More recently when I had my regular carer away on holidays for two weeks, I had a replacement carer. This lady had three shifts that week of more than three hours each shift to cover.
On the Tuesday, I had carer “A”, she quickly unpacked all of her emotional baggage. There is a tendency for friendly banter. She was very new to being a carer and she was telling me all about her husband’s first wife’s impact on her marriage and how he didn’t understand why at her age, she had gone back to study.
She was in her fifty’s and she had chosen to change her career and being a support worker requires qualifications. She was expecting me to be her mental health care provider.
On the way home from this shift, I received a text that this carer “A” would cover the rest of my shifts while my regular was away. I knew I would not cope so put a block on her. It seems to mean, but I’ve worked out in my short time which carers I can cope with and which ones I can’t.
It’s a strong word and by November every year, it’s an emotion I find I’m overwhelmed by. It’s when I also purposely don’t write. I just shut down and deal because I’m so very grumpy, but if I never write about it, maybe everyone out there in the world will never know they are not alone.
So, months later, ok two months later, I sit to write, hopeful that the strong case of grumpy (or hate) has mellowed sufficiently so people I know don’t all quickly reach for the pills or razors or tequila (just don’t do it!).
Later October it’s my birthday, I mean, I normally try to upsize all of October to make it “my month” But while Covid kicked everyone in the face in 2020, the few things I look forward to in October, I missed out on. Going out for lunches, cake, coffee and adventures.
My birthday generally sucks anyway and not because It’s when we get older. Whatever, who gives a Tutti Frutti. (Trying to swear less this year? See how long that lasts!) but my birthday is not a big celebration.
Not since my 8th birthday when my baby sister was born and a year later, we were both sick on my 9th birthday and her 1st birthday. So, 15 months and a week after her birth, she passed away from cancer. It was very ordinary.
To say in the early 80’s people, family, complete strangers did not know how to deal with the grief of losing someone so young. Still don’t, but really didn’t back in the ’80s. So, anyway birthdays suck. Check!
November rolls around and I have to start thinking and planning what is happening for Christmas. The ladies, my mum, two sisters, one partner at sister and me, that’s five. Check!
We go out for a lovely lady’s lunch, somewhere nice. Often expensive. There is wine (not for me, thanks) yummy dessert and banter. The exchanging of gifts to be unwrapped later (maybe).
My older sister is often issued the warning “No shakey, shakey!” She is terrible, can’t help herself. It’s hilarious.
Money is always an issue, some of us worry about money, some don’t. So, there is a balance of power thing going on. Then there’s actual Christmas, who will be where? My mum and younger sister live in the country, I lived there with them for two years around 2000. The home is perfect for them and putting a third in the mix unhinges us all. Upon arrival there I’m issued a warning as soon as I get out of the car. Be careful. There is the constant OH & S (Occupational Health and Safety) warning. Yeah, I get it. It’s a fucking hazard! (That didn’t take long, did it?) I could slip or trip or just plain face-plant. There was the year I stepped onto my mum’s front verandah to smell the fresh country air. This was the warning I received, “Be careful! If you go for a walk over by the water tank! There’s a snake living in the weeds!” To which I promptly turned around and went back inside. FUCK NO! I did not come home to be messing with any snakes. No! No! No! No! No!
My older sister and her now fiancé, live in the opposite direction. We all used to gather down there so we had Christmas together, they have a holiday house that meant we could stay there without being all over each other. Obviously, there is always a matter of who does the most on the day in the kitchen, but even one-handed I can pack a dishwasher like a Pro and I do my share as best as I can. But I miss the fun times in the kitchen, planning some yummy pasta dish for Christmas Eve, the hands on making of it, the hunter, gathering to prepare all the ingredients, etc too. Unfortunately, I am excluded and that hurts.
For about 4-5 years now I’ve gone home to my mum’s. Yawn, the place I lose my independence as soon as I arrive. We are all tired, grumpy and have our own interests. By which I mean I am not sitting and watching Survivor or MasterChef episodes from earlier in the year. Just NO!
So, I spend a lot of time alone. Mum gives me her bedroom so I can spread out. I take my cat (normally) who stays down that end of the house. We hibernate, I binge watch my TV shows too, because when I come out to see what’s happening, I’m literally shooed away. And if I don’t go home to mum’s, my older sister doesn’t think to include me. There’s the whole cat/dog ratio thing too.
Dog people/ Cat people!
When I have taken my cat home, they also have a cat, and they need to be kept apart. There’s are outdoor neighbourhood cats, they roam, looking for food. What a nightmare.
My father? Oh, my parents divorced twenty-five years ago, after twenty-five years of marriage. Don’t get me started, from my mum I never hear the end of it. I love both my parents.
I try every at Christmas, to see my father when I’m up north and It’s hard because my dad is not completely understanding all of my disability quirks. He is just very opinionated that I must move out of the city so one day maybe I can save some $$$$’s for a deposit and own something one day. He does not live in Helen’s real world. He does not know; he would not understand and there’s no point trying to teach him.
So, people think I’m included in Christmas and that’s the end of the stay. Last year (2020) I stayed home alone in the city, because it was better than being somewhere I need help all the time and lose my independence immediately.
Christmas and family time. I’m just saying. It’s death by 1000 cuts.
In January, I’m just glad IT’S OVER! I get next year off.
Well, I’ve survived another Christmas holiday period when my favourite cafe closes down and while I could go to dozens of cafes closer to home nobody looks after me like the place I’ve been going with regularity for 10 years and I think the regular staff might not have remembered me from before I developed my disabilities, but they certainly treat me like I’m a normal person and well, not asking questions of what I did to my arm, etc. It’s great to be back!
I’ve already been a little busy organising things to run smoothly for the rest of the year. Chasing up Botox referrals and my new NDIS plan! YES! It’s been approved! I should have it by Christmas 2018, they said, my backside! It was approved January 10th and even that small delay pushes everything back including requests for carers and services. It all counts. January seems to be a time not worth trying to achieve much as most of everywhere I need to deal with to get anything achieved is still in holiday-mode, or still on holidays. Might as well have a stay-a-way too.
By now, you likely all realise how bad my sleeping pattern is? If not, you are about to. Tuesday morning I’d just gotten to bed around 2.30am, took a while to get to sleep and around 3.30am heard increasingly off-putting sounds from Mika. When I went to bed Mika curled up against my leg on top of the blanket purring. So happy! 3.30am? Growling, hissing, smells (you know the ones) and at first all I could think was, “where would she find another cat to be growling at?” I got up to investigate.
It was hot! Did I mention we are in peak summer? Every day hot! Even over night! I called Mika’s name and closed the door to the study. She considers it her room. I move around inside without needing to turn on a light. There is enough coming in from the street. I don’t close my blinds. I see Mika standing at the glass balcony door. She is growling. What the? Looking out onto the balcony amongst the jungle of my plants, I spy a slim long-haired black cat. It sees me and scrambles up onto my large potted curry plant. It wriggles through the 2.5-inch gap and is gone. OMG!
I have mentioned I live on the second floor, haven’t I?
Not happy Jan.
Mika hasn’t been let out onto my balcony despite her curiosity at the water running across the tiles, from watering the plants. I would net the balcony if it weren’t for the expensive, and the promise to ‘make-good’ when I vacate and the drama of getting the body Corp to agree to let me net the balcony. Easier to not let Mika outside. She manages to have a view from the windows and there is fly-wire screens so can’t get out. She chases the little sun to get her vitamin D! Cats do have their priorities after all.
Now, time for eating and writing. I’m way behind on writing. Today’s offerings are, the chicken and turmeric salad & my standard medicine.
Nom! Nom! Nom! Nom!
There is a reference I often make to what it’s like having a disability and I’m certain people who have more severe disabilities than I, feel this way.
Now, I also premise this by saying I’m pretty sure my family don’t read my blog. So I’m good to go. I can write what I like.
Let me just say, the breakdown of my family is this. My parents are both still amongst the living (not complaining), they divorced when I was about twenty-five and I knew it was coming for the ten years before that. I have an older sister by two years, who I see once or twice a year (she lives closest), I have one surviving younger sister (16 years younger) who lives with my mum. My parents both live three and half hours drive away, my father, I see at Christmas when I’m up that way. He won’t travel to Melbourne to see me and if in town, he won’t bother to visit either. He has not seen most of the places I’ve lived, in the last twenty years. I think he’s seen one, he doesn’t call me, I call him.
I speak to my mum twice a week and while that’s five times less than it used to be, we got along much better than we used to. Mum comes down every so often for serious appointments and such.
Ah, background done. Now to my point!
During smiley holidays and such (Christmas, Easter, what-not) I will go to spend time with family. It’s that or stay at home alone. So, I go and then I lose my independence immediately. I have my mum’s bedroom and I hibernate. I want a shower I have to negotiate when someone is prepared to assist me if I go outside, I generally don’t step off the verandah as the last time I went outside my mum called to me: “If you go for a walk be careful by the water tank there’s a snake over there!” I promptly went back inside to relative safety. Motivation to go anywhere is hard to draw on.
To go anywhere requires someone to drive me either twenty minutes to a decent meeting place with medicine(coffee) or an hour where I can arrange to meet friends who might visit family once a year at Christmas time. Any of these adventures requires money I don’t have and logistical nightmares of being able to get home again when I need it.
I put my things in the fridge and when I go to get them out again, two other people have moved them to get to other things and I might be standing in just the wrong spot/angle and my things are in my blind spot and I can’t see the forest for the trees.
The environment is a very comfortable space for the two that live there and throwing me into the mix I feel terrible to put someone out to be able to join in. Everything I can do to contribute, someone has to move things to prepare for me and I feel more of a hindrance than an adult. So, I hibernate.
Oh yeah, where I spend Christmas, I’m also socially isolated by other means, no mobile reception, I divert my phone and if they can’t remember their wi-fi password I’m screwed. So, hostage. Like I said.