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Posted on: Wed, May 7 2008 12:57 AM

Posted by: aspie Posts: 5

I hate the fact that, at this point in life, I have to have a caregiver. I'm 27 and would rather be on my own. I would rather not need Mom as much as I do. It's so draining on us both.Unfortunately, finances and my mental & physical states will not allow this.

 Does anybody else out there feel similarly?

Posted on: Wed, May 7 2008 12:58 PM

Posted by: brucec3 Posts: 146

I too am in a similar situation,I am married but my wife has her own life away from home,she just sleeps here. I get very frustrated when she thinks I can do things like I used to ( before the strokes) and sometimes ignores the fact that I am disabled. I sometimes wish I lived alone, but there are too many things I can't do.

Posted on: Wed, May 7 2008 5:19 PM

Posted by: KarenZelinsky Posts: 28

Hi I was thinking I was getting to be the only one to. I lost so much I lost a job I love I am was a hopice nurse and driving and family and friends and more I got divorce in the middle of my accident my 2nd one by the end he was abusive to me and I have been raising a son since he was 5 1/2 months old alone I was married young that was 11 years than alone got married in Dec 99 we are both nurses he is also an peace officer and by the end and I was already hurt he had came home after alchol rehab that lasts a year he says he cd be where I was going. He got 3 DUI # child indagagment  with my son I had him arrested to finish out house arrest because of abuse my son asked me to make him leave I didnt know what was going on I was in bed I hav RSD a never damage I am in pain 24/7 there is 3 stages Im in the 2rd stage but Im not where they say I should be yet oneday maybe my body will shut down and I will be in a ball but Im having some shutting down and its in the part of the brain where the pain is. I fell off my brothers deck he didnt finish but didnt know that in June 14 2003 I broke 5 bones in my foot and dont laugh no go ahead I have to or I cry I just turned 40 yrs old but dont look it my son is in 10th grade people were asking him who his girlfriend is in the wheelchair he said thats my mom yes wheelchair I was on crutches for a year and I am in a chair now and I still have my cast on all this time I have lost to much bone. The court gave me our house our van eveythiing he only got his car before we got married he bought me a sports car 6 months before my fall I had to get an SUV he smashed that with my son in it then we had to get this van I cant work and I dont sleep and Im down to less than 100 pounds my family is made at meI live a couple of minutes from my mom and she is great with my son but not me it is different.A year after my fall we were in money trouble I had to go after my brothers homeowners insurance well I havent talked to my brother since the day I fell and my mom is mad because I did that to my brother. I am being punished for trying to live .It took 40,000.00 to get divorce he was hiding things from me I think he well it is okay. inaway my son is going to go to college and he has anxity disorder and touretts and I found out he needs heart surgery all of a sudden. I lay in bed 22 hours or more a day I was with someone a great man 10 years older we were going to move to Orgeon he brought a new bussiness I was going to buy the house we had 3 kid he had 2 than 1 mine. He left before me we had to wait to move I was divorce but we didnt do propertyy yet I wanted to move on with life the best I could. He didnt care I was in a chair he was wonderful he was a photographer I uesd to model younger. He loved taking pics of me in away I went up there without my son for two weeks I couldnt take my son out of state yet I came back to finsh the court things in Jan end of Feb he broke things off. Dont know never got a reason after over a year together. So that left me and my son here in Pismo Beach Calif. me in a chair didnt couldnt drive for almost 4 years because its my right foot and lost to much money to have help and I pay for insurance my insurance and medical ins. wont pay for help here and my mom retaired a few months ago she cant deal with me in a chair she said she can I just brought a 2500.00 made special chair. light and I love purple so I picked purple I learned to drive left foot to about 10- 20 minutes but Im starting to not feel my feet but pain. My son is the one that is helping me I have to sell my house but my mom and stepdad wont let me and my son come live with her so I can get have some help but I dont want it either I started taking photos I use to I live in a beutiful place but no friends no help from family all my 16 year old son that knows he is going to be the one to find my not breathing anymore. He told me that he doesnt want anyone to touch me him first.

I still am alive but am in so much pain 24/7 people will RSD sometimes before this end there lifes I wont because of my son but I think about it sometimes. All I ever wanted was a husband and child  I have one but noone to love and they love me back. I am so scared about money and not having friends college for my son sometimes everything. I dont want to be alone anymore. But I totally understand what you are saying. I have to have help and I used to be the one who was there for people and I need it and dont have it.

Sorry so long.

I want and need independence but dont have it I miss it so much I am so scared I just want my life back even if I was just in a chair I might handle it but noone ealse can but pain so bad I wake up and dont sleep and eat and chair and no enegery. I live in a wonderful place put cant go to the beach people look at me different I wont have a pic of me in my chair intil a week ago as soon as I can I am going to add it to here and other places myspace ect I do when I can help non-profit foundations for RSD but there isnt anyone here or anything. We ost founding for handicap things or I keep looking but how do I get there?

If you would like to email me or go to my page Im here. The Pics of me with my dog sitting is me now. Me with red hair was in Orgeon in 2006. I am going to add somemorre pics I took here I have a new laptop without my pics on it yet so I have to get photoshop first to put my pics here but the main pic is me now. But anytime you would like to talk let me know if you do I totally understand. both I read yours and the other persons to I feel the same.

Take Care  

KarenZelinsky

Posted on: Wed, May 21 2008 7:31 PM

Posted by: katesmum Posts: 4

My daughter feels the same way you do. She is 21 and has always needed total care. That has been her cry all her life. She has a  morning and evening caregiver who gets her up and puts her to bed. 2 weekends a month a van and a caregiver take her out. But, I am always around. She will be going to college this fall or winter and she can't wait. She has felt trapped all her life. We have only had help since she was 18. Can you get any agency to provide you a caregiver to give you a break from your mothers constant care? It would be good for both of you. We understand how frustrating it can be. We live in PA and because she has an Access Card and now collects SSI, she can get some help.