greif

iVillage Member
Registered: 02-28-2007
greif
3
Thu, 08-16-2007 - 2:48pm
I don't feel like facing this.
I have a 21 year old younger sister who has muscular dystrophy and lives in a nursing home. They started her on morphine now. I am having a real problem accepting that. I do not want her to always be in pain, but I do not want it to be at the point that all they can do is keep her comfortable either.
I feel like God really messed up here. Here I am, a very very shy person. I am married and have 3 beautiful children, but I feel useless and worthless. And there is my sister who is a beautiful soul and doesn't get the chance she deserved in life. It should have been me, it should have been me.
I get so tired of my (religious) family saying that everything has a reason. That is sick, what reason is there for a beautiful child to be born and face a life of pain and deteriorating muscles and no shot at reaching her dreams? What reason is there for me to lose my sister?
There are times when I just don't want to face the pain another day.
And to top it all, I am a home daycare provider. I watch a 4 year old girl and a 4 month old boy who has Spina Bifida. It is just to raw, to close to what my family went through when my sister was a baby.
Plus I live 6 hours away from my sister. I want to be with her, I want to see her everyday. I hate this. I want her to know how much I love her, how much my kids love her. It is so hard knowing how little time she might have left and I am here and she is there.
Thanks for listening.
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iVillage Member
Registered: 02-12-2004
In reply to: mom2sarahjacobcain
Thu, 08-16-2007 - 5:56pm

Hello and welcome to the board... I'm glad you found us and, as with everyone, I wish this level of pain didn't occur in this world. But it does unfortunately.


I can certainly understand your feelings of anger, bitterness and sadness... It IS unfair that your beautiful sister has had to deal with this all of her life and that you, as her family have had to bear witness to her pain. I don't know WHAT the reason could be or even if there is one. But I DO know your sister sounds like an awesome person who would NOT want her sister hurting as you are right now!


I don't know anything about Muscular Dystrophy in terms of treatment, prognosis etc and so I can't offer you anything there. What I CAN offer you is support in dealing with your feelings and what may be an impending loss (at least, that's the impression I get from your post.) I can imagine it must be very difficult for you to see her on morphine but obviously it's probably NOT the fact that she is on morphine or any other medication that troubles you but rather what it represents.


I don't mean at all to be insensitive but I'm wondering.... Has your sister's illness been this hard all along for you to deal with or, has her recent deterioration made things more difficult? Is your sister's suffering what is bringing on the suicidal thoughts/feelings or do you feel that has been there separate and apart from her illness? Do YOU have supports in your life? Family? Friends? Therapist? I know that many hospitals have a social work department. Perhaps they could hook you up with a social worker to discuss your feelings with or even a support group for people who are affected by the same illness or have a loved one going through it. Just a thought!


It's gotta be really tough watching an infant with Spina Bifida on top of all you are dealing with! Does the mom of this baby know your sis has MD? Either way, if you find it is too triggering for you personally, I'm wondering if you could have her make other daycare arrangements? Yes, it would mean a loss of income until you could perhaps add another child or two but it may be in the best interests of both yourself AND the child. On the other hand, it could go either way... Because in many cases, what better person could there be who'd understand such stressors, limitations etc than someone who's "been there, done that!" It's a tough call, isn't it?


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iVillage Member
Registered: 02-28-2007
In reply to: mom2sarahjacobcain
Thu, 08-16-2007 - 6:10pm

My sisters disease has been harder on me as she gets worse. She seemed to be stable until she hit pueberty, then she started to get worse and then it seemed to level off for a while, that happened a few times, but this time there is no leveling off.

I have always been hard on myself. When I was a child and my sister was born I was left home with my dad while my mom took her to doctor after doctor and therapy and all that. I was sexually abused from the time I was 6 until I finally told my mom what was going on when I was 9. And I only told her then because my dad had beat me for missing a crumb when I swept the floor and I was scared. We left him and he went to prison for 3 years.

I have always blamed myself (I know I know, not my fault). Since I was so young it is hard not to think that I must have done something wrong or I must be bad for this to have happened. Then when I was in college, my last semester of my first year I let a guy walk me home from a party, and was raped. Again I blamed myself, I mean how stupid was it to think that he was trying to be a nice guy and see me home safely? So I have always struggled with self worth.
It is so hard to see my sister going through this because she is so good, and I have always felt like I am bad or there is something wrong with me.
These things that have happened to me have made me very very shy. I am so shy that I practiacally stutter (or feel like I am anyway) when talking to a stranger. The fact that I got married and had kids is amazing to me. (my husband was just a sweetie and perfect and swept me off my feet and never tried to push me to quickly into anything).

It all just feels like to much to handle. I would love to quit watching extra kids and move back closer to my family and escpecially my sister but that would mean my husband leaving a good job for a hard labor job and I can't ask him to do that. I just feel like I cannot change anything.

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iVillage Member
Registered: 03-11-2004
In reply to: mom2sarahjacobcain
Fri, 08-17-2007 - 1:40pm

This is a very sad situation. I am sorry that you must face it):


My only sister died w/skin cancer. We knew from the time of diagnosis that she wouldn't survive. We watched her struggle for 3 1/2 years. She took every known treatment including new ones & old ones that the professionals said would not work. When it came to the end, I still could not accept what was inevitable. The nurses would talk to me privately & tell me I had to stop giving my ds false hope. That she would NOT be returning to her home. I was sooo angry! They doped her up w/morphine & being a nurse, I knew that would hasten her death. They told me it was to keep her comfortable. I argued w/them. Now that I look back, clearly I was more trouble to those nurses than my own dying sister. Finally one of them told me I was being selfish. That I would rather have my sister suffer with terrible pain, than allow her to pass peacefully. I can assure you that I called those nurses awful names): I am ashamed now. They were right. I had no right to act that way.


I share this only in the hope that you can see yourself. What you are thinking is the normal part of letting go of your sister. There are steps in the process. Anger. Remorse. Regret. Powerlessness. This is a very painful time for you. Of course, your own past is being relived. All of our sadness & guilt is triggered. It IS all about YOU! As time passes, you will accept what you have no control of & learn ways to cope.


ITA w/Lori that you need a sounding board for your feelings. They are real. They are valid. Talking to a therapist does NOT mean you're crazy. Just that you need some extra *listening* to help you through. If that isn't an option, if you are a person of faith, call your clergyperson for private counseling. In time you will see how you fit into the world.


You did overcome a painful past