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Nov 10, 2006
991 Bayberry Dr
Hi all,
It's been a couple of months since I have written. My sister was having a hard time breathing in Sept and she has made it through the holidays. By pure will on her part. Her daughter is taking care of her now and we have night aids and aids during the day. The hospice nurse called me last friday and said she heard fluid and told me to get prepared for a downward spiral. I have been feeling prepared but so many of you are right. All of sudden you want to scream NO not now. I am not ready, but I know she can't go on like this forever. She will not take pain meds. They have prescribed some medicine to dry up the secretions, but the nurse called me today to let me know that she feels every thing she is getting now is aspirating into her lungs. She only really gets frozen liquids, like juice or her coke that she loves, she doesn't like milk products and she still insists on have a couple of table spoons of her favor lemon drop cake, my cousin brings it in for her. I don't know how long this process is going to take. I want to go and be with her and the nurse said she can't tell me how long. It could be quick or it could linger. I call the house every day and my niece puts me on speaker and on a good day she can use her talking machine, on a bad day, she blinks. I will say Thank God for that speaking machine, she lost her voice in April and if we hadn't had that I believe she would have just given up. My sister has never really liked medicine and doesn't want pain meds and I don't really know how much pain she is in. She is having to be suctioned often because of the saliva build up and she is having a hard time breathing some times but the nurse feels that is mostly due to her neck muscles are not there anymore. I took care of her for six months and now I am back in Ohio and have had to go to work full time, Which my sister has enjoyed me doing, because she loves to hear my stories and she did a similar job and has been able to give me great advice. I cherish the phone calls every day. I don't know what I will do when I can't call. I want to be positive for her. I want to be with her, she has been like a mother to me most of my life. I want to know how to help her transistion and know she will be ok. Is it painful to have your lungs fill? Is it quiet and sneaks you? I know my neice is scared but she is handling it with grace and my sister just keeps going. Has anyone who has had their loved ones have aspiration in there lungs and start to fill with fluid. Can they go for a while? weeks? days? I just don't know what I should do. I read another post and I saw someone else was going through it too, but they got better/ The nurse said what is there, is there and we won't be able to get the fluid out. My sister does not have a feeding tube and has a DNR and she will not be put on a vent per her request. I just don't know how long she can do this. Any advice?
Hi Pam- these are unsettling times, for sure. I am so sorry. There is some information on the hospice site about end stages, but that only solves part of your problem. Only somebody who has been in your shoes can know what it is like to be so far away. I am sorry this is hapening to you. Cordially, Cindy
May god shine his love and mercy aon all of you - sorry i have nothing to offer but pure support - keep her comfortable as best as you can...
Hi Pam, I DO know what you are going thru. My sister has ALS and is in the final stages of this horrible disease. She lives in Oklahoma and I live in Indiana. Since we realized what she had in March of 2007 I have made 11 trips out to be with her, I am now on my 12th trip and probably my last. Her lungs are mostly full and she is now breathing with the top of her lungs, very shallow.
I know how hard it is to live so far away and not know what is going on with her daily, Ive been there. Your mind is consumed with the sister you love and grew up with, the one that you share almost every memory with. Hang in there and check back with this group, its gives you comfort.
My neice is ordinary girl. She has been wonderful to her mother.
How are things this weekend, Pam?
Pam and Carla,

Very sorry both of you are witnessing the deterioration of your sisters' health because of ALS. You are both in my thoughts and prayers...

All I can say is show your love and that will carry you through.
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