed so it is easier for me to undertake this role than it is for my siblings who have partners and younger children.

I know there will come a time that I will be doing my sister and my mother a disservice by caring for them when they need proper medical around the clock care. At the moment, I can manage.

Sometimes it feels so very lonely and I find that all the attention is on those being cared for and the Carer becomes invisible.

I have been sliding into depression which I have to really watch out for. I have been trying to exercise and do as much as I can to keep a positive outlook. You have to really be strong sometimes.

I decided to come online looking for forums to join so that I could talk to others in similar situations.

My daughter has been encouraging me to do this so I can share the burden. She sent me a link today to an Australian blog which made me cry big happy tears. Someone out there gets this whole caring experience. I want to share the link with
other people as we are all in the same boat - one that can easily sink if we let it. You can click on it http://www.lillyslife.com/2012/10/more-lesson-in-humanity.html

Carers Australia needs to use blogs to spread the message to people who are not carers.

I hope I can find other support forums, do you know of any?

Kate



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2 January 2013

Persimone replied:

Dear Kate, I have just been doing the same thing, today looking for a forum of Carers, I to have been feeling invisible, our thoughtless neighbours tell me to my face they will keep things quiet when having a party, but it turns into an all night session, making the old house shake, disturbing my infirm mother and keeping the old man awake, parking blocking his driveway while they sleep it off, the police don't come although they tell you they will and the local council tells the rate payer, my 90year old father, to sort it out through the courts. When I get action it is when I have lost my temper and confronted people face to face and used their own foul language back at them. Nearly 60 and had breast cancer, now have paid help in the house, it was a struggle to get it but for the first time in 5years, I don't fell so tired. My job of caring becomes a burden when others interfere in our peace and quiet and property rights (including the door to door sales people targeting the elderly). I will follow up the link, thank you and good luck to you and God bless you.

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1 October 2013

Allana replied:

Hello Kate. Good on you for posting.It is a hard road to hoe.Very hard to feel free enough to share a burden. There are Facebook Pages. Try Googling Facebook and whatever area of caring you are involved in (if you are a member of Facebook).

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16 April 2013

Caring Sam says:

I was a carer of my father who has been fighting kidney and pancreas cancers over time without any financial assistance, and I care for two children with ASD. As most carers know at times life is frustrating, hard and we need to be committed. In most situations the carer role is not a choice given to us but a situation we just step up to the plate for. I love my family and without the counseling support of Carers Australia I don't think I would be half the person I am today. As a recipient of the counselling service i have to say thank you from the bottom of my heart and on behalf of all five children who have a sane mother.

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23 April 2013

CathJC says:

I cared for my ex-husband for 7.5 years after he was resuscitated (far too late) after heart failure. He suffered major generalised brain damage and lost capacity to attend to even the most minor daily tasks of living, but he was by no means a 'vegetable'. He could communicate, but it was hard for him to engage in conversations because his short term memory was virtually cactus, and his cognitive abilities were somewhat scrambled. He needed 24 hour care because he started wandering etc.

I had a 'choice' of looking after him at home (along with our 2 teenage sons) or putting him into a nursing home far away (no beds in a suitable high care facility close by)—but he was only 57. After much soul searching and heart ache I gave up my job/career in environmental management (not a big deal) and financial security (very big deal) and looked after him at home until I had run out of savings, and a place in an excellent nursing home near-by became available and found a job (offspring still requiring financial support). As his EPoA I was still responsible for all aspects of his care apart from daily life, and his emotional well-being which I did not neglect for nearly two long, and very hard, years. Never-the-less he became paranoid about being locked up, so I brought him home again. He eventually died of the same cause, and in the same way as he had 7.5 years earlier.

I received respite support under Commonwealth Government schemes for which I am most grateful and which allowed me to continue to have a somewhat separate life and pursue some tertiary studies. I was very aware that I would need new qualifications at some stage, post care.

My issue is that post-caring, carers seem to be forgotten. I suspect that others like myself will find themselves isolated, deskilled, middle-aged and wondering what to do with themselves, how to get into the workforce and earn a suitable, dignified living commensurate with abilities etc. No support is forthcoming from the authorities other than the 3 months of financial support, after which you become another dole recipient, and treated without much respect. There was no direction to any counselling services, no place to discuss the future or any help in establishing a future, no help in post-death financial advice. This is also a big need, and I am still not aware of any support specifically available for this unique set of circumstances.

I decided very early on to undertake further tertiary studies through a massive restructuring of my finances and relocation. I am self-funded, but live on the poverty line. I now use the counselling services of the particular uni I attend, but 18 months after my ex-partner's death I teeter on the brink much of the time. It would have been better if competent counselling had been offered immediately after his demise.

I think that post-caring requires a massive amount of attention—often the carer's prime social purpose in life has gone, and they face equally difficult adjustment issues in all aspects of life. I will also make this comment on the advocacy thread ...

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6 May 2013

Dee says:

hi. i have been caring for my 30yo partner for about a month now, only last week he was diagosed with stage 3 chronic osteoarthritis and is terrified of living the rest of his life as a cripple (his words). i help him out as best i can and try to keep his spirits up but its hard (he was a mechanic and he loved his work). i have my own physical problems with almost every joint in my body (no diagnoses, yet) and need someone to care for me from time to time (sometimes for a few hours, sometimes for weeks), i dont know how i can care for him when this happens as he usually cares for me. we live in a small regional town 3 hours away from any decent help, no family or friends that could help at all. im terrified

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15 July 2013

IzzyBella says:

Hello to everyone :). My fiancée has bi polar 2. This is all new to me as I only found out mid last year that he had bi polar and it wasn't from him, but a mutual friend on social media. I was hurt that he was too scared to tell me :( but his dr had been encouraging him to tell me for sometime. I always thought he was just a really moody person but knowing his diagnosis answers a lot of questions. Unfortunately it has taken its toll on me the last two weeks and I have been having anxiety/ panic attacks, like its all finally got too much for me. When he has a "manic moment" as I call them, they can last from anywhere between 12 hours to up to 4 days. He becomes so disconnected and won't talk to me, threatens suicide and out of nowhere says sorry and everything goes back to normals for him but it leaves me feeling confused and like the situation is unresolved. So I took myself to the Drs and she has referred me to a psychologist to help me with my anxiety and hopefully help me with some coping techniques during his manic moments.

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27 September 2013

Allana says:

Hello fellow carers.
I have been a carer for my mum who has dementia and I live on the Mornington Peninsula. I would be interested to hear from other carers who are in a similar situation who also live on the Mornington Peninsula.
Allana

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25 September 2015

Crippa replied:

Hi Alana
Just joined this site and going through posts. My Dad lives in Frankston and has Dementia so I travel from Whittlesea almost daily. Dementia is a very frustrating thing to deal with for both parties as Dad feels so stupid and hopeless. And to answer the same questions every 10 minutes Some days I get calls from Authorities saying Dada been found in a chemist attempting to pay rent which is deducted from his pension. There is very good support programmes and originations around the area. Anyway I know what your going through

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16 October 2013

Kel says:

Hi everyone...

I'm 31 and have been a carer for my Grandmother for the last 3 years or so since my grandfather passed away. I kind of fell into the role of being her carer as I moved back to my home town due to a promotion with work (an hour or so away from where I live). Originally it was only supposed to be a "short term" stay, but now, 4 years later, I am still there.

I guess I am lucky that my caring role isn't 24/7 and I am able to work full time but in saying that, its still difficult when my friends, and potential partners, don't understand that I cant just dump everything to hang out with them. My friends also seem to think that I should just pack up and leave because the situation gets me down so much and I have effectively put my life on hold to do something that should be done by her children or a professional. It puts me in a difficult situation because I can't just pack up and leave her "incase something bad happens" and my mum/aunt aren't in a situation where they can come and take over her care.

I've discussed my concerns with my mum and it falls on deaf ears, with the constant response of "we will just have to see how she goes" or "well its her choice". Unfortunately, my grandma has no interest in going into a care situation so it looks like I will be stuck in this situation until something drastic happens. I don't want to get to the point where I completely resent having to be there, although at the moment its pretty bad.

Does anyone have any suggestions how I can get people to take my concerns seriously?

Thanks :)

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25 October 2013

alwaysthere says:

I don't think anyone truly understands what carers do - not just for those they care for but for the government too.
My son has severe multiple disabilities and is 23 but in the 23 years I have also cared forand raised my now 18 y.o granddaughter and her 2 siblings who are 11 & 4.
At the end of the day the government pays us just enough to care for the children - never enough to pay for the hours we spend with those whom have special needs and we get no recognition( other than failed carer programs free Sunday travel and the companion card). There is no overtime or penalty rates for all the times we lose sleep or all the hours night after night we might have to spend tending to our special ones, there are no rostered days off or annual leave - no accrued long service leave even though there are some out there who have done this for 15 or more years. We have no savings and no hope of superannuation. We look forward to the knowledge that our only legacy may well be that when we can't look after ourselves anymore or our charges that someone in our own families will suffer the same fate as us - left with nothing to fall back on and more responsibility than any person should know.
From the things I have read here it is all done out of love, the care and commitment that each and every person that cares for another has or is providing is a gift of the heart.
Personally, I want more for what I do - not necessarily cash but I, as a grandparent should not have to pay for my grand children's schooling, we should get twice yearly grants for clothing shoes etc. Yes - we can get assistance for agencies, but it is not their responsibility it is that of the government who save hundreds of thousands of dollars a years by paying us less than 5,000 a year in centrelink payments.
These children often need more support with emotional issues or psychological help yet they are only eligible for the standard 6 sessions and if you fight a bit harder you can get another 6 or so.
We need more because at the end of the day we do the hard yards the longest hours and make a non accepted career out of caring for others without any of the benefits that should come with the work we do.

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28 November 2013

ElizabethL says:

Hi, my name is Elizabeth, and the following is my story. I am trying to find other carers of cancer patients who meet and discuss their Journey, fears, successes, their hope and their difficulties. Feeling so isolated and alone, stressed and exhausted. We have been on the cancer Journey for 9 years with my husband, also my sister until her passing, and i have had bowel cancer. My husbands journey has been prostate, lung, brain, now lung and bone cancer. We are currently going through intensive radiation, also chemo. I have been ill with a virus and am really struggling to get over it, keep going. This time round, my husband has been given a prognosis of Christmas, but all is so uncertain. My 21 year old son an i have been going through this Journey on our own, without support from Family, friends, and the burden, stress and effects on all three of us have taken quite a toll. Due to brain surgery and radiation damage, my husbands brain function has been affected, and sometimes it feels like we are living on a rollercoaster built on the sides of an active volcano. My social life is non existent, and i am just feel isolated with nowhere to turn. There are so many wonderful groups, support for cancer patients, but i am struggling to find groups for carers to share their experience, strength and hope. A lovely lady at radiation suggested i contact Carers Australia as you might have some suggestions, and be able to give me some direction, or where i can find others in similar situation for support and time out. Can anyone suggest some help for me to find a release, belonging and respite time out? I would be so very grateful and appreciative. My story is not dramatic or tragic, but i know i am struggling and need some help assistance. Thank you for listening. Elizabeth

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29 November 2013

Carers Australia says:

Hi Elizabeth,

Thanks for sharing your story on our website.

There is help available, and a range of peer support groups throughout the country.

If you call our Carer Supports and Services number on 1800 242 636, you will be put through to your local state or territory Carers Association, who will be able to put you in touch with carer supports and services in your local area.

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2 December 2013

Anne S says:

You Carers represent all that is best in human beings! It's a shit life sometimes isn't it? And look how you keep on going - awesome!
My eldest daughter suffered a severe brain injury 13 years ago when she was 17. Even now she is 'independent' and compo paid out but really has no normal life lots of problems. This year my younger daughter also suffers severe brain injury from car accident in Victoria. Have to wait another year for outcome, but I already know how hard her life is going to be. She has already lost her health, work and social lives. To add insult to injury are the ignorant comments and lack of empathy from most of her 'friends' or your below average idiot who represents how dumb our society is when it comes to genuine support.
Also just put my dad into care but my estranged sisters helped do most of that cos I'm just not coping with anything, so heartbroken over my girls.
Also marriage going down tube as alcoholic husband isn't coping with our daughters change in personality. Poor man - but I have to put the daughter first. I'm running out of compassion myself!
I hear you all and I wish you just a little more peace and love.
I want to start an Internet forum for brain injured people and carers, but i think i will need to include any Carers from any walk of life as we all just need little release and understanding.
Keep well everyone, Anne

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23 January 2014

Jim Grey says:



hi all you amazing and beautiful people out their.
I wish I could help you all, even one of you but I cant think straight.
I am 25 I have been caring for six years, before that i was a volunteer saint john ambulance officer (youngest ever adult member)
a deacon (youngest ever) and I have a unique level of education in that I have only been enrolled in a school for two years of my
life but can out perform most students leaving year 12 now. i won the state maths competition in year eight and i have provided security
for many victims of crime informing and giving them the confidence to bring numerous criminals to justice. Those criminals will not be
incarcerated for ever and they know with out me they would be free. I am now caring for a lady with
sever anxiety disorders and complex PTSD as well as many allergies.
i am sitting i a library crying as i write this knowing it will do me or her little good, except at least someone may hear.
along the way of helping those with out the means to help themselves i have been accused of being a pedophile, a thief, a murderer, a druggie
and of course ignorant and selfish. usually by those who are guilty of those exact actions,
such as my biological father, a state school teacher now serving six years for pedophilia.
i cant see any way that the past can be compensated for, all i am aiming for is to live free of it and have a happy, safe, quiet life with the right to
refuse contact with any one who is a threat to those simple things such as a roof over my head and food in my stomach because with out these things
i cant help any one and if i cant do that i don't want to exist.

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23 January 2014

sez says:

I have a 8yr old son with a brain disorder he was born with I have done everything alone I don't get any time to myself and when I try to get respite it is always unavailable or there is no funding left. I don't use respite unless I have to and only been aloud 8 nights a year I am lucky to use 3 of them. my son goes everywhere with me 24/7 unless at school I find this very unfair as I see others get respite every weekend and why am I only getting 8 a year.I don't ask for no ones help or charity all I ask for is a little time to myself once in awhile and can never get it.Looking after my son is a full time thing as he don't walk talk eat he fully depends on me 24/7

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7 February 2014

yellow01 says:

I am a mum of 4 children and I am a carer to my 16 and 13 year old boys. I recently had a really bad experience with a carer in September last year. I have been caring for my two children without any help since September last year having to wait for new funding it has been a struggle to say the least, not only not having the respite care but also not knowing if I could trust another carer in the home.. I have since reported the incident to the police also had a visit from an advocacy agency yesterday.. I feel very let down by the agency that employed this women who was set out to ease the burden for the family, however did nothing but cause anxiety, mental and physical harm towards our family. After this terrible experience we finally have a new carer from a different agency things are going well but I will never feel totally comfortable or never totally trust any one again...Feel totally let down especially after the agency made nothing but excuses for this carer..

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10 February 2014

DanzTronic says:

I am currently a primary carer for my 80 year old mother, she suffers major incontinence issues, she has to wear pull on pants but a major issue that we have is leakage, the doctors have basically told her that there is very little that they can do. It's starting to cause a rift between us as I do everything for her as her carer and I ask that she simply tries to control it but she can't. Does anyone have any ideas how to deal with major incontinence issues as I am at my wits end :(

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4 March 2014

Allie replied:

My mother had incontinence problems connected to her MS. After years of dealing the best she could she finally was given a supra-pubic catheter. You might find that more appropriate than dealing with 'leakage' all the time. See your GP to get a referral to a urologist. Good luck.

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23 May 2016

Carm replied:

Hi Danz, my mother is also incontinent and I found the pull ups leak so I started using the adult nappies (Tena) and they work a treat no more leaks and the maximum absorbency the better. Just make sure you put it on properly so they fit.

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8 August 2014

MHcarerStudy says:

Do you have a family member or close friend who has a mental illness? Have you been involved in mental health services in supporting your friend or relative?

We want to hear from people who have had contact with mental health services through supporting or caring for a relative or friend. We want to learn about any positive or negative experience you have had and how it may have impacted your thoughts about mental illness and willingness to access mental health services in the future.

This involves a short questionnaire that should take 15-20 minutes. The questionnaire will ask you questions about yourself, your family member or friend, your experience with mental health services, your opinions about mental illness in general and your own wellbeing.

If you are interested in participating and want more information, please click the link below.
https://psych.newcastle.edu.au/survey/index.php?sid=49448&lang=en

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3 September 2014

ERM 2013 says:

Hi fellow carers.

My wife is tragically Terminally ill with Cancer and decided after just over a years worth of treatment in the UK to return to her homeland of Australia to say goodbye to her loved ones as her prognosis was for a very short period.
We landed in Australia in November 2013.
By the grace of god my wife is still alive and doing well considering but understandably struggling with life now in a wheelchair, She is only 31 years old so has gone from a very active life to one now with many limitations.

We are looking for advise please? as we are having big problems in me (her husband) being recognized as her carer, simply because I am a UK citizen and not an Australian resident! It is so frustrating and stressful because what little savings we had has now gone and I can not work because my wife needs constant care and wants me to take care of her.
I have been told I need to wait 2 years before I can claim carer payment! what a joke! her prognosis is nowhere near that long. Ironically I will gain residency if my wife dies.
There is nothing in legislation that covers such a situation so we do not know what to do :-(
Any advise would be greatly appreciated.

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1 October 2014

lavender 44 says:

Hi I have 3 kids who are all chronically ill with FMS/CFS. One has a heart condition as well. Too complicate things further the boys both have Aspergers Syndrome and ADHD. My oldest boy has asthma and blind in one eye (from an accident) as well.
They all suffer from depression and anxiety.
As a result of caring for them all I have burnout. I was diagnosed about 4 years ago. I am getting better very slowly but there are days I can't get out of bed still.
My oldest has completed a Masters in Social Work. Took her 8 years but she got there. My oldest son is on DSP and cannot work and my youngest goes to school for 2 hours a day due to his pain and fatigue.
Its been very tough but I try to keep positive. Some days not so much.I worry about the future and how they all are going to get on in life.
We don't have anyone to help us. My husband and I have been trying to handle everything on our own. We have found our families are not that interested in helping and we live far away from them too.
My husband is self employed which financially has been hard but he's been able to help me out as he can swap his hours around as needed.
Has anyone else have more than one person to care for?

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2 February 2015

Chloe says:

Hello all
I have been reading your stories and realised how many lovely people are out there taking care of family and friends.
I am 23 happily married with 3 children. I have been caring for my husband who is bipolar 2. He suffers mood swings and tends to buy things ALL the time. He also has anxiety and OCD. Checking things takes up a lot of his time (and mine). It has been incredibly difficult finding good doctors to see him. I am constantly nagging him (he says) but I am reminding him. Sometimes it's too remember not to be selfish (bipolar causes that) and sometimes it's wash your hair, eat something damn it!
I listen to his rants and rages and I hold him when he cries. I am with him for better or worse until the day we leave this world.
My mother is 65 and has been diagnosed with osteoarthritis. She struggles daily with everyday tasks. Getting dressed, going to the toilet, showering, cleaning the house. I have come to the realisation that she needs someone to live with her and care for her. I want to help her but I am worried. I worry about how my husband with cope (change is not easy for him). I worry about my children, do they get enough time with me?... I worry about myself. How am I ever going to work if I can't even go study? I would love to study a Bachelor of Midwifery as it is my passion. I loved having my children and I would love to help other women with their birth experiences. Alas it is only a dream right now...
I hope all of the lovely people on here are getting the support they need and I commend you all. You are amazing!

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14 September 2015

MsDent says:

Hi... I think that my carer and husband is having trouble caring for me. He's essentially stopped most of the time because I bring him down... I feel angry, but I also understand. He is the sort who would not bother getting help at all. I don't know what to do and I hate being in this situation where I am having real troubles but he is doing other things and couldn't be bothered with me. I think he is also tired because this has gone on for years. I am also a Carer for our autistic son 'J' who gets very angry at times, but who is awesome otherwise, I've helped teach J to talk and to understand the world better,among other things, and have a lot of similarities with him, but feel overwhelmed a lot and very alone. I don't always react the way I should eg panicking, getting very anxious, and at times even angry.

My husband has a lot on his plate... But given that he has a lot of 'self time' that he uses on projects of his own, and plays computers a lot, I wish he'd care more. It feels like he has given up. And it makes me want to give up too. I haven't. I'm trying. But I feel so alone and unwanted and stupid because he doesn't care anymore and won't bother even saying hello to me during the day even if I am having a terrible day, in fact especially if I'm having a bad or depressed day.

I also did not agree to have children and only did because my husband locked himself in his room and cried until I gave in (as always)
I can't leave. There's no one else to look after the kids. Or me. And I do love my husband and I do know that between our son J, our other daughter, and my own problems, it's a lot for one guy to deal with. But he made this bed.

What can I do? Can I get someone to call him and offer help, assistance, or an understanding ear? Can I complain to some authority in the hope that this will get him to realise what he is doing isn't ok for himself or us? (as he just scowls if I try and talk to him)

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14 September 2015

MsDent replied:

I don't think he knows what to do and I don't think he realised that getting me to agree to things I didn't want was wrong at all. He's "just a bloke". He has stayed with us and true to us and hasn't run off or abused any of us, doesn't swear, drink, smoke, or yell. So basically a normal human with warts and all like any other.

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2 November 2015

Roxburgh says:

I looked after my mother who had Alzheimer's and other health problems for 11 years. I had also been working casually for 4 years. About 16 months ago I decided to place her in a nursing home and go back to full time work. My mother wasn't happy where she was and I wasn't happy with the care she was receiving. So I decided to bring her back home again after 7 months and gave up my full time position. I kept my casual position which was working for a nursing agency but as my mother's needs had become high care I was unable to work at all. After becoming her full time carer again for 10 months she passed away 2 months ago. I have a health issue myself which occurred about 7 months ago and am now unable to return to work. My carer payment is going to be cut off in two weeks and I have put in a claim for Sickness Allowance. I also thought I would lodge a claim for Income Protection which is insurance I have through my super fund if I am unable to work due to illness or injury. Problem is that because I haven't worked now for 12 months they say they won't pay my claim as I wasn't working at the time. So, what I am saying is, that being a carer and keeping my mother home has draw backs. 1) You don't get any money paid into your super fund while on carer payment and 2) if you need to return to work but are unable to due to illness, Income Protection Insurance won't accept your claim as you weren't working at the time you became unfit for work. So, now I am faced with having to live on Newstart/ Sickness Allowance of $520 per fortnight for an unknown amount of time.
As carer's we are saving the government money by keeping our disabled and frail aged people at home but much to our detriment. We miss out by have little or no money going into our super funds as well as the problem I am now faced with even though I have been paying my premium the whole time I haven't been able to work. These issues need to be addressed and if caring for someone full time with a high level of needs is not classed as work, then what is it called. Caring for someone is probably the hardest job anyone will ever do, especially if they have high care needs and/or Dementia which is mentally and physically demanding.
Caring for a person and being on Caring Payment should be classed as employment as we are being paid to stay home and look after someone. Legislation needs to be changed to address these issues. It's not like we are being paid to sit at home and do nothing!

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11 January 2016

Silver says:

Hi All,
Wow!! I've just stumbled across this forum whilst searching google for some guide/advice/tips to the guilt I feel about not wanting to continue being a Carer for my 74 year old mother who has MCI dimentia but whom is still very active and mobile however after 10 years with the last 3 being the hardest I feel like throwing in the towel but I have to say now after all this reading I'm flabbergastered and in awe by all of the above Carers stories. It makes me feel as a person even more selfish and mean for having these thoughts and feelings of resentment, anger, loneliness, feeling down, frustration and no positive thoughts of my future because I just want to be free (I'm 49) as Mum could be like this for a long time to come but I think I am just burnt out as my role is nowhere near as demanding and sad as most of the stories that I've read even though we're all doing it 24/7 and some with a little respite but basically alone. You should be extremely proud of your dedication and selflessness. I've always believed if we're not put on this earth to help people, what are we here for? BUT, in saying this, self preservation/self care and a little self indulgence wouldn't go astray just to balance our well being. I've attempted to do this with home care, council day outings, dimentia respite, residential respite all to no avail which is extremely frustrating and exhausting because mum tried it all but digs her heels in more and says ' I want to stay in my own home' so what's a daughter to do? Smoke more, slob out more, drink more and eat more but alas I'm onto this and making amends. Thanks for reading and I look forward to any coping tips. Regards Silver

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23 May 2016

lauren says:

hi im new to this, so just looking for any help please.
my name is lauren, im 26 years old. i am a carer for my mum, she is 55 who has two brain tumours as well as many other disabilities which happened from a car accident in 2002. she initially refused chemo which i understood her reasons, the tumours are now too aggressive for surgery so its basically a waiting game. she has been in an out of hospital with just this over the past year and shes slowly declining. she hallucinates, stares blankly for hours, refuses to take any of her medication, doesnt take care of her hygiene. its just me n my brother looking after her but i mentally can not do it anymore. i have been her carer for 15 years, because its the daughters duty. i now have a 4 year old son who is a handful with lots of energy so i cant have him around my mum who snaps easily an wants silence. my brother works full time in a very demanding job so he helps when he can. i have asked the rdns and mercy paliative care what i can do but theyve basically said i have to deal with it because shes too young to go into a nursing home facility and too stable for paliative care. i dont want to seem like a nasty person or that i dont care, its just im tired and i have very little patience. i dont want to get to the point of yelling at my mum who doesnt no where she is most of the time, but i also dont want to take my anger out on my son just because hes around. im lost and need help but dont know what else to do.

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