Mom in final stages?

Hi everybody. I have been a lurker on this site for about 10 months, and all your posts have been so very helpful to me. Unfortunately, my mom has reached a place in her ALS progression that has made me wonder and worry if she is close to the final stages, so I thought someone might be able to give me some information. She has bulbar ALS, is 90 years old, and currently on Hospice in a nursing home. She has a peg, but her stomach seems to have seriously slowed down in the processing of food, and she has lost 12 lbs this last month. There is always too much residual in her stomach for her to take in very much every day. She's only able to process about 500-600 calories a day. The hospice nurse was very vague about the prognosis. I know what will happen will happen, but it seems like getting information is the only thing that is keeping me sane right now. I am her primary caregiver, but from the distance of another state, and sisters are also long distance. Since my mom only weighs about 103, how much longer can she survive like this? Does this mean she will pass away from lack of food and fluids, and not the breathing problems of ALS? Thanks for listening!

I am so sorry for your situation, and I understand some of what you're going through--my mother died in late November, not from ALS, but did have hospice in their home. Mom lost all desire to eat, slept more and more, and refused fluids, until she fell asleep for the last time. I don't mean to splice the wording, but your mother, like mine, isn't actually dying from lack of fluid and nutrition, but rather is dying "naturally" which causes the body to shut down systems. She is not feeling hungry. I expect they swab her mouth and lips for comfort. They cannot tell you whether she will rally one more time or two, or if this is the last phase which she's begun. Again, this is a natural dying process. Likely she will change her breathing. When that happens, the nurses usually know that the end is drawing near.

My mother quit eating but was on IV fluids in a hospital, then rallied for nearly a two week period. When they sent her home, hospice was there before she arrived, which told me that they knew she had gone home to die (her choice as well as my father's). She ate little if anything after going home, was well cared for, but it was her time to go. I was unable to be there and fully understand your frustration--at least I believe I do. I will say that hospice is very good about administering morphine and making the ending as comfortable as possible. That was my experience first hand with my Mother-in-law, who died in our house, similarly not wanting drink or food at the end. I hope that you can take comfort in believing that this is not "starvation or going thirsty" but a much more peaceful scenario.

Blessings,
Ann

Very sorry about your mother.

I agree with Ann, as that's how my mom passed also. After being diagnosed with agressive lung cancer (she'd had COPD for years) she chose no treatment, and went home to her assisted living apartment with 24/7 hospice care. We (family) also took turns and made sure there was family there 24/7 and the people in her apartment complex were wonderful. She too stopped taking in food first, then fluids, then gradually just kind of faded away. It really was quite peaceful.

i am sorry for u i know lt wont be longvtill i will b in your shoes try an take care of yourself and dont let yourself think of only this.

Thanks so much, everybody, for the information. You guys are all so supportive. My mom continues to lose weight, not because she's not hungry, but because her stomach isn't processing anything through from the peg feedings. The fluid just sits in her stomach.

There just doesn't seem to be much I can learn about this type of thing. Like many things with ALS, it's just going to take it's own course. I'm grateful for every day that she is still somewhat comfortable, and can still make sounds to me on the phone when I call her.