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    • If you know someone that battled ALS, please add them here
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SamSam

New member
Joined
Jul 1, 2017
Messages
4
Reason
Loved one DX
Country
US
State
New Mexico
City
Albuquerque
We got a call around 5 tonight and with sirens in the background heard that mom stopped breathing. We prayed for no trache, she had been firm on this point, and a few minutes later got the second call to say they were unable to resuscitate her and she had passed.

There are too many feelings going on right now, sadness, anger, relief. They're not sure exactly what cased her to stop breathing but think it may have been a blood clot that stopped her heart. This is where our anger starts, she wouldn't allow anyone to take care of her, but if she had she might not have gone so quickly. It's only been a year and 9 months since diagnosis, about 3 since onset of symptoms. But these last few months have been trying. We gave up on trying to get her help, it wasn't her wish, but the last time we saw her, just two weeks ago she expressed the desire to get a feeding tube. I worried it might be too late, and here we are now. But everyone will start to get nervous when they know the end is hastening on. And I think that is where she was coming from. No one wants to live with this terrible disease, but going quickly is just as scary.

We are relieved it went so quickly and no intervention had to be debated over. She was in denial with her husband for so long they refused to plan anything or set wills and power of attorney. No funeral prep has been down and will now have to be dealt with while greeving. But it could have been much more of a nightmare if things had been prolonged, while she lay suffering with no one knowing her ultimate wishes. And she doesn't have to suffer anymore. She wasn't able to speak after we left two weeks ago and the last few days could no longer move her wheelchair. Becoming locked in was a major fear. Knowing she's free from all of it is a great relief.

But the sadness is deep. She was a mother to 5, only 3 married. With 5 grandchildren all under the age of 8. There's so much more to come, but watching from the sidelines unable to participate would have been just as heartbreaking for her. As things were progressing she couldn't hold the children any longer and it was hard to see them playing as they ran past or rolled around on he floor, her movement being so limited. And that ever lasting, what could I have done more of, should we have pushed harder in the beginning, there are too many "what if" 's that haut us now. I hope these will fade. For now we fluctuate between utter sadness and deep denial. It feels very surreal that she could actually be gone, someone so dear to our heats.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
8,167
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
So sorry for your loss. You supported her wishes and that was the best thing you could do for her. Peace and comfort to you and your family
 

pittsburghgal

Senior member
Joined
Jan 7, 2016
Messages
525
Reason
CALS
Diagnosis
11/2011
Country
US
State
PA
City
Pittsburgh
I am so very sorry for your loss. Sending you and your family comfort and strength. You are in my thoughts and prayers.

Sharon
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,951
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
City
Seattle
Very sorry to hear about your MIL, but as you say, she chose her path and is free. And as the grandkids grow, you and the rest of your family will share with them the love of life and strength that she would have if she could.

Best,
Laurie
 

Angiegal

Distinguished member
Joined
Feb 15, 2017
Messages
301
Reason
PALS
Diagnosis
09/2015
Country
CA
State
Ontario
City
Kitchener
Sorry for your loss.

Angie
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,574
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
So very sorry for your loss. Thinking of you.

Hugs,

Sue
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,564
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
OK
City
Cleveland
So sorry for your loss. May peace be with you and your family.
 
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