[ericck]

my name is erickk.i am married but i have a fear about what would happen if for some reason i was by myself.could i still be independant. i am still young and dont want to go to a nurseing home.is there any quads who live on there own with the help of a live out caretaker? what r your challenges and hardest things to overcome?

This post has been edited by ericck: 29 August 2006 - 04:41 AM

[LadyPilot]

When I was first injured my then boyfriend stuck by me and on my release from hospital we got married.
He did practically everything for me. Then I got my compensation and he started to go and live his own life at my expense. I was left alone for hours on end and through this I began to find that there were things I could do which previously I hadn't. I took one challenge at a time (likened to how do you climb a mountain? One step at a time). The hardest challenge was getting in and out of the bath.

Over the course of five years I nurtured a temper focused inwards on myself. I used my temper to force myself to achieve things and little by little I got the strength and good use of my hands back.
My marriage was a shambles, my (ex) husband was living the high life with a string of affairs (paid for by yours truly) but I reached a point where I was ready to take the chance on "being on my own".
My ex couldn't believe I'd got my independence back or that I could live without him but I went ahead and divorced him.

I was right and lived alone without needing anyone to care for/help me. I remarried four years later. Now Im more a para than a quad, but realise my injury is lower than yours and maybe I have just been very very lucky?

[DaveP]

I'm also one bone lower than you but have managed to achieve independence. It took me a couple of years to start to become less and less reliant on others, for example, tying my shoe laces, doing buttons up, holding a bottle of beer, pouring a bottle of wine, uncorking bottles... It takes determination and being hard-headed, and refusing help from well-meaning people, such as being pushed when you can push yourself.

The more you do, the stronger you will become. The stronger you become, the more things you can do for yourself. You'll find new ways to overcome things but don't get in the lazy habit of looking for short cuts.

Get a soft ball that you can squeeze to exercise your hands - you'll get bored of it but it's important exercise for your hands, and the muscles that work in you hand and forearm will get stronger and start to compensate for those weaker muscles.

I've said it before but rehab and post-rehab is like Basic Training in the Army - the harder the training, the better the soldier that comes out the other end.

[swank]

Hi, my quad guy(C4/C5) lives on his own.. he has a housekeeper that comes in everyday for the day to day chores and two care takers, who releive each other every 2nd week that stay in to assist him, he is totally independent from his family and friend and loves it

[livewriter]

I lived alone for 12+ years by trading room for help with college students. Married now but it's possible. had ppl come and go. just have to learn to negotiate, comprimise, and swallow your pride sometimes.

[ericck]

thanks for the posts that i got so far.swanks was the one that encoraged me the most because i do need help to get out of bed.lucky there are microwaves.livewriter i can only imagine how u could live on your own for 12 yrs.now that i know its possible i feel better.the only thing that i need now to complete myself is finding a job that pays,i cant pay bills with monoply money LOL.ive been going to reiabilatative job services trying to find something for 6 months nothing so far but still trying.anyway back to my topic i have a nice caretaker who gets me up in the morning fixes my food then leaves and comes back at nite to put me in bed.she gets 66hrs a week these r hrs that i get with my spouse so she can work if i was on my own would i get more hrs or less hrs?

[ioio]

Hi there

Many thanks to all who replay to this message. I'm a C5, and my biggest dream is to live alone, without any help. Now my parents are helping me, but that's not fair.

I'm rally interested about livewriter experience. Can you share more details?
How did you room mates help you..just for transfer, or more...?

Sorry from my bad English is not my native language. I'm from Romania.

This post has been edited by ioio: 15 August 2008 - 08:46 AM

[Kevin613]

I'm curious about living independently as well. I'm currently living with my parents, but that's not going to last forever. Are there any people with quad level injuries on this message board that are able to live on their own (particularly those with complete injuries)? If so, I would really like to know more about how your care is provided.

[Jennii]

LadyPilot, on Aug 29 2006, 02:37 AM, said:

When I was first injured my then boyfriend stuck by me and on my release from hospital we got married.
He did practically everything for me. Then I got my compensation and he started to go and live his own life at my expense. I was left alone for hours on end and through this I began to find that there were things I could do which previously I hadn't. I took one challenge at a time (likened to how do you climb a mountain? One step at a time). The hardest challenge was getting in and out of the bath.

Over the course of five years I nurtured a temper focused inwards on myself. I used my temper to force myself to achieve things and little by little I got the strength and good use of my hands back.
My marriage was a shambles, my (ex) husband was living the high life with a string of affairs (paid for by yours truly) but I reached a point where I was ready to take the chance on "being on my own".
My ex couldn't believe I'd got my independence back or that I could live without him but I went ahead and divorced him.

I was right and lived alone without needing anyone to care for/help me. I remarried four years later. Now Im more a para than a quad, but realise my injury is lower than yours and maybe I have just been very very lucky?

I really admire you. I just had to say that.

[Jennii]

Yes! I too would like to know more from anyone else.

[Scribbler]

LadyPilot, on Aug 29 2006, 10:37 AM, said:

When I was first injured my then boyfriend stuck by me and on my release from hospital we got married.
He did practically everything for me. Then I got my compensation and he started to go and live his own life at my expense. I was left alone for hours on end and through this I began to find that there were things I could do which previously I hadn't. I took one challenge at a time (likened to how do you climb a mountain? One step at a time). The hardest challenge was getting in and out of the bath.

Over the course of five years I nurtured a temper focused inwards on myself. I used my temper to force myself to achieve things and little by little I got the strength and good use of my hands back.
My marriage was a shambles, my (ex) husband was living the high life with a string of affairs (paid for by yours truly) but I reached a point where I was ready to take the chance on "being on my own".
My ex couldn't believe I'd got my independence back or that I could live without him but I went ahead and divorced him.

I was right and lived alone without needing anyone to care for/help me. I remarried four years later. Now Im more a para than a quad, but realise my injury is lower than yours and maybe I have just been very very lucky?

Ladypilot,

Your story brought a tear to my eye; a sad story with a happy ending due to your determination and courage. I admire your spirit and hope it inspires others.

I've no knowlege of the American health care system other than you need to pay for the best care. I'm C4/5 and live in my own home supported by Live-In PA's who look after all my care needs. This is funded, partly by the Government, partly by my local Social Services plus my own contribution, which is means tested.

There are lots of things I can and will do for myself but they are just small things. I'm unable to transfer, dress myself or cope with my bowel care, which are the major things, but once I'm up in my chair and mobile I can put my mind to anything. It may take me ages to do a simple task but I love a challenge as my whole life has been filled with challenges.

Write down all the care needs you require and try them out on your own one at a time. You will need to adapt to change, be patient but most of all be determined.

Good luck

[qbounce]

Hi all. I had a similar situation to beautiful Ladypilots, except MY ex was a drug addict and alcoholic.

I originally divorced her just 1 month before my injury. Then, afterwards she somehow miraculously STOPPED drinking. I noticed how much better she appeared to be doing, and 6 months after my SCI she moved back into the house we once shared. There was still enough time to put the divorce on a kind of 'stand by' status, while we did another trial.

Unfortunately old habits die hard, and she started dipping into my Vicodin pills little by little. I had a live in carer at the time, and I was slowly working on doing things on my own. One year passed and I had to cancel my pain meds to keep my then wife clean. I was only taking them whenever I went out for any length of time, so I down graded to Extra Strength Tylenol, instead.

Well, seems you can get ANY form of medication online nowadays, and you don't need a perscription to do it either!! The online pharmacies provide a quak doctor for you to get any addictive medication you need, at full value!! Our credit card bill went up to $800+ a month over the course of time, and I'd had enough of her mood changes and crazy, problem causing situations.

She FINALLY left for good just about a year ago, and now I'm cooking, cleaning, and working on the things I couldn't focus on before. If you're in a bad relationship that causes you to loose focus on the importance of getting YOURSELF better, get OUT of it while you can!!

I live alone now, with a carer that comes 4 hours a night to help me with bp and shower, stretching, etc. I'm chipping away at trying to do my nightly routine so I can start dating my new found friend (the wonderful caregiver means MUCH more to me than just a good hot meal . . . although, it sure doesn't hurt either)--lol

[Picnic]

LadyPilot, on Aug 29 2006, 10:37 AM, said:

When I was first injured my then boyfriend stuck by me and on my release from hospital we got married.
He did practically everything for me. Then I got my compensation and he started to go and live his own life at my expense. I was left alone for hours on end and through this I began to find that there were things I could do which previously I hadn't. I took one challenge at a time (likened to how do you climb a mountain? One step at a time). The hardest challenge was getting in and out of the bath.

Over the course of five years I nurtured a temper focused inwards on myself. I used my temper to force myself to achieve things and little by little I got the strength and good use of my hands back.
My marriage was a shambles, my (ex) husband was living the high life with a string of affairs (paid for by yours truly) but I reached a point where I was ready to take the chance on "being on my own".
My ex couldn't believe I'd got my independence back or that I could live without him but I went ahead and divorced him.

I was right and lived alone without needing anyone to care for/help me. I remarried four years later. Now Im more a para than a quad, but realise my injury is lower than yours and maybe I have just been very very lucky?

I have lived away from my parents since 2001. First in a sort of shared living environment with 3 other disabled people, with 5 carers who worked on a rota.

For the past two years I have lived in my own purpose built flat. When I first moved in till 3 weeks ago I had 4 visits a day from carers, 4 visits a day from community nurses to manage my nursing care plus a sleep-in carer every night.

I didn't have much of a life unless my family took me out but now I have recently got a live-in carer/PA and its great. They can take care of my social, personal care and nursing needs.

This post has been edited by Picnic: 07 October 2008 - 10:19 AM

[Picnic]

Scribbler, on Aug 14 2008, 09:51 AM, said:

I've no knowlege of the American health care system other than you need to pay for the best care. I'm C4/5 and live in my own home supported by Live-In PA's who look after all my care needs. This is funded, partly by the Government, partly by my local Social Services plus my own contribution, which is means tested.

There are lots of things I can and will do for myself but they are just small things. I'm unable to transfer, dress myself or cope with my bowel care, which are the major things, but once I'm up in my chair and mobile I can put my mind to anything. It may take me ages to do a simple task but I love a challenge as my whole life has been filled with challenges.

I have had such a fight to get my Live-In PA and I am still having a few 'teething' problems. I was wondering if you had encountered any difficulties when setting it up?

Thanks
Nic

[allis53ca]

i'm a c-5 and been alone for 3.5 of my 5 in chair ....i haven't had any outside help for 2 years...its not easy, but not too hard either...just alot of work

[Scribbler]

Picnic, on Oct 7 2008, 11:24 AM, said:

Scribbler, on Aug 14 2008, 09:51 AM, said:

I've no knowlege of the American health care system other than you need to pay for the best care. I'm C4/5 and live in my own home supported by Live-In PA's who look after all my care needs. This is funded, partly by the Government, partly by my local Social Services plus my own contribution, which is means tested.

There are lots of things I can and will do for myself but they are just small things. I'm unable to transfer, dress myself or cope with my bowel care, which are the major things, but once I'm up in my chair and mobile I can put my mind to anything. It may take me ages to do a simple task but I love a challenge as my whole life has been filled with challenges.

I have had such a fight to get my Live-In PA and I am still having a few 'teething' problems. I was wondering if you had encountered any difficulties when setting it up?

Thanks
Nic

Hi Nic,
At the beginning I did have a fight to get the care package I needed. I contacted SIA who fought my corner for me. By law, your Social Services have a legal obligation to give you that care. Just hint that the press and media will be involved, that gets them worried. I also had a brilliant Social Worker who also fought my case for me and got me the care I'm still receiving. Once its set up, its quite simple to manage, as long as you don't get lazy and let your paperwork mount up.
If you need anymore info, just send me a private mesage.
Mike

[Quadzillar]

one of my mates is C5, hes quite independant. puts alot of people to shame even me

undresses n puts himself to bed, showers and dresses himself. i think he even puts his domes on lol
i have no idea how he puts his shoes on lol i tied his shoelaces with my left hand once, just to piss him off lol
hes married, prepares, cooks dinner and does their dishes
drives and pulls his chair apart to put in the car

The only thing he has problems with is putting in suppositories and doing floor to chair

Has housekeeping to help him out for other things like laundry, general cleaning and large grocery shoppings or if in a hurry
this guy also works like 25hr aweek

I think it helps if you have patience and organised

the other c6, c7s i know, we are all much independant. i have housekeeping twice aweek, that about it
if theres a will to do it, youll find a way. its hard at first.. but well worth the time and effort