msde302
Active member
- Joined
- Jan 5, 2008
- Messages
- 88
- Reason
- CALS
- Country
- US
- State
- MN
- City
- St. Paul
My mom (59) was diagnosed about a year ago (she was misdiagnosed in 2005 - they thought that her paralysis was a result of radiation from her cancer). By the time she was diagnosed, she had already lost the use of both legs and half the torso.
At this point, she has no use of her left arm and minimal use in her right (enough at least to still sort of operate her power wheel chair). Eating for her is pretty slow and I need to feed her. She chokes at nearly every meal, but she's a good sport. Her neurologist has had to reschedule our last two clinic appointments, so we haven't been in since October and won't be going back until May. I know that when we go in May, he'll bring up the PEG. My mom has said she doesn't want one. Part of it is that I have to turn her over a few times each night from one hip to the other and she thinks that the PEG will make that really difficult.
I've read about a couple of people who have elected not to get the PEG, I'm wondering two things. One, what are your experiences with being immobile and having a PEG during the night. Two, what might I expect if she continues to eat less and less? She's told the hospice nurse that she doesn't like to eat because nothing sounds good to her, and that it's too much work.
She's a lovely stubborn Irish first child. I want to respect her wishes, but I'd also like her to be informed.
Thanks so much!
At this point, she has no use of her left arm and minimal use in her right (enough at least to still sort of operate her power wheel chair). Eating for her is pretty slow and I need to feed her. She chokes at nearly every meal, but she's a good sport. Her neurologist has had to reschedule our last two clinic appointments, so we haven't been in since October and won't be going back until May. I know that when we go in May, he'll bring up the PEG. My mom has said she doesn't want one. Part of it is that I have to turn her over a few times each night from one hip to the other and she thinks that the PEG will make that really difficult.
I've read about a couple of people who have elected not to get the PEG, I'm wondering two things. One, what are your experiences with being immobile and having a PEG during the night. Two, what might I expect if she continues to eat less and less? She's told the hospice nurse that she doesn't like to eat because nothing sounds good to her, and that it's too much work.
She's a lovely stubborn Irish first child. I want to respect her wishes, but I'd also like her to be informed.
Thanks so much!