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.
I’ve previously covered that the definition of “to bruise easily” is finding a bruise on your body and not remembering how you got it. For over a week my carers have been pointing out this bruise on my left arm. And I recall exactly how it happened. This is from when I took on a fence while out on my scooter, it’s still standing but so am I.
I have a tendency to take the High Street to go out on HellOnWheels to do some Hunter/Gathering at times to help get ahead of what I need to achieve with my carer on a Friday and to be a little creative, take a break from the High Street, I take some smaller side streets to cut through the smaller streets, on this particular day I encountered a shopping trolley someone had thoughtfully left on the footpath leaning against a tree. I imagined I could fit through the gap. I was wrong.
I reversed, got off my scooter then pushed the trolley onto the road where a driver could curse the universe later. I continued home.
Since then, when questioned by my carers, I respond, “I took on a fence! The fucking thing is still standing!”
Was catching up on some of my data entry today when I realised how well I cope with my brain injury. So well, people often forget my AVM/ABI is not so much mental but physical.
I guess the point of my blog is to educate people that all brain injuries are different. While catching up on my data entry, which is a lovely excel spreadsheet where I record the carer hours and other services for future reference, I realised a date in November 2020 I had so much on at the same time it wasn’t funny. Yet I can cope. This particular day, I had my Personal Care (PC), carer for an hour. My community access carer, despite not going out arrived just ahead of the PC chick. All of which I can work with, as can they.
I still had to be presentable as I had a committee meeting via Zoom. While I don’t do make-up when I’m not out of my home (apartment!). I won’t do make-up to stay at home, but I do need to not do colour and then I remembered my MOTHER was here. It was not planned; it was very last minute the night before. But it is what it is.
My mum had gone out to her appointment and returned by the end of the Zoom meeting. By which time my handyman had arrived. My handyman comes once yearly for a spring clean. Does windows on the inside, the fan covers in the bathroom, any areas on walls or floor that take a serious hit and it’s not the light cleaning my weekly HC (home care) carers need to do. Suddenly with too many warm bodies in my apartment, a complaint goes out that it’s too hot and can the A/C go on? Well, it’s set still too hot but here’s the remote, work it out.
Still three people are in my home and I’m to prioritise what everybody wants as the most important thing to solve first. At this point I get a bit grumpy. OK! We are working on it, if you can’t help, don’t be part of the problem my mum gets the heater to cool air.
There is a new calm. Mum makes her lunch and coffee and departs for her long drive home. What she was here for had been achieved.
Despite what she may think of how I feel about my mum. My mum is a ROCKSTAR! She really is.
The second carer gets her stuff done for me and departs. It’s just me and the handyman and a recently departed carer visits for a bit. She distracts the handyman briefly with talk of fruit trees and such. I’m meant to roll with the punches, it’s fine. The handyman goes, as does the visitor.
My brain is fried. But I coped with all the craziness. All these things, they wouldn’t normally happen ALL AT THE SAME TIME.
Yesterday I had a brief experience of feeling vulnerable. It’s not my happy place, and I can generally roll with the punches. I’m stuck in my routine in many ways but I can be flexible and move things around while I’m on the fly.
But my vulnerability is I need someone in my home (a man who doesn’t know me at all outside the brain injury group we are both in) and I was wearing my ‘around the apartment’ clothes. A colored t-shirt and shorts you could see my hairy legs in. And I was in slippers (they were O.H. & S.) standard so I don’t slip over in my socks on the kitchen floor and most annoyingly, I didn’t put on a bra.
So, it is to say, I have one persona of black steel.
I know I can’t believe I even wrote that, when I’m out I want to be seen as slim, sleek, stylish, class, etc. Blah! Blah! Blah!
But when I’m at home I wear clothes, I do not wear them out. Colors, shorts. No one sees me, my carers don’t judge me, my cat doesn’t care. She looks at me weirdly when I have my hair out.
Yeah! That’s a hard pill to swallow.
That’s why I go out of my way to NOT make myself vulnerable.
I’ve had carers or support workers now for about thirteen years. Long enough to know the more people between me and my carers means anything they need to know, do, which entrance to use, etc. The more things can potentially go sideways.
When things go sideways that early (most of my carers in the morning around 9.30am) As I’ve been blogging how long now? I knew I mentioned in my early blogging days, I would complain about carers arriving early. This shit is still happening.
This is when I would point to my face and ask “Do I look like a morning person?”
Twenty-four hours a day is morning for me. I’m not a morning person, I’m not a go out at night person, I’m barely a person. I don’t mean I’m not human. I just am constantly grumpy and don’t cope.
My main agency lately, that provides my morning and rare afternoon carer doesn’t have the personal to cover all my shifts. They have already merged with another large agency I’ve dealt with years ago, but they still don’t have support workers in my area. So, two of my shifts each week, they outsource to another agency. One shift to another agency, the other shifts to another agency. Can you feel my frustration already?
Ok I will blah
I have passed on enough details.
No perfume, park on this side of the street, in this supermarket carpark. Enter the apartment complex here, not here. Come up in the lift to the second floor, etc, etc.
Sounds like a lot, but trust me, I glossed over bits or streamline.
Sometimes having to rely on carers is detrimental to my Good Mental Health. So, in case you had been imagining having carers makes up for being one-handed in life. It really doesn’t.
It often requires a skill set, not everyone with a disability has. I mostly have carers older than I am. It’s not by choice, that’s what it is. I’m not complaining, it’s good.
However, I find older carers sometimes think they know best, so do things how they want to. The downside on occasion is when they don’t listen. They are not there to deal with the consequences.
Some carers only see me when I’m upright, chatty and engaged. They don’t see me when I’m not coping. They are not there when I have to bring my washing inside and hang it, so it has a chance of drying on racks.
Some items in Winter can take days to dry because it’s cold enough to need a heater on, but I have to negotiate spaces around drying racks. My left-hand catches on things as I move around, my left foot catches also. I can easily lose my balance and fall and trust me, no-one around when I have a migraine. Because they don’t limit themselves to the days, I have to suck it up and get shit done.
Yesterday, had a nice adventure planned and by 8am the wheels fell off. My fill-in carer had rung in sick and I was asked if I wanted them to be replaced? Just imagine I do like a shower each day, so I said yes please but, my agency outsourced me to another agency, who got lost 3 suburbs away and by the time she found me it was lunchtime.
I was in the mood to hibernate. I also thought I’d make up for doing full “Person” on Saturday, I also did hours of admin sitting at my desk. Here is Mika, her idea of helping me.
That’s right, I went out! I went up and down several times in the lift and ran into people. It’s amazing how many people you see if you keep normal hours. I was even able to help a guy who was attempting to get into the garage entrance with a slab of beer in his arms. I called to him as he was about to put it down and clicked the button for the garage gate to open. He seemed pleased and surprised.
I had been waiting for my sister to pull in to “bump in/bump out” she bought me a vacuum cleaner as mine recently died and she collected some goodies for my dad. Ok, our dad. She was going up to stay with him for a few days before going onto Canberra with our younger sister. We had lunch locally.
I did take photos but they did not work! Again! Reasons why Helen cannot do Insta. I did however make my second last bread and butter pudding Sunday night. I even had some, I normally portion and package it all up to give away. Have delivered some today and while none is going to Sydney to my administrator Noelle. She is getting a box full of goodies. Should arrive Monday?
Another crazy day, not even getting to my favourite cafe in North Fitzroy. Stayed close to my last appointment in Thornbury for lunch instead. Today’s offering a black bean pie, with a little salad and relish and medicine.
Have you heard the line; If you want something done right, do it yourself? Now, obviously the definition of ‘right versus wrong’ is a debate all in itself and for everything in my home and surroundings, I am the master of my domain and my way is the right (correct) way.
I don’t like to think I am a domineering person or a bully, however in my home, where I should be able to control things, I like things my way. Because even in really minute ways if something is in the wrong place, I can’t see it or I can’t get to something I need and if you can’t do it yourself, you out source it.
I currently have six carers over a week (I actually had to write down their names to count them) and I thought it was more. To be fair, I have a few I get more than once over the week and to make life work, I will pick and choose somethings one over might be better at or appreciate helping me do it overtime. All of my carers are pushed for time. So, somethings might not get high priority so they get neglected. Other times one of my lovely assistants (it’s what I call them) might get sick of seeing some mess or other and she will make it her project for the day.
If a carer doesn’t do something, I’ve asked of them, how I would prefer it to be done, they might have been telling me not to ask again, so I don’t.
So, this will be a totally rare time I include the name of a business/company/service, I currently use. You will notice I don’t ever mention the name of my favourite café? Yeah, most of my followers are on foreign soil, so it’s irrelevant, but sometimes it’s hard enough to get a seat as is. That’s the only reason why though.
So, today I will mention one of the Care Providers I use, same reason as above, but it’s relevant to the story. This is also a likely example of how life has a tendency to go in full circles.
Ok, Circa 90’s when I worked in clubs with Malcolm (you can read about him here)
He had (just like any DJ of that era) Yes, Yes what was generally referred to as a toilet song. You hear a certain song come on. Don’t get in a DJ’s way. It’s usually a rather long song/track that is long enough to get to the toilet, the bar and back to the DJ’s booth.
It was usually this one
My Carers come from Mercy Health. They manage the homes where all the retired nuns live. There is a women’s hospital (Mercy Health).
I am by all means not suggesting they are the best, but I’m never going to bother mentioning the ONLY agency that didn’t ask for me to participate in the regular NDIA audit and provide feedback about their services. Am I correct?
So, anyway, my carer today was telling me where she had to go after me. Most of my carers visit the nuns. I hear about it all the time.
So, my carer today said she was going off to the Sisters of Mercy and everything after that went straight over my head.
Back in the 90’s when I worked in clubs, I was NOT GOTHIC. But sometimes, I wore more, shall I say, socially acceptable styles to not ‘offend’ the Goths. There was always a boy with this…..
It was the era after all and sometimes I would just outright wear my dungarees (because they were light and comfy) and other times I wore my bright coloured raver street wear.
I miss those days.
However, The Sisters of Mercy (the band not the nuns.) is touring later in the year. I’m debating about seeing them. The play at The Forum, two days after my birthday.
Hell onWheels/Life One Handed 