Hi Barbara and others -- similar situation here. Mom, 72, diagnosed in fall 2008. Prior to ALS, she was active, healthy, youthful, a wonderful Mom and Grandmother. Symptoms a year before diagnosis were weakening arms, legs, and twitching. Now, just about 2 years later, she can only barely move her head. She is completely immobile, using a bi-pap for quite some time now, 24/7. Her voice is raspy and weak. She doesn't sleep well, and spends her days resting and watching tv. She needs 24-hour care, which is a combination of paid caregivers, hospice (just recently), and my sisters and I on weekends, which is so difficult because we live far, work full time, have kids, and are not trained home health care aides!. Bathing her and feeding her and addressing her personal hygiene issues is so draining, but we want to be with her and are trying to get quality time with her and surround her with family. Anyway, we had some caregiving before Hospice, 10 hours a week, through the visiting nurse organization, but now Hospice is providing 4 hours a day, 7 days a week. This has been very helpful. I, too, always ask myself "how long will she live?" and despite describing her symptoms and progression, no one seems to be able to give even a ballpark figure. I imagine that many people who have lost someone to ALS might be off this forum by now, so maybe we are missing some input in that regard? Mom can still eat but it's very slow, and her swallowing is getting worse. She refused the feeding tube two years ago, when the people at the ALS clinic said "get it sooner than later". She was afraid. She didn't need it then, and decided to wait until she had to decide. Problem is, i fear that it's too late for the procedure, that she wouldn't withstand it no matter how 'simple' it is supposed to be. AND, if she does opt for the procedure, we are told that she can no longer remain on Hospice as this is considered an artificial means for prolonging life. So, she'd have to go off Hospice, at least for the time being, yet they are so helpful to our family right now, we need them. And it might sound cruel, but I look at her and see the condition she is in, and I think "Is it really the best thing to prolong the inevitable?". She's so stubborn about taking meds, too, if she let Hospice do what they do, she could at least be kept comfortable and relaxed. She is so worried about anything that will compromise her breathing, and yet she remains stressed and anxious and doesn't sleep well, so this cannot be good for her breathing either! I just want her comfortable and not stressed, for whatever time she has left. This disease is evil, it is simply evil. It is draining everything -- finances, for sure, but also mentally and physically it is taking its toll not just on Mom who has the disease, but on the entire family, as you all are well aware. Sometimes, I hate to admit it, I just want her to pass on sooner than later. Am I being selfish? I love my Mother, I hate ALS. Thanks for listening, I haven't posted in awhile, glad to be back. P.S. Mom doesn't say anything about the feeding tube, she never seriously considered it.
