GrievingSon
New member
- Joined
- Mar 23, 2016
- Messages
- 4
- Reason
- Loved one DX
- Country
- US
- State
- CA
- City
- N/A
This is going to be a long post but I'm so terrified and I need guidance. I will start from the beginning.
3 years ago my dad ended up with foot drop, CT scan also showed pinched nerves in his back, he had back surgery and began walking with a brace. 6 Months later he fell at work and broke his hip, he never did re-gain movement in that leg. We always thought it was back problems and he just needed another surgery..
Another year goes by, he ocassionally says he has a "tickle" in his throat, and sometimes fluids go "down the wrong pipe" but he's okay he says. In the afternoons, dementia like symptoms start to set in, I get very scared. Why is he able to talk to me so well in the morning, but in the afternoon he can't answer a yes or no question correctly? Things like "Do you want Mc Donalds or do want Taco Bell?" are answered with "Yes" "No dad let me help you, which one do you want in particular?" "Yes" I would get so frustrated because I didn't understand and I feel so bad.
Time goes on and eventually his hands begin to show signs of weakness and they begin to look bad, how is it spreading to his hands if his back is the problem, I asked over and over.
3 years after the foot drop, he develops a really, really bad cough. Pneumonia.. I think okay no big deal, a few weeks in the hospital and he's going to come home with me. He did manage to come home.. For a day. He had to call 911 because he couldn't breath.
They tell me he's not strong enough to cough up the secretions in his lungs, they send him off to UCSF and I get a call a week later.. "Your fathers dad had ALS, and he has it too" What in the world is ALS I thought? How could this be? I cried, and cried. A grown 29 year old man, I'd never cried in 20 years, I was in agony.
Beds are full, takes two weeks for him to come back to the local hospital, and by the time he comes back, I'm able to talk to him the first day. Although he was anxious and I could tell he was miserable, I say it's going to be okay dad, do you want me to let you rest? "Yes, all I want to do is sleep in here, can you please shut the door?" "Okay dad, love you and im sorry"
The next day, he wasn't able to focus, he would look at me every few minutes in a daze, then go back to sleep. He would grab a glass of water and drink it laying down in bed and I'd have to race to raise the bed every 5 minutes, this repeated for almost an hour. Then he went on to start grabbing his urinal every 5 minutes saying "I don't have to go yet" "well don't go dad it's okay if you dont have to" but then he would keep trying and he would say "I'm afraid they're going to put that tube in me" I said "no dad, they aren't, it's okay." Then lunch time came and I watched him struggle so hard to eat, one small bite at a time, although he didn't choke, you could tell his throat muscles were effected.
At this point I'm scared and someone tells me to ask for a palliative consult.. The palliative director comes in and says "This is going to be a hard conversation, I know your dad is still there in a sense, but you have to realize that he's already gone." "There's been studies, feeding tubes and hydration just prolong the suffering, it's best if we move on to comfort care." At first I cry and cry, and I say okay doc, you know best. I go back and tell my dad "I'm going to let them put you on morphine, is that okay?, I'm so sorry dad, I love you" he said "Yes, thank you. I love you too" and that was the last time I would have a coherent conversation with my father.
The next day I come in, he is restless, 25 mcg/hr fentanyl and .5 ativan, he's grabbing at the bed and uncomfortable. I ask them to up the meds because I can't stand watching him suffer. They tell me "he won't be thirsty, or hungry, he won't feel it." I come back the next day to find out he'd ripped his IV's out and I tell him I'm so sorry and I'll NEVER know what he said next.. Either "I need to die" or "I need to drink" but his mouth was blistered and sore and nomatter how sedated when I would touch his lips with the sponge he would come to and try to drink from it, but he bit down on it with all his strength and I was so scared. "Dad, please let go of it, you're scaring me I don't want you to choke" he never did let go, I had to pull it from his mouth. Was he THAT thirsty, or was it an involuntary bodily movement? Is it delirium, or is he ripping his IV's out because he's suffering tremendously? Or is it normal process, and he was ready to go? I'm so torn. Please someone help me understand.
The last coherent thing he would say to us was "I need a pillow" but then when I gave it to him, he took it out and didn't want it. I said "Dad, I'm going to have them give you more pain meds, I hope you know I'm doing what I think is best for you" He somehow nodded yes. I said "You understand right?" and he nodded yes.
Am I letting them dehydrate him to death? Should I stop this and let him come too and try to talk to him? It's been 5 days with no fluids, the nurses told me nothing by mouth because it would prolong his suffering. They upped his fentanyl all the way to 90 mcg/hr and he's finally sleeping. He's never had opiates before, I can't help but think he isn't ready to go and I let the doctor talk me into a huge mistake. Is this normal part of grieving? Did I need to end his suffering? What do I do. Will he ever forgive me? I can't take this wondering..
3 years ago my dad ended up with foot drop, CT scan also showed pinched nerves in his back, he had back surgery and began walking with a brace. 6 Months later he fell at work and broke his hip, he never did re-gain movement in that leg. We always thought it was back problems and he just needed another surgery..
Another year goes by, he ocassionally says he has a "tickle" in his throat, and sometimes fluids go "down the wrong pipe" but he's okay he says. In the afternoons, dementia like symptoms start to set in, I get very scared. Why is he able to talk to me so well in the morning, but in the afternoon he can't answer a yes or no question correctly? Things like "Do you want Mc Donalds or do want Taco Bell?" are answered with "Yes" "No dad let me help you, which one do you want in particular?" "Yes" I would get so frustrated because I didn't understand and I feel so bad.
Time goes on and eventually his hands begin to show signs of weakness and they begin to look bad, how is it spreading to his hands if his back is the problem, I asked over and over.
3 years after the foot drop, he develops a really, really bad cough. Pneumonia.. I think okay no big deal, a few weeks in the hospital and he's going to come home with me. He did manage to come home.. For a day. He had to call 911 because he couldn't breath.
They tell me he's not strong enough to cough up the secretions in his lungs, they send him off to UCSF and I get a call a week later.. "Your fathers dad had ALS, and he has it too" What in the world is ALS I thought? How could this be? I cried, and cried. A grown 29 year old man, I'd never cried in 20 years, I was in agony.
Beds are full, takes two weeks for him to come back to the local hospital, and by the time he comes back, I'm able to talk to him the first day. Although he was anxious and I could tell he was miserable, I say it's going to be okay dad, do you want me to let you rest? "Yes, all I want to do is sleep in here, can you please shut the door?" "Okay dad, love you and im sorry"
The next day, he wasn't able to focus, he would look at me every few minutes in a daze, then go back to sleep. He would grab a glass of water and drink it laying down in bed and I'd have to race to raise the bed every 5 minutes, this repeated for almost an hour. Then he went on to start grabbing his urinal every 5 minutes saying "I don't have to go yet" "well don't go dad it's okay if you dont have to" but then he would keep trying and he would say "I'm afraid they're going to put that tube in me" I said "no dad, they aren't, it's okay." Then lunch time came and I watched him struggle so hard to eat, one small bite at a time, although he didn't choke, you could tell his throat muscles were effected.
At this point I'm scared and someone tells me to ask for a palliative consult.. The palliative director comes in and says "This is going to be a hard conversation, I know your dad is still there in a sense, but you have to realize that he's already gone." "There's been studies, feeding tubes and hydration just prolong the suffering, it's best if we move on to comfort care." At first I cry and cry, and I say okay doc, you know best. I go back and tell my dad "I'm going to let them put you on morphine, is that okay?, I'm so sorry dad, I love you" he said "Yes, thank you. I love you too" and that was the last time I would have a coherent conversation with my father.
The next day I come in, he is restless, 25 mcg/hr fentanyl and .5 ativan, he's grabbing at the bed and uncomfortable. I ask them to up the meds because I can't stand watching him suffer. They tell me "he won't be thirsty, or hungry, he won't feel it." I come back the next day to find out he'd ripped his IV's out and I tell him I'm so sorry and I'll NEVER know what he said next.. Either "I need to die" or "I need to drink" but his mouth was blistered and sore and nomatter how sedated when I would touch his lips with the sponge he would come to and try to drink from it, but he bit down on it with all his strength and I was so scared. "Dad, please let go of it, you're scaring me I don't want you to choke" he never did let go, I had to pull it from his mouth. Was he THAT thirsty, or was it an involuntary bodily movement? Is it delirium, or is he ripping his IV's out because he's suffering tremendously? Or is it normal process, and he was ready to go? I'm so torn. Please someone help me understand.
The last coherent thing he would say to us was "I need a pillow" but then when I gave it to him, he took it out and didn't want it. I said "Dad, I'm going to have them give you more pain meds, I hope you know I'm doing what I think is best for you" He somehow nodded yes. I said "You understand right?" and he nodded yes.
Am I letting them dehydrate him to death? Should I stop this and let him come too and try to talk to him? It's been 5 days with no fluids, the nurses told me nothing by mouth because it would prolong his suffering. They upped his fentanyl all the way to 90 mcg/hr and he's finally sleeping. He's never had opiates before, I can't help but think he isn't ready to go and I let the doctor talk me into a huge mistake. Is this normal part of grieving? Did I need to end his suffering? What do I do. Will he ever forgive me? I can't take this wondering..