CSElliott
New member
- Joined
- Dec 13, 2015
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 11/2013
- Country
- US
- State
- CT
- City
- Wallingford
It's amazing how in the end, this grief really is about how I've lost the love of my life and not as much about the way I lost him or the tremendous amount of caregiving I did to keep him alive as long as possible. But...the way I lost him is not OK either and I think it's given me PTSD. He was tortured by this disease and I watched the torture. Now I have nightmares and I can't sleep.
He went down in a week and died at home. For the later part of that last week he was asking us to take his BiPap mask off but we didn't know that's what he was doing, or more likely, we didn't want to believe it. He knew days before we did that taking it off would kill him and we didn't know he was ready. I stay awake at night now thinking about how he suffered those days, wanting to die. Just one week before that final decent he was walking around on his own two feet, with my help. He and I were managing all of it day after day, we were together, we were communicating and in love. Then, everything changed and he was gone within a week. And now I can't sleep.
That morning he died, the family and I sat by his side. I read to him as many Facebook messages as I could from friends wishing us both well and telling us that they were thinking of us and that they loved us. One friend had performed and recorded one of his songs (he was a singer/songwriter) and it sounded great. Only a week earlier he would have been nuts about it. When that song ended he stopped breathing, with his eyes open, but wasn't gone yet. I reclined his chair so he could lay flat for the first time in almost a year. Then I laid down with him, next to him, for the first time in almost a year. He was warm and it was exactly like it used to be when we'd spend hours together like that, laying down together. With my eyes closed I could imagine we were just still indulging in that together. Then I realized I should pay attention to whether or not he really was gone yet, probably acting on my caregiver instinct. He had already stopped breathing but his lips were twitching. So I felt the pulse in his wrist and counted three pulses over the course of one full minute, the last one taking the longest. Then there were none. At that point the part of my body that was touching his body felt a strong tingling feeling. As paranormal as that sounds, it really did happen....I felt it and then he was gone. I think it was his energy and maybe I absorbed some of it. I hope, like those who have had near death experiences claim, he felt peace as he left his body. Who knows what happened to him next.
I think about how for months before he had become obsessed about dying, always asking Hospice what it would be like, how it would happen, how we would know if it was happening. Nobody ever really answered him well enough because there's really not an answer. The only thing we knew was that it was inevitable and was going to happen sooner than later. I think he just worked it out on his own, in the end.
So, it sucked and it wasn't "beautiful". Maybe some day I'll see it that way but for now it was horrible. It happened over a month ago but I still spend my time crying and missing him. I also spend my time trying to do something productive but finding reasons not to. Mostly, I can't sleep. I take stuff to help sleep but I wake up after 2 or 3 hours, no matter what.
I never wrote on this forum enough, I mostly read what other people wrote and took the advice. I did reply a couple of times and always meant to do more. I can write a book about caring for a person with Bulbar ALS. I probably should some day. That's why I wrote this post...for others who were told that the end stage, as in THE end, would be comfortable and everything would be cozy and OK. Well it wasn't OK. Everything he had always feared, being immobile and helpless, unable to communicate, trapped....that all happened despite my promise that I wouldn't let it happen that way and that I'd keep him comfortable with the abundance of Hospice drugs. I guess I could be grateful that the worst of it only lasted a week. I had no idea how fast he would be taken down. If I could do it over, knowing what I know now, as much as I doubt I could do it I would hasten his death for him when he asked me to, if possible. It wouldn't have taken much, I realize now. I was in such caregiver mode that I kept him alive longer than he wanted. One night I even instinctively re-started his heart after a long period of agitation and panic. I hope now that I didn't just cause him even more suffering by doing that. Well, only three days but they were undoubtedly horrible for him and for the rest of his family to witness. The whole thing was traumatic and no amount of expectation makes the loss or the experience of it OK.
Someday I will probably get there, to that place where memories take over and fill the void....blah blah blah. Right now, I kind of don't even want to hear those three painful letters that killed him - the disease that tortured and slowly killed my fiancé right in front of me despite every effort to stop it. I am still in love with him and now I can't sleep.
:sad:
He went down in a week and died at home. For the later part of that last week he was asking us to take his BiPap mask off but we didn't know that's what he was doing, or more likely, we didn't want to believe it. He knew days before we did that taking it off would kill him and we didn't know he was ready. I stay awake at night now thinking about how he suffered those days, wanting to die. Just one week before that final decent he was walking around on his own two feet, with my help. He and I were managing all of it day after day, we were together, we were communicating and in love. Then, everything changed and he was gone within a week. And now I can't sleep.
That morning he died, the family and I sat by his side. I read to him as many Facebook messages as I could from friends wishing us both well and telling us that they were thinking of us and that they loved us. One friend had performed and recorded one of his songs (he was a singer/songwriter) and it sounded great. Only a week earlier he would have been nuts about it. When that song ended he stopped breathing, with his eyes open, but wasn't gone yet. I reclined his chair so he could lay flat for the first time in almost a year. Then I laid down with him, next to him, for the first time in almost a year. He was warm and it was exactly like it used to be when we'd spend hours together like that, laying down together. With my eyes closed I could imagine we were just still indulging in that together. Then I realized I should pay attention to whether or not he really was gone yet, probably acting on my caregiver instinct. He had already stopped breathing but his lips were twitching. So I felt the pulse in his wrist and counted three pulses over the course of one full minute, the last one taking the longest. Then there were none. At that point the part of my body that was touching his body felt a strong tingling feeling. As paranormal as that sounds, it really did happen....I felt it and then he was gone. I think it was his energy and maybe I absorbed some of it. I hope, like those who have had near death experiences claim, he felt peace as he left his body. Who knows what happened to him next.
I think about how for months before he had become obsessed about dying, always asking Hospice what it would be like, how it would happen, how we would know if it was happening. Nobody ever really answered him well enough because there's really not an answer. The only thing we knew was that it was inevitable and was going to happen sooner than later. I think he just worked it out on his own, in the end.
So, it sucked and it wasn't "beautiful". Maybe some day I'll see it that way but for now it was horrible. It happened over a month ago but I still spend my time crying and missing him. I also spend my time trying to do something productive but finding reasons not to. Mostly, I can't sleep. I take stuff to help sleep but I wake up after 2 or 3 hours, no matter what.
I never wrote on this forum enough, I mostly read what other people wrote and took the advice. I did reply a couple of times and always meant to do more. I can write a book about caring for a person with Bulbar ALS. I probably should some day. That's why I wrote this post...for others who were told that the end stage, as in THE end, would be comfortable and everything would be cozy and OK. Well it wasn't OK. Everything he had always feared, being immobile and helpless, unable to communicate, trapped....that all happened despite my promise that I wouldn't let it happen that way and that I'd keep him comfortable with the abundance of Hospice drugs. I guess I could be grateful that the worst of it only lasted a week. I had no idea how fast he would be taken down. If I could do it over, knowing what I know now, as much as I doubt I could do it I would hasten his death for him when he asked me to, if possible. It wouldn't have taken much, I realize now. I was in such caregiver mode that I kept him alive longer than he wanted. One night I even instinctively re-started his heart after a long period of agitation and panic. I hope now that I didn't just cause him even more suffering by doing that. Well, only three days but they were undoubtedly horrible for him and for the rest of his family to witness. The whole thing was traumatic and no amount of expectation makes the loss or the experience of it OK.
Someday I will probably get there, to that place where memories take over and fill the void....blah blah blah. Right now, I kind of don't even want to hear those three painful letters that killed him - the disease that tortured and slowly killed my fiancé right in front of me despite every effort to stop it. I am still in love with him and now I can't sleep.
:sad:
