ordinarygirl
New member
- Joined
- Dec 17, 2007
- Messages
- 5
- Reason
- Loved one DX
- Country
- US
- State
- ok
- City
- cushing
Hi, my name is Chera & my mom is in the late stages of ALS. Only 2 days ago, we had to resort to diapers because even with her husband & extra help we are unable to move her to the potty chair. She lost use of both arms & hands a while back & her legs are now completely useless. We are unable to understand 95% of what she says. Taking care of her is exhausting, but we have many people who help us, so we are blessed.
My mom is very demanding & asks for things constantly. She doesn't rest at night because she needs a hair moved, her nose scratched, her pillow moved, etc. She is hot when the heater kicks on & needs her sheet off. Then when it goes off, she wants it back on. She wants the fan on, then back off. No exaggeration - most nights she asks for something every 2 minutes. Is this common? I know that not being able to do things for yourself would make you notice every tiny thing, but I feel that she takes it to the extreme. Those of us closest to her (her husband, myself & my sister) get so frustrated with her that we feel like we're going to lose it sometimes. I have a 2-year-old that is with me when I am caring for her & it's all I can do to not have a nervous breakdown. She isn't quite as demanding in the daytime, but still asks for stuff a lot.
We never expected her to last this long & I feel guilty that I am ready for it to be over. I have spent the past 7 months being at her house almost daily & I want my life back. Like I said, we have lots of help, but this is so hard. I love my mom dearly, but her quality of life is gone. It's depressing to think that when my life isn't so stressful, then I'll be without my mom.
My mom is very demanding & asks for things constantly. She doesn't rest at night because she needs a hair moved, her nose scratched, her pillow moved, etc. She is hot when the heater kicks on & needs her sheet off. Then when it goes off, she wants it back on. She wants the fan on, then back off. No exaggeration - most nights she asks for something every 2 minutes. Is this common? I know that not being able to do things for yourself would make you notice every tiny thing, but I feel that she takes it to the extreme. Those of us closest to her (her husband, myself & my sister) get so frustrated with her that we feel like we're going to lose it sometimes. I have a 2-year-old that is with me when I am caring for her & it's all I can do to not have a nervous breakdown. She isn't quite as demanding in the daytime, but still asks for stuff a lot.
We never expected her to last this long & I feel guilty that I am ready for it to be over. I have spent the past 7 months being at her house almost daily & I want my life back. Like I said, we have lots of help, but this is so hard. I love my mom dearly, but her quality of life is gone. It's depressing to think that when my life isn't so stressful, then I'll be without my mom.