sister losing her ability to walk
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| Wed, 04-25-2007 - 9:49am |
I have posted here before. My sister is 20 years old and has Muscular Dystrophy. She now lives in a nursing home. Now she is losing her mobility. I hate this disease! This time it is progressing so fast. It has been so hard watching her life be just a long road of difficluties! And I can't even imagine what it would be like to be 20 and live in a nursing home. I mean, how would you feel to need your peers to help you with all of your bodily needs.
And the nursing home is used to having 80+ year olds who are at the end of their life, so if they don't get walked to dinner it isn't as important (forgive me for saying that), my sister is 20 and if she doesn't use it she does loose it!
I don't know how she is so strong and doesn't just give up, I think I would.
I can't imagine my mind being sharp, knowing exactly what is happening, and not being able to control my body.
I am ashamed to say that it is easier for me to be far away. I really don't want to face it, I want to be angry at somebody. This is not fair.
And through all the years my sister has never wanted to share with me, she has always wanted to be normal to me. The same with her church, she doesn't want them to know how bad it really is, and up to this point she has refused to go in her wheelchair to church. My mom said that yesterday she broke down, because she knows that the point has come that she HAS to take her wheelchair. She is afraid that people will be dissapointed in her (someone at church told her that she just needs to have more faith and God would heal her- ahhhh).
Don't know what else to say, just come here to vent. Thanks.


As someone with a mildly handicapped parent who just lost a relative in a nursing home, I want to give you some free advice (worth the price; don't get angry if you decide there are reasons not to take it, but if you haven't, then these are thoughts for consideration).
1). SOMEONE has to be there with your sister. Few nursing homes are able to be so good that they'll really take proper care unless someone is there a LOT and keeping them honest. Or see if your sister can hook up as a buddy with someone whose problem is not mobility. But make sure she isn't being ignored. (This is the "I wish I'd known" from the nursing home.)
2) The old saying is "Don't ignore the elephant in the room". Sure, your sister wants to be "normal". Everyone does. The fact is, individual problems of one kind or another are are completely normal and hers have to do with mobility. You help as needed and available, without pity, but just as an honest response to a "situation", still valuing your sister as an intelligent, capable person. (This is from having a partially deaf mother. There was no pride involved if I needed to "translate" for her. I had to do a lot of that, on the last visit, though I pointed out that at her present age, she's now more "normal" then she used to be just because most of her contemporaries are hearing impaired)
3) Unless your sister is Christian Scientist, that lady in church is full of it, and just another example of "blaming the victim". Your sister should be ANGRY, rather than guilty about that one.
That stinks...about the home, about your sister's ability to use her legs...and about the woman at church.
Whomever is near your sister can call her neurologist and ask for her to get PT daily. Most nursing homes offer it, and must do it if the neuro orders it.
I understand about being glad you aren't close by. I envied my sister C, who was 1000 miles away when Geri was ill.
((((((Sweetie))))))
Sounds like your sister has alot of pride and dignity. She is a strong girl who doesn't want to give up.As for her legs, does she not have physo theropy? I strongly believe as you do, "you don't use it you loose it." 100% If she does not, perhaps you can speak to the doctor about that. As for the women in church, sorry,but I really think she is full of it.
As for being glad that you do not liove close by, I could understand that, and you should not feel guilty for feeling that way.It is very difficult for you to see her in that way. She is a very lucky girl to have you as her sister, a caring, loving, warm and supportive sister, and living far away from her is not going to lesson your love, for her.She knows how must you love her, and how much you are hurting for her. She comes across as a wise 20 year old.
Just know that we are all here for you, and you are always welcome.
Love Miriam
I remember your previous post about your sister.