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.
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Caregiving mother in depression
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Originally posted by SCI-Nurse View PostNot 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?
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?
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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
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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!
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Thanks for your replies guys. This is really helpful and inspiring. But the truth is, right now, I can't leave the house because of both family and financial reasons. My mom gets nervous and my dad becomes restless even if I go out after 6 pm with my friends. It will take time for them to give me that much of freedom.
My parents are not keeping me as hostage or in their control. Apart from this issue, I am quite independent person and have a good time with my sister, dad and sometimes even with my mom.
Also, I can't leave my mom in the emotional state that she is in. She is already going through identity crisis since my sister left and if I ask to leave too, she might completely break down.
What I need is some help on how to make sure that my mom is out of this depression. I know therapy is an option, but I need to first get her out of this "rage and annoyance" state to get her to see that she needs help.
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What I need is some help on how to make sure that my mom is out of this depression. I know therapy is an option, but I need to first get her out of this "rage and annoyance" state to get her to see that she needs help.[/QUOTE]
Sadly, there is NOTHING you can do to get her out of rage and annoyance...she has to see for herself what is going on around her...it has been my experience that when I am over the edge and ready to jump I don't see the crap...often times when I experience my bouts I stuff all the thoughts and feelings and hide them...(put on the happy face so no one knows) now seeing that it is time for me to get back into therapy and a support...
group...perhaps your Mom is overwhelmed and has lost direction...maybe just show her this post...
Thank you for posting this, it has really helped me...I took a walk around my house this morning and came indoors in tears...I love to garden. and take pictures of my yard...everything has died...not a flower in bloom...not a butterfly one and last year at any time you could look out and they were everywhere...all I needed to do was water...and I'd tell myself I'd do it tomorrow...that is what depression does...it robs one of doing what they enjoy...
I hope your Mom finds the support she needs, maybe your Dad can assist with that too...I too worry about what will happen to my son when I'm dead and gone, which is why it is so important for you to do as much for yourself as possible...
My prayer for the longest time as I crawled in bed was Dear Lord, just let me live one day longer than my son...HOW FRIGGIN SICK IS THAT....today I know he has a life beyond what I could ever imagine and will be okay without me...
Just keep on, keeping on! hugs to you, judy
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Not to start a riot but your family doing so much for you is sort of a learned dependence/hostage thing in that you and they are convinced that you can't live on your own. What sort of health issues are you having? Shunt? Cord tethering, Urological or??
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Originally posted by canuck View PostNot to start a riot but your family doing so much for you is sort of a learned dependence/hostage thing in that you and they are convinced that you can't live on your own. What sort of health issues are you having? Shunt? Cord tethering, Urological or??
If I go out for 3-4 hours in a day and I find myself unable to even lift a finger the next day. So, its not like I want to be this way. Nobody WANTS to be where I am. But I don't have many options.
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I don't have an answer for you. I'm sort of in the same boat...Primary Progressive Multiple Sclerosis...my wife has to do more and more for me each month. She needed to go have a cataract removed the othe day, and tried to put the normal seat back into our (my...she says) wheelchair van so her friend could drive her. She wasn't able to do it...she came back in the house crying, saying "Its never about me...its always your stuff".
Could be your mom is going thru that...she needs something that's "about her" and not taking care of you.
I don't know how you can make that happen...heck, I'm trying to figure out how I can make that happen...but, that sounds like the problem.
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Originally posted by madmaddmother View PostSadly, there is NOTHING you can do to get her out of rage and annoyance...she has to see for herself what is going on around her...it has been my experience that when I am over the edge and ready to jump I don't see the crap...often times when I experience my bouts I stuff all the thoughts and feelings and hide them...(put on the happy face so no one knows) now seeing that it is time for me to get back into therapy and a support...
group...perhaps your Mom is overwhelmed and has lost direction...maybe just show her this post...
Thank you for posting this, it has really helped me...I took a walk around my house this morning and came indoors in tears...I love to garden. and take pictures of my yard...everything has died...not a flower in bloom...not a butterfly one and last year at any time you could look out and they were everywhere...all I needed to do was water...and I'd tell myself I'd do it tomorrow...that is what depression does...it robs one of doing what they enjoy...
I hope your Mom finds the support she needs, maybe your Dad can assist with that too...I too worry about what will happen to my son when I'm dead and gone, which is why it is so important for you to do as much for yourself as possible...
The only time that my mom is really happy is when she is decorating the house and making it prettier. So, that's why encourage her and motivate her to decorate our home.
You must find something that makes you happy to. And even if you don't feel like doing it, just force yourself to do it. Just tell yourself, "I will do it for 5 minutes. I can assure you, after one or two days, you won't be able to stop yourself from continuing the activity.
I am sorry about your situation, and hope that things improve soon for you.
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[QUOTE=Life&Roll;1396058] It will take time for them to give me that much of freedom.
Your statement about the parents 'giving me freedom' troubles me, along with your earlier statement that you are 'a spina bifida patient'. You are a person with spina bifida. From my own experience growing up with a significant disability, and my professional experience, I can see how difficult it may be for someone to develop the concept of independent living.
Our adult freedoms are there for the taking by ourselves, not granted by parents. You are free to stay in the comfort of your home and have others take care of you and make the rules of your life, but at what cost?
You sound very bright and able to figure out a plan to live an adult, independent life, with caretakers if needed.
Very best of luck to you!
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hi life&roll,
I have wondered how you are doing.
I found a blog. I like this guy, he has a lot of great idea's on staying independent.
http://lifedisabled.com/
Im not suggesting you move out though, just putting out some links you may be interested in.
I hope that things are going well and that your mom is feeling less stressed.
good wishes to you,
-Jody
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Originally posted by Life&Roll View PostYou must find something that makes you happy to. And even if you don't feel like doing it, just force yourself to do it. Just tell yourself, "I will do it for 5 minutes. I can assure you, after one or two days, you won't be able to stop yourself from continuing the activity.
If your Mom is depressed it may be over her fear of what will happen to you when she is no longer there. Once you add a few things she may feel better that you can learn and do some things on your own. That you know how to talk a paid caregiver through your care will also help. If you slowly add to things that require physical effort you'll have some exhausted down days. But as you add to the things that make you, you, like doing your own hair or make up you'll start to feel better yourself.
Is the bathroom you use accessible to you? To your height and needs not the helpers at home? That and a place in the kitchen made for your height are essential.
You can do it! And I hope your Mom can too.Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.
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