Hello to all. I have posted before about my father who is currently living with ALS. Or in his terms "dying with ALS." He has always said that when the time comes he will not allow anyone to prolong his life in any manner, including a vent or feeding tubes. Well, he is coming up on that point in the disease where he must start thinking about that option. He is seriously thinking about using a vent to keep him alive. I truly don't know how to feel about this. I can only tell him how I feel about it, and hope that he makes the right choice that makes him happy. I am one of his caregivers during the day and I have questionable thoughts and feelongs about it. I am not for sure how long it would prolong his life. Does anyone know? Maybe months or years? The docs say right now he only has months left. My mother is having a hard time with this whole thing in general. And she is just assuiming the worst anyway. I work for hospice, and I know it will make things harder for him and his caregivers. I guess I need to know more about having a PALS using a vent. Has anyone ever experinced an ALS patient, (or in my case a family member) who uses/ or has used a ventilator? How is the procedure done? How will he eat, a feeding tube? How long can it prolong life? I am really heart broken about this. If I was my father I would just die comfortably and happy. not prolong the inevitable.

Signed,
Frustrated and concerned family daughter

Hello. I am new at this website. My mother was diagnosed with ALS in 1999. She had been ill for some time but it was difficult discovering what she had. I hope I can answer some questions. Mom had a feeding tube implanted late in 2000. She was choking on food and had trouble with some fluids. She was unable to talk by then, too. It seemed to be fine for about 6 months, but then she began to worsen quickly. She began to fall and began to have trouble writing. She had some trouble with the feeding tube and it had to be replaced after about a year. She was rapidly loosing weight, despite the feeding. The most important thing was that the tubes and machine be cleaned religiously.

She refused to use a ventilator. It made the end a little more difficult, but she feared she would suffer and live longer with it. I know this is going to be hard to read, but a year after the tube was put in she was in great distress. She would ask me to pray that she could go to heaven. She survived for about 16 months with the feeding tube. It did give her that chance to see her 8th grandchild, but she wished that she had not had the feeding tube.

If you have any questions you can contact me.

I hope this helps. I know what a terrible thing this is. My prayers are to you and your family. It is very difficult caring for a loved one with ALS. It is a wonderful thing you are doing for your father, but take care of yourself.

Shane K
Originally posted by slaughter17:
Hello to all. I have posted before about my father who is currently living with ALS. Or in his terms "dying with ALS." He has always said that when the time comes he will not allow anyone to prolong his life in any manner, including a vent or feeding tubes. Well, he is coming up on that point in the disease where he must start thinking about that option. He is seriously thinking about using a vent to keep him alive. I truly don't know how to feel about this. I can only tell him how I feel about it, and hope that he makes the right choice that makes him happy. I am one of his caregivers during the day and I have questionable thoughts and feelongs about it. I am not for sure how long it would prolong his life. Does anyone know? Maybe months or years? The docs say right now he only has months left. My mother is having a hard time with this whole thing in general. And she is just assuiming the worst anyway. I work for hospice, and I know it will make things harder for him and his caregivers. I guess I need to know more about having a PALS using a vent. Has anyone ever experinced an ALS patient, (or in my case a family member) who uses/ or has used a ventilator? How is the procedure done? How will he eat, a feeding tube? How long can it prolong life? I am really heart broken about this. If I was my father I would just die comfortably and happy. not prolong the inevitable.

Signed,
Frustrated and concerned family daughter

Thanks for your reply. My father passed away June 25th 2003. He chose not to use a vent or feeding tubes. He was put on hospice to just keep him comfortable. There was a period during his disease that he was really thinking about using a ventilator. He had DNR and had never thought about going that route before. It took us all by suprise. I felt angry that he would want to prolong his suffering. I was hurt and happy all at the same time. I didn't know what to feel or do. I had no clue of how to care for those machines. I felt scared for him of how he may suffer and pass away in pain and agony. He then changed his mind, and passed very peacefully at home with all of us surrounding him. I am grateful for hospice. I recommend anyone who is terminally ill use them for a better passsing. I have worked for hospice for 3 months and love it. And sites like this one are wonderful for caregivers and patients to come and talk about their concerns and frustrations. I pray for those who are affected by a terminal disease. I pray that it may be as beautiful as it was for me. May God be with you...

My sincere regards to you and your family at this time. God bless you all.

It is odd how time seems to slow when our loved ones are suffering, and then suddenly it is all over and one wonders where those three years went? And now it has been 2 years since mom's death and I wonder where that time went. They were very hard years to grieve. I notice that on certain days I am beginning to remember some of the nice memories, but I still have terrible days of sadness.

While watching an old video on TV there was suddenly some film of mom out walking and talking with the grandkids in the backyard. Just about killed me.

I guess it will never really go away. If I had one wish it would be to see her, even for just a few seconds, in heaven, now healthy and happy, but then I wouldn't want to come back. Would be good to see her healthy again.

Shane K

Shane K

I know exactly how you feel! I wish I could just see my dad for just a minute. Just one more hug, just one more time of telling him how much I love him. That is where I am at right now. I just miss him. I can't do the things we used to do together anymore. It is too painful right now. I get flashbacks all the time of him. They go as quickly as they came in my head. I want to hang on to those flashbacks just for a minute. So I can hold on to something. I even went through all his things at his house hoping I could find something, something to hold....something to fill this emtiness for just a a second. I am so empty now. and nothing I do can fill this hole. My little girl is 2 yrs. old. She was with him the entire time he was sick. She kept him going most days. The morning he died, my husband told me over the phone that our little girl was talking to granpa in her room. She was yelling out "goodbye Grandpa! I love you papa!" She had no idea that he had passed away. I really think he came to say goodbye to her. I now believe that children can see and feel those things easier than adults. I just wish for one second I could see him the way my little girl did. And say goodbye to him. Wow! I am sorry to go off like that. thanks for listening to me.