Old 06-06-2017, 08:00 AM #1 (permalink)
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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.
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Old 06-06-2017, 08:24 AM #2 (permalink)
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Default Re: TMG16's mother

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.

Last edited by Nikki J : 06-06-2017 at 10:22 AM
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Old 06-06-2017, 09:43 AM #3 (permalink)
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Default Re: TMG16's mother

I am so deeply sorry for the loss of your mother. You and your family are in my thoughts and prayers.

Sharon
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Old 06-06-2017, 10:17 AM #4 (permalink)
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Default Re: TMG16's mother

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
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Old 06-06-2017, 12:33 PM #5 (permalink)
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Default Re: TMG16's mother

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
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Old 06-06-2017, 12:56 PM #6 (permalink)
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Default Re: TMG16's mother

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.
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Old 06-06-2017, 02:30 PM #7 (permalink)
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Default Re: TMG16's mother

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.
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Old 06-06-2017, 05:38 PM #8 (permalink)
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So sorry for your loss tmg16. May peace be with you and your family.
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Old 06-06-2017, 06:27 PM #9 (permalink)
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Very sorry for your loss, my heartfelt condolences to you.
Wendy xx
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Old 06-06-2017, 09:37 PM #10 (permalink)
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Sorry for your loss. Thinking of you.

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Old 06-06-2017, 10:04 PM #11 (permalink)
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Default Re: TMG16's mother

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
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Old 06-06-2017, 11:39 PM #12 (permalink)
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Tragic news. I pray that you will find comfort and closure.
Bruce
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Old 06-09-2017, 10:15 AM #13 (permalink)
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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.
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