Hi. I am new to this post site. I have been to many over the years (on and off) as my family has struggled with my mom's ALS. She just turned 60 this year and has been diagnosed for 2 1/2 years with bulbar ALS. Looking back we all realize she was having symptoms for over 4 years now. I can keep track of the time easily because it was just after my youngest was born. Ashleigh has never known Nana to talk and has sadly grown up knowing she will lose her. Anyway, I go on.
My question is this... What can we expect the end of her days to look like? I am sorry to ask in this way, but all we here from health care workers is each case is different. She has outlived the doctor's thoughts by a year, and I think this is probably due to the Rilutek she took, but who can really say. Mom's husband is now saying she pretty much sleeps all day and this started several days ago. I am planning a trip to see her in 2 weeks (she is in Utah and I am in Texas), but I don't know if I need to go sooner. Again, the health care workers really won't help me here.
Has anyone had experience that could help me please? I have to admit that I am tired and scared and part of me wants her not to suffer anymore, but the other part of me is not ready to see her gone. I have been losing her bit by bit for years, and I don't know if I can bear the last step.
Thank you for reading such a long post.
My question is this... What can we expect the end of her days to look like? I am sorry to ask in this way, but all we here from health care workers is each case is different. She has outlived the doctor's thoughts by a year, and I think this is probably due to the Rilutek she took, but who can really say. Mom's husband is now saying she pretty much sleeps all day and this started several days ago. I am planning a trip to see her in 2 weeks (she is in Utah and I am in Texas), but I don't know if I need to go sooner. Again, the health care workers really won't help me here.
Has anyone had experience that could help me please? I have to admit that I am tired and scared and part of me wants her not to suffer anymore, but the other part of me is not ready to see her gone. I have been losing her bit by bit for years, and I don't know if I can bear the last step.
Thank you for reading such a long post.