Jlynn
Distinguished member
- Joined
- Mar 16, 2016
- Messages
- 415
- Reason
- Lost a loved one
- Diagnosis
- 12/2015
- Country
- US
- State
- NH
- City
- Wolfeboro
Hi Everyone,
I lost my beautiful little brother on September 12, 2017. He was 47 years old with 2 young children. i knew I would miss his presence but never imagined this much. I knew what the outcome of ALS was yet still feel so unprepared.
My mind keeps going back to those last few weeks. He would go through phases where he would feel really bad we would all think it was the end and then he'd rally one more time. I thought he would this time too. He died on a Tuesday. The Saturday before there was an Oklahoma University football game on. He told me that this would be the last game he would ever watch of his beloved Sooners. He took no morphine that day so that he could stay awake. He watched his team win that game. From then on he was "actively dying".
I had been sleeping in a recliner and then a blow up mattress just outside his door for several nights in case he needed me as he could no longer push his help button. That Monday night I left the light on in his room so I could see him breathing. I woke up every 2 hours to administer his meds. His next dose was due at 2:15 a.m. I woke up at 1:15. He was still breathing. I went back to my blowup mattress and woke up again at 2:05 a.m. He was not breathing. Why didn't I just sit with him? I so regret going back to sleep. Although I was right outside his door and told him I would be I regret not being there to hold his hand for his last breath.
I miss him terribly. This big house feels so quiet without him. I needed to come here to this place(the forum) that helpedme so much through this journey. I needed to purge a bit to people who really understand. Thanks for listening and I'll try to check back soon. You all take care. Jlynn
I lost my beautiful little brother on September 12, 2017. He was 47 years old with 2 young children. i knew I would miss his presence but never imagined this much. I knew what the outcome of ALS was yet still feel so unprepared.
My mind keeps going back to those last few weeks. He would go through phases where he would feel really bad we would all think it was the end and then he'd rally one more time. I thought he would this time too. He died on a Tuesday. The Saturday before there was an Oklahoma University football game on. He told me that this would be the last game he would ever watch of his beloved Sooners. He took no morphine that day so that he could stay awake. He watched his team win that game. From then on he was "actively dying".
I had been sleeping in a recliner and then a blow up mattress just outside his door for several nights in case he needed me as he could no longer push his help button. That Monday night I left the light on in his room so I could see him breathing. I woke up every 2 hours to administer his meds. His next dose was due at 2:15 a.m. I woke up at 1:15. He was still breathing. I went back to my blowup mattress and woke up again at 2:05 a.m. He was not breathing. Why didn't I just sit with him? I so regret going back to sleep. Although I was right outside his door and told him I would be I regret not being there to hold his hand for his last breath.
I miss him terribly. This big house feels so quiet without him. I needed to come here to this place(the forum) that helpedme so much through this journey. I needed to purge a bit to people who really understand. Thanks for listening and I'll try to check back soon. You all take care. Jlynn