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.
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?
Feeling a bit like Tweek from the 2016 South Park where President Garrison is threatening North Korea and cupcakes don’t solve the problem but I’m here making cupcakes (or muffins or whatever I throw together) feeding myself, feeding others and just trying to get through the days and weeks.
So, the Treasurer says the budget isn’t finalised, while preparing the ground for cuts to the NDIS, while disabled people just want to be supported to live. We want access to pensions that cover the rent and health care and food. We want governments and financiers to stop with the narrative of rorts, and perhaps approve the supports we know we need and know would make disabled lives worth living. We want some certainty.
I want aged and disabled care plans determined by qualified people, not an algorithm. I want the NDIS to stop fighting people who are just trying to survive. I want to know that my mother will be able to go back home after her stroke and get more than maybe one shower a week. I want to know that while I’m probably going to be my mother’s main carer, I’ll have support and equipment and extra paid supports as needed to make that a sustainable an safe undertaking for us all.
I want us to not suck up to genocidal presidents. I want to stop reading that it’s been x hours since a ceasefire started in an article about a town being bombed in Southern Lebanon.
I want a lot. Or not very much if you look at it as just wanting a rich country to support its people to live happy, healthy and dignified lives. That involves housing and welfare for all, adequate and safe disability and aged care. That involves being able to go to the GP when I need to and afford the medications I need to sustain my mental health.
I’m very much still running day by day. There’s equipment trials and a family meeting for mum on Friday. There’s helping my sister out so she can take care of her own mental health beyond what the NDIS will support her and her kids to. There’s walks with my dog and dinner and snuggles with my partner to sustain me. There’s a new Hello Kitty Island Adventure expansion pack and a mochi cafe to run. It’s about balance.
In the featured image for this post you will see Maxi looking pleased with himself because he got to tag along for a 2km drive to the end of the road with his head hanging out the window, past the cows in paddocks and the construction for the new twin servos off the M1, to get petrol before the prices jumped on Tuesday with the news about conflict continuing in the Middle East. Obviously, Maxi didn’t care about the oil prices, but I was pleased to say I got $50 of fuel into my tank at $1.65 before it went up 25c overnight at that particular station. The ABC was reporting that households could see an extra $14 a week needing to go to petrol over the coming months, which to some isn’t much, to some a lot, and to me who’s still making 3 80+km round trips a week to see mum in hospital (she’s moved to the rehab hospital which is AWESOME) it matters that I was able to work it so I put petrol in Tuesday instead of tomorrow when my pension goes in.
I got my first “weird hot cross buns” of the year yesterday at my bread collection – Carrot Cake Inspired ones from Aldi. I microwaved one for 15 seconds and it was awesome! Little bits of cream cheese icing inside and nice and soft and spiced.
Been perfecting my “getting a car park at the hospital” strats. Yesterday I let all the cars go off ahead of me and waited where I was since there was noone behind me needing to go. And I lucked out a Mum and her twin boys came out of the elevator and indicated they were going to their car just in front of me. Score! Sadly, I was charged the advertised parking price for pensioners of $6.80 for the day rather than the $5.60 they have been charging me. Swings and roundabouts I guess.
Mum’s been getting assessed and set up with physio, occupational therapy and speech pathology goals and activities to get her moving again. It’s exhausting for her but she’s hopefully going to make good gains. I’m still aiming to go in Monday, Wednesday and Fridays to see her and support however I can. Yesterday we got outside for a little walk around the grounds. It was super humid! No wonder there’s mould in so many of the local hospitals :/ Nothing is drying anywhere!
That said, I’m attempting to get the sheets and towels washed today, whether they dry or not is another story!
