ChrisMc
New member
- Joined
- Feb 2, 2023
- Messages
- 8
- Reason
- Loved one DX
- Diagnosis
- 12/2021
- Country
- US
- State
- UT
- City
- South Jordan
Our daughter, Amy, passed away in our home on Friday, April 7th. She had FTD and Bulbar Onset ALS which had progressed to the point where she could no longer speak. She could still walk up to a few days before her death and even then could help transfer to toilet or chair, but she was very weak. He legs were unsteady and her hands didn't work well. Swallowing was difficult and she didn't eat much. She had fallen at home and her husband could no longer care for her needs while working and caring for 2 young daughters, so we decided it was time to move her to our home on April 5th.
We were afraid she would be upset about staying with us, but she seemed to know it was time. We had gotten a bidet toilet seat to help because she could no longer wipe and we found that she loved the warm seat and water, sometimes indicating that she wanted to go to the bathroom when she didn't really need to go.
The first night went well and she slept soundly, but the next day she had thick mucus in her throat that kept her from swallowing anything. It just came right back out. The cough assist helped a bit at first, but she hated it and more mucus kept coming, so we stopped putting her through that. The second night was rough. We took turns staying with her. She couldn't recline at all without mucus congestion and trouble breathing. The next day she was too weak to keep her eyes open and barely cognizant of anyone around her. The hospice nurse came and had us administer morphine to help Amy be more comfortable.
Our family all came to be with her throughout the day, especially her husband and daughters. They were the last to say goodbye to go home to bed that night. Less than 2 hours later she passed away peacefully as I spoke to her of all the people who love her. I'm grateful to have brought her into this world and to have been with her when she passed on.
We were afraid she would be upset about staying with us, but she seemed to know it was time. We had gotten a bidet toilet seat to help because she could no longer wipe and we found that she loved the warm seat and water, sometimes indicating that she wanted to go to the bathroom when she didn't really need to go.
The first night went well and she slept soundly, but the next day she had thick mucus in her throat that kept her from swallowing anything. It just came right back out. The cough assist helped a bit at first, but she hated it and more mucus kept coming, so we stopped putting her through that. The second night was rough. We took turns staying with her. She couldn't recline at all without mucus congestion and trouble breathing. The next day she was too weak to keep her eyes open and barely cognizant of anyone around her. The hospice nurse came and had us administer morphine to help Amy be more comfortable.
Our family all came to be with her throughout the day, especially her husband and daughters. They were the last to say goodbye to go home to bed that night. Less than 2 hours later she passed away peacefully as I spoke to her of all the people who love her. I'm grateful to have brought her into this world and to have been with her when she passed on.
Last edited by a moderator: