[wheelchairbarbie]

Hey everyone,

I've come to this site a few times and it's been pretty helpful. Now I'm back and I have a dilemma.

I am 21 years old and I've been living at home forever. I'm so sick of always being at home and doing nothing. I have this dream life in my head that I want to like hop on a train and travel around some and go to clubs and concerts, and I get all excited thinking about how awesome it would be but then I realize "oh man, it's not quite so easy being in a chair."

I don't believe for one second that I should be held back by my chair, but I have no idea what to do in a situation like this. I don't want to have to take my mother (who is my immediate caregiver) everywhere with me, because I get incredibly sick of being around her all the time. And I don't want to have to rely solely on friends for help.

So here is a question for everyone:

How do I go away with friends for weekends without having to rely on them or my mom? Are there part-time care takers that you can 'borrow' or hire for things like this? Or what do I do??

If you were in my position what would you do?

Thanks in Advance everyone,

JEN~

[Tim13]

Welcome to the forum!
I think the temporary helpers you are looking for are called respite workers, you should be able to find one through a social services agency.
good luck.

[wheelchairbarbie]

Tim13, on Mar 26 2008, 09:59 PM, said:

Welcome to the forum!
I think the temporary helpers you are looking for are called respite workers, you should be able to find one through a social services agency.
good luck.

Would respite workers go on trips though? Say I wanted to go away for a weekend??

[Tim13]

Probably depends on them, my sister used to do it as a side job in college and
would take her clients to movies, weekend trips, pretty much whatever they wanted. Respite workers are there to give everybody a break, a lot of times that involves getting everybody as far away from each other as possible :-)

[wheelchairbarbie]

Tim13, on Mar 26 2008, 10:24 PM, said:

Probably depends on them, my sister used to do it as a side job in college and
would take her clients to movies, weekend trips, pretty much whatever they wanted. Respite workers are there to give everybody a break, a lot of times that involves getting everybody as far away from each other as possible :-)

Oh cool. I've heard or respite workers, but I was never really sure what they did.

[nomis]

A respite worker may be just the thing but you may have to hunt around to find one that comfortably fits into your plans.

Your friends, on the other hand, already know you and you have things in common with them. I'm wondering what is holding you back from allowing them to be your caregivers on a weekend adventure.

I appreciate it opens up the whole new level of trust with your friends and means you have to be totally open with them. It's a big step but can have incredible rewards for everyone.

[wheelchairbarbie]

nomis, on Mar 27 2008, 06:55 AM, said:

A respite worker may be just the thing but you may have to hunt around to find one that comfortably fits into your plans.

Your friends, on the other hand, already know you and you have things in common with them. I'm wondering what is holding you back from allowing them to be your caregivers on a weekend adventure.

I appreciate it opens up the whole new level of trust with your friends and means you have to be totally open with them. It's a big step but can have incredible rewards for everyone.

I don't know, there are a few things I don't mind having my friends help me with, but some of the more personal things would really bother me. I don't want them to have to feel burdened by being my friend.

[Tim13]

wheelchairbarbie, on Mar 27 2008, 04:19 PM, said:

I don't know, there are a few things I don't mind having my friends help me with, but some of the more personal things would really bother me. I don't want them to have to feel burdened by being my friend.

Know how you feel, i'd prefer somebody who is working for me to handle my care so i can feel free to have a good time with my friends.
I had to learn the hard way that "caring for the cripple" is very rewarding till everybody at the party is wasted and it's time to take Tim down the flight of stairs to go home.

[wheelchairbarbie]

Tim13, on Mar 27 2008, 01:49 PM, said:

wheelchairbarbie, on Mar 27 2008, 04:19 PM, said:

I don't know, there are a few things I don't mind having my friends help me with, but some of the more personal things would really bother me. I don't want them to have to feel burdened by being my friend.

Know how you feel, i'd prefer somebody who is working for me to handle my care so i can feel free to have a good time with my friends.
I had to learn the hard way that "caring for the cripple" is very rewarding till everybody at the party is wasted and it's time to take Tim down the flight of stairs to go home.

Haha this made me laugh, because yeah. My friends when they ask me to go out I say "Sure, as long as you can get me in and get me out without killing me I'll go."

Most places are accessible though, and ones that aren't the bouncers will carry me up the stairs. It's pretty sweet.

[firemaiden]

Hi Jen

I posted this link on another thread. It's an american site and I see you're from Canada but perhaps it will give you a starting point for the sort of things you can look up?

http://www.disabilit...ns/profiles.htm

Take care
C x

[wheelchairbarbie]

firemaiden, on Mar 30 2008, 07:42 PM, said:

Hi Jen

I posted this link on another thread. It's an american site and I see you're from Canada but perhaps it will give you a starting point for the sort of things you can look up?

http://www.disabilit...ns/profiles.htm

Take care
C x

Thank You

[youwhat]

wheelchairbarbie, on Mar 26 2008, 11:56 PM, said:

Hey everyone,

I've come to this site a few times and it's been pretty helpful. Now I'm back and I have a dilemma.

I am 21 years old and I've been living at home forever. I'm so sick of always being at home and doing nothing. I have this dream life in my head that I want to like hop on a train and travel around some and go to clubs and concerts, and I get all excited thinking about how awesome it would be but then I realize "oh man, it's not quite so easy being in a chair."

I don't believe for one second that I should be held back by my chair, but I have no idea what to do in a situation like this. I don't want to have to take my mother (who is my immediate caregiver) everywhere with me, because I get incredibly sick of being around her all the time. And I don't want to have to rely solely on friends for help.

So here is a question for everyone:

How do I go away with friends for weekends without having to rely on them or my mom? Are there part-time care takers that you can 'borrow' or hire for things like this? Or what do I do??

If you were in my position what would you do?

Thanks in Advance everyone,

JEN~

hehe Sounds alot like what goes through my head everyday! I personally find it hard at the moment to go out without people literally enforcing the help on to me but they are nurses or work at the hospital in general anyway so I guess that's just instinct on thier part! My father is my carer (lost my mother at an early age) and although we get along great I would love sometimes just to have a bit of space! I wouldn't know what to suggest exactly to be honest, still new to this game... and can't find the reset button!

Good Luck in finding a respite carer that could suit your needs, that doesn't sound like a bad idea at all actually!

[steveB.O.P]

I am a care giver in new zealand who was ready to quit because i found working with elderly
people and watching them deteriorate was emotionaly challengeing to the point it was just to much for me.
Luckily i was offered work with a young guy (c5/c6 incomplete) and became involved with spinal care.over the last 2 years i have been involved with wheelchair rugby and had the opportunity to meet alot of people motivated like yourself to explore life and make the most of it.
I have gone from working a 9 till 5 type existence which drained me emotionaly to being able to be apart of people's achievements. I have also taken the opportunity to upskill myself and am now a qualified personal trainer/ massage therapist/ swimming instructor it took a while for me to find my nitch but now i have ....well here is a few examples of what i have been involved with lately, 3 days up the snow fields with sit ski's, white water rafting, indoor rock climbing, four trips away with the wheelchair rugby team and we fly down the south island next week for a competition then when we get back i go on a 2 day adventure activity course,my normal weekly stuff involves rugby practice twice a week plus 2 extra training sessions with a group of players wanting to improve there sports fitness (sometimes down the atheletics track and sometimes in the pool). and i have just met another guy who is looking for a male carer so he can get back into his cars and his fishing.
So life for me involves spending time with motivated people, sports, adventure activities and now cars and fishing as well. Personaly my own life is a lot more fullfilled and emotionaly stable and while that on its own is is a great reward being in demand means im alot better of financially as well.
So good luck in your search we are out there
ps students often jump at opportunities for a little extra income, a free weekend away or concert ticket, help getting experience and hours up towards their course just get them in for a couple of shift's before you go away to make sure of them.

[wheelchairbarbie]

steveB.O.P, on Apr 7 2008, 09:06 PM, said:

I am a care giver in new zealand who was ready to quit because i found working with elderly
people and watching them deteriorate was emotionaly challengeing to the point it was just to much for me.
Luckily i was offered work with a young guy (c5/c6 incomplete) and became involved with spinal care.over the last 2 years i have been involved with wheelchair rugby and had the opportunity to meet alot of people motivated like yourself to explore life and make the most of it.
I have gone from working a 9 till 5 type existence which drained me emotionaly to being able to be apart of people's achievements. I have also taken the opportunity to upskill myself and am now a qualified personal trainer/ massage therapist/ swimming instructor it took a while for me to find my nitch but now i have ....well here is a few examples of what i have been involved with lately, 3 days up the snow fields with sit ski's, white water rafting, indoor rock climbing, four trips away with the wheelchair rugby team and we fly down the south island next week for a competition then when we get back i go on a 2 day adventure activity course,my normal weekly stuff involves rugby practice twice a week plus 2 extra training sessions with a group of players wanting to improve there sports fitness (sometimes down the atheletics track and sometimes in the pool). and i have just met another guy who is looking for a male carer so he can get back into his cars and his fishing.
So life for me involves spending time with motivated people, sports, adventure activities and now cars and fishing as well. Personaly my own life is a lot more fullfilled and emotionaly stable and while that on its own is is a great reward being in demand means im alot better of financially as well.
So good luck in your search we are out there
ps students often jump at opportunities for a little extra income, a free weekend away or concert ticket, help getting experience and hours up towards their course just get them in for a couple of shift's before you go away to make sure of them.

That's really cool. And yeah, I would like to be able to find someone relatively young that would be willing to go on trips and such with me.

[steveB.O.P]

just been talking with someone who said when they go away they use agency staff for their personal cares and just rock on out with their friends for the rest of the time.
Do you have agencies over there who can provide staff.

[Mike (c4-5) & Lorena]

wheelchairbarbie, on Mar 26 2008, 06:56 PM, said:

Hey everyone,

I've come to this site a few times and it's been pretty helpful. Now I'm back and I have a dilemma.

I am 21 years old and I've been living at home forever. I'm so sick of always being at home and doing nothing. I have this dream life in my head that I want to like hop on a train and travel around some and go to clubs and concerts, and I get all excited thinking about how awesome it would be but then I realize "oh man, it's not quite so easy being in a chair."

I don't believe for one second that I should be held back by my chair, but I have no idea what to do in a situation like this. I don't want to have to take my mother (who is my immediate caregiver) everywhere with me, because I get incredibly sick of being around her all the time. And I don't want to have to rely solely on friends for help.

So here is a question for everyone:

How do I go away with friends for weekends without having to rely on them or my mom? Are there part-time care takers that you can 'borrow' or hire for things like this? Or what do I do??

If you were in my position what would you do?

Thanks in Advance everyone,

JEN~

Jen,

That's a tuff one. To get away, I went to collage. It was very hard to find reliable attendants. Once I was more comfortable with my attendants I started exploring. 10 plus years ago not al ot of hotels, etc were wc-friendly. But I became a huge book worm as my goal was to get good grades, get a real job, then move out completely. So, I had fun but not very often

Mike

[wheelchairbarbie]

Mike (c4-5) & Lorena, on Apr 12 2008, 09:41 PM, said:

Jen,

That's a tuff one. To get away, I went to collage. It was very hard to find reliable attendants. Once I was more comfortable with my attendants I started exploring. 10 plus years ago not al ot of hotels, etc were wc-friendly. But I became a huge book worm as my goal was to get good grades, get a real job, then move out completely. So, I had fun but not very often

Mike

I did go to college and I stayed in an apartment, but my mum had to stay with me because we couldn't afford for someone else to stay with me!

[teaser]

hi Jen

i agree with Nomis....

my best friend is a quad/tetra and i say, give your pals a chance to show what kind of pals they are. i guess if the situation was reversed you'd be happy to do stuff for them so give them a chance to do stuff for you.

it sounds like you have friends who are friends with "you" rather than because of all the stuff that comes with you (catheter, chair etc etc).

it does take time, and it is a bit strange at first cos i never expected to be doing some of the things that i do, but actually, i'm quite impressed with myself that i can do these things. it's given me confidence in myself and for that i am grateful to my quad/tetra friend. it feels quite an honour... ok, i'm no saint and sometimes it's a drag but not often... the good times far outweigh the bad about 9 to 1!

i would much rather go away with my friend with just us (and whichever other friends we want to go with) and do the stuff than have someone come and "care". none of us are independent actually, we all need friends (just most of us ABs get away with looking independent!), i need my pal as much as my pal needs me .

have fun, take care

T