mariasb
New member
- Joined
- Apr 8, 2013
- Messages
- 9
- Reason
- CALS
- Diagnosis
- 11/2012
- Country
- US
- State
- MI
- City
- Plymouth
My husband had been stable with hospice care at home but I noticed changes in him the weekend of Sept. 7th. By Sunday night I realized that he was probably dying and the hospice nurse came out Monday. She said yes he was worse than he had been but did not think it was his time yet. By Tuesday morning my husband was unresponsive and considered to be actively dying. My mom flew in and our children came home from college. My husband did pass away late Thursday night, Sept. 12th with all of us with him. Hospice and his doctors were all shocked that he had progressed so far so fast. The Monday night before he died he was somewhat alert but could not talk. I talked to him for a long time and asked him if he was tired of fighting. He nodded yes and I told him to let go whenever he was ready. It was by the next morning that he was unresponsive. We had his funeral yesterday. His battle is over and I am thankful for that but I am left here feeling so lost and lonely. There are a lot of people here at my house but miss my husband and the way we were before he was sick. My girls put together a slide show for the funeral and seeing all those pictures brought it all back. I had been taking care of this man with dementia who was nothing like my husband and honestly praying it wouldn't last forever. Now I am realizing how final this is. Our hospice nurse had warned me that trying to determine how much time was left is really tricky with ALS patients and she was right. Our situation changed so quickly. We all know how ALS ends but it doesn't make death any easier. I am left wondering how this happened and why us. This disease continues to be horrid as now I feel totally lost.