Navigating the system can be a nightmare, complicated by the interface between the roles of the Victorian and Federal systems, made more complicated by the Victorian zoning system and Fed aged care, Medicare and dealing with dementia aged care.
On the economic front, the Victorian system is geared to keeping people out of hospitals. The Fed system is geared to keeping old people at home and out of residential aged care . But they aren’t in sync enough.
We found that the at home palliative care is geared to a life expectancy of 3 months ( end of life) where a lot of help kicks in. On the other hand the hospital palliative specialists broadly operate on around 12 months, with judgments made on level of at home care needed according to the patient. The relationship between the two is not easy and the hospital specialist has been frustrated at the unwillingness of the at home palliative provider deliver earlier and their apparent priority to discharge people ( based on assessments of different visiting and Telehealth nurses of the stage the patient has reached).
We found the GP and the hospital specialist to have a closer relationship, notwithstanding that one is Vic and the other Fed. They have both pushed the at home palliative provider to deliver based on actual needs rather than their arbitrary formula ( and judgments ) of 3 months. Those providers have the authority to get the ambulance to bypass emergency and to get the patient straight to a ward ( if beds are available).
For us it has been a psychological and time management drain on the family. We are taking up our concerns with our Fed MP because of a view that the Fed system for palliative aged care needs adapting and to be more aligned with the Vic aged palliative care arrangements.
ADD
As to the Vic system, we need a hospice set up as the alternative to hospitals and aged care residences, something like Claire Holland House in the ACT. Or go back to the basic local hospitals which Kennett abolished,
It’s strange how the most complicated systems seem to apply to the most vulnerable people.
Rare serious post from me.
In January this year, my family lost my uncle. He was a lifelong bachelor — quiet, independent, always kept to himself — and had retired early at 55. It was a cold-turkey retirement: one day working, the next day done. No transition, no gradual handover, no post-retirement check-ins.
What none of us knew at the time was how deeply he was struggling after he left work. His mental health declined rapidly in those months, and he developed a serious drinking problem in secret. We only found out about it after he passed away. When we got the autopsy results, the coroner told us it was as if he’d crammed a decade’s worth of binge drinking into six months. It was devastating to hear.
This has made me wonder: should employers be doing more to support the mental health of workers after they retire? Especially for people who are single, or who don’t have a strong support system outside of work — should there be some kind of structured mental health check-in or follow-up?
We talk a lot about mental health while people are working (and rightly so), but retirement — particularly abrupt or early retirement — can be an enormous mental adjustment, and I’m not sure our current systems acknowledge that enough.
Q. What is the name of the list you would make for someone who has dementia? Like a reminder list when they wake up. You are in a safe place, the people here are here to look after you etc…
Are you after an affirmation list (you are safe, the people are carers etc) or a ‘to do’ list (brush you teeth, put T-shirt on etc)?
Affirmation! That’s the word 
Basically my grandfather is at the point where he can’t go home again. He lives across the road to a shopping centre and basically is endlessly there, cause he comes home for 5 minutes, then goes again thinking he hasn’t been yet that day. He’ll do this from morning till night. He’s in hospital now cause he was in a car accident while he was walking through the car park.
So being in hospital now for a week he doesn’t remember how he got there, or why he’s there, and thinks we are all punishing him as we aren’t allowing him to go home. I’m thinking this affirmation list might be a good idea to calm him down.
Every night I go to bed I think to myself that I dont really care if I wake up the next day or not. Only the thought of my sons and wife keep me going.
I have been unwell for over 12 months. I have had almost every test imaginable with no significant findings.
In that time I have also had kidney stones surgically removed, hernia surgery and I recently ruptured my achilles which may require surgery next week.
I now have pretty bad anxiety as a result of not knowing what is wrong with me. (The ill feeling came before the anxiety started).
My wife was medically retired because of injury a few years ago and hasnt been able to return to any employment as her mum now lives with us and has dementia so my wife is her fulltime carer but isnt eligible for carer’s allowance due to my income from 2 jobs.
My 2 lads are the greatest things on earth but I know my suffering has dragged them down which breaks my heart.
I have no one that I feel I can talk to apart from my wife who already has too much on her plate.
I cry for no reason, too often.
I hurt.
I am lost.
I will get up tomorrow. I have no intentions of not.
Sorry for the purge.
Sorry to hear that Mex. I really hope you’ve also discussed your mental health with your GP as well. It really sounds like you need that extra help.
Your not alone. There are many strategies that will help with anxiety that aren’t only drug related. Feel free to search my posts in this thread.
Big hugs for you Mex. Know that life really is worth living. You’ve just got to find that balance again.
Thank you.
I have read your posts before and my heart goes out to you.
Without sounding trite, I know there are many worse off than me. Im just not sure how to manage myself and my obligations to my family sometimes. I didnt mean to sound suicidal ( if it came across that way) because Im not.
I have no intentions of giving up and believe it will turn. Its just a crappy road at the moment.
I have spoken to a psych, 2 actually, but dont really find what I need there and I struggle to open up as a result. I will keep searching for the right one.
Thank you again.
Talk to us then! I’m sure it felt good just to put it all in writing. It helped me a lot.
Finish with a FARK CARLTON too. 
How you feeling this week @Mex ?
Thanks for checking in…I really appreciate it
Not much change but each day is a new chance
@Glu how are you
That is a good way to look at things.
Don’t be.
Thanks for checking HG.
Mum is still in hospital. 15 days now and counting. She’s well enough that the doctors want to move her on and release the bed, but the social workers have been involved enough that they can’t release her to go back home, and there is nowhere else lined up for her yet, though we’re still working on getting a place in the aged care home closest to Mum & Dad’s house. She’s still very tired and sleeps most of most days, but she has more awake periods where she confidently tells everyone there’s nothing wrong with her. Fortunately, she has little concept of time now, and is just as likely to think she’s only been there for a day at times. So at least she isn’t physically in pain, or mentally distressed, yet.
Dad has been struggling emotionally over the last 2 weeks. I’ve seen my Dad cry once in my life. When his Dad died unexpectedly from a heart attack 40 years ago. So it’s a new thing seeing Dad emotional.
I’ve taken long service leave, and taking time away with my family. We’ve planned this time for over 2 years now, and it was the only time we could get away with our adult kids. I feel guilty for not being with my parents now. I have been doing a lot of the heavy lifting over the last 5 months, and it was touch and go whether we could go or not. In some ways, it is a relief for me that Mum isn’t able to return home, as that burden would be too much for my sister, who has surgery shortly, and my brother, who is now doing most of the work needed - mainly trying to organise a high care aged care placing, and now, trying to figure out if Dad will also take up residence at the same facility. My brother has done less until now, but is now under similar pressure to what I was until recently. With his own burdens outside of Mum & Dad.
So I’m under less pressure, but still involved at a distance, and concerned and guilty about the situation I’ve passed on to my siblings, and about how both of them are doing as well. I question whether leaving it to them was a poor decision on my behalf. Honestly, I pretty badly needed a break, but I don’t know if I feel better or worse for having taken it.
Anyhow, I appreciate you checking in.
Where are you located Mex? There’s a good naturopath in my area that’s helped a lot of people. It may be a long shot but the way you’re feeling could be gut/food intolerance related? Could be worth a go.
Thank you
Im in Brisbane north western suburbs