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Today we went to the movies. The cinema was doing a one off showing of Star Wars: A New Hope. The 1977 'first' movie at 1pm.

 

They were having technical issues, so at 1.45pm asked everyone to either hang around or come back for 3pm.

 

We decided to go to the supermarket and get a few things, drop them home then go back to the cinema. 

 

So we get to the supermarket and get the electric wheelchair out of the car. I can drive myself, which I love.

 

Anyway, Wayne says he'll stay in the car. *sigh*  ok. no worries. 

 

Get closer to the actual building, Carrah says she's getting alcohol, then going back to the car.  Mmm. Ok.

 

Bit closer, and Connor says he's going to the loo.  I ask him to get a trolley when he gets to Coles.  He says he's not coming into Coles. Going to the loo, then back to the car.

 

I stop, turn around and go back to the car.

 

Wayne wants to know what's wrong. Nothing.  Put the wheelchair back in the car, please. 

 

What's wrong? NOTHING. 

 

What have I done?

 

No one wanted to come into Coles with me.

 

Well I didn't know the kids weren't going with you.

 

#$/&#*€#÷/^#@

 

Ok. You are supposed to be my damn carer. I cannot drive the wheelchair and shop and hold shopping and get back to the car.

 

Shopping wears me out, even getting a few things. 

 

They ALL know I can't shop on my own.

 

Left the supermarket without even going in, as I refused to get back out of the car.

 

Why are you crying?

 

BECAUSE I'M UPSET!!!!

 

I try to make few demands on my family, but fair crack of the whip.  Selfish selfish selfish. 

 

Now I have no loose leaf tea (don't do tea bags) until Monday.   I refuse to give in.

 

😢😢

 

💚🎂

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Can't say anything helpful because I was the caregiver, but do empathise with the thoughtlessness of kids, suffered with that a lot. Hope Wayne will have a word with the kids about lending a hand when needed. Hope the weekend gives you some time to maybe talk it over with him because talking does help sometimes.

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Bother bother bother super hugs from the east.  does your coles not have the wheelchair trolleys? Maybe ask the manager to get at least one. they hook to the front of your chair and let you do your own shop. at least for things that are within height reach.  And you get better at asking for help from strangers with practice. The checkout people are also good at lifting bags for you I've found, although mostly I can lift my own these days.

 

Yes Wayne and the kids should know, but next time explicitly ask "who is coming in with me?" before you get into the chair. They "just" forget that you can't do it alone. I know having to check is a pain and should not be necessary. But sometimes life is like that.

HUGS

-Heather

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Had another brain wave. NDIS should cover a support worker to take you shopping. It comes under core supports. It's not as flexible as just going when you feel like it, but takes some of the frustration out.  Given you have Wayne and the kids it may not have been included in your plan as NDIS will try to use free supports (family) whenever possible. But talk to your LAC and/or ask for a review if it wasn't included, your experience shows it is needed after all.

 

I'm funded for a weekly market shop. I can do it alone but it's difficult and slow so they funded it.  Haven't actually started doing it yet, but I did have this sort of support when I first left hospital.

Hang in there

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Thank you all.

 

Yes sue, disappointments don't get any easier to handle.

 

SueW, the kids are usually amazing, and knew I was really upset...after the fact.  And I'm not going to talk to Wayne.  It always ends with me making him feel better about the situation, and I'm done. I can't keep fighting battles I know will be impossible to win.

 

There is a wheelchair trolley, Heather, but I can't get it attached to the wheelchair alone. 

 

I'm not ready to be tied down to shopping times yet. And I'm pretty sure that kind of thing isn't in my plan, though I will check.

 

Kudos, by the way, getting your funding approved!

 

💚👑 

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yep save the energy for the battles that are worth fighting.  There's still problems with my funding, they left out a couple of really important things. That battle is yet to come, I'm not giving up, but I can use what they did give me in the mean time.

 

If you can't attach the trolley yourself ask a staff member to help. rock up to the service desk and ask for service. Also frustrating but less personal.  I know it's not in the same league but it took me ages to feel fine about asking shop assistants to open drink bottles for me. Most of them are really good about it.

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The staff at most of the shops I frequent are fantastic. I really feel the love. And yes, I should ask about help with the wheelchair trolley as I know they won't mind.

 

Sue, sorry I didn't mean to offend with my reply. I totally get the 'sometimes ' statement. 

I think I still need to have these talks, because as a caregiver you'll get this: it's hard for my family to understand my needs when sometimes I don't even understand them!

 

💚👑 

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Janelle hugs and love from across the world. Those moments of ENOUGH... I'M DONE! Oh have I been there. I realize why I have my dunce cap on when I do but I have a much harder time understanding when those around me wear theirs. After a while it gets tiring...and some moments I press pause too. It's not giving up or giving in but rather (imo) frustration and exhaustion from not being able to wake up any day - just one day without my new me all in my face. Haha if I could just poke her in the eyes like Moe from the Three Stooges. Sometimes, I just have to press pause on the situation and the people playing a part...even myself. Time to reclaim my inner peace, even if it means rolling my eyes at all the dunces in the room or even skipping my favorite tea because I refuse to "give in". We have our right to make a point! Haha one of the best things I have found is my inner "witch". Everyone else wishes I wasn't such a good (PI) lol and never found her. I've just learned to hone in on her witchy ways and to deliver with confidence and not anger. No one hears the angry witch but the confident witch lays down the "should be apparent" law beautifully! ❤️😘😆😀

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So very true Heather! 

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The Should Be Apparent Law.

 

Now THAT is something I'd like to see!!

 

Well said, Tracy.

 

💚👑

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