[frogga]

Hey...

Ok.. now I think that most of you know me.. (you need background to believe what an idiot I am..) - I'm 21 and have pretty severe full body RSD, dystonia and myriad other neuro/ pain/ rheumo/ whatever issues.

I have just done this counselling/ mediating course because it sounded interesting and I wanted to get more involved in volunterring. I am in college (uni) at the moment (full time!!) and I am studying for a BSc - so I thought that helping out would show that I am organised, empathetic and have good people skills (HAHAHA.. ) for future employers etc etc. Also, i figured it was a way to meet more people (I can't do sports, music or drama which were all my kind of thing, and I am at a uni with few other ways of meeting people - so though I have about 20 really good mates, you can never have enough :P -)....

However, I have just discovered that we are supposed to do 12 hour shifts -from 8pm till 8am... and, even worse, I am not allowed my carer - because the whole thing is done on a confidential setting (I'm not even allowed to say the name of the organisation)... Anyone got any ideas? I feel I can't really expect the other volunteers to take over my care.. and because I didn't want to be thought of as different I sort of didn't explain to what a huge extent my disability impacts on my life..

1) I can't go to the bathroom by myself
2) I can't do my tablets on my own
3) I can't get in to bed on my own
4) I can't roll over or transfer on my own
5) I can't hold a phone on my own
6) I can't feed myself
Do you see the issues? .....................................I don't want to give it up - so any ideas how I am going to manage 12 hour shifts with all of this would be great.. or how I'm going to get through 12 hours without a time out and a rest or two... I'm just embarrased to admit I need help, I have tried to break everyone in to it gently - by taking my carer along and letting her feed me in front of people I don't know (who I will be working with)...and seeing if they got the hint.. but they didn't really..

so HELP!!! PLEASE!!! because otherwise I am REALLY screwed and I don't want to give up something I have worked hard at to achieve...

Thanks!!!

FRxxxxxxxxxx

[moonstar]

hello...it is so nice that you want to help others with all you have going on with yourself...maybe your carer can sign a confidentiality form and that would solve the problem...the agency should not deny this small request..they should encourage you to be all you can be with some help... won't hurt to ask...you may be suprised....good luck..sending positive vibes your way... linda

[BroadwayBaby]

Not to point out the obvious - but it seems to me that the other volunteers are the sort of people that LIKE helping people - now I know that that might not mean that they want to provide healthcare, but they might! Why not talk to some of them and see if they have any background as caregivers...you never know!

Hi frogga,

You don't say what the shift involves in practice. I'm just guessing here, but assuming the confidential bit is the time you spend with the "client", (counsellee??) and discussing case details, then all the other activities are done in private to a lesser or greater extent, anyway - going to the loo, eating, etc - well, I do most of the things on your list in private, normally . If that's right, could you ask to have your carer with you somewhere out in the "office" area, but undertake to meet with the people in need of counselling, and have case discussions, on your own? Could you manage that? Then you and your carer could manage your own care "behind the scenes" in between seeing clients and supervisors - actually, that's how people with no disability would do it anyway. I'm thinking that a compromise should be possible.

I see why they need confidentiality, because the "clients" do need it...I would have a big problem going to see a shrink with someone else (who is there for their benefit, not mine) in the room too...I'm just looking at it from their point of view for a moment, you understand On the other hand, if the "clients" are told about the situation in advance, and agree to it, then that's another story.

Also, they might be able to come to a compromise regarding the length of the shift, and duties required. Perhaps if you spend more days/weeks there than they stipulate, but take on less per shift, or take longer breaks...maybe something along those lines.

If they won't take the hint and talk to you about it, then you will have to talk to them.......they must have, er...noticed..maybe they already know the answer, just haven't spoken to you about it yet - or think someone else already has... I really do hope you can resolve this, though, you'd be *really* good at it!

And, BTW, without wishing to relegate you to a stereotypical predefined "role", I can see a huge need for someone with disabilities in need of counselling to speak with someone like you - (bet there just aren't that many - are there even any, with hurdles like these to negotiate?) - there's nothing so reassuring as talking to people who've been through it all themselves. Bit like this forum

all the best!

[frogga]

well...

I had a talk with them... they have agreed that I can have my carer in for a bit in the evening for silly things like tablets etc (as they are controlled drugs I can't really let them give them to me until they have been shown or some such ridiculous stuff). They were really worried about confidentiality until I pointed out that my carer would have to know where I dissapeared too......... otherwise there would be issues! theyt have also agreed I can have them in the morning to help me get up (otherwise I will be stuck on a sofa bed). We aren't quite sure about the other stuff but they have agreed we can play it by ear - basically my carers can be on stand by in my flat and if I need them I will give them a ring.. until people are more confident with helping me if I need it.....

YAY.....

Rxxxxxxxxxxxxxxxxx

[LisaM]

Well, I say you work for the FBI. Does that mean you have to kill me now? OH DANG! Sigh....scatter my ashes somewhere pretty, would you dear? LOL!

Okay....you have to potty, you have to take your meds, you have to sleep and wake up, you have to talk on the phone (with your job, too, I would presume), and you have to eat (though if you don't eat, you cut out half of the potty breaks). WAIT! That's it! That's the solution!

Stop eating and drinking and you won't have to potty during your shift! As for your meds, you can PRETEND you're going potty, but wheel yourself out to the hallway and have your carer meet you there with your meds and you can take a dose during a break! There! Problems solved!



I see you already talked to them though. Yes, I do think it's AWESOMELY FABO that you are taking this on, with your disability and all. And I do agree that the ppl you work with will more than likely be more help than you realize cuz in order to work in a field such as that, they have to be caring and compassionate people who WANT to lend a hand.

And one question....why do you want to fight with pirates now that exams are over? That has confused the heck out of me since you wrote it! LOL!

Well done, Frogga,

That's the way to do it - get the foot in the door, and the rest will follow. Specially when they get a chance to see for themselves what's what...sounds like you've basically cracked it, any unresolved probs can be sorted out when the time comes...good on yer, girl!
all the best