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Guys,
Living alone is not a choice for me. My family is like super protective of me and they will never ever let me live alone. And the truth is, I am not physically strong enough to live on my own also. My health is like a roller coaster and my stamina is next to zero.
So, living alone is not an option.
You do not say what state you're in or I missed it; however, are you not entitled to PCA services?Quote:
Originally Posted by Life&Roll
We all ride this roller coaster, some are buckled in better. Saying NEVER is NEVER an option. Have you contacted your local ILC?
Do you attend school?
All caregivers, even moms, require respite. Oh and stop identifying yourself as a patient. You're a beautiful young woman first and always.
I've witnessed this with a small percentage of SB kids as well. You CAN do it!Quote:
Originally Posted by jody
I don't know anybody with Spina Bifida who is living with their parents after they have been 20 years old. I don't know anybody with SCI either or CP. Sorry I am so blunt, but I think it is in your mind that you can't live alone.
Not to be brutal, but someday your caregiver mother will die or be disabled herself, and not able to be your caregiver. What will you do then? It sounds like she is already on the verge (if not actually) in a serious state of mental and emotional disability, and should not be your caregiver.
I strongly urge you to get some counseling and help through your local ILC. Get some therapy, start exercising, and build up your strength. Make a plan to learn how to do your own care, or at least teach a non-family member caregiver to do it, and take actions to get yourself into your own home.
(KLD)
I have Spina Bifida T11/12 since i"m a guy cathing is a bit different but I'm totally independent, live on my own and only need help with heavy/bukier items. I agree with what KLD says, you need a rehab stint with a good ot to teach you life skills, that's what I did and how I learned when I was 20.
That will be awesome! She will inherit the house and not have a dictator around so she will likely do more for herself. My impression is this person is capable of doing more, but has been contrained by her mother. She is not only a prisoner to her condition, but to her mother as well.Quote:
Originally Posted by SCI-Nurse
Life, do you have full use of your arms? If so, don't fear! You are capable of doing much for yourself in your home. I think your mother has you imprisoned mentally to her control.
As for finding a place to live, I side with you, I understand under financial constraints, there isn't much one can do. Hell! Veterans go homeless and we think crippled people somehow have a magic key?
hi life&roll,
im going to find you some video's that may inspire you to not be afraid to daydream about being more independent.
I like the lady in the first one I am posting. as you can see she has limitations, but is adapting her home for her living needs.
I will post more as I find them.
http://www.youtube.com/watch?v=TsW0x...eature=related
http://www.youtube.com/watch?v=Ji7TZ...eature=related
how about a salad?
Life&Roll, As Sarah's mother and primary caregiver, it is difficult. I still work fulltime and spend the most of my at home time with Sarah. I HATE so much that my daughter has her injury and needs the help of others. I do not HATE this for me....I HATE it for her. Yes, my life has changed to, but having my daughter in my life is most important. When I start feeling sorry for myself....I put myself in Sarah's place...then I easily snap out of it. We have all had to make sacrifices around Sarah's life change, but nothing like she has gone through and/or will continue to go through for the rest of her life. Please do not think that you are truly a burden to your mother. You are important and should not feel like your life is not worth living. Your mom needs to reach out and talk with someone. If she feels like that walls are falling in on her, she needs to get her anger out. As a mother, I would have to say that her anger is not towards you, it is because she can not change what you are going through.
Just to share some positive things in our lives....we are buying a condo for Sarah. She will be moving in approx 2 weeks - thankfully just about 2 mnutes from our house. It is very scary thinking about all of these upcoming changes, but it is what Sarah wants and deserves. She will have caregivers 3 times a day going forward. But she will gain the independence that she deserves. My selfish side....is going to struggle because I am going to worry about others taking advantage of her kindness....and my head is telling me that she can do this. She will gain more from me not being there every day - the more I do for her, the less she tries. I love her with all of my heart and I would change places with her if I could, just know that your mother loves you. It is just a hard thing as a parent.
Good luck to you and stay positive!