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TMG16's mother

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tmg16

Active member
Joined
Jan 7, 2016
Messages
35
Reason
Lost a loved one
Diagnosis
12/2015
Country
US
State
MN
My Mom passed away Sunday morning. I wanted to post here one more time to say how grateful I am for this site. What I learned from this site was truly invaluable and allowed me to be the best advocate and caregiver I could be for my Mom. Even though my Mom was being seen at an ALS Clinic and we received assistance from the ALS association, it was information from this forum that allowed me to ask the right questions and be as proactive as possible in my Mom's care. I was still not entirely prepared for how quickly my Mom's condition deteriorated - maybe it's just not possible. The last 48 hours were the hardest of my life as my Mom's body started failing. It was especially difficult once she became unable to use her IPad to communicate and we had to resort to the most frustrating and painful game of charades. The one thing that I wish I had known was that the Trilogy would keep her going past the time when she would have passed otherwise. I don't know if she was at all there at the end but she seemed to still be breathing only when I took the mask off to administer meds her breathing wouldn't start back up right away after I put the mask back on. When the hospice nurse came in the morning in response to my nearly hysterical call that we were low on morphine and I couldn't tell if she was comfortable, she took the mask off and my Mom never took another breath. I have a lot to grieve. My Mom left letters to my sister and I that were so full of love and compassion, it hurts to think about. She left keepsakes for my daughters that I haven't looked at yet. Her case was most likely FALS because my uncle was diagnosed shortly after my Mom. Her DNA is at Northwestern and Miami. So far the Miami group has tested for the 2 most common defects and they were negative so we may not be able to be tested. So I hope to not be back here but nothing is guaranteed right?

You caregivers and PALS that give your time and energy to this board are amazing and wonderful and providing such an amazing service. Thank you.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,223
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
I am so very sorry for your loss. Glad that you were there and thank you for your loving care of her. May she fly free.

Wishing you peace and comfort

I hope this is the end of it for your family. Northwestern will keep testing even if none of the currently known defects show up now so update your contact info as needed. Answers are coming for FALS.
 
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pittsburghgal

Distinguished member
Joined
Jan 7, 2016
Messages
480
Reason
CALS
Diagnosis
11/2011
Country
US
State
Pa
I am so deeply sorry for the loss of your mother. You and your family are in my thoughts and prayers.

Sharon
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,245
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
So sorry to hear of your loss, TMG. Your mom was lucky to have you and vice versa. I wish much peace and strength for you and your family, and we all hope that yours is not a FALS situation.

While it is true that the Trilogy can extend life per se, from your account she was slipping away and when life is measured in breaths, the journey is substantively over. You did everything you could, everything she would have wanted, and she knew that.

Best,
Laurie
 

Narrowminded

Very helpful member
Joined
Apr 30, 2016
Messages
2,311
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
TMG - I am so very sorry for your loss. I will be praying for you and your family as you adjust to life without your mom. I will also be praying that this is not a FALS case.

Hugs,

Sue
 

Manhattanite

Distinguished member
Joined
May 10, 2015
Messages
209
Reason
Lost a loved one
Diagnosis
05/2015
Country
US
State
NY
It breaks my heart to read your post. I am glad you were able to be an effective advocate for your mother, she was lucky to have a daughter like you. It is wonderful that she left the letters and keepsakes. Wishing you and your family lots of peace.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
11,516
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
home
I'm so very sorry for you loss. You have a lot of grieving to do yet, but know that you gave your mum everything she needed and more. I am certain she also knew that.
 

soonerwife

Very helpful member
Joined
Mar 16, 2016
Messages
1,514
Reason
Lost a loved one
Diagnosis
10/2015
Country
US
State
Oklahoma
So sorry for your loss tmg16. May peace be with you and your family.
 

WendyWooG

Senior member
Joined
Jan 10, 2016
Messages
518
Reason
PALS
Diagnosis
07/2016
Country
Uk
State
Hertfordshire
Very sorry for your loss, my heartfelt condolences to you.
Wendy xx
 

Angiegal

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

Angie
 

Erika

Distinguished member
Joined
Sep 21, 2016
Messages
175
Reason
CALS
Diagnosis
06/2016
Country
US
State
Arizona
I'm so sorry tmg16. But so glad she had you to love and care for her. You did all you could, how you could. And for that I'm sure she is so very thankful.
Wishing you peace and comfort in the days to come. And may this be the end of ALS for you and your family.
-Erika
 

bkite

Distinguished member
Joined
Sep 2, 2016
Messages
129
Reason
PALS
Diagnosis
06/2013
Country
US
State
Washington
Tragic news. I pray that you will find comfort and closure.
Bruce
 

4tloml

Senior member
Joined
Sep 15, 2014
Messages
576
Reason
CALS
Diagnosis
04/2013
Country
US
State
CA
You've been such a devoted daughter, I hope you take solace in that. I am so sorry for your loss. My heart goes out to you and your family.
 

starente15

Senior member
Joined
Oct 27, 2014
Messages
807
Reason
Lost a loved one
Country
US
State
NJ
I am so sorry for your loss. Thinking of you at this difficult time.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
Sorry to hear this, your in my thoughts.
 
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