tmg16
Active member
- Joined
- Jan 7, 2016
- Messages
- 36
- Reason
- Lost a loved one
- Diagnosis
- 12/2015
- Country
- US
- State
- MN
- City
- City
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.
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.