mlkchung
New member
- Joined
- Sep 6, 2008
- Messages
- 6
- Reason
- Loved one DX
- Diagnosis
- 01/2000
- Country
- UK
Hello everyone,
To make a very long hard story short, my mom has ALS is if fully paralyzed. She is at home now with a ventilator and a feeding tube through her nose. She is unable to move her lips and head now so it's getting harder and harder and harder to try to understand. We usually just ask, look into her eyes, look for blinks of answers.
It sounds awful because it is. I appreciate this forum so much and I thank you all for all the information and support your words have given me. There are a few things i was wondering if i can get some advice on and maybe even some answers.
ACID REFLUX and Feeding
1- She suffers acid reflux at times and it seems awfully painful, is this quite the norm when you only diet is liquid? Any recommendations on what she can take?
2- How long should she stay seated slightly upright after her feedings as it is quite painful for her to sit up due to her lower back and tailbone pains.
WHAT CAN I DO
1- Massage her? Read to her? As much as i try to put myself in her situation, what can i do to make her feel better, happier?
2- Sometimes when we try to communicate, my own feelings arise, and in my mind i imagine "Does she want to end this?" , "Does she want to go through this suffering?" Although the choice to have the ventilator was hers, , does she regret it?
3- Is there anything else that i can do? And stages that come after this? Any precautions that i should take?
4- This sounds awful and makes me feel awful to type this but how do people that are fully reliant on a ventilator and feeding tube die?
CHIN STRAP
1- Any recommendations? It's hard for her to close her mouth now, and we manually hold her chin up when we suction her saliva. We're using a ribbon now, looks cute actually with the bow on her head, but really want something more comfortable for her.
CUSTOM WHEELCHAIR
1- Any information on people fully paralyzed that move and travel about on wheelchairs? I'm planning on getting her one but is it too hard for her? If not, i will do anything to get her one. But any experiences?
I love my mom so much and i know all of you understand this as many of you have loved ones that are going through the same thing. I feel useless as i sit by my mom and hold her hand as she lies there. I know that in her mind she is there , wants to dance, wants to talk, wants to move, and it seriously kills me to feel that and see that in her eyes.
Optimistic...i try to be. It's friggin hard.
Thanks for reading this...hope to talk, chat or e-mail soon...
Margaret Chung
Hong Kong
To make a very long hard story short, my mom has ALS is if fully paralyzed. She is at home now with a ventilator and a feeding tube through her nose. She is unable to move her lips and head now so it's getting harder and harder and harder to try to understand. We usually just ask, look into her eyes, look for blinks of answers.
It sounds awful because it is. I appreciate this forum so much and I thank you all for all the information and support your words have given me. There are a few things i was wondering if i can get some advice on and maybe even some answers.
ACID REFLUX and Feeding
1- She suffers acid reflux at times and it seems awfully painful, is this quite the norm when you only diet is liquid? Any recommendations on what she can take?
2- How long should she stay seated slightly upright after her feedings as it is quite painful for her to sit up due to her lower back and tailbone pains.
WHAT CAN I DO
1- Massage her? Read to her? As much as i try to put myself in her situation, what can i do to make her feel better, happier?
2- Sometimes when we try to communicate, my own feelings arise, and in my mind i imagine "Does she want to end this?" , "Does she want to go through this suffering?" Although the choice to have the ventilator was hers, , does she regret it?
3- Is there anything else that i can do? And stages that come after this? Any precautions that i should take?
4- This sounds awful and makes me feel awful to type this but how do people that are fully reliant on a ventilator and feeding tube die?
CHIN STRAP
1- Any recommendations? It's hard for her to close her mouth now, and we manually hold her chin up when we suction her saliva. We're using a ribbon now, looks cute actually with the bow on her head, but really want something more comfortable for her.
CUSTOM WHEELCHAIR
1- Any information on people fully paralyzed that move and travel about on wheelchairs? I'm planning on getting her one but is it too hard for her? If not, i will do anything to get her one. But any experiences?
I love my mom so much and i know all of you understand this as many of you have loved ones that are going through the same thing. I feel useless as i sit by my mom and hold her hand as she lies there. I know that in her mind she is there , wants to dance, wants to talk, wants to move, and it seriously kills me to feel that and see that in her eyes.
Optimistic...i try to be. It's friggin hard.
Thanks for reading this...hope to talk, chat or e-mail soon...
Margaret Chung
Hong Kong