peacecomesfromwithin
Active member
- Joined
- Jan 31, 2016
- Messages
- 35
- Reason
- Lost a loved one
- Diagnosis
- 01/2016
- Country
- US
- State
- DC
- City
- Washington
Everything seemed to be going okay with the PEG. Then, the day before I was supposed to fly to Niger for work for a week, then Paris for a day, then MIT for a week of training, she had a little fall. She was able to get herself up somehow, crawling to the living room and hoisting herself up with the table. I thought nothing of it and left her in the care of a lovely woman who stays with her when I'm out of town.
A few days later, she tells me she's had another fall, except this time in the bathroom. Her legs just collapsed out from under her. She kept telling me that things were okay via text, but the caretaker finally got in touch with me and told her that she hadn't been out of bed in three days, was telling her to give the wrong things through the tube, was incontinent and wouldn't let her change the bed linens. We got her to the hospital and it turns out that she had a small pneumothorax from the fall and pneumonia. Maybe that's what had caused the fall. Then she developed appendicitis, but they said they didn't need to operate and could treat with antibiotics. I felt terrible, but couldn't get a flight back right away. Had a mega breakdown in the middle of the night in a shitty hotel in the middle of nowhere, Niger. I should have tried harder to leave Paris earlier, but I've been having panic attacks and very very dark thoughts and thought that taking a day alone would be fine - as she was in good hands at the hospital and they said she was stable.
I arrived in Boston last night. My mom texted me "I'm dying." I called the nurse who said that she was stable with the BiPap but didn't always want it, that she was slowly recovering from her infections. This morning when I had just started my training, her doctor texted me that she's having trouble breathing and when would I be back? I told her about the text message from the night before and asked if I needed to come back now. She said yes. I ran out of the training and had a total meltdown on the way back to the hotel and then at the airport and then on the plane.
I'm here now and it's this terrible web of confusion. All she wants is pain meds because her body hurts all over. She's very agitated and can't get comfortable. It's only really with the pain meds that she can tolerate the BiPAP. When she's just on oxygen, she fights to lie down completely, but we fight back because she can't maintain an airway that way. As we were fighting I asked her if she wants to die right now, and she asked me if I want her to die. I told her of course not, that is why I wanted her to sit up.
But I don't want her to be in pain, and it seems like she is in constant pain. I can tell that we are getting close to that point. The point where if she can't get well enough to breathe without the BiPAP on her own, that she might want to take it off for good.
How did this happen so fast? I am utterly in shock.
Finally, after not doing ANYTHING to be helpful over the past year since she's deteriorated, her brothers and my half siblings (dad's side) are mobilizing to come out here to say goodbye... Although still no one can quite confirm for me if goodbye needs to be said quite yet.
Thank god for the people on American Airlines who saw tears streaming down my face on the plane out of Boston, put me in first class, gave me wine, and cookies for myself and the nurses. And hugs. Lots of hugs needed. Thank goodness for my friends who are sitting vigil with me at the hospital, taking care of my pets, taking care of me. I don't know what I would do without them. But this still ****ing sucks. (Sorry for the language).
A few days later, she tells me she's had another fall, except this time in the bathroom. Her legs just collapsed out from under her. She kept telling me that things were okay via text, but the caretaker finally got in touch with me and told her that she hadn't been out of bed in three days, was telling her to give the wrong things through the tube, was incontinent and wouldn't let her change the bed linens. We got her to the hospital and it turns out that she had a small pneumothorax from the fall and pneumonia. Maybe that's what had caused the fall. Then she developed appendicitis, but they said they didn't need to operate and could treat with antibiotics. I felt terrible, but couldn't get a flight back right away. Had a mega breakdown in the middle of the night in a shitty hotel in the middle of nowhere, Niger. I should have tried harder to leave Paris earlier, but I've been having panic attacks and very very dark thoughts and thought that taking a day alone would be fine - as she was in good hands at the hospital and they said she was stable.
I arrived in Boston last night. My mom texted me "I'm dying." I called the nurse who said that she was stable with the BiPap but didn't always want it, that she was slowly recovering from her infections. This morning when I had just started my training, her doctor texted me that she's having trouble breathing and when would I be back? I told her about the text message from the night before and asked if I needed to come back now. She said yes. I ran out of the training and had a total meltdown on the way back to the hotel and then at the airport and then on the plane.
I'm here now and it's this terrible web of confusion. All she wants is pain meds because her body hurts all over. She's very agitated and can't get comfortable. It's only really with the pain meds that she can tolerate the BiPAP. When she's just on oxygen, she fights to lie down completely, but we fight back because she can't maintain an airway that way. As we were fighting I asked her if she wants to die right now, and she asked me if I want her to die. I told her of course not, that is why I wanted her to sit up.
But I don't want her to be in pain, and it seems like she is in constant pain. I can tell that we are getting close to that point. The point where if she can't get well enough to breathe without the BiPAP on her own, that she might want to take it off for good.
How did this happen so fast? I am utterly in shock.
Finally, after not doing ANYTHING to be helpful over the past year since she's deteriorated, her brothers and my half siblings (dad's side) are mobilizing to come out here to say goodbye... Although still no one can quite confirm for me if goodbye needs to be said quite yet.
Thank god for the people on American Airlines who saw tears streaming down my face on the plane out of Boston, put me in first class, gave me wine, and cookies for myself and the nurses. And hugs. Lots of hugs needed. Thank goodness for my friends who are sitting vigil with me at the hospital, taking care of my pets, taking care of me. I don't know what I would do without them. But this still ****ing sucks. (Sorry for the language).