I was my husband's 24/7 caregiver. While I did not post very much on the forum, I want you all to know that I read it every day and was encouraged, uplifted and counseled. I found your suggestions and answers to questions and issues that were facing me to be invaluable.
My husband Thomas passed away on Sunday, May 20th after a 2 and a half year battle with ALS. While it all happened very quickly, it was very peaceful. On Friday, he was just uncomfortable…nothing I did seemed to help…no matter what position I tried to move different body parts to, I still couldn’t get him satisfied. (I called this “miserable mode” which usually happened for a few hours about once a week.) On Saturday, he slept a little more than usual, but even when he was awake, it was as if he really wasn’t “engaged” with me. I would ask him questions and he would just give me a yes or no answer but with no additional commentary. He didn’t want me to set up his communication device or to try to use the letterboard. On Sunday, he just slept. When I gave him his medicine and fed him through the tube, he would make slight movements and “noises”, but he never opened his eyes. I watched him sleep and breathe all day long. In the end, there was no respiratory distress, no indication of pain…he just kept sleeping. I thank God for his mercy.
His memorial service was held at our church with approximately 700 people in attendance…a wonderful testament to the impact that he had in this community!
I want to thank each of you for everything that you did for us. Even though we've never met, your advice was often exactly what I needed. I continue to read the forum and if I see a question or issue that I think I can help you with, I will certainly post.
My Thomas fought ALS with tremendous courage and an unwavering faith in our God. My prayers are with all of you as you continue the journey.
Much love, thanks and admiration-
Kathy
My husband Thomas passed away on Sunday, May 20th after a 2 and a half year battle with ALS. While it all happened very quickly, it was very peaceful. On Friday, he was just uncomfortable…nothing I did seemed to help…no matter what position I tried to move different body parts to, I still couldn’t get him satisfied. (I called this “miserable mode” which usually happened for a few hours about once a week.) On Saturday, he slept a little more than usual, but even when he was awake, it was as if he really wasn’t “engaged” with me. I would ask him questions and he would just give me a yes or no answer but with no additional commentary. He didn’t want me to set up his communication device or to try to use the letterboard. On Sunday, he just slept. When I gave him his medicine and fed him through the tube, he would make slight movements and “noises”, but he never opened his eyes. I watched him sleep and breathe all day long. In the end, there was no respiratory distress, no indication of pain…he just kept sleeping. I thank God for his mercy.
His memorial service was held at our church with approximately 700 people in attendance…a wonderful testament to the impact that he had in this community!
I want to thank each of you for everything that you did for us. Even though we've never met, your advice was often exactly what I needed. I continue to read the forum and if I see a question or issue that I think I can help you with, I will certainly post.
My Thomas fought ALS with tremendous courage and an unwavering faith in our God. My prayers are with all of you as you continue the journey.
Much love, thanks and admiration-
Kathy
