Old 10-04-2008, 09:09 PM #1 (permalink)
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Default My first time!

This is my first post, or "thread" or whatever they call it. I don't even know what a "thread" is! Oh well, I've just read and read and read all the posts and thought I'd finally share some thoughts. My sweet mother was diagnosed with ALS on July 15, 2008. She had suffered for over two years while her quack of a doctor told her she needed back surgery (and she had it!) only to never get better. She is in the final stages, and has been in a Hospice In-Patient unit for just over 4 weeks. To say I am heartbroken is an understatement. I am so sad, and mad, and nauseated and tired and guilty and the list goes on. I hate ALS, it is the meanest disease I have ever heard of. At least with cancer (most times) you can TRY to fight it with chemo and other meds. Did I mention how mad I am? My mama loved to stay busy, walked 6 miles every day (up until 2 yrs ago) was the best cook in the world, loved her family and loved life. She only cared about our family, and still worries about us. She has always hated being in the bed - never one to sleep in late or take a nap. She was smart, independent, stubborn and resilant - all great qualities in life, but those characteristics make for a very BAD patient. Even with all the morphine and drugs, she still begs to get out of the bed. Watching her suffer has been agonizing. I'm not normally a negative person but this experience has proven to almost be more than I can take.
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Old 10-04-2008, 09:27 PM #2 (permalink)
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Sherry, I am so sorry for what you and your mom are going through. She sounds like a wonderful woman, and you sound like a wonderful daughter. Please take care of yourself, too, as you go through this passage with your mom.

Anger is an absolutely normal feeling in this situation! And this forum is the perfect place to vent. I'm sure you will find the support you need.

Blessings,
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Old 10-04-2008, 09:39 PM #3 (permalink)
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thank you so much. You're right, I don't know why but I just need to say these things. I love my mama so much. I wish I could make it better and I can not. Thanks for your knid words.
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Old 10-04-2008, 10:10 PM #4 (permalink)
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Sherry,
Bless you and your mom for what you are going thru right now. Yes, it is a monster of a disease, and you are a very strong woman for being there for your mom.
Like Beth said, please, please, make sure you take time to rest yourself. It sounds like your mom was a strong-willed woman before ALS, and I'm sure she needs you to continue to fight for her.
Yes, vent to us all you want to, we're all here to help support you thru the entire battle! You will find quickly, it's ok to vent, scream, cry, laugh, on here, and you will meet a great bunch of folks,
I'll keep you and your mom in my prayers,
May God richly bless you,
brenda
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Old 10-05-2008, 11:05 AM #5 (permalink)
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Hi Sherry- welcome to the forum although I am sorry for the reason you had to seek us out. Folks around here truly "get it" what it is like to live with this terrible disease. Vent anytime! Cindy
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Old 10-06-2008, 03:30 PM #6 (permalink)
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Sherry,

Very sorry about your Mama!

You are right, the stubborn and independent do not make the best patients. It is heartbreaking to watch their freedom being stripped away! But it does say something about the character and tenacity our loved ones have.

I hope your Mama can find some comfort from Hospice. And I know you can find support on this forum when you need it.

Take care.
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