Flicked Off in Days of My Destiny

Today was a normal day that turned … weird.

I started the day off by spending time with L and the girls before L left for work at 10am. We played Uno as a family, something we hadn’t done for a while. Then he left. We went inside. The girls were on a trial period. The deal was that if I heard one single fight between them then they’d get a smack. They’d already had two smacks this morning and so finally, after weeks of this crap, they were both making an effort to get along. I think they could both see how much both L and I are really over having to even wake up to this. So they were trying and the morning had turned around. I needed to clean the pantry and organize it as there have been mice lately. Usually we put everything in plastic containers because the mice never get inside the containers, but we’d been lazy for a while and sure enough I found some soft packets of different foods chewed up and so on, so it was time to get organised. I’d messaged mum last night regarding her part in organizing E’s Centrelink payments (a whole other story that has dragged on since she moved in but anyway). Mum replied today saying bla-bla-bla-bla-I’m-going-to-complicate-things-like-I-always-do-bla-bla-bla. In the end, E had to call Centrelink and see if they can photocopy the documents that have already been handed in by mum for my brother who is also dealing with them. So E did that when she woke up. Then she had to call the ATO to get her Tax File Number as she didn’t know what it was and Centrelink needs it. So that took another while. This whole time I’m cleaning the pantry and helping her out on the phone when she wanted me to (we have 2 handsets so I usually sit in on the conversation using the second handset and participate when E is having trouble explaining something or doesn’t understand something. She always lets the person on the other end of the line know that her sister is there as a support person). We finally got her stuff sorted. She had all these different pieces of paper with random scribbles on them. These random scribbles were actually all her important stuff, like bank details, TFN, CRN, medicare, etc etc. Details that are pretty important in life. I decided to ask her if she wanted me to type it all up in the one spot so that it would be easier for her to access, as well as the phone numbers of the organisations she may need to contact in the future and reference these ID numbers. She was happy with that. While I was in the middle of typing this, I suddenly remembered that we were meant to go IN to Centrelink today to hand in some of her documents. This had to be done before 3pm as she had a pending phone appointment with them at that time. It was 12:45 so we hurried about, all getting ready to go out, and headed out the door, into the car, to Centrelink half an hour away. Halfway there we remembered that her student ID card expired about a week ago and that Centrelink may not accept it as counting towards her ID points (each different kind of ID equals different points and she had to show up with a total of 100 points). So we start discussing our options etc etc. We talk about how maybe if she can just postpone her phone appointment to a later time today, we would have enough time to organise an 18+ card for her (she has no photo ID). We know that as it is, we only have one hour in town today, so when we get to Centrelink, I drop her off, then go with the girls to the nearest newsagent to buy some phone credit for E, as she’s had none since week 1 and I don’t think it’s fair to leave her without any credit (this is another topic again, because L doesn’t think we should be “funding” her - but she’s my little sister and as far as I’m concerned, we aren’t FUNDING her at all, we are simply providing her with her needs while she waits for Centrelink to sort itself out..... finally I put my foot down about the phone credit thing because it’s just wrong that she should be without any communications. L kept saying that she can use our home phone any time, which is true as long as she’s actually within the confines of the house - what if she goes for a walk and gets hurt?). By the time we were done with that, E was done with Centrelink so we picked her up and rushed off to Coles to buy some groceries and then to Target to buy socks. Turns out that Centrelink has given her two weeks to show up with an 18+ card so we didn’t need to try to squeeze that in today. All in all, it was a brief but enjoyable outing. I drove home at 120kms an hour to make it in the door RIGHT on 3 for this phone appointment. We got the groceries out, everyone was hungry, I walk in the door to see that I am still only halfway through organising the pantry!!! So I get onto that and simply put the TV on for the girls for an hour while I finish this now-really-annoying task. Finally Centrelink calls at 3:40 and I hop on the phone with E as support person like I have been the whole time in our dealings with them. On the way home, E and I had discussed her job seeking predicament: she’s in a rural area with no workforce experience AND she doesn’t really want to work in certain places because she can’t necessarily count money and she can’t stand certain noise levels or busy-ness. These things are a DIRECT result of her being born 16 weeks premature. I told her that she could tell Centrelink that she may need some support in finding a job because of these needs. She had agreed.

While on the phone, E was asked certain questions, like where she lives, where her parents live, why she moved away, etc. Then she was asked something else and she looked at me quizzically. E hadn’t as yet told them that I was actually on the line so I introduced myself and explained why I was on the line. The lady on the other end cut me off and said that this phone call was for E and that it was really difficult to have a conversation with two people. Again I explained my purpose in being on the line and she said that it was against privacy policy to have me on the line unless I had been specifically nominated by E to be on the phone. I said that nobody else had told us that in our dealings with Centrelink so far but no worries, I’d hop off the phone. I said that if E needed help with anything she could simply refer to me in person and that was that.

I felt offended at this lady. I felt like she just didn’t want to bother talking to two people on the line. I understand they have their policies, but why on earth hadn’t anybody else said anything? Was it because E herself had actually told them that I was on the line? Did I piss this lady off because I seemed to have popped out of nowhere? I continued cleaning the pantry and washing dishes and finally getting some food for the girls, who by now were starving. I also had some washing to hang. The house really was in disarray and it needed my attention. I set about doing these things. Some of them required that I leave the kitchen here and there (which is where E was having her phone conversation). As I walked back in the kitchen, I heard the last bit of E’s sentence, which was her telling the lady that no, she didn’t have any special needs. I was like, whaaaa? Did we not talk about this in the car? Were you not always at the SEC at school? Do you not have impossibly low vision without your glasses and you don’t know how to add up or take away? I was annoyed because by her not telling them that she could do with some support, she is missing out big time. By her not telling them that she could do with some support, their expectations of her will be completely different. We had also talked about this in the car. Suddenly I felt like I’d been slapped across the face. Why was she telling them the complete opposite of what we’d talked about earlier in the day? And for that matter, why didn’t she actually TELL the lady that she WANTED me on the line instead of letting me simply be booted off and humiliated like that?

It dawned on me that E simply doesn’t WANT me as a support person. It dawned on me that she DOESN’T see herself as actually needing help. It dawned on me that she WANTS to do all this on her own.

All of these things are of course fine in their own right - but why then lead me on with all this stuff? Why turn to me for all the help? Why assume I can be the fixer?

Of course she is allowed to draw her own boundaries, but COMMUNICATION, people!!!!!

Later on I heard her saying, “Hmmm.. I guess… any day is fine, I guess, because the girls are on school holidays, so.....”

Obviously they were asking her when is she available to go for an appointment. And because the girls are on school holidays, she is simply assuming that my days are as free as a bird!!!! Which it just so happens that they mostly ARE lol. But it’s the principle of it!!! She was put on hold for a while and I told her that she needs to ask ME when I’m free because obviously I’m the one that has to drive her to her appointments, and even though my diary may look empty for the week, I may have plans in my head to do things. I told her that while my in-laws are here next week, I won’t be available to run around for her appointments. I told her I’m not available on Friday afternoon at all. She then realised what she’d done so she asked me when am I available? So I told her: tomorrow, Friday morning and all day Monday. And that’s it. So when the lady took her off hold she then communicated that to her.

I went outside. I was hanging the washing and just felt … almost furious. This in itself took me by surprise. I suppose it’s because I’ve done all I can to help her and I KNOW I haven’t been overbearing with it. I’ve asked her if she wants me to do this or do that, and I’ve always waited for her replies and respected them! But seeing her try to do this on her own when I KNOW she could really do with a second person there, and seeing her outright not even stand up for me if that’s what she wanted, and then on top of that, seeing her simply ASSUME I’m at her beck and call for lifts...... it was just infuriating.

I KNOW that the way she gives answers will impact the kind of financial help she receives, and the kind of support she receives in other ways. She doesn’t know that, but I do!!! And it’s hard to sit here and watch her make these moves. She will either learn the hard way that actually, she DOES need support and help with some things - or maybe she’ll simply fluke it through life, never realising her shortcomings and mistakes.

I was also struggling with the fact that I am studying Disabilities of all things, and in my course it’s all about a person-centred approach. This aligns directly with my values and I have applied these things in dealing with my sister precisely because they are my values. But I didn’t realise how hard and frustrating it would be at times when she makes her own decisions. In reading it, about someone else, about a person I would possibly be getting paid to support, it sounds easy. But my sister? It’s a whole other kettle of fish! You couldn’t pay me enough to support her and still treat her as her own person. Because I’ve got it! I can do that, with ease! But emotionally, it was kind of taxing today.

I went for a jog with my music as loud as anything in my ears. I was mad. I felt cheated. And used. And angry.

Finally I calmed down and made my way home again. I went inside and got the girls to do their jobs and to tidy up the big mess. I tried to finish washing the dishes and then E came to offer help. I didn’t want her help. I didn’t want her in the same room as me. In fact, I felt like I just didn’t want her here at all. It all felt too hard. I couldn’t even look at her, knowing full well that she probably doesn’t even realise what she’s doing. I let her finish the dishes on her own and used that time to tidy up the rest of the house (there was a LOT to do). I was quiet. She noticed and kept trying to make conversation. She was looking at me as if she knew she’d done the wrong thing but I didn’t address it. I thought I would once I was calmer. Every time I pictured myself talking to her about it (ie “hey by the way, if ever there’s a time you don’t actually want me to be a support person, just say so -I felt humiliated today” kind of a line) my eyes would just well up with tears. I knew I wasn’t ready. Eventually she went quiet too and we were both kind of in our own worlds. She asked if she should make dinner, I said yes. She asked if she could use up this and that, I said yes. When dinner was ready, she asked if she should dish up straight away, I said yes. We ate dinner, mostly quiet. I was calm by now, but still not up for much conversation. It’s been on my mind for the rest of the evening.

I asked her to read stories for the girls, seeing as it’s my turn tonight to wash dishes and L’s at work. She did that happily and then I went in to sing to my girls and finally spend some calm, quiet time with them. I missed them today. I miss our easy days. I miss our life with no-one else around to kind of parent or to have to listen to or “entertain”. (Not that I ENTERTAIN her, I just mean “entertain” in the sense of… pretending to want to have a conversation when I’m exhausted and that sort of thing). It’s been 7 weeks and it’s the first time I feel like this. Clearly circumstantial that I should be feeling like this tonight.

I walked out of the girls’ room after a half hour. I got my shower things ready. I needed a nice, long, hot shower (thankfully it has rained heaps lately so I can give myself that tonight). I need a night of quiet. Quiet for the soul. Maybe some reading. Or maybe just some sitting. Yet I walk out to the lounge room and the TV is on yet again. You know, we explained to her before she moved that we actually rarely watch the TV, that we don’t have it on very often at all. If I’d known her better like I do now, I would’ve instead explained that we don’t WANT the television on most nights. I kind of assumed she’d get that. That it is actually our house and that if in THIS house we don’t watch much TV, then she probably shouldn’t either. But no, the TV goes on most nights. This to me is a stressing factor. It’s the end of my day, I don’t want to hear dramatic music or a woman screeching. I don’t want to glance over as I walk by and see a woman with a stern or stressed or worried or menacing look on her face. These things simply put me on edge. So I am going to have to talk to her about this and explain in a much clearer way that I DON’T WANT the TV on. It’s not “we don’t watch much TV at all but you can have it on every night”, it’s “we don’t watch much TV at all and we don’t want it on most nights so please limit your use of it.”

Part of me has allowed it because we already have decided to not let her use our internet. She hasn’t had any phone credit. So what else is she going to do? She plays guitar sometimes in the afternoon. She occasionally draws. She sleeps. She cooks and washes dishes and sweeps. What else is she going to do?

So.... I’ve allowed it. And in fact, the TV being on hasn’t been a major annoyance, it’s just been slightly annoying but I can deal with it. But on a night like this...... I REALLY. Need the quiet. As I said, quiet for the soul. So I’m here, in my room, like the old days. I don’t necessarily WANT to be in my room, I don’t “hang out” in my room. Alas… this is what it is for now.

You know, whenever she’s had to call an organisation for anything, we’ve had to talk about what she’s going to say beforehand. And if she forgets what she’s meant to say, she’s a mess of a mumbling person!!!!! Or if somebody asks her a question, she just can’t seem to answer in a direct, concise manner! She starts going, “[silence for a few seconds]...... um.......... oh..... yep, well… um…” and the other person gets impatient!! THIS IS WHY YOU NEED A SUPPORT PERSON. And it has helped in the past. I’ve even written down with a pen what she needs to say, and she reads it well. The other person wouldn’t even know she’s reading what she’s saying.

But whatever, flick me off. I’ll stay off if that’s what you want. Which clearly it is.

And really, good on you for wanting a challenge. Honestly, that IS a good thing.

Last updated April 08, 2015