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finiteguy

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Joined
Feb 21, 2017
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11
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Country
US
State
MA
City
Wakefield
This is the last time that I will post to this site. I was a care giver for my wife for 2 years....I was in denial about her ALS and never believed it. She had horrible pain before she passed...so anyone who thinks that ALS isn't painful is wrong. Some people with this horrible disease do have pain. My wife, Susan, had and EMG 2 years ago the results showed " diffuse disorder of anterior horn cell" ...which means MND and ALS. Susan was at MGH for 3 weeks to find out if they could manage her pain...and they could not...even with morphine. She came home form MGH on Sat Nov 26, in very bad shape. They spent way to much time with MRI's and other tests at MGH and I should have put my foot down and insisted that she come home earlier. Susan came home from MGH on the 26th and Sunday morning the 27th I could not wake her....she was breathing but apparently in a coma...eyes slightly opened. I sent her back to the hospital because I wasn't sure what was going on...and she passed away the next day. I was with her when God took her. Her funeral was Dec1, and our 39th wedding anniversary would have been Dec 2. I also have found out that her mother and sister had this disease. Anyway, I can't talk or think about this anymore. I will never get over this. ALS is the cruelest thing that I have ever witnessed.
 
If you do happen to read this, I just wanted to say that I hope you can one day find some peace and comfort in memories of better times with your wife.
 
I'm so very sorry.
 
I am so sorry to hear of your loss. You and your wife had a difficult time these past years, and I regret all the pain you went through to try to find help. You are a dedicated and loving partner- it came through loud and clear that you were fighting for the best care for your wife. I wish you peace and freedom from sorrow.
 
I am so sorry for your loss
 
I’m so very sorry!
 
Wishing you comfort.
 
finiteguy, your words were hard to read and heartbreaking. I am so sorry. I wish you peace and healing in the weeks to come.

Laurel
 
I'm very sorry for your loss of Susan and your discovery of the losses in her family. It is a cruel disease indeed. Much peace and strength to you.

Best,
Laurie
 
I am very sorry to hear about your loss...
 
My deepest condolences to you. Hoping you find peace.

Angie
 
I am so sorry, no words just a big hug in this sad time.
Adriana
 
Hello F' I am truly sorry about Susan. She is in Gods arms now. You are right about the pain. My Dr was not a believer that pain was a big part of our lives...He is now. My pain Doc has said about 20- 25% of us suffer horribly with pain for those who don't suffer don't get it...You know if a tree falls in the woods yadi yadi yadi. Bless you...

A
 
I am so sorry for your loss. I know there are a lot of tough memories to deal with. I hope that each day you feel a little more peace. It's been a couple of years since my daughter passed away and I know how difficult it can be. Sometimes I just have the goal of getting through the day, sometimes just an hour. Please be assured that there are friends here who are always available to listen.
 
finiteguy, I am so very sorry for the loss of your wife Susan. ALS is indeed, a very cruel disease, and pain is a large part of it for many PALS. I am sorry you had to witness and endure the pain your wife was experiencing. I wish you eventual peace finiteguy.
 
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