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sherryb

New member
Joined
Oct 4, 2008
Messages
4
Reason
Loved one DX
Country
US
State
GA
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.
 

BethU

Extremely helpful member
Joined
May 11, 2008
Messages
2,644
Reason
PALS
Diagnosis
05/2008
Country
US
State
California
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,
BethU
 

sherryb

New member
Joined
Oct 4, 2008
Messages
4
Reason
Loved one DX
Country
US
State
GA
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.
 

brendapals

Senior member
Joined
Jul 6, 2008
Messages
953
Reason
PALS
Diagnosis
06/2008
Country
US
State
any
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
 

CindyM

Extremely helpful member
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
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
 

brooksea

Legendary member
Joined
Sep 27, 2006
Messages
5,171
Reason
Other
Country
HM
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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