Old 08-12-2017, 02:16 PM #1 (permalink)
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Default How my mom went

My mom passed away in June, less than 2 years after diagnosis. I honestly do not think it was the ALS that finally took her but I guess it could have been.

She got a feeding tube 1 year earlier even tho she could still swallow, because they recommended getting it early while it wouldn't be such a hard ordeal later. She was never right after that, always having pain but they couldn't find anything wrong with it. Then there was the constant gas, burping, and feeling like u have to go to the bathroom #2 but can't go, make it back to couch, then start all over again. She was in complete misery.

I say I don't think it was ALS that finally took her only because she wasn't paralyzed yet like I've read and she wasn't having terrible breathing difficulty yet. She couldn't walk or transfer by herself but she was still communicating by texting on phone (with difficulty) and hand writing, or pointing to alphabet card.

In May she started not being able to tolerate the 4 cans of food per day, slowly over the month she went from 4 to 3 to 2 to 1 to 1/2 can of food per day because she wasn't absorbing it (we measured the risidual left in her stomach before each feeding). Then in early June on Monday the hospice nurse didn't hear bowel sounds, Tuesday hear little to none, no more food given after Tuesday, and Tuesday the nurse said she could pass within 2 weeks. What? I didn't believe it.

Wednesday she was bright eyed and bushy tailed and got transferred to her favorite spot on the couch. She had the care giver call a couple of dear friends to say hi and she loved them.

Thursday she was unresponsive when hospice visited and nurse said it could be 48 hours! What??!? Friday morning she woke up at 7am and passed away at 8am. I think it was a bowel obstruction but nevertheless it was a blessing because she was very fearful of being paralyzed and not being able to communicate, she was in such misery she told me not to be sad when she's gone because she won't be suffering anymore. I miss her dearly.

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Old 08-12-2017, 03:56 PM #2 (permalink)
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Default Re: How my mom went

I am so very sorry for the sudden loss of your mum. No time feels right to those left behind, and I am so sorry there seemed to be suffering at the end. I hope your family can find a little peace in knowing she felt ready for the next part of her journey.

~Fiona
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Old 08-12-2017, 05:13 PM #3 (permalink)
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So sorry to hear about the passing of your mom and all the pain and problems she had. May peace be with your family.
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Old 08-12-2017, 05:22 PM #4 (permalink)
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Default Re: How my mom went

Sorry to hear about your mom. Thinking of you.

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Old 08-12-2017, 05:29 PM #5 (permalink)
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Default Re: How my mom went

I am sorry for your loss Janet and I wish you a lot of strength in dealing with the aftermath of your mom's death.
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Old 08-12-2017, 09:05 PM #6 (permalink)
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Default Re: How my mom went

I'm very sorry for your sudden loss, Janet. You could well be right about the reason for her death. As you say, she is no longer suffering but it has been a shock for you. I wish you peace and strength in your next chapter.

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Old 08-12-2017, 10:41 PM #7 (permalink)
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So sorry Janet for the loss of your Mom. Kate
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Old 08-13-2017, 01:47 PM #8 (permalink)
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So very sorry for the loss of your mom. My thoughts are with you and your family.

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Old 08-20-2017, 09:51 PM #9 (permalink)
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Default Re: How my mom went

Janet, I am so sorry for the sudden loss of your mother. I am sure the feeling of loss is intense. I hope you find peace in knowing that she is no longer in misery, and that she was spared the paralysis that she was so fearful of. Love & hugs to you.
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