- Joined
- Nov 20, 2018
- Messages
- 235
- Reason
- Lost a loved one
- Diagnosis
- 02/2018
- Country
- US
- State
- VA
- City
- --
I wanted to let you know that my loved one died Tuesday June 11. He was diagnosed February 2018 and lived about 16 months with his diagnosis. He never fought his ALS but quietly accepted it and made the best out of it, loving the comfort and mobility his wheelchair gave him and making jokes until the very end. He gracefully accepted each of the very many losses and moved on to the next stage. He predicted what would come next and was usually right. He did not want to extend his life with this disease. In the very end he was frustrated that it took so long. It was hard on him.
For a long time he had been sleeping in a recliner in seated position. He did not use trilogy much, except in the last few weeks when he experienced more shortness of breath. Up until the last few days he used his eyegaze device and most often would type complete sentences - punctuation included and would not spare with 'Thank yous". He did not want feeding tube and was clear that he simply wanted to die in the end. He became very weak as he could barely swallow any longer and then lost that too.
He was on hospice for about 5 weeks. We had a really good hospice nurse with whom he had much fun and comfort.
For me it's going OK. Losing him is still so fresh. I miss him very much. The healthy person. I don't miss the end. For some reason I don't sleep well at all. I have a huge sleep deficit. I am cleaning up in the house, meet with friends, and today I went to a concert by myself in a close by town. We used to go there every year on Father's Day. Today I went by myself and it was surprisingly OK. I started working in the yard again. There is much to do. My dog has come by for visits. Soon I will get him back full time. He will miss his playmates.
For a long time he had been sleeping in a recliner in seated position. He did not use trilogy much, except in the last few weeks when he experienced more shortness of breath. Up until the last few days he used his eyegaze device and most often would type complete sentences - punctuation included and would not spare with 'Thank yous". He did not want feeding tube and was clear that he simply wanted to die in the end. He became very weak as he could barely swallow any longer and then lost that too.
He was on hospice for about 5 weeks. We had a really good hospice nurse with whom he had much fun and comfort.
For me it's going OK. Losing him is still so fresh. I miss him very much. The healthy person. I don't miss the end. For some reason I don't sleep well at all. I have a huge sleep deficit. I am cleaning up in the house, meet with friends, and today I went to a concert by myself in a close by town. We used to go there every year on Father's Day. Today I went by myself and it was surprisingly OK. I started working in the yard again. There is much to do. My dog has come by for visits. Soon I will get him back full time. He will miss his playmates.