muscular dystrophy

iVillage Member
Registered: 02-28-2007
muscular dystrophy
8
Thu, 03-01-2007 - 10:57pm

I was looking through the boards for one on muscular dystrophy but I couldn't find one.

I have a sister who is 20 years old. She has muscular dystrophy. It is a progressive disease that robs her strength. It is cruel because there is nothing wrong with her mind, just her body. Anyway she is currently living in her own apartment and has cargiving staff that comes 4 times a day (I don't know how long the shifts are). She cannot get up to standing by herself anymore and it is only a matter of time before she is totally dependent on her wheelchair (she can currently walk a little).
She is now on the waiting list for the local nursing home because she needs 24 hour care and there is all sorts of problems with her current situation and staff issues. My mom is totally at the end of her rope trying to make the ends meet and care for her. And I live 6 hours away with my family.
I am totally grieving the thought of my sister going to a nursing home. They are not tailored to young people. And everytime I talk to my mom she tries to guilt trip me into moving back home to be there for my sister. Granted I would like to be closer to her but my husband and I are not going to move at all costs to our family.

I actually have nightmares about her living in a nursing home (I used to work in the one she is waiting for as a kitchen staff). It is so unfair to see her with this horrible disease while I have made a family and have three beautiful babies and a future. I don't know how to deal with this. Somedays I am totally down.

It is easier for me to be further away because I am an ostrich. I burry my head in the sand and pretend things aren't so bad. But I know I could regret that and I am trying to face it.

My heart is breaking for my sister.

I am sorry this is so jumbled, I haven't expressed these thoughts before so they are not collected very well.

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iVillage Member
Registered: 02-15-2007
Fri, 03-02-2007 - 1:56pm

You aren't jumbled we understand how difficult this must be. You aren't burying your head in the sand you are living YOUR life to the fullest. You are not responsible for your sister and you couldn't possibly give up everything you have worked so hard for and care for her. As sad as nursing homes are they are better equipped to deal with her. I am also thinking that the guilt trip your Mom is placing on you isn't the first one. Why isn't she taking her own daughter into her home???

Your responsibility is to visit your sister when it is feasible and let her know how much you love her. We can't change when bad things happen to good people but we can change how they think and feel about themselves by positive reenforcements.

Let your Mother know that you will do the best you can under the circumstances but your place is with your family. If she doesn't understand that is her problem not yours.

Kiki

iVillage Member
Registered: 02-28-2007
Fri, 03-02-2007 - 2:54pm
I have to jump back in. The reason why my mom isn't taking my sister back into her home is because my sister just gained her independence in June and it is her desire to keep it and her apartment as long as possible. My mom would take her back in a heartbeat and that would be so much eaiser on her since a lot of my sister's primary care still falls on her.
Yes she does guilt trip me on a lot of things. I feel like when my sister was born (I was 6) and she was so sick that I became nothing. And I was a good kid, never rebellious and pretty much helpful. I also have a little brother who is 11 now and I think he feels the same why I used to, that it is all about our sister (and understandably- I mean I am an adult now and a mother, so I can be more understanding).
Don't know what else to say right now.
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iVillage Member
Registered: 02-15-2007
Fri, 03-02-2007 - 4:49pm

I hope you didn't think I was questioning anything....just curious and maybe a tad nosy. I understand where you and your brother felt neglected a bit because when my niece was 9 she was diagnosed with cancer and her siblings were left out for a couple of years and even today my niece who was sick still gets a certain amount of extra attention from people as a residual of all of that. I think it's natural because the chance of losing a sick child is so high that you put all of your heart and soul into that child and the siblings are left out.

Again I hope you don't think I was questioning you....just interested in the details.

Kiki

iVillage Member
Registered: 09-11-2004
Fri, 03-02-2007 - 4:54pm

Hi Welcome


I am sorry about your sister. The hardest thing in the world is having a young person go into a nursing home. My sister lived with my DH and I for the last 4 years of her life. The summer before she died, we had started to make arrangements for her to go to a nursing home. She was, then, 47.


I could no longer take care of her. It wasn't possible. As much as it hurt, I needed to do what was best for her, me, my DH and my 2 girls (who were 9 and a few months old at the time.


You need to do what you need to do. End of story.


peace to you.

Beth
PROUD TO BE CO-CL ON THE FOLLOWING BOARDS

Alcohol Problems Board


iVillage Member
Registered: 02-28-2007
Fri, 03-02-2007 - 7:17pm

Oh, I totally didn't think you were questioning, it just feels so good to start talking.

:)

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iVillage Member
Registered: 01-26-2004
Fri, 03-02-2007 - 11:38pm

iVillage has messageboards for Multiple Sclerosis and Parkinson's Disease, but not Muscular Dystrophy.

AcornLeaves
iVillage Member
Registered: 02-15-2007
Sat, 03-03-2007 - 3:15pm

You can email me anytime you desire. I can sure listen well.

Kiki

iVillage Member
Registered: 09-13-2005
Sat, 03-03-2007 - 8:13pm

So sorry to hear about your sister's condition.This is not only hard on her, but on the entire family aswell. As for your mom, it is very difficult to have a sick child, no matter how old they are. A mother is a mother and the feelings and emotions that she is going through is heart breaking and at the same time she must feel very helpless that she can not do something to help her daughter through this horrible diease.

As for you, living so many miles away, it is also hard on you, as you must feel torn apart between your sister and your own family, which I think is a normal feeling. But....I am sure that you can call your sister every so often and perhaps reasure her of how much you love her and how much you think about her. Also, you can make a photo album of your family, you, your husband and your children. Under each picture perhaps you can write a little something about that particular picture, and once the album is finished you can qrap it up and send it off to her. This would be a nice gift as well as she may feel that she is still part of this family even though she will be in this nursing home.

The women on this board are very compassionate and I am sure that I can speak for all of us, and tell you that all of our thoughts and prayers go out to you, your sister and your mom.

Miriam

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