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Two disabled son’s and a husband with Careers Burnout Depression

By 34904 - 13 March 2010 29

Hi, I want to get some information on how to go about petitioning for full time care for disabled children and a care center for carers with burnout.

My sister and her husband have three children two who are disabled, wheelchair bound and at 14 and 9 still need nappy changes and feeding / bathing / dressing etc.

My brother in-law who was a strong, beautiful, happy man has broken over the last 18 months. Four months ago he was put on suicide watch due to his depression over the boys and the demands placed on him. A few weeks later when he was with the boys for all of ten minutes he made a call to 000 saying “come get the boys or I will kill them”. The police came and this broken man a shell of his former self was placed in Woden Psych center with drug attics and mentally ill people far from what he was suffering.

Two days later without notice to my sister he was sent home to the very place he craved to be out of. His feelings of helplessness escalated with this sheer act of deceit by the people he cried out to to help him. He knew he was at the last straw calling the police as he felt humiliated but he knew he had no choice but to call 000 and thank god he did. But he didn’t get the help he so desperately needed. And neither did my sister and their children, they were now made to live in fear of their own father and husband. It was a disgrace and heart breaking for the rest of our family.

So during the school holidays (husband at home) my sister asked me to look after the older daughter and the 9 year old disabled child while the 14 year old was placed in a holiday thing for the disabled for the day. Her car was playing up when she dropped them off so I told her to go home and get her husbands car as he wasn’t allowed to drive anyway. She did and thank god she did, he didn’t expect her home until 7pm. She walked in to find he had cut is wrist, one nearly right through to other side.

It took me 5 mins to get to her house leaving the kids at my place. I pulled in behind the ambulance and went in to a disaster of every imaginable kind. A broken husband / Father, a shattered mother / wife, and a disabled boy smashing things rolling around on the floor with now idea that the two people who have kept him going for 14 years are now so destroyed both physically and mentally.

After very long surgery to repair the damage  he had done, now he and my sister faced the extra burden of his recovery which is going to take a very long time. They took him from hospital after a few weeks to Calvary Psych center and to date is there a month later. He has now gone from depression to manic (Bipolar) which is now another issue for my sister to deal with. He spent money they didn’t have and is doing things that are so out of character which is very hurtful to my sister.

My sister has not been able to work for a long time because she has had to look after the two boys, her daughter and her husband. Everyday is an appointment for one of them or all of them. My sister is my concern right now as I am so scared she will also burn out, how much more can she take.

Two weeks ago she had the youngest boy in for an operation (supposed to be two day stay) he got fevers and everything else and she was made to stay with him for a week. The eldest boy on the third day had a seizure in care and while she was at Woden with one they took her other son to Calvary. I had to stay with one at Woden while she went to Calvary with the other until they could transfer the eldest to Woden. The nurses put the boys in the same room and she had two now in hospital to deal with.

They plan to let her husband out next week and yet he is no better, he is just in a manic stage and people who are supposed to be the experts believe the over top confidence is a sign he is getting better. IT’S NOT TO ANYONE WHO KNOWS HIM.

My sister is in fear now of loosing their little 3 bedroom home they purchased before they had children. They have been together for 26 years and now the pressure of loving your kids and trying to do the right thing by them will tear them apart.

Carers need a place to get away and revive to survive and until you have looked after these disabled kids full time you have no idea how much they need a regular break.

There also has to be a care center to take the boys even if it was just every weekend to take the pressure off.

Yes their is minimal care offered but not enough and it was a little to late.

Can someone advise on what I can do to get these issues raised in government talks ASAP?

What’s Your opinion?


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29 Responses to
Two disabled son’s and a husband with Careers Burnout Depression
prhhcd 9:32 am 15 Mar 10

34904: what a terrible situation that you discribe. I wish I could offer more concrete advice then what I will offer. Contact Marymead, they have a program for this purpose especially. I don’t know what its called but a woman called Linda Henry runs it (or used to anyway). She’s lovely. Maybe she can offer some assistance in terms of respite care.

I wish your family all the best.

Pandy 10:37 pm 14 Mar 10

Well no I was not fishing for a response. Firstly, if this dad is so depressed with his life, is on suicide watch, what is the risk of harm that he could inflict upon himself and on others? For how long has this gone on; for how long in the 14 years has he had not the support from our society? Has anyone listended to him say “thats enough”? But no, according to you, he just needs a holiday and be told to “toughen up” and every thing will be all right.

I have experienced depression. I have people in the workplace deal with depression over the last two years unable to function. I have also experienced a family member have the indignity of having the cops turn-up to take his guns away because he was diagnosed with severe depression. So don’t you lecture me about depression and what can result from it. I think I know better than you were it can lead.

I think you expect that everyone who has a disabled child, is expected from that point onwards, to give up life as they know it, because it is the expected thing. Well 40-60 years ago, people did give up their kids to the the state.

Now I see parents in their 60’s who are still looking after their kids (saw it only a couple of weeks ago in fact). Why? Why can’t they expect to lead a normal life in their golden years? But many don’t want too. I know a woman in her early 50’s who has a younger sister in a state home. She does not visit her anylonger, nor does her father.

Thank God, I only had to muse over this question.

But I’ll leave you this parting point: If one knows that their kid is going to be born severly disabled, how many woman would have an abortion in a blink of the eye? Happens all of the time, especilly to women in their post 40’s getting pregnant. I wonder how many people once having the disbaled kid born, then have never truthfully said: “If only I had known”.

But you love your kid and good on you.

gimmeth 8:02 pm 14 Mar 10

I went away, I came back, I read Pandy’s input, I was stunned, I went away again, I came back again, decided it wasn’t worth it, I went away again, Now I am back and I can’t go away again without commenting.

Pandy, you are entitled to your opinion and i am truly and honestly glad you have not had to live the heartache and trauma described by the OP, and so I have to say you are a very very lucky person that you JUST DON’T GET IT. Good for you. I feel relief for anyone who doesn’t have the gut wrenching visceral response to such a genuinely distressing situation that other humans are experiencing.

That said, having challenging children is the version of “normal” family life that is dealt to some families. And those children are individuals who are loved and cherished by their extremely stretched parents. It’s simple: if the parent’s didn’t care for their youngsters then there would be far less stress and burnout.

To suggest that the answer is that the father just walk away, is simply irrational – if it were that simple he would have done it, and his attempt to permanently leave the situation (rather than walk away) was traumatic for everyone involved. I do not believe that there are many cases where children are truly better off without any contact with their parents.

Surely in a humane society there must be a better middle of the road solution where the family can remain intact, even if this means that some family members live in assisted accommodation or spend some time in respite/foster care to allow for the ongoing functionality of this family unit which is already giving so much more than some “kicks of the footy”.

And if all you were doing was fishing for a response, well congrats, you got one, and if you are actually as socially inept as you came across, well, that is okay too – so is my autistic boy and he is wonderful in his off the wall-ness!

Pandy 2:16 pm 14 Mar 10

I don’t have an answer. The State expects your child your responsibility.

I have wondered how paretns cope with severly disabled/intellectually retarded children. When I was a young boy I met children who had been abandoned and then had been lucky enough to be adopted. He was abandoned just because he had clubbed feet that were eventually operated upon. Otherwise he was mentally fine. He said to me he never wanted to meet his real parents.

However, I think, if it was me, I would have dumped severly disabled babies at the door of parliament and said “Here, you the State take care of them”. Mental and physical exhaustment like that related above that happened to me, would not be worth it to my life and happiness. Marriages break up over lesser events not related to this event. I don’t want to be a martyr for anyones sense of what is right. I would have wanted a normal life of kicking the footy around with the kids and then seeing them leaving the nest in their 20s. This will never happen to this family. Maybe the father just needs to walk away for the rest of his life.

Dazzlar 1:44 pm 14 Mar 10

So sorry to hear about this terrible situation.

I’ve nothing more to add except to suggest contacting a Social Worker at Centrelink. I hope that they are receiving the correct payments from there but the Social Worker should be able to check that out and also put them into contact with outside agencies that can help. Here is a link: http://www.centrelink.gov.au/internet/internet.nsf/services/social_worker.htm Over the phone counselling is available.

Also there is a scheme here in the ACT where visits to a Psychologist/Psychiatrist are supplemented via Medicare. The GP has to write a letter to the Psych and then money is refunded via Medicare as it is for any normal GP visit. You might also find that the Psych is willing to forego their fees in this situation.

Lastly, if the children are suffering from a particular condition, get in touch with the support group and they might have their own respite the parents can use.

Good luck and I hope things work out for this family.

Wraith 9:36 am 14 Mar 10

mr reason said :

First thing: remove the unnecessary (incorrect) apostrophe from the title.

Can you bugger off please, this is a real matter, and the poor OP is obviously going through a great deal of stress with their family, and that’s the best you can come up with, time to grow up.

To the OP, I have no help for you, all I can say is I feel for you, and hope this gets worked out.

Anna Key 8:03 am 14 Mar 10

mr reason said :

First thing: remove the unnecessary (incorrect) apostrophe from the title.

Perhaps you could have helpfully pointed out the extra ‘e’ in carers too. Then all their problems will be solved

I-filed 12:17 am 14 Mar 10

mr reason said :

First thing: remove the unnecessary (incorrect) apostrophe from the title.

-1000

housebound 11:52 pm 13 Mar 10

As the second post said, start at carers ACT. Your sister’s family will almost certainly qualify for respite care (which can be as simple as cleaning the house once a week to something much more involved), and they should use it. They’ll be able to put her in touch with the services she needs, although I would be pretty suprised if they weren’t already, even if only to a small extent.

The worst thing is that this is not an isolated story.

xray501 11:20 pm 13 Mar 10

Ignore the person calling himself Mr Reason, as he is also Mr Heartless.
That’s a sad story. And a lot of worry to bear. Best wishes.

justTme 9:58 pm 13 Mar 10

mr reason said :

First thing: remove the unnecessary (incorrect) apostrophe from the title.

How helpful and kind of you.

I second the comment about Hyson Green being a much better facility in comparison the the Calvary Psych centre. Having had family members in both, they are worlds apart – but of course it comes at a cost, which isn’t always feasible.

The support and response time of the Mental Health Crisis team can be appalling, and after dealing with a relative with issues like these, facing the crisis team can be very frustrating.

I hope you find some help for your brother in law, I really feel for you.

miz 8:35 pm 13 Mar 10

34904, this is a heartbreaking situation for all concerned. Gimmeth has set out some good options above.

I have a few comments too, which I hope will assist.

For respite care for families with disability needs – Dept of Housing Community Services website states this is provided by FABRIC (Family Based Respite Care Inc) Ph: (02) 6287 2870.

In relation to the father’s mental health – a member of my family has also experienced the difficulties convincing staff at PSU not to discharge. It is obviously almost impossible for keep someone on suicide watch in the community. Unfortunately, in my family’s experience, suicidal tendencies do not appear to count as sufficient reason to remain at the PSU (my family member was discharged despite the rest of the family begging them not to. He took his life shortly afterwards). This was a total shock for us, that suicide was not considered a reason to have a mental health bed.

Inappropriate discharge can also be compounded by the patient’s desperation to get out of the PSU even if this is not in their best interest – it means they will try to be compliant and appear ‘well’ (and sometimes the Privacy Act can work against the carers by preventing them from being fully informed about what has transpired between doctor and patient). I suggest asking for second and third opinions if they try to discharge and the carers and/or family do not believe this is in the patient’s best interest.

Essentially, PSU works OK if you have a mental health condition that is manageable with medication, and the patient is compliant and also able to identify when they need an adjustment of that medication. However, PSU seems to cope extremely badly with sudden onset situations. We felt badly let down by the mental health service, which we all thought would ‘be there’ if needed. Instead, ‘the system’ seemed to be forever wishing we were not there ‘bothering’ them. Further, what was provided was, well, callous and secretive. We were made to feel like nutters ourselves, for having the ‘audacity’ to want him to get decent mental health care.

I have heard Hyson Green (@ Calvary) is excellent but is not a secure unit, and is very expensive, so it may or may not be suitable.

Mental health services are similar to child disability services – all over the place, with each facility having its own criteria. This makes life very difficult for run-ragged, time-poor, stressed to the max carers. This family has multiple needs – which doubles the difficulties for the mother and other family members.

I suggest raising the idea of being able to contact ONE place and be allocated a family support person who can attend the family’s home in person and assist with negotiating the complexities of the system(s) – the parts you don’t even know exist until you need them, and have no idea where to go (and have no time to be calling numerous groups who then refer you on to another).

Meanwhile, your local MLA and/or DHCS are good places to start with awareness raising. I hope that Mum gets a rest soon, and that Dad and the kids are able to access appropriate care ASAP.

s-s-a 7:38 pm 13 Mar 10

I think the only thing they could reasonably do is to try and arrange regular fostering (not respite) for their children. Carers ACT *might* be able to help.

Short term, she needs to refuse to take her dependents in hospital home until suitable longer term arrangements have been set up.

I really feel for her, the scenario you described is is unnervingly like another family I know. Also I am dealing with a similar but rearranged combination of issues. I don’t have any answers. Carer Burnout sucks majorly but will unfortunately always play second fiddle to anyone else in the family with more immediate care needs.

On the issue of money, the husband may be able to access his super via an invalidity payout due to his mental health issues. Or they may be able to access some early release of preserved funds through APRA (from memory, to pay for medical/care costs or if their mortgage is in arrears or if they have been in receipt of Centrelink income support for more than 6m).

gimmeth 3:55 pm 13 Mar 10

Wow that is some tragedy. I don’t have any magic answers, but here are a few bits that may help. In My case I am the one with chronic psychiatric issues that plague me and my family and I also have a disabled son, so I have some direct experience of these organisations.

I found the carers association was very good with lots of advice and facilities to refer a family to. Support included subsidised housekeeping and respite care.

Life line http://www.lifeline.org.au 13 11 14, and beyond blue http://www.beyondblue.org.au 1300 22 46 36 are also great, with online resources and telephone support. There are services for both sufferer and carers/loved ones.

You may also be interested to know that federal legislation requires that the maximum waiting time a health fund can place on a person with a pre-existing mental health condition is 2 months. Not 12 as is the usual wait for pre-existing conditions. http://www.privatehealth.gov.au/information/howitworks/waitingperiods.htm
So While I know that in a family such as the one you describe private health insurance may be out of reach, but it may be worth a look at some of the cheaper hospital cover only products as in the ACT Hyson Green is a fantastic private psychiatric facility, and a two month wait my be doable.

Marymead also has helped out family members of mine with disabilities and has been very good indeed, And has psychologist as part of their multidisciplinary team. For free counselling for families in trouble contact the Richmond Fellowship (non religious despite the sound of the name)http://www.rfact.org.au/.

I really hope things get better for this family soon.

mr reason 3:51 pm 13 Mar 10

First thing: remove the unnecessary (incorrect) apostrophe from the title.

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