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.
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.
I rarely make cakes or banana bread, and generally make muffins since they’re easier to judge if they’re cooked, already portioned and yeah, just easier.
Today I made Banana Muffins since I got a lot of bananas free yesterday. I was going to put some coconut in, but I couldn’t find a hammer, so that can wait for another time.
I didn’t really use a recipe or fixed portions, but they have 3 bananas, 1.5 cups of sifted SR flour, some melted butter, 2 eggs, some brown sugar, cinnamon and some vanilla essence. Cooked for 20 mins @ 160 Fan forced.
Still going three times a week to support mum at the rehab hospital. Brought Maxi in again on the weekend to cheer people up, which is seemed to do. Petrol is crazy, isn’t it? Saw the first 91 for 264.9 today on the app! Just waiting for the diesel to tick over $3, have also seen a few stations around with only one kind of petrol left on sale and all the other numbers blacked out.
Last Thursday I was anxiously watching the petrol prices go up in Morisset as I was preparing to take my stepson to his Employment Plus appointment – that they cancelled just before we were about to leave.
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!
