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    Old 10-08-2004, 04:40 PM   #1
    ouggaba
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    Sister with cp

    I have a 15yr old sister with severe cp. she is tube fed and not able to walk or nething. she is nonverbal too.
    thing is, she's getting sick more and more each yr. if she dies, i will kill myself. i cant live without her. ppl dont understand, they say it doesnt make sense b/c its not like my sister is able to communicate with me, but she is in her own ways. i feel so close to her, sometimes i thunk its wrong for me to love her so much. i would die for her. when shes ill, i cry for her b/c i wish she wouldnt be in pain. i tell my family that if she dies, i will die too, im only living my life for her so that she can have the perfect care. even when ppl like psw's come to get her ready for school in the morning, i cant stop criticizing them, i need everything to be perfect. its good i think b/c my sister has good care but yet its bad b/c i nit pick all these ppl.
    i wish she didnt have cp, maybe then i wouldnt love her so much....

     
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    Old 10-08-2004, 07:50 PM   #2
    Ailenne
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    Re: Sister with cp

    Ouggaba,
    I also have a sister with Severe Cerebral Palsy. Just like your sister, my sister is non-verbal and is tube fed. My sister and I have our own way of communicating aswell. I think that it is important to love your sister and care for her, but it's also important to be positive and when she get's sick, cheer her up by being upbeat. My sister has had many, many surgeries and my family and I always tried to stay positive... eventhough it is hard to see someone you love in pain.
    In regards to nit picking at everything your sisters support workers do, there's nothing worse than being critisized when you are trying to do the best work possible. I did support work for a few years and I was always very hurt when parents or siblings assumed I was not doing my job. It is good to watch out for your sister, but don't scare people off, then your sister will not have consistant care, people will be coming in and out of her life.

     
    Old 10-08-2004, 11:50 PM   #3
    brixey
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    Re: Sister with cp

    hi i have a 8 year old sister with cerable palsey . but you always need to have as much fun with her as you can my sister also hase epelepsey (seizers) on top of it i always keep a positive attitude..and enjoy her as much as i can.. ...keep smiling it will work out you may not think she understands everything thats going on but she realy does,and she knows you love her

     
    Old 10-11-2004, 10:09 PM   #4
    musicmaker650
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    Re: Sister with cp

    ouggaba,
    your sister is trying to teach you patients and tollerance. You sound pretty young yourself. Can, or do you help your sister with stretching and with other exercises and activities? It is important for your sister to be physically stimulated and as physically active as possible, on a daily basis. She will continue to get weaker and weaker, so learn to make each day count, and don't be so selfish. No one lives forever. Make your sister as comfortable as possible, and help her find her own happiness. Don't dwell on negative things, or thoughts. It's just not worth the effort. Saying things like "I tell my family that if she dies, I will die too" is foolish. There's also no such thing a "perfect care" You'll be a better, stronger person if you can get these things out of your head

     
    Old 10-12-2004, 05:10 PM   #5
    ouggaba
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    Re: Sister with cp

    Instead of making comments, perhaps u should ask questions or say nothing at all.

    Yes I do daily excersies w/ her, would YOU do them if you had/have a sibling with special needs? Now then, how does that make you feel (regardless of whether u do have a sibling with cp or u urself have cp....it doesnt feel nice does it) I think I have to be angry regarding your comments.

    I do her meds, feeds, bathing and provide stimulation for her through activities. I dont cry infront of her, im not stupid. Sometimes It just helps to get things out thats all, and seeing as I dont feel as though I can voice them elsewhere, I came here. Everyone has a bad day, I had mine because I came on this board, should have known better i guess, my fault. Thr first two replies were supportive or at least informative, but i felt as though you were very rude.

    And I dont feel as though its selfish to tell my parents that if she dies, I will too. I honestly dont have anything to live for except her. My father neglects her (doesnt give meds, verbally abuses her, ect). Thats why I know that i have to live, despite other things I go through b/c I cant let her be alone with him.

    Im so thankful for her and thank god everyday that I have such a special sister cuz she means the world to me, I love her like I would love my own child. From a completly adult point of view (yes im not a child), I would have no other purpose living on this planet other than to care for her as best as I can and know how.

    Im not concieted and I hope God never makes me that way. I dont expect a thank you from anyone for helping my sister. Its not a dutie, its what a sister should do for her sibling.

    How can you tell me that im selfish, i dont think you know me so its unmannered of you to make such assumptions.

    The reason I am so defensive is because I have a right to be. Your reply was completly uncalled for.

    Last edited by ouggaba; 10-12-2004 at 05:22 PM.

     
    Old 10-12-2004, 05:38 PM   #6
    musicmaker650
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    Re: Sister with cp

    ouggaba,
    you didn't state your age. You gave the impression that you still live with your parents, and from your comments you sound like you are younger than your 15 year-old sister. If you are an adult (18+) shame on you for your childish outburst. Your sister is a human being, and she deserves to be as happy and as fulfilled as she can. If she heard you say " i tell my family that if she dies, i will die too, im only living my life for her so that she can have the perfect care. even when ppl like psw's come to get her ready for school in the morning, i cant stop criticizing them, i need everything to be perfect. its good i think b/c my sister has good care but yet its bad b/c i nit pick all these ppl.
    i wish she didnt have cp, maybe then i wouldnt love her so much...."
    she would feel very bad. I know I would!

    This is being selfish to your sister, friends and your family. Unless you have the hiring and firing responsibilities with your sister's care givers, if I were you I would shut up and not critisize them... When your are with your sister, you can give her "perfect care" otherwise, get used to the care givers less than "perfect care". As I said earlier, there is no such thing as perfect care!

    If you came here for pity and meaningless praise, you won't get them from me. I know better. Get your mind in gear, and start loving your sister for who she is... spend as much quality time with her as you can. You are not doing your sister any good, spouting your attitude all over everyone around her. If your father ignores your sister, he probably feels guilty about her condition. This is common in some parents with disabled children, unfortunately. The verbal abuse is never appropriate from anyone

    Last edited by musicmaker650; 10-12-2004 at 06:05 PM.

     
    Old 10-12-2004, 06:46 PM   #7
    ouggaba
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    Re: Sister with cp

    he doesnt feel guilty about her condition, she isnt what she wanted, she's not a male. its difficult living w/ two daughters i guess. lol

    and yes I do have a say in which psw is allowed to work w/ her and which is not, problem is all the ones we have come across are like that.

    furthermore, everyone has their own definition of perfect. to me perfect is ensuring that she isnt gagging and vomiting while the psw is putting on her clothes - they need to communicate w/ her while they get her ready, but they dont. its hard work, i understand that. i dont believe that i criticize, but thats what they label it. letting them know what her routine is seems to be too much work for them. i tell them that its easy to forget things, and that they shouldnt hesitate to ask again or let me know if they are not comfortable with something, but they have their own way of doing things.

    also i dont understand why u expected that i came for pity or praise, i havent recently lost someone close to me, nor have I won an award of some sort.

    Your comments are being directed towards the wrong person and to the wrong situation because they dont apply. They are strong comments and could be valid if the situation you had created was in fact true. Im sure there are families out there that would benefit from your words, but they certainly do not apply towards me or my situation.

     
    Old 10-12-2004, 07:11 PM   #8
    musicmaker650
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    Re: Sister with cp

    "I have a 15 year old sister with severe CP. She is tube fed and not able to walk or nothing. She is nonverbal too. Thing is, she's getting sick more and more each year. If she dies, I will kill myself. I cant live without her."

    ouggaba,
    maybe a better way to say this might have been "I love my sister so much, that I'd gladly die in her place"... I would be lost without her"... I grew up around children with all sorts of physical problems. I took care of classmates like your sister, feeding, and attending to their daily needs in school. I have Spastic Diplegia CP... I am fortunate, I can walk and talk

     
    Old 10-12-2004, 07:33 PM   #9
    ouggaba
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    Re: Sister with cp

    I know that you have Spastic Dipilegia CP, Musicmaker. I have been on healthboards for quite some time in the past and have read your posts about driving lessons (which i was happy to read, people with all sorts of disabilities have been stigmitized for so long).

    I work in a respite and residential centre for children and youth with disabilities, although I dont know what the lives of people with disabilities is like, i have a small idea.

    I would gladly die in her place, but she has a tumour and the drs have given her max 5months to live. Although I pray that it'll somehow dissapear, its hard to keep faith. So of course id gladly die in her place, but shes terminally ill whereas I am not. This is why i'll go whereever she goes because the only other family i have is my father and im not too fond of him. lol

    I feel as though having a child with special needs is a blessing and she's enriched my life in so many ways. I dont think id be so open minded and appreciative if it werent for her (despite what others may believe).

    This is the problem with boards like these, unless you can talk face to face or via telephone with someone its easy to get mixed messages form both sides.

    By the way, im not asking for advice, im happy with my life and am not afraid of what may arise in the future (well trying not to be).

    I dont know how long ago those posts for the G2 were but good luck with that.

    Last edited by ouggaba; 10-12-2004 at 07:34 PM.

     
    Old 10-12-2004, 08:43 PM   #10
    musicmaker650
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    Re: Sister with cp

    So you know that your sister doesn't have much more time. I knew many kids that never made it to their 18th birthdays, so I learned to make the most of the time you have, and not waste time by getting mad or angry at situations in which you have no control. Sure it's normal to want your family and friends to live long happy lives... Love your sister and keep her as comfortable and happy as you can. This sounds so easy, but I know it will be very tough

     
    Old 10-13-2004, 03:11 PM   #11
    ouggaba
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    Re: Sister with cp

    Its not that tough, its actually quite easy for me. ON the other hand, i can only imagine how tough it must be for her.

     
    Old 10-13-2004, 03:25 PM   #12
    musicmaker650
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    Re: Sister with cp

    ouggaba,
    what was the reason you posted this message in the first place? Attention? Was it just to vent your frustration?

     
    Old 10-13-2004, 03:44 PM   #13
    ouggaba
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    Re: Sister with cp

    To see if anyone else had similar views.

    Not frustration really, im not frustrated nor should I have a reason to be.

    Attention - why would I want attention from people that I dont know?

     
    Old 10-13-2004, 03:53 PM   #14
    musicmaker650
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    Re: Sister with cp

    Ok,
    the way your post was written, I'm glad there wasn't many more replies... the two that concentrated on your attidude towards your sisters caregivers, and me, who concentrated on your whole post. You understand that you could have presented yourself better, and you do understand that there is no "perfect care" other than what you can give your sister alone?

     
    Old 10-13-2004, 04:10 PM   #15
    ouggaba
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    Re: Sister with cp

    Perfect care in my opinion, in regards to the situation is that people communicate with my sister so that she does not become ill. However, this is impossible. I am able to communicate with her, thus make her relaxed so that she does not gag. Therefore, I feel as though that is the "perfect care".
    Also, I agree with the fact that I could have presented it better but instead of jumping down my throat, you could have said nothing at all. You were abrupt and cruel in your remark,if it were another person who had posted this, they may have felt ten times worse because of you and it wouldnt have solved whatever it was that you were trying to solve.
    Lucky for me, I dont have any issues, therefore your first few comments didnt affect negativly at all. (u do understand that if this were a young child or adolescent in despair, they may have been ready to give up entirly on the world because your comment could have thrown them off the edge?)
    Wow, now im just babbling.
    You dont need to reply back musicmaker, this is going nowhere.

     
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