Friends, Family & Carers Forum

[chompy78]

Our sister is mentially disabled. Not quite sure the official name, but it's like a type of autism. One minute she may be fine, and able to function fine for weeks or even months. Then it's a disaster with police, health professionals and etc being involved, normally over a range of made up stuff. Any careers at that time run for the hills, or at most last 2-3 of these epidsodes.

Now a well meaning person from a hospital has put in urgent hearing for guardianship. Currently my dad organises that type of care for her, but is being accused of being unsuitable.

My siblings and I don't know what to do. None of us will accept her in our homes, as she's destroyed at least one marriage, and we refuse to have that happen to our own family. Plus the physical risk she can pose to our kids. One of us want to look at being appointed a guardian, but we've no idea what to do. She really needs a carer, which ranges from part time to full time depending on her current mood.

Where to go for help and advice. I've started trawling the internet for help groups, but they all seem orientated to those with disabilities that are more constant, rather than periodic and traumatic.

[Outlanderali]

Hi @chompy78,

Welcome to the forums!!

Unfortunately the story you tell is all too familiar, and there will be plenty of carers on the forums that have experienced similar issues that you and your family has experienced with your sister. 

It might be a good idea to look into an Adult Guardian, who can be the "on paper" guardian for your sisters welfare, but not necessarily the carer for her, as in have her at their house.

I am sure there will be plenty of carers on here to offer advice on the subject. 

Thanks again, and welcome

Outlanderali 

[Mosaic]

Hi @chompy78

Welcome to the Forums. I am sure many of the members here can relate to aspects of your story. You raise an important point about boundaries for you and your family. It is common to experience a tension between wanting to offer unconditonal support for your loved one, yet recnognising when you feel ill-equipped or under resourced, and giving respect to your own limitations. 

I wonder have you been in touch with ARAFMI Australia? They are an organisation dedicated to supporting carers of people with mental illness. Autism Spectrum Disorder (ASD) is more considered a developemental disorder rather than a mental illness. However, mental illness can be periodic and traumatic, so in this sense ARAFMI might may be more relevant for the type of carers support you're looking for. Also, ASD organisations such as Amaze , Autism Awareness or Autism Spectrum Australia may also be able to offer some relevant information and family support options for you. Not sure whether you have come across them before?

Look forward to hearing more of your story. Take care.

[chompy78]

Thanks for the reply. It's really hard to even understand what a Guardian does, and any responsibilies they have, compared to a carer. Eg anything involving the police seems to need to have the guardian attend rather than the carer.

[ivana]

Hi @chompy78,

Its unfortunate that in this country everything is put into "silos" and diagnosises.

Eg : Support groups might be diagnosis specific instead of just general support groups for carers of all illness types who need support.

The end effect of this "siloing" is that often some families feel they cant get support due to their loved one not fitting a certain diagnosis.

The reality is that often people can have a variety of symptoms ranging from depression-autism-dementia-schizoaffective etc.

Hopefully you can find a carers support group that will be accepting and supporting towards you regardless of whether your sisters symptoms dont quite fit the "diagnostic mould" or whether they have flare ups instead of being a constant.

Have you tried the Carersnsw directory linked below?:

https://www.carersnsw.org.au/groups/

For which reason does the hospital worker think your dad is unsuitable to be a carer if you don't mind the question?

Is it due to your sisters continuing illness flareups or some other reason?

It would seem unfair if it was due to the illness flareups as this seems to be putting the blame "at the feet" of your dad instead of the health care workers/system.