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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
 
Dear Margaret...you have such a load on your shoulders. I will be praying for you and you mom. I can't give you a lot of advise. My PALS is in his powerchair all day. We have an air cushion that we can adjust the air pressure in to make the pain better. It's called a "ROHO" seat. He has a lot of issues with his lower back and tail-bone too.

As far as the sitting up after feeding...we were told he needs to stay partially upright for at least 30 min.

We all know it's very hard to sit and watch this happen to a loved one. Try to get a breather for yourself to recharge. It helps you stay focused when you are with your mom. Does she have anything that really interests her? Books? movies? magazines? family stories?
 
You ask some hard questions as everyone is so different. I am almost as bad as your mom, but with the help of a ROHO mattress on my bed and a ROHO cushion on my power wheelchair life is tolerable. I live in my wheelchair all day, but it does get extremely uncomfortable by night time.

I do think a good wheelchair is a great idea and it will get her out of bed and able to expand her world. I would not think it would be anymore uncomfortable than staying in bed.

As far as what you can do for her - I don't know what she would like. You know her better than anyone so ask her, don't be afraid to ask her all the questions you have. Her mind is still there so she is very capable to answer them. Just ask one question at a time and wait for her to answer, they should be "yes" or "no" question she can answer by blinking her eyes.
If you get a wheelchair this should allow you to take her out, from my perspective that should help a lot.
 
I take a pill called Zantac for the acid reflux, and it has made my life a lot easier. I take it at night and it works all day.

I find that 30 minutes isn't long enough for me to sit upright after eating, anymore; I make it a full hour, although I eat reclining, but propped up on four pillows. After a half hour, I see if I can remove one pillow without the food flowing up into my throat. If it comes up, I put the pillow back or go to a fully seated upright position.

Without communication, it will be hard for you to know if the food has settled or not, but if she suffers from reflux, probably the longer she can tolerate being upright, the better. If she likes music, that might help her relax and pass the time while the food settles.

I can close my teeth, but not my lips, so I just go around with my mouth open. I usually have a tissue in my mouth, except when lying down or reclining.

Bless you for being there for her and caring so much. I know how hard it must be.
 
Margaret, Welcome to the forum and just know that you are not alone on this journey :] Joel, Cris and Beth have given you excellent suggestions. Did you get the power wheelchair or the Zantac? The only question that was not addressed was "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?" I don't think that is a awful question at all. I would guess that death in that situation will be from a Pneumonia or a Sepsis. In the clinical setting we always refer to Pneumonia as "the old person's friend"-very peaceful. Bless you for the love and the care of your Momma. hugs, Kay Marie
 
Thak you all for replying! I love this forum as i feel i'm understood. My mom is in the hospital fighting another infection. This time the doctor told us that her left lower lung has collapsed due to mucous build up. They stuck some scopy (forgot the name>.<) dowm her throat in her lungs to get a better look but was unable to see the left side as it was too collapsed. but for what they can reach, they flushed out and sucked out the excess mucous.

The doctor told us that she is very strong and that she can beat the infections once and twice but there is a chance that she will lose because her detioration is getting worse. They said that if the infection attacks hard, there is only a matter of hours that she may not be here. Scared. Sad.

I was reading online somewhere where they were giving the ALS patients vitamens or something to help combat the infections? Any info, news? I know that when the time comes it does...but are we ever prepared? Was trying to search some treads to see how the patient feels and the needs when they are on a vent, peg and fully paralized. My mom can't communicate , she can only blink. But i tell her stories, and we have a system that helps us know what is bothering her, or what she needs dome. It's not direct and takes a bit of time, but we eventually understand.

i'm blabbing on....but again..this forum is a haven...thank you all! x
 
Hi Mlkchung: Good for you for putting it all out there. Takes courrage. You are asking people who know. My hibands PLS has not progressed as far as you Mom's. I agree, ask her questions and give her time to blink her answer of yes or no. Maybe a head light with a word and symbol board, depending on her neck mobility. I will send a prayer tonight. Good luck!
Sandra
 
Oh Margaret, I read this post last night, and have been thinking about it over night. My dad is not in the stage that your mom is in yet. I just dont know how I am going to deal with it when it gets that bad, it will break my heart just as it is yours hun. I can only answer under the section under "What can I do" numbers 1 and 2. A massage can do wonders for the soul, truly....a good foot massage can help make her feel good emotionally and physically. I remember when my husband was alive, (back when I had a uterus) and I would be seriously PMSing and he would give me a good foot rub, and my symptoms and mood would all change, just like magic! Nothing had ever worked like that before. I have had lots of professional massages, but the feet have all the connections in the body in them, its called reflexology. I used to massage my daughters feet when she was little with constipation, and it fixed that too! ....Also, reading to her, or a really good book on tape, (CD) with a story line she would like. You know the kind of stories she loves, she still loves them, even though she cant express that. Or a good Mom and daughter one like "The Joy Luck Club" I always loved that one. The communication methods about blinking are great that the others here mentioned, use them. I would think that since she was the one who decided to get the vent that she does not regret it. She wants to live. Of course, not like she is currently living, but she is not ready to go, so hang on to her decision and know that it was the right one for her. YES YES, get the wheelchair and get her outside. Fresh air, sunshine (well hopefully sunshine this time of year) can also help with depression. I hope that I have helped a little hun. I know you feel helpless, but you are not helpless. Mom knows how much you love her and I am so glad she has you to take care of her! Please keep us posted sweetie!
Hugs, Kari
 
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