My brain is very busy with analogy’s today, it’s either a good or a terrible day to blog. So, we will see how it goes. You probably want an analogy now? You can wait.
I present really well for someone who’s had a brain injury for fifty-two-years. My carers tell me this all the time, because we discuss that in person, people are oblivious to what’s going on behind the scenes. But, in reality what’s going on up “there” feels like a bag of rattlesnakes. Thats 1 (Analogy delivered!)
I wonder if people realise there are days up “there” is like having five people with ABI’s, five people with depression or anxiety and five people on the spectrum in a room. Shaken and stirred, rather like the rattle snakes in a bag, right? And I suggest, within a few hours the room above will look like some kind of mass casualty has occurred. Think blood, trauma. Mass casualties, I realise, for many this is going way too far. But I’m making a point.
Up “there!” in my brain, there is so much chaos. Just anarchy, and I know it’s happening. I just can’t stop it. It’s so busy I just try to get through the tasks as best as possible leaving as few people scathed as possible.
This is why people like me spend a lot of time self-isolating. It’s why we coped (apparently) better during the quarantining during Covid. It’s also, why we noticed how other people didn’t cope well during Covid. When I isolate too much, then when I do go out my brain is like “Oh my God! Look at all the thongs, the food, the people.
There are a people. What do you do? What are you peopling? Can I people with you? Let’s people together. Yes, we can.
Now, that is clearly an example. But we saw it a lot during the plague. Walking past chemists where I’d see a person behind the counter getting peopling, full blast by a customer out being around people for the first time in days. The staff members eyes flick out to notice if anybody out there that could save them. Is this even really happening? Am I the only one seeing this right now? Can somebody help me? And all of that is happening up there and on the outside, its Calm! Calm! Calm!
Everybody act calm and then, I think this is why I gift people treats a lot. It’s a reward, sure. But it’s my way of saying, you put up with my “Crazy!”
Later, I may stay away for a bit, so you miss me. Because you nipped at me and hurt my feelings. I try to bring a little funny, a little sass to everyone every day. But sometimes, others have too much owing on and it falls short. But this is why when I hand over a little love, I mean it.
So, I thought I should circle back to part of why 2024 was such a shit show. I started the year with a really good support coordinator. I thought no issues on the horizon so why not bring in a third carer agency to take the pressure off one of my other two, so I get some more variety with carers.
Since the start of Covid I was getting one carer for four shifts per week which I worked out quickly was three too many.
Having carers over the year you work out over time and pretty quickly who you mesh well with, who you can rely on and who you can be flexible, because sometimes it is me and my expectations. Can I work around different personalities, or should I not need too? When I asked if I could have less of this carer, I was told it was her or no one. I was also told they were recruiting. The number of times, I’ve been told they are recruiting in the last fifteen plus years, if I had a dollar for every time I’ve been told that I would be living in a house not an apartment.
Alas, my support coordinator No.1 for 2024, set me up with a new agency, we did the three-way zoom intro meet and greet thing. (Never done one of those before) Then I went to the countryside for about four days to help clear out my father’s house in late January. WHEN I RETURNED TO PULL THE TRIGGER ON THE NEW CARER, I WAS TOLD SHE HAD TAKEN EMPLOYMENT ELSEWHERE! Then, I was told they had a lack of carers in my area and would keep me on the books. You bet I was told they were recruiting in my area.
Just a FYI. It’s now a year later and I’ve not heard from them again. So, I digress, my really good support coordinator was promoted to Team Leader. It is the only progression for that position in a company, so I think it was my third in about five years I’d lost my Support Coordinator to being Team Leader. Although they always moved on, I gather soon after.
AND YES, IF I HAD A DOLLAR FOR EVERY TIME I’D BEEN TOLD THEY WERE RECRUITING MORE SUPPORT COORDINATORS ID HAVE A GOOD HANDFUL OF GOLD COINS.
The new support coordinator, in July we were already discussing and planning a request for a review of my NDIS funds.
Wondering if people are doing a shit job for me because they find my disability makes it hard to do a good job? Or is it because they think I don’t matter? Would they do a better job if it was for themselves? Or someone else? Or are they just doing it until they get something better?
It’s always hard to know if people do an ok kinda job because they need the money or they give a fuck.
It’s part of the downside to needing carers or having funding to have people do things for you.
Honestly! Some days, if Effort equals Outcomes, I’d have billions and gold medals. If I could be rewarded for people wasting my fucking time. I would OWN my suburb, because I would put it into real estate. But alas, I cannot.
But I’ve spent all day before, going to my one appointment trying to have either of my two carer genies to cover my PC shift tomorrow. (PC – Personal Care)
I cannot tell you how many times I had to touch on this issue to solve it and it’s all so I can get to my last Chiropractors appointment before she goes away for a month. So, when I say I’ll shop part of the shift to my other agency, it doesn’t absolve the first agency of the responsibility to cover it until the other agency has: A. Responded to my requests. B. Covered the shift.
It doesn’t stop one agency telling me they thought the other had it covered when I very specifically communicate the other has received my request and will work on it. So, multiple methods and even people at the same agency will be contacted or attempted.
Eventually, I generally miss out because they might prioritise training over covering a shift. Which I get, however you can train your staff as much as you like, but you don’t cover clients shifts. You lose clients.
So, it’s any wonder I return home and do a few of my other efforts to remain independent before my brain and my body has had enough and I melt into my couch and become a vegetable on the couch.
This is one of those days I don’t know how Meme Queen is going to brighten this post.
Sometimes, I think I should revisit the earlier days of HellOnWheels when life was full, as if it’s not now and I used to do a Hot Off the press post.
So, I guess this is reminiscent of those days. Monday, usually a quiet day at home but not always. Had a video chat with a new carer agency. Proof that every now and again the stuff set in concrete moves and you need to ride the waves of change to keep the boat upright. Is that a good analogy or what. Note, not a question.
Dropped off an old doona, its cover and some pants to an op shop on HellOnWheels, local adventure and went to a business to break a note and drop off some takeaway coffee cups that my carers keep insisting on bringing into my home. Then for the weirdest drug deal ever. You know I don’t do drugs and even in my club days didn’t. So, I think this topic deserves its own post. Went to physio after running into said Physio at the local business in question. Gave him some smack talk suggesting to lessen the imminent pain he was about to cause his patients, to have a nice chamomile tea. He didn’t.
Tuesday had an extra four-hour shift with one of my favourite carers. I know like parents with their kids, you don’t have favourites you just love them differently. When the two Helens get together, we get stuff done. We even did a little local adventure. A regular lady I am friendly with in my travels noticed a different face out with me and asked if she was my sister? Sure, why not?
Admin Day, things were started, booked and we did a little real estate searching. Because, why not? I don’t want to kill myself enough already. Don’t ever look at properties you’ve lived in years earlier and look at the sale history, you will want to kill yourself.
Wednesday, standard chiro. Gave her what’s the term for the – I moved my practice to its new home gift. Was going to go with flowers but they die. Settled on orange Toblerone. The really huge box, I got one for me too and it’s already promised as orange Toblerone mousse in mid-February when some friends come for dinner. They are bringing moussaka, I made lasagna last time and they brought a delicious selection of tiny cakes. Crowd pleaser. It’s a good way to do a dinner party these days. Delivered a bag of my old well-loved Adidas Gazelles I used to wear prior to life with an AFO, those were the days. Gotta run fast to catch the other Helen.
They will find new homes with young refugees who want to play sport. Likely connecting that carer with that locomotion to donate food that is normally disposed of in the bin. I love connecting my people with my other people. Then went to the toy shop I mentioned previously. This brings us to the end of Wednesday, basically.
January has become the time of year I do spring cleaning, carers, businesses I deal with, services I use, take time off. People with children have lives dictated by school holidays, etc. So, I do stuff. Onward
Tomorrow is a new day. Maybe I’ll catch up on some data entry, that alone is a never-ending battle.
Yesterday, I had to decide about whether to bother putting on a bra or not. This is generally half the part of Adulting, bra and shoes means I’m going out. As you well know, yesterday was a Sunday and I don’t do Adulting on Sundays, I didn’t even go out. I’m not talking about Out-Out. I just mean leave my apartment.
As you might have gathered my birthday last October set the tone for both Christmas and New Year. So, I planned a Ladies High Tea.
Lunch thing with my Real Family and that’s my carers. All my carers bring me a little something different. They bring me stories, family, friends, and treats. And I share their stories between each of them. Yet they rarely encounter each other. I share their stories as I am the water fountain in the office tearoom and I’m the holder of the peer support opportunities. So, it was finally a chance to hold a Ladies Lunch.
I even pulled out the Fine Bone China and the French Gourmet Side Plates. We started with the savoury. Homemade sausage rolls, triple cheese croquettes, arancini balls, even cheese and spinach and some other pastry things. The sweets included the ginger Christmas pudding I had yet to get to, the chocolate and orange Christmas pudding, the scones one of the ladies bought to go with the hot jam donut a friend hand delivered before Christmas, with whipped cream. Ginger kisses and the brandy snaps I didn’t get to over Christmas. (These are still uneaten in the fridge) I have been chipping away at the contents of the fridge for weeks and alas, still not getting anywhere.
One lovely lady dug around in my fridge for something, I had to direct her to the crisper. FYI. That’s the section or drawer at the bottom designed for fruits and vegetables, or in my home the containers of things that don’t fit anywhere else. Then when the girls were all departing the mother-load Brownies were still in the crisper. Guess we know what I’ll be sharing out for the next few weeks.
Finally, I should mention my carer in the morning did point out, I didn’t need to bother with the bra since they had all seen it before. Great to be roasted by people that know me the best.
I did wear a coloured T-shirt the girls wouldn’t normally see me in. I bought a few cheap T’s this early and I wouldn’t go past an aqua/teal tee that was everywhere in the men’s section of Big W. I don’t go there often, but it’s where I get my standard black summer pants.
It’s after midnight as I’m tapping this out on my iPad and not long ago, I realised some gifts remain under my tree. A particular carer had been working her other job and it had been too busy to get away. I had suggested I could call in a bomb threat, but we all know I was kidding. There are plenty of treats saved for all the others that could not make it. Note, the gingerbread house one carer delivered before Christmas She said it took five people to make it. It’s going to take more than that to eat it.
So, however you spend your time with family sometimes the people that love, respect and take the time to understand you are not the ones related to you by blood and as a few of my invited guests had not been able to attend I would say, I definitely want to make this a more regular event.
So, as per usual I’ve had a few new carers recently. One has picked up my Friday shift, so I’ve got a new Girl Friday.
We got along instantly like a house on fire. She is close to my age which is rare and good to have some variety for sure. She has a long red plait hanging over her shoulder with petite features making me want to refer to her as Elsa from Frozen and I haven’t even seen it.
All was well, in my first 8.5-hour shift with her when we got on the topic of football. We were doing so well. Our teams were playing each other that night and she’s a Magpie’s supporter, that’s the team mascot for Collingwood. It was nice knowing you.
Over for the last weeks of the season I made several early morning texts to her, the morning after, along the lines of “I’m your face!” When Carlton beat her team. It’s OK, I knew she could take it. The game was on.
I suggested if our teams faced each other on grand final day and her team won I would get a tattoo of a Magpie on my butt! (it would be my first) and tiny. I suggested if the Blues, (yes, the Carlton mascot) won she had to get a Huge Blues tattoo across her upper chest on the left, it’s fine. She laughed. Stating “not a huge one?”
I continued to mention I would get started designing our tattoo’s. Could have been a limited release. Alas, no tattoos were undertaken. That’s the right term.
Sometimes, having new carers, as I have right now, I get a new gene pool of stories. My newest carer (let’s call her 62), it isn’t right but here we go? A few of my carers at any given time are around this age and it is NOT A BAD THING.
Ms 62 was at another client’s home. (Let’s call this other client Ms 92) They were sitting at the table having a cup of tea and the Ms 62 a glass of water. Ms 92 has two young Sparkies in her bathroom doing some rewiring. One sparky is in the room, the other in the roof. From the kitchen the ladies hear one sparky call out. “Shine the torch through the hole!” Realising his error, he corrected himself with “Shine the light through the cavity!”
After the Sparkies departed 62 asked 92 if she had heard what the young man had said? She had and apparently, she had had a hard time not laughing out loud. Sometimes, it’s these little titbits that make life worth living.
* If you are not sure, Sparkies is the general term for electricians.
Sometimes, time passes, not by anything big that happens in my life, but by the absence of people in my life. Despite, Covid blasting 2020 to hell, Australia started the year in flames (the bushfires) and I don’t spend Christmas 2019 with any of my family, so due to Covid, any of the reasons we would normally get together during the year, they normally travel to Melbourne as it’s central to both outlying parties, but we would normally do a nice exciting lunch, etc. This did not happen in 2020.
But the people who are really my family these days, are my carers. I know, you may think I’m always banging on about my carers, that’s because I see them more. They are consistent in my every day and they see the effort and subtle changes around my home as I maintain my independence.
And sometimes, what they do makes the passing of time for me. One of my carers during Covid took leave for 12 weeks. 12 friggin weeks!
To do a course via Zoom!
“Zoom” The other plague of 2020, I’ve had 1–2-hour meetings of which I’ve found to be torturous. She’s been doing 9-5pm. Just kill me now. KM!!!KM!! KM!!! KM!!!KM!!!
The first few weeks, her two shifts were covered and she picked up my Sunday shift. I sent her off with some foodie goodness to help lighten her load. I told her after zooming all day she would not be interested in cooking. When she was at the ten-week mark, I was happiest for her because the whole living by zoom thing. And before you know it, she’s only had three weeks left.
So, it’s odd I guess, I don’t have children, which is a busy way to fill your time. I don’t work, which if you’ve ever had to live by a three-month contract timeframe. Three-month contracts, it’s long enough to cause you financial burdens, but not long enough to plan a holiday or big experience, etc.
So, for me, time passes one day after another, after another and it’s FULL of all the appointments, the meetings, the planning for the bigger procedures throughout the year.
A few lunches with friends, maybe out to dinner once or twice and a once yearly comedy event.
You know those posts, I’m sure I covered all the things, but I don’t know how to finish. I am exhausted by all the things that pass time and don’t have the strength or nutrition to improve the things that help me pass the time, but still. Fuck you Covid!
Sometimes, when I get a new carer and I do my induction phase and ask how long they have been a carer and who they have worked for. I get an early impression they are ‘Good People’. “Oh, you have done palliative care”
Then I work out she loves an environment she doesn’t take direction; she takes over, which is fine if the mum is dying and the husband is just trying to cope, the kids are losing their mum and their dad is not completely there either.
That’s not my home and they can’t shift gears to cope. Nobody comes into my home and takes over; I don’t need that. This particular carer, some ten years older than me. Very early I worked out, did not have friends her own age. So, she quickly got all the naughty girl talk sorted. Even when I do that talk with my carers, I try to keep it G rated and I worked out she was a complete narcissist.
This woman very obviously wanted to leave early on a Friday so she could go be with her 13-year-old daughter. She did helicopter parenting via phone while she was meant to be out shopping for my groceries, then doing my home care (cleaning). When I mentioned while out with her that I have a blog, she rather loudly enquired if I was going to write about her. I did not answer, already knowing if and when I did, she would not be bothered to read it, nor would it be complimentary.
The nail in the coffin was at some point and when it comes, it’s the final straw. The week I took Jemima to the vet the final time back in 2018 and I made the decision hastened by the fact that I had tickets on the Friday to see a band in my neighbourhood I have loved from my teens and while Jamima had been getting older, I’d been putting off the decision and she might have lived longer, I felt I couldn’t enjoy going out for the evening and enjoy myself if I was concerned about Jamima at home. It was a shitty, rough week, I cried before, knowing I was going to have to do it, I cried before I even booked, I cried. Let’s just say I cried. Shitiest week ever.
On the Friday, I had the carer from Hell, who tried to cheer me up by saying it would be a good night and I deserved it as a distraction. I’m picking up the thread of this post three weeks later, let’s see if I can do it justice. Anyway, so Friday carer arrived after a shitful week of saying goodbye to Jamima and then doing all the spring cleaning and cleaning up after Jamima’s last evening in our home. So, pretty quickly, I told said carer about Jamima going to God! (Apparently the term is crossing the rainbow bridge!) and that I had an exciting night planned to go see a band in my neighbourhood I’d loved from my teenage years.
I kept saying to my carer it was a little hot and sticky, towards the end of her shift so I might need her help after to shower so I could go out feeling fresh and clean. She was one of my standard PC (personal care) carers so it’s not like it was a huge imposition. It is not like she hadn’t seen me naked before.
We went shopping, we did all the standard hunter/gathering and towards the end of my shift. Always planning to have a shower, I made notes to do so. This carer often became very distracted around 4pm, which is about the time her kids get out of school. That’s when she’d be checking her phone all the time and the helicopter would lift off. She had a 13yr old and her behaviour altered around her noticeably. Offering to water plants then ignoring me and going ahead and doing it anyway and ignoring me asking her to stop. My indoor plants are a very careful balance of how much/how often. So, I think she just wanted me to dismiss her early so she would still get paid.
A friend dropped in to commiserate with me over Jamima. She had been a carer through the council and had loved Jamima from the first time she met her, threatening one day she would leave here with a big bulge (of Jamima) in her pants pocket. I told her if she could get her in there, she was welcome. She also had a cat the same age as Jamima so was grieving her cat that would one day soon cross the rainbow bridge also.
While I had a visit from Mrs T, I closed the door to the lounge so I could have a moment of peace from the carer who was getting paid to be there. She did not like being left out. She pushed open the door separating us to join the conversation.
“I know how you feel!” “Yeah!” “That pearler!”
Then she told us how she once had to take the tube from her son’s throat surgery years earlier. Now, we all know it’s not a mother’s job to take a tube from their child’s throat after they have had an anaesthetic or surgery, right? If you are unsure? The answer is no. It’s the doctors or nurses’ job, because your kids will hate you for doing it, the doctors and nurses get paid for the privilege. Your mum has the soothing and parenting jobs/roles you love them for. You have a Boo-Boo? Mum kisses it to make it all better. FFS!
Anyway, not digressing at all. Mrs T departed and I was sad and the night was young. So, I made a move to have a shower, the carer on shift had not been at all interested in assisting me when I finally headed to the bathroom, she decided to tell me she was reluctant to assist me. She decided to be very passive aggressive obviously and inform me if I’d wanted to change some of the shift, I should have informed the office, which by this stage it was Friday after 5pm, so it was closed.
What a stress I did not need, she helped me, but it was very obvious by her behaviour it was imposition on her that she complete her shift and help my get ready. She left, I made coffee, got ready and my friend came when it was closer to the time the venue was to open, we left to go see the band.
It was early. Daylight savings so it was still daylight, the venue was the Thornbury Theatre and I was going to see MIdge Ure, whom you may or may not know from the 80’s synth pop band Ultravoxx. If you are into something a bit less beaty (and electronic) are cruise and good to sing along to. Try this:
After the gig we walked home again. My friend walking ahead of me to cut through all the spider webs spread across the paths doing her best 1980’s goth arm waving. It was still light out and the streets were quiet. Got home. My friend left and I cried. I missed Jamima.
So, this is what you do to solve having a fucking shitty carer. Monday, I rang the agency and asked to put a block on her. I was asked why? So, I told her, I had a decent rapport with my rostering woman, as I always make sure to do. She was surprised, to be honest she deserved an incident report, but I was just happy to not have her again.
Unfortunately, I’d left a CD in her car, offering to loan it to her so she could listen to something a bit different. It was the BEST DEPECHE MODE CD EVER, Ii’s circa ‘88! (called Violator).
I didn’t buy my CD copy until about ‘92 but it was an old favourite. I have all DM CD’s but by far this is the standout best album. I tried to get back my CD but she didn’t respond to my texts and when I escalated it to management, they told me if I’d offered it to her as a friend it was my loss. So, soon I changed all my services from them to my current two providers, with who I’ve barely had an issue.
Over three years have passed and I recently was in a box of CD singles and came across said missing CD. Would never have looked for it there, the carer had bought it in and snuck it in a box. She must have not intended to return. Stupid Cow! No, she deserves worse.
Hell onWheels/Life One Handed 