Self Advocacy Never Done

Published June 3, 2019 by helentastic67

I’ve often said there is no holiday from self-advocacy and you might not have any idea what this means, so allow me.

Wednesday arrives and so does my carer and the phone rings, the agency calls and I’m happy to hear from her because we have a decent friendly repour. Until she tells me she needs to fill my next shift, because the carer rang in sick, it’s 10am and my next shift starts at 12.30pm (because they won’t cover taxi’s) my carer now helps me efficiently get from home to my favourite Café to my Chiropractors, then back to her home at the location I get stabbed (acupuncture) by 3pm.

I used to do this all without the assistance of a carer, but because my chiro relocated, I can’t do it all efficiently in a day via Young John, my scooter and a tram. Then I get some steps done walking here.

So, agency calls and she is letting me know they might not have someone, my morning carer in the background is trying to see if she can be the silver bullet to solve the problem.

We have a brief discussion about the availability of my regulars. Not the silver bullet. Some only work certain days, others study also, others again have a full day and would end up working ten hours, which is NOT ALLOWED. (not complaining)

So, I’m asked ‘which carer wouldn’t I like?’ I give her a ‘Don’t be like that!’ a little tartly and she says ‘Remember when we started, I sent “XYZ” (not her real name) and you loved her. Here’s the advocacy part. SHUDDUP I got there. It was all relevant.

“No! No, I didn’t, she was the first carer you sent to me and I was being professional and diplomatic, but I could tell there was a little something ‘off’ about her.

That first day she made a point for me to know she was a ‘white aboriginal’ woman and she loved to brag about her wealthy private clients, that had indoor swimming pools and a lift. “Hey, I have a fucking lift too, now I’m doing apartment living.” She came to my new home after Christmas because they were short staffed and she looked down her nose at my home, saying “she couldn’t do it!” Then she stole my letter opener and Seinhausen headphones.

So, No! No! I don’t want her back again. I was asked if I would be OK to have a male carer? Of course, they will not be needing to see me naked. So, fine. They found someone for me and that little hurdle is conquered, but it’s pretty much how every single day goes. Either it’s the agencies, my property manager, my carers or even my family, or complete strangers in the street.

It’s NON-STOP, it never ends.

Miracle

Published May 17, 2019 by helentastic67

Miracle

The beauty of being in Australia is we have a long weekend, being part of the Commonwealth means we get to celebrate the Queen’s birthday and not just once a year, but twice. Don’t ask me when, but TWICE.

Although I don’t work, even I’m glad to have an extra day off around the weekend. But it comes with some consequences, the appointments, the carers and services I normally spread out over five days, I have to squash them into only four. There are always extra things cropping up I need to fit into the mix.

Last week was a short week and the extra things being, my mum arriving Tuesday morning at 2am to collect my sister from the airport at 6am. So, my sleep was already compromised. I’d had my Friday services of shopping and my only food prep shift with a carer that had to happen somewhere else. Add to that the services on the Thursday I had to move to accommodate the above and you have the perfect storm. I’m surprised by the Friday I didn’t have a migraine.

Thursday, I had three carers all of which overlapped and I even had the scooter guy to do a maintenance sorting me out with two new batteries and a charger. I returned home with my shopping carer to do the food prep shift, where we normally smash out three things at once, part of each I’ve generally started to get ahead of the ‘crazy’. I had the gas guy there to check the burners of my stove top and they had NEVER BEEN DONE.

I think the apartment block is four to five years old and the fact I made it through the week without a migraine now, makes me think it could have been a miracle.

I think we have another long weekend next month, Cup Day, great. Gotta plan now to get ahead of that. It’s a month away.

Rehab – Part 6

Published November 5, 2018 by helentastic67

Rehab Part 6

Rehab Part – 6

I have carers, as you know who take me shopping and even my morning carer that helps me get ready after my shower, to face the day, they all become my friends. It’s inevitable, the ones I can’t crack are usually very reserved, on account of them not planning to put down roots and those don’t plan to stay in the job long term, choosing to move onto other things.

Carer morning routine

When out and about on my shopping adventures, it’s much more like I’m hanging out chatting with a girlfriend.

Shopping adventure

I might have mentioned, my carers are usually older, sometimes younger, rarely my actual age.

I’m now 46 years old and I get along with all my carers regardless of their age.

Carer friends

Off to the supermarket on Friday, I don’t remember what we were discussing when I said “Yeah, well, I finished High School in 1990.”

Supermarket shopping.

And she said

Wait for it.

“I wasn’t even born then”

not born yet

Yeah that just happened and then later that day.

Human Resources

Published July 27, 2018 by helentastic67

Human Resources 1

Human Resources

Is it wrong that I want to text the carer I was supposed to have today and ask her if she had a shower? Because, I haven’t!

Texting

Sadly, it’s wrong for one reason only, because I shouldn’t even have her number.

So, let’s imagine in a perfect world, I don’t have to manage my own HR (Human Resources) with who is coming and when. That I get a roster emailed once a week and well I stopped asking months ago.

Ideal World

I’ve stopped calling the “after hours” number to find out who I might be expecting for my 5.30pm FP (Food Preparation) shifts, because no one ever returns those calls.

Managing Carers

I guess, some carers I’ve managed to get their numbers out of friendship, which is nice. And this new batch I’ve gotten their numbers because their company has not been very organised.

Unorganised

Thankfully, I can do this, however I’m not getting paid.

Unpaid work

Let the Games Begin

Published June 25, 2018 by helentastic67

Let the Games Begin

I’ve been sitting and planning this post for about six months. Since I’ve been getting carers through an Agency, funding by the NDIA.

NDIS Carers

Dealing with HR (Human Resources) issues is super “NOT HOT” when getting and keeping good carers. The carers I’ve had the four years from my Council, through to HACC (Home and Community Care) which is state funded. They walk in, they ask “the normal” and they get to it and anything else they might choose to make their little project, when they leave, they might debrief me.

Choosing Carers

“I did the dishes, the stove, the benches, the kitty litter, the bins and xyz” by then, I’m nodding and shooing them out the door saying “I know, I trust you”.

They arrive, they leave, probably a little over the timeframe I am meant to have them but I know I can trust they did more than needed and they leave satisfied they will be happy with what they achieved and my cheek and personality has boosted them to get through the day. Sounds egotistical, but it’s a mutual thing.

Cheeky Personality

This is why despite having sufficient NDIS funding, I haven’t just opened the flood gate to get ‘God Knows’ how many new carers to cover 16 hours every week. I would go mental.

In six months, I’ve lost count how many carers I’ve had, but I’ve blocked three from returning for various reasons. Some have injured me, some we just had a personality clash (to be diplomatic) and some I just outright couldn’t deal with them anymore. There is one I really liked that I think cancer-wise she moved on.

So, there is a common thread that some act like I need them more than they need me because of me having a disability, is a little bit like I’m a commodity for them paying their bills.

Human Commodity

I get it that they do this job because they enjoy it and get some rewards from helping people and nobody would deny they don’t need the money, but I can tell when people work in this industry purely because they see it as a stress-free income.

I can tell when carers vie for my attention, asking coy questions to find out if I have other shifts they can utilise or if a carer must love coming to me because I’m friendly or chatty or (wait for it) YOUNG.

Love the work

I had one lady, I swear she arrived and she was old. I’m not ageist, however her face was very wrinkly and she looked ‘older than God’. She turned out to be younger than Aunty Christine, she has actually aged well. But this other lady, she was jumping up and down telling me all about how young and active she was because she wanted me to want more of her.

Older than God

I can also tell when carers prefer to spend time with clients who are intellectually handicapped, because they think they can do what they want, say what they want and they don’t get held accountable.

Intellectual Disability

It’s also challenging to keep or put boundaries in place because I am so friendly and independent. Who knew either of those things could ever be bad traits?

Bad Traits

So, carers sometimes come and go very quickly. You can have too much of a good carer and you burn out or get over a good thing and not enough of the awesomeness.

In recent years, if I rang my council and managed to get the ‘right’ person who knew my reasons and standards, I would be able to add someone to my ‘blocked list’ without questions.

Carer block list

Now, they require an Incident report and the first one was an embarrassing incident where I suffered a scraping type of injury about an inch above my “Chocolate Starfish”.

I don’t know why, since I generally dry there myself. But when I asked the trusted Aunty Christine, she swore black and blue (oh, how I love her) and that was that. No more ‘older than God’ carers.

Black and blue

The others, it seems to be, they come to work but would clearly prefer to be somewhere else. On their phones, arranging social activities with friends, doing parenting or maybe just filling in time. Since they don’t actually want to find ‘something’ to do. Having carers is a blessing and a hindrance and while I’m all about flexibility, there are limits.

I can’t arrange my needs around their lives, if it’s dark at 5.10pm – (Autumn currently) the washing comes in by then. So, no can’t have you come early at 2.45pm because it’s too early and the shift is at 5.30pm.

So, the games go both ways and I’m usually the one who puts up with more or goes without, which starts to feel like a human rights issue.

Human Rights

Grumpy

Published May 28, 2018 by helentastic67

Grumpy

I confess to say, on some days I make my carers laugh before they even get in the front door. I generally sleep until my carer rings the doorbell and wakes me. I know, what a princess, I usually wake and go back to sleep from only hours after I go to bed, so it’s weird sleep and any coma-like sleep I get from 7am until my carer arrives and rings the doorbell is maybe going to wake me.

I stumble out of bed towards the front door, usually calling out “Hang on”. Beside the front door are panels of glass, so I sometimes see them raise their arm to press the doorbell again. I let out a low growl. I’m sure my neighbours must think these women who come and go laughing must think I am mad.

Getting out of bed

At other times like this morning, Aunty Christine (one of my carers I’ve had for the last four years) was grumpy. She has been overworked and recent leave, she has taken off work, to be a full-time carer at home for family and stressing about all of that.

Auntie Christine

I’ve been stressed about life, the Universe and everything also, so while sitting on the edge of the bath while waiting to get dried, I had time to have a little scratch.

Scratching

I scratch just about everywhere I could reach with my right hand. It’s kinda what I do when anxious, it’s also been hot, so some might be heat rash.

Anxiety Scratching

Out comes the Tea Tree Oil and the moisturiser. She prepares to do the oil on my back. The other carers have been neglectful.

Aunty Christine has a little swear about that. (We have set up a standard where she only does this with me and no other clients. I’m very much OK with it) We move to the lounge and she picks up my AFO. She picks it up by a part that was added on after it was made. It was meant to solve a problem that wouldn’t have existed, if they had made what they were meant to make the first time, instead of a ‘Piss-Arse’ effort that caused me more problems than solved.

Swearing

Christine has a swear about the AFO’s also. I tell her it’s getting completely replaced Thursday, one whole day away. She threatens to bring her glue gun to fix it.

She notices my toe nails are a bit long, we had already discussed my scratching, my heat rash on my weak arm, back and side. Basically, anywhere I could reach with my right hand. Again, my nails are being attended to on Thursday. Nothing too expensive or extravagant, just maintenance I can’t do and I’m not allowed to have my carers to do for me.

Long toe nails

Those humans I choose to interact with and the teasing make life all worth while. Make sure teasing is teasing though and don’t take it too far. That’s when it becomes bullying. Very fine line!

Tera Toons

And now, as time has passed I’m now aware the scratching is partly to do with me sliding into the Pause…….(menopause)

Menopause Super! Right?

It just gets better and better……..

Gets Better

Grumpy

Published March 26, 2018 by helentastic67

Grumpy

I need to have a grumpy rant!

So, if you can’t cope, skip this post now, but if you can hang in there, it might give you some understanding of why I swear in my posts so much.

Grumpy rant

That said, you should be prepared for some F*** Bombs. I’m currently house hunting, AGAIN!

F Bomb

I know, I know, I’ve lived here for four years, which in the last twenty-five years is my limit and I’ve only lived in four houses for four years each, so you can imagine the rest of that time I’ve bounced around a bit.

Four years

I‘ve been meaning to write about how I’ve been preparing to say goodbye to my friends. My friends being the five or so carers. I’m about to lose because I’ve now got the NDIS and I’ve got to start using my funding through an Agency and then there’s the painful process of “Training” new girls.

Saying Goodbye

I’ve had to implement “Grumpy Helen” to do this, I am hating the “System” I live in where, if you fit some particular criteria, you get funding and assistance thrown at you.

Let me give you an example:

Are you Aboriginal or Torres Strait Islander?
Are you a refugee?

Hear me when I say, I appreciate why refugees need assistance, however, WHAT ABOUT ME?

What about me

I mean and they advertise assistance for these groups and so on. I have been told by people (carers) that they have other clients who live in private rental and when I ask how, they can’t tell me.

Expensive housing

I rang a few places a few years ago that were recommended to me and no one could assist me. Today I sat with my CM (Case Manager) Dave and he told me of a “thing” for want of a better word, it is an organisation and acts similarly to a Real Estate agent and they have properties cheaper than the private rental market.

Housing

Ok, all the properties are miles from me or anywhere I need to live, however maybe I can have my property added to this program? Who funds this scheme? DHS

This is another Government Agency – called already. Department of Human Services, who manage Public Housing.

Public Housing

So how come, if they find all these other agencies to deliver programs and dole out assistance – how come no one could would tell me about this scheme?

I noticed with some regret, I am yet to swear in this post, that I promised or suggested it was likely I would swear. So, allow me to remedy that.

Swearing

FUCK! FUCK! FUCKETY! FUCK!

Fuck

Sigh, that feels better.

And I’m back.

I’ve found something fun to do in my neighbourhood, that is an evening thing. In my neighbourhood and I can’t find anyone to go with me. It would seem everybody else gets funded to do ‘fun-things’. I can’t and I can’t even find a friend to go with me, am I going to have to pay a carer to go?

Fun things

Oh that “event” is Midge nMe from Ultravox. For those who need Google and Wiki, I’ll help by sending you back to the 80’s and mentioning Synth-Pop and if your parents don’t cope with your music taste, they would probably cope with Ultravox.

Ultravox

OK, feel like I’ve maybe mentioned this before, but just in case, caught up with a Numpty-friend late last year. That translates to another friend with an ABI.

I mentioned another Numpty-friend had gotten into Public Housing in my old suburb. This is when I get livid to the agency of Public Housing in that neighbourhood. I outright call them liars, as I had been opposite some Public Housing and I knew there was new Public Housing this other person had been accepted to. The friend I was with told me the lucky person had been bragging a few years ago that they’d bought a house. So how did they qualify for Public Housing?

Numpty

OK, I miss “cable internet”, I don’t know if I need to say anything else on this to pick. The house I rented before here, I was offered Cable Internet as it was available in that area. Is that a stupid question? So, I got it.

Cable internet

I lived there for fourteen months, beautiful house. Needed a housemate who could pay half the rent and I held in there as long as I could and that’s why I moved here. No housemate required. I’m sure you feel my pain.

Feel my pain

After going out to my kitchen to cook dinner at about 10pm, I noticed a huge light in the sky. OMG it’s a full moon.

That Mother Nature has a lot to answer for.

Mother Nature

Today’s Lunch – 21st March 2018

Published March 21, 2018 by helentastic67

Wednesday

Today’s Lunch

Good Mental Health Day

Another Wednesday creeps around, this week so far less stressful.

Although the usual drama organising carers to get organised to get out of the house (paraphrasing, I now live in an apartment) and get to an early appointment then home again in time for my 2pm carer. Does this ever end?

Organised

Today’s offering is Fungi Pizza with the side salad and my medicine. I’m not big on mushrooms but on a rare occasion maybe I’m feeling a little mouldy. (Get it?)

Pizza Latte

Cheers,
H

Happy Wednesday 1

Rewards

Published March 19, 2018 by helentastic67

Rewards

I think I have worked my way around having carers in my home very well. Here’s an example; I have a rewards system, they can gain points or lose points and they have no idea how to do either.

Carers in the home

I’ve been getting new carers recently to utilise my NDIS funding and I’ve had maybe four different providers in eight years because I’ve moved three times and under HACC they keep you in-house until they work out what your needs etc are, then they outsource you to an agency, if they can’t cover your hours or service requirements. So I’m getting kind of OK (good) at it.

Booking carers

If I get a call from the office to tell me a carer is at my front door and they didn’t ring the doorbell. You lose a point.
If you lie to me, if you continue to lie to me. You lose a point.
You treat me like I have an intellectual disability (ID). Yes, you lose a point.
You treat anyone without respect or humanity. Lose a point and my respect.
You do your job. You get a point.
You do your job well. You get a point.
You do a shitty job well, with a smile on your face. You get a point.
After an acceptable ‘cooling off period’ (undetermined) you can do what’s required without me asking you. Yes, you get a point.
You have spare time and find something that you think requires attention and you just do it. You get a point.

Now, you have the basics let me give you an example.

Apart from the first one because that’s obvious. A new carer arrived and she had her earbuds (headphones) in her ear. She took one out and slipped her phone in her bag. I politely greeted her and she responded to me. I politely stated three different ways (can’t remember now exactly what I said, but it was a challenge) without outright calling her a liar.

Carer with earbuds

She kept insisting it was not on ever, after she first told me she could hear me. I still thought it rather rude, so I just politely told her I could still hear the music. She took her phone out, turned it off. For real this time and took out the earbud.

Liar liar

There is no specific score one gets or loses before I deem it relevant to contact the office and add them to a list call the ‘Blocked’ list.

Blocked

I have a very active ‘Blocked’ list of girls I won’t have back to the point, if I speak to the right person they know my standards and my reasons and I am not required to explain myself.

blocked 1

Human Resources

Published February 9, 2018 by helentastic67

Human Resources

I’ve been putting off a major decision lately because it means I’m about to lose all my friends. I guess it’s not so much a decision, but more about timing.

Major decisions

Because I now have the NDIS funding, I have been allocated hours for more Carers, many more hours. But I can’t use more hours with my current Carer Provider. I need to start using an actual Agency.

My Carers over the years have been supplied through my Council, who only want to provide me with five hours a fortnight. Seriously!

What are you supposed to do with five hours a week, let alone over two weeks! Not much.

Because I’ve held off telling my grumpy Council I’ve been approved for the NDIS (because they would drop me like a hot potato).

Hot Potato 1

I will lose my mind, training a bunch of new Carers, to be able to cope with me and have them, I’ve started filling in the gaps that my Council didn’t provide.

That means Tuesdays, Thursdays and Saturday, Sundays. The last three weeks I’ve had a shower each day on the weekends.

It’s a MIRACLE.

Miracle

I can shower myself. I can even dry and dress myself. But it’s exhausting and if I needs to wear a bra, I can get it on, but it’s never comfortable.

So far, I’ve had three new Carers, it seems there’s not many in my area and they are generally not prepared to travel for a shift shorter than an hour and a half.

I am much better at the whole HR-thing these days. (Human Resources) I’ve been getting Carers for about six to seven years now. My mum was very ‘keen to train’ my Carers, thinking it would be maybe, five Carers in a room and well, I don’t know what she was thinking.

I would love my current Carers (friends) to do a handover, but in reality, I get a new Carer, one at a time and induction begins the second they arrive.

Training

I’m friendly and inviting and while I show them around I show them the list of ‘chores’ I would like them to be able to get through while they are there.

Dishes get done, Kitty litter changed, rubbish and recycling get taken out all while I’m in the shower. Nothing too challenging.

Kitty litter

But the personality match is always just as hard as finding someone who knows how to wash dishes. (Seriously, stay tuned for my training guide on how to correctly wash dishes.)

Washing dishes