Allie1987
Member
- Joined
- Jan 22, 2023
- Messages
- 23
- Reason
- CALS
- Diagnosis
- 01/2023
- Country
- US
- State
- VA
- City
- Arlington
Hello All - Thanks so much for all your comments, suggestions, and stories! And sorry that I did not reply sooner. December got very intense.
The upshot is that my PALS Paul died on January 5. I think he made the decision he was just done and wanted to go. He was found in the early morning by the nursing home staff. None of us expected it to happen when it did, though we knew he didn’t have a whole lot longer due to the bad bedsores.
In response to some of the suggestions made: Paul did try an eye gaze device, but was not successful in using it. He wore glasses and that made it very difficult. He also tired very easily by that point.
By the time he died, his communication was really beginning to deteriorate. He was having trouble spelling out letters for us, perhaps because of the morphine he had to take for pain.
I personally am a believer in an afterlife, and I feel glad that he is now in a much better place. He really did have a pretty miserable four months since getting the emergency trach. I know trachs work out well for some, and that’s wonderful. It did not in Paul’s case unfortunately, due to his communication difficulties and the fact that we did not have the resources to care for him at home.
I am now focusing on planning a Celebration of Life for this spring and doing other things to honor him.
One nice thing I will share: I was alone with him at the nursing home for five or six hours the night before he died. He was having a rough evening, and we were waiting for the morphine to kick in to ease his pain, Then the RT came in to suction his trach, which made him feel even worse.
I was holding his hand and saying, “Hang on, the morphine will kick in soon, you’ll feel a lot better soon.” The RT looked at me and said, “Is he your brother?”
I at first said, “No, we’re just old friends.” And then I looked at Paul and said, “Well, maybe by now you are my brother. What do you think?” He looked at me and nodded.
Soon after, the morphine kicked in and he fell asleep. I went home to go to bed, and when I woke up I learned that he had died early that morning.
I feel so happy that this was the last, or almost last, exchange we had with each other.
The upshot is that my PALS Paul died on January 5. I think he made the decision he was just done and wanted to go. He was found in the early morning by the nursing home staff. None of us expected it to happen when it did, though we knew he didn’t have a whole lot longer due to the bad bedsores.
In response to some of the suggestions made: Paul did try an eye gaze device, but was not successful in using it. He wore glasses and that made it very difficult. He also tired very easily by that point.
By the time he died, his communication was really beginning to deteriorate. He was having trouble spelling out letters for us, perhaps because of the morphine he had to take for pain.
I personally am a believer in an afterlife, and I feel glad that he is now in a much better place. He really did have a pretty miserable four months since getting the emergency trach. I know trachs work out well for some, and that’s wonderful. It did not in Paul’s case unfortunately, due to his communication difficulties and the fact that we did not have the resources to care for him at home.
I am now focusing on planning a Celebration of Life for this spring and doing other things to honor him.
One nice thing I will share: I was alone with him at the nursing home for five or six hours the night before he died. He was having a rough evening, and we were waiting for the morphine to kick in to ease his pain, Then the RT came in to suction his trach, which made him feel even worse.
I was holding his hand and saying, “Hang on, the morphine will kick in soon, you’ll feel a lot better soon.” The RT looked at me and said, “Is he your brother?”
I at first said, “No, we’re just old friends.” And then I looked at Paul and said, “Well, maybe by now you are my brother. What do you think?” He looked at me and nodded.
Soon after, the morphine kicked in and he fell asleep. I went home to go to bed, and when I woke up I learned that he had died early that morning.
I feel so happy that this was the last, or almost last, exchange we had with each other.
