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peacecomesfromwithin

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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).
 

peacecomesfromwithin

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taking a turn for the worse.

Just tried to pour my heart out with a long thread and it got lost in the ether. Mom has taken a turn for the worse and is in a lot of pain. Pneumonia, appendicitis, UTI. Can't breathe without BiPAP. Can't tolerate it without pain meds.

Was told to come home from my training by the doctor this morning as she might be nearing the end.

I can see the decision looming. If she isn't strong enough to breathe on her own and can't tolerate the BiPAP without basically being sedated 24/7, how much longer do we want to go with this?

Family who has been useless since diagnosis is finally making their way out here. Hopefully they will help rather than cause more chaos.

My life feels like it is ending along with my mom's.
 

Nikki J

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It was just in moderation. Merged threads in case you said something in 0post 2 that was not in post1
 

soonerwife

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So sorry that things are so difficult right now peacecomesfromwithin. It really does suck. I wish I had some good advice but all have is hugs!
 

Barbie

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sending a hug
 

scaredwifetx

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peacecomesfromwithin, I am wish I could say something that would make you feel better. I will keep you and your mother in my prayers. I m sure she is very happy that you are there. Hugs!
 

Erika

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I'm so sorry everything has happened so sudden. You and your mom are in my thoughts and prayers tonight.
-Erika
 

lgelb

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Peace, I'm sorry this is going fast, and it might slow down. Or not. But this I know: (1) she should be able to tolerate and even want the BiPAP without pain meds, so I'd find another pulmo or RT to try to make that happen and (2) If she wants to lie down, let her lie down, with or without it. In a hospital bed w/ head elevated, her airway per se shouldn't be compromised by that, but if it is, you did what she wanted. If she's not getting to sleep on her own, apart from meds, she's probably exhausted and that makes it all harder for her. And as you know, O2 is not the answer long-term.

Best,
Laurie
 
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affected

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I'm so sorry, what a sudden turn.

Falls are so dangerous, and so out of our control. This whole disease is out of our control and why we just can't give predictions.

If you can, try to find the place of peace again, and give her lots of love. You can't control this beast, but you can love your mum - no matter how confused she may seem, and how much pain, she will feel your love.
 

peacecomesfromwithin

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Thanks all for your good vibes.

I reread my post and couldn't help but think what a spoiled bourgeois jerk I am, complaining about my travels and my fancy schools and how I have to give them up to come and take care of my mom. I feel such a tension between all of that fancy stuff I've worked so hard to get my whole life and wanting to care for my mom. SHE was the one who went back to law school at the age of 40 when my parents divorced so she could give me every opportunity imaginable. SHE was the one who always told me to pursue my dreams and live life to the fullest.

She sacrificed so much for me. She is responsible for every success that I have today. I am so, so, so incredibly sad that this disease is taking her away from me so quickly. And I'm so honored that I can be with her. I guess these are the true moments of forging character in life. I will remember these days forever.
 

Dave K

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We have been through similar times with my wife. For me, it is the worst, most traumatic experience, as I am thinking I am watching my wife die and wondering if we should be offering to help her stop the suffering permanently. Each time it turned out to be a passing event, and we were able to restore comfort. What I say to her is "I will always be with you, no matter what.
Whatever decisions you make about your care and treatment, I will support." That seems to help both of us get through it.
 

peacecomesfromwithin

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What a crazy time. Had a long meeting with the palliative care team yesterday and determined that we don't want her to be on the BiPAP 24/7 because it is against her advance directive. But finding the right combination and amount of meds to keep her comfortable just on O2 has been quite a challenge.

On the other hand, starting since 3:30am, she has been so much more with it. She actually hears what I'm saying and responds. Her personality is back. I'm wondering if a) she's recovering from the infections and feeling better overall. 2) if she's just out of pain, so isn't so agitated, even though in a morphine haze. c) is doing that horrible "i'm about to die so i'll have a burst of energy and improvement" phase. I guess only time will tell.
 

affected

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hugs, such a hard time as we are never really sure.

Is she being given any nutrition and fluids?
 

peacecomesfromwithin

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She is being given nutrition and fluids and antibiotics still. One of the doctors mentioned that at some point I should think about whether I want to discontinue those as well. I wasn't sure at the time. Watching this drawn out suffering makes me think that we should? I feel like I am actively killing my mother.

They still can't get her meds right as her breathing gets worse. Night doc wouldn't change dosage so I've had to listen to her gasp all night, agitated, with nothing I can do. This is torture for everyone.
 
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