JanetALS
New member
- Joined
- Jan 31, 2017
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- Tx
- City
- San Antonio
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.
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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