Status
Not open for further replies.

gilly

Active member
Joined
Jul 24, 2006
Messages
56
Country
US
State
NY
City
New York City
hi everyone.

i don't have much to say or ask. just having a spurt of bad feelings about my aunt. she's not doing so great. choking at night. can't swallow her food very well. i don't know how to approach the idea of a feeding tube with her. everyone is still trying to pretend she's fine i think. and is the bipap machine for sleeping? what does it help with? perhaps it's something that would prevent her from choking at night? i don't know.

i wish i could come up with a way to cure ALS. i hate hate hate knowing that my aunt or any of you are suffering. i want so badly to just take it all away and make it all better. sometimes i think about it too hard and i am just shocked that this is happening to my aunt. it's surreal.

sorry for the rambling. and i hate to be a downer. just one of those days, you know? and not many people really understand how you feel unless they're going through the same thing.

love to you all.
nicole
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Nicole. Sorry you're having a bad day. We all get them once in a while. Just try and remember tomorrow may be a better day. The Bipap is usually started just for sleeping or lying down. It gives the lungs and diaphram a chance to rest at night and gives you more energy in the day because you usually sleep better with it on. Some people do use it 24/7 when their muscles get very weak. I'm not sure why she is choking at night. It could be the muscles relaxing in her throat too much and closing her windpipe or it could be excess saliva choking her. There are meds to help with saliva production. The feeding tube would help if she is choking on food or drinks. Use the search feature up top and type in PEG or feeding tube and it should give you some results from people who have them. Take care. AL.
 

Barbie4

Distinguished member
Joined
Mar 26, 2006
Messages
139
Country
CA
State
Ontario
City
Everett
I Understand

Hi Nicole:

I so understand your feelings. I have tried to distance myself from ALS and ground my own life a bit more, but it is a challenge for sure. I try to take ALS free days, but I can't, It never leaves my mind. I am not even the one suffering with this disease. Everyday, I try to balance my own life, but it will always be hard.
I am frightened too. Sometimes, I can't remember what life was like before all of this.
We will come through this okay. We have to, for our loved ones. One day at a time. Cry when you need to, and vent when you need to. I am glad you found the courage to write what you did, as I was reminded that I am not alone with my feelings.
The bi pap machine is for breathing as far as I know, I am not sure it will help for the choking at night. I am sure Al or others will clarify for you.
To try and cope, I try and rent a funny movie or read an upbeat book sometimes.
I appreciate a hot cup of tea on a rainy day alot more and I find comfort in knowing that I am doing all I can to help my friend. It is all I can do and you can too. I am sure you are doing all you can for your Aunt and taking care of yourself is one of them. She needs you now, and that is why you need to take extra care of yourself. She is lucky to have such a wonderful niece.

Thinking of you, Stay strong. :?:

Barb
 

papaw50

Active member
Joined
Jun 19, 2006
Messages
38
Reason
PALS
Country
US
State
West Virginia
City
Ravenswood
hi

From what all I've read all this forum, getting a feeding tube is not as bad as it sounds and it helps with the quality of their life.
Approach her with the facts - maybe print off as much as you can about it, and let her read for herself.
Approach her with love - that it's only because you care that you're trying to help her make this decision.
No one truly understands how one feels thats going thru the disease. We can sympathize with them, care for them, be there for them...but truly understand? I just don't think so.
Just like until one loses a loved one - they really don't understand how it feels to grieve. Until I lost my daddy about six years ago, I was like that. I would go and visit with those who'd lost a loved one - but I really didn't know their grief. I didn't know that losing a loved just about knocks the breathe out of you, your heart physically hurts and you just don't think you can make it through. But, you learn that in time, you can breathe again and you have made it through, by the grace of God. You look back and realize that in this life, we all will have troubles, sorrows, death, pain, etc...it's how you deal with it and how you let it affect your life. Let's face it - life is not easy. It is really hard sometimes. BUT, we just have to walk this journey the best we can and live each day at a time.
I hope you getting to feeling better.
On days that I find myself getting down - I try to concentrate on the good things of life. I try to think of how my husband and I have had 31 wonderful years together. We have so many good memories - no one can ever take those away from my heart! Some people lose a child at a very young age. So, I try to focus on the fact that God has allowed my husband to live for these 50 years and who knows? he could have 20 - 30 more years to live! We have to have faith and hope. We don't have all the answers - why some live to a ripe old age, while others are taken from this world at a very young age. We just have to enjoy the time we do have and live life to the fullest!
 

gilly

Active member
Joined
Jul 24, 2006
Messages
56
Country
US
State
NY
City
New York City
thank you everyone.

you are all so helpful and this forum is so wonderful to comfort PALS and their freinds and families. thank god for it. i am going to watch a funny movie and then have dinner with my boyfriend's parents... they certainly take me away from any harsh realities - the most bizarre people i've ever met! funny.

thank you for caring so much and i hope everyone has a nice night.

thank you thank you thankyou.
 
Status
Not open for further replies.
Top