My mom has ALS, she is 60yrs old, has had it for 3 years now. In the beginning, she walked with a kane, then a walker, then wheelchair. When it got to the point she needed a wheelchair and had no movement in her legs, she had in-home care come to her house twice a day to get her meals etc. She lived alone. Someone went and put her to bed at night, and she had a life-line necklace incase something happened since she couldnt move from the waist down. I live an hour away, have 3 kids under 10 and work full time. I do see her once a week. A year ago she got worse, and I decided she shouldnt live alone, so my only choice was to put her in a assisted living home. She has been there a year, and is well adjusted. I hate it though, because she has no quality of life. In the past year she has lost movement in her arms...she can move her head, and left hand. She sits up when they put her in a chair, but that is only once a day. Hospice does come once a day to sponge bath her. The first 2 years, I could do more for her, I brought her to my house to stay for weekends here and there. I have bathed her, and I felt like I was doing something for her. Now, the past year, its like she is alive but not living. Every cent that was in her pension ( which isnt much) is being spent on the nursing home, and I worry what will happen when that money is gone. The decisions are all mine, and I feel like Im not making the right ones for her. She could live with this for years....I know some people still get out, they have wheelchair accessible vehicles, etc, but I dont have the means for that. So, Ive decided to talk to you all, who at least know what I am saying, and feeling. Its a hard thing to live with, for her the disease, for me the sorrow of watching her suffer.