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peacecomesfromwithin

Active member
Joined
Jan 31, 2016
Messages
35
Reason
Lost a loved one
Diagnosis
01/2016
Country
US
State
DC
City
Washington
My mom went in to get her PEG today. She didn't really want it, but she said okay. I'm not really sure why.

Actually, I know why. After being in denial for so long, she now will do mostly everything I suggest. It's a terrifying responsibility.

I wanted her to get it because I am not ready for her to die, for her to starve to death slowly while I try and coax food down her throat morning, noon, and night. I want her to be hydrated. I want her to have the most energy that she can, while she can.

And yet - seeing her in tremendous pain at the hospital while the nurses run around like chickens with their heads cut off, trying to reach the neurological resident to see what painkillers are okay for ALS patients who can't swallow pills... seeing her dry heave with the nausea from the pain... seeing her white as a sheet, choking on mucus worse than usual... having to leave her alone to stay overnight in the hospital while I head home to take care of the dogs (who pooped all over the house, by the way)...I can't help but feel like I did this to her for my own peace of mind. Because I can't watch her starve, because I think her life could be a little better with adequate nutrition.

I can't bear to watch her suffer acutely, although she's suffering chronically, constantly. There is no right answer.
 
Peace, I am so sorry and my heart goes to you. I know that the first couple of days are rough but the PEG will make it easier for you and her. She will get nutrients easier and it will not starve. It will also mean that you do not have to coax food down her.

You made the right decision for both of you and it will make her suffering better.

There are no easy answers with ALS. You did not go against your mothers wishes and you should be very proud. You are a great daughter and your mother knows you are there for her and that's what matters the most right now.

I hope she is feeling better tomorrow and you are both in my thoughts.
 
You hit the nail on the head - there is no right answer.

We do what we can with the information we have at the time.

They can medicate her for pain through the peg. They should have had that worked out before the procedure.

Some PALS have a lot of pain after the procedure, my Chris had awful pain for 4 days, then it started to abate quickly. She may be a lot better tomorrow though, so don't beat yourself up over this.

It may not keep her alive much longer, but you know you can keep her hydrated and get some nutrition safely into her. Try and sleep, you will need your energy for her tomorrow, and hopefully not for more dog poop. xx
 
Not easy to watch anybody in pain... You are doing great, a feeding will help her and everybody involved

Take care,

Pat
 
I understand completely that feeling of responsibility when your mother looks to you to make all of her decisions. How fortunate for her that you are there and willing to make these suggestions. Shame on the hospital for not having been ready to treat her pain. I hope she is feeling better very soon, and that you both reap the benefit of having gone through this surgery.
Big hugs.
Becky
 
My sister had terrible pain after. It took a week to go away completely. She ended up being extremely happy she chose a feeding tube. You are doing a great job. Don't beat yourself up
 
I understand the feeling of did I make the right decision. My PALS had his time placed two weeks ago. He didn't want to either. He agreed for me. When I saw him after and he was hurting and white as a ghost, I felt horrible. A couple of days later he was much better. 6 days later, he mowed the yard... We also had to have the bolster loosened twice because he is gaining weight. Don't be too hard on yourself. You made the right decision. These decisions are just HARD.
 
It took a lot of time for my husband to finally agree to have the tube placed.

In the end, it was worth it. He started gaining weight. Better yet, we weren't spending the bulk of time on trying to get the calories he required by feeding solid food. He is the first to admit that this was the best thing for him. I'm sure your mom will, too.

Sorry she is experiencing pain. Hopefully it will be over soon.
 
We finally got discharged from the hospital last night and are home and settled! The nurse just came by and I did my first tube feeding for my mom (she can still eat on her own). It was strange, but manageable. She is in much less pain, thank goodness.

I stressed myself out enough that I've come down with a nasty head cold, and feel like I'm dealing with it worse than my mom with her surgery recovery. Pathetic! Thank goodness work is understanding and giving me the time off I need this week. Mom on the other hand, is already back working on court cases from her desk in her bedroom (punctuated with naps). She is so strong.
 
I am glad she is feeling better. Sorry you are sick. I went thorough pnuemonia and a long list of other things due to the stress and felt I was worse off then my husband. Take care of yourself, get some rest and try not to worry so much. You are a wonderful daughter and I am sure your mother is so proud of you. You are doing great.
 
You sound like a wonderful and caring daughter. Your mom is very lucky to have you taking care of her.

Hugs
Joan
 
I had my peg put in last Monday and I still hurts! I am still losing weight as I can only tolerate 2 cans a day.
Tell me this will get easier?

Jocalyn
 
Jocalyn maybe start your own thread with some more detail and we will try and really help you get going with your peg. If you mean just a few days ago, then yes it will get better, truly xxx
 
Peace you are doing great. The weight of responsibility is real and you continue to face it as it comes.

I'm glad mom is improving. I hope you feel better soon. You will appreciate not having the persistent fear of her choking or starving.
 
How is your mum now peace?
 
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