I thought I’d hit a wall a week ago, but then I hit a bigger harder one. Because I only slowed down a little but kept going. Burnt myself on the coffee machine, walked of with part of an order, that sorta thing.
But mum got moved to the local private hospital on Monday afternoon. After my emails to the minister et al, after calling it what it was – discrimination – for her not taking her or others because they need hoisting. Not at the stage at going into whether this means all people who need the sort of care mum needs now would be rejected, but they appeased me. For now.
So we’re eating the yummy private hospital food and trying to stay sane, since there’s not really anything to DO there, but exist and be cared for. I’ve not yet asked if the fees still kick in after 35 days but we’ve got a word on a possible place local in “a couple of weeks” so hopefully we’re out by September 11 and don’t have to find out. They don’t cost nearly as much as the places on the northern beaches, but there’s still $550k deposits and ongoing fees for private beds here too.
Even though I spend an awful lot of time looking at health and welfare stuff, I have A LOT to learn about the stuff that affects older people (generally 65 years + in Australia) outside of my brief grasp of the Aged Pension and how it differs from DSP.
This week’s learnings were about the 35-day rule in NSW public hospitals for “Nursing Home Type Patients“. A “Nursing home type patient is when you’re finished needing the hospital treatment for whatever you came in with (and also anything else that came up along the way) and you’re basically just receiving the level of care a car home would give – this include regular medications if they don’t need adjusting, toileting and shower and other personal care support, and accommodation and meals. After 35 days at this level of care they can start charging “at a rate equivalent to 85% of the aged pension” for care and board.
If you get sick in that time (eg you have another stroke or you get a UTI or a hospital acquired infection) you can moved back to being a regular patient and not charged, but the clock doesn’t reset. Once you’re deemed back in maintenance mode they start charging again.
This is meant to encourage people to get their wiggle on in getting their Nan into an aged care placement. Which might be a nice idea to the bean counters, but families have very little influence on getting those placements once they paperwork is all done. Which are usually done within a month if there’s social work support to do so.
There are no aged care beds anywhere, so charging a daily fee isn’t going to get Grandma into care sooner, it’s just another stressor on the family regardless of whether they can “Afford” it or not. There’s no bed for fee paying residents or fully commonwealth supported ones. If anything this fee should be on the federal government if it’s to incentivise a placement.
After 35 in a hospital after you're deemed well enough for discharge but are stuck because you're waiting for an aged care placement NSW health starts billing you an amount equiv to 85% of the pension for board and care. It can be waived for hardship but yeah should be billed to the feds.
The 85% is of the single pension rate, which is going to be $1237.70 a fortnight from September 20, or $933 for a member of a couple. It can be waived for “financial stress” which would anyone relying on the pension for their income, and certainly screwing over the partner of the person stuck in hospital.
The other indexation rates for September 20 are here.
With the scaremongering news that rents are looking to go up 30%, the $2 a week rent assistance increases are, as always, laughable. My rent will increase in December, waiting to see by how much. Last year it was $50/week with the signing of another 12 month lease.
And with the increasing unemployment rate, more are waiting on their extra $8.10 a week and for it to have already disappeared into the nether.
So, mum’s in purgatory, but a slightly quieter one after moving to a smaller hospital, but not the private one that rejected other the day they said she was moving and was packed up and transport on the way, the one that at least two staff at the current hospital have said she should go to and a couple more expressed surprise at the rejection.
So we wait, drink lots of coffee, keep calling the same places just to see and I unfortunately am getting a new area of welfare and health to specialise in complaining about.
It’s August apparently.
If you like this post, have learned something from this or my blaterings on the socials, or just want to help me pay for coffee and petrol (the new hospital is just as far a drive but parking is less crap), my wishlists an paylinks are here.
Currently waiting for my new washing machine to arrive. But that’s cool, apparently we’re the next delivery and since they gave us a 3 hour window it’s been pretty easy for a Sunday morning.
Waiting for mum to get an aged care bed. Waiting for her to move to a different hospital to wait for that so she’s not in a depressing dungeon ward with old men dying across from her. The staff are lovely but she really needs to get out. She has a loaner wheelchair so we can take her into the fresh air each day for coffee and a break. Trying to not feel guilty for staying home today but also telling Dad to stay home and rest because he’s really not well and we’re now waiting for his Haematologist appointment on the 24th. His white blood cell count went up again since his last blood test. Mine are normal though. I did bloods last week and they’re all normal.
Waiting on Bruce’s colonoscopy. We’re been waiting 4 months, been told to expect 6. Waiting for mum’s wheelchair of her own. We were waiting for Dad to say okay to building a ramp to the house so mum can at least visit. But he’s said yes to that at least. Now to get him to okay us going to buy a wheelchair friendly mini van.
Mum had her first stroke six months ago tomorrow. She’s been between John hunter Hospital and the Rankin Park Rehab Centre since.
We’re at the stage of looking for nursing home placements. First reluctantly now more urgently. Mum’s waiting on the manual wheelchair from Enable NSW that the OT scripted as she can no longer walk, and she needs hoisting into that and two people to support her for transfers and care needs. Still hoping to convince mum to get the powerchair conversion for the chair after it comes so she can putter around at her leisure.
She’s currently back over at John Hunter due to some health complications and infections and to treat an embolism. But she’s still mentally mum – her speech and cognition are all but the same as “before” as is her humour, like the rest of us fatigue and stress is taking its toll on her psychologically, but we’re all still looking forward while trying to deal with all the things that are thrown at us.
I turned 44 last Wednesday. I got presents and ate my little treats.
I feel like I’ve had to grow up a lot the last six months. I love it and hate it but I’m proud of how I’ve been able to step up and handle this.
But I’d like the challenges to take a break soon please?
Ahh the Golden days of mummy blogging – or whatever it was us peripherical misfit non-mummy bloggers were doing at the times. Whatever it was it really was about the friends we made along the way, and one of them was Kim of Frog Ponds Rock, kinda a mummy figure to many of us, Mum to Veronica, and one of the first middle aged women I knew diagnosed with Autism (Think she was fifty at the time) with many more of the blogging crowd to follow. They’re in Tasmania, and I had the privilege to be picked up from the airport by Kim and visit her home and studio and visit Veronica at home – she was pregnant with her youngest who’s in highschool now. I was down for a speech pathology conference, it wasn’t a great time in my life but I remember those visits fondly. I was devastated when Veronica’s house burnt down, it was always a work in progress before that and I remember parts of it from my visit and ugh, why do bad things happen to good people? (Check your smoke alarms, it’s the reason the humans were able to get out at least).
This is an amazing tribute to Kim. I was sitting with my own mum who’s in the rehab hospital when I saw Veronica’s post that Kim had died that morning. Kim was 60. Mum’s 69 on Thursday and was in great health until the sudden brain bleed January 28, with another a few weeks later. She’s back in good health now, but is disabled by it, will probably have to use a wheelchair for the rest of her life, needs hoisting in and out of bed, is getting function back in her right hand – at least she’s left dominant right? But for someone who truly prefers to do things for herself it’s a huge adjustment, all the other stuff aside.
So mum and I were watching a gameshow, she was back in bed after a busy day at rehab – gym, arm exercises etc. I as scrolling my phone and the post seemed so sudden, because it was. Kim had been in hospital but was meant to be getting out that morning.
I know Veronica’s worries are now with her father – how will he cope with her suddenly gone, no matter how beautifully maddening Kim could be at times with her wonderful creativity and neurodivergence and just being a good soul. I worry the same for Dad. He’s been in crisis mode since the stroke, and hasn’t really come down from it. Still visiting every day. Still off work, but not ready to retire officially, even though age and his own health wise, let alone mum’s would make sense. He’s still overwhelmed about the prospect of renovating the house to get mum back but I think is more confronted by the idea of her going to a nursing home, either while that’s done or permanently. And I worry what would become of him then?
Mum keeps saying her first reaction to the rehab teach recommending aged care was that she’s not old. And she’s not. She’s also the healthy one, the one that looked after herself, did all the right things. And was there for everyone else. So being the one needing care is a big adjustment.
I still hope to get her home. But in the meantime, her wheelchair’s been approved (manual but she’s warming to the idea of getting the power adaptation) and we’ve been looking at vehicles to get her around in regardless of where she’s spending the night – the Voxy is one cool little option dad’s warming to with encouragement.
So, it’s all a big thing, but something I’m even more grateful for after Kim’s sudden passing. Grateful we’ve had the last four months no matter how hard they’ve been and that we’ll have whatever time is ahead. All mum can do is keep her blood pressure low (it was never high) and no take anything blood thinning to have to best chance of not having another bleed. But it may be sudden or, like I said to her, we might have another 20 years ahead of us and I want to get the house and equipment right if I’m going to be caring for her til I’m in MY sixties.
So, we take it as it comes. We enjoy the little things, eat the little cakes, look after our own health so we can all look after each other. Gp for my partner today, looking into some of his own health issues after years of ignoring them. I’ll see my own GP Friday for my scripts and will probably get the form for my annual bloodwork that hopefully still says that I many be fat but my numbers look good. Harassing my father to try to follow up things so he can care for mum – physio mostly since his own knees are not young and spritely any more, and trying to help my sister to where I can.
And of course Maxi. Maxi just has sensitive skin so it’s baths and creams and anti-allergy pills wrapped in cheese for him.
