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New member
May 19, 2005
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.
Sorry to hear about your mom. The caregivers are right in that it is difficult to put a time frame on this illness. I would assume she is on a feeding tube. If she is sleeping most of the day is she getting enough nourishment through the tube?
Is she on a Bipap or other type of ventilator? That would influence the outcome as well.
Does she have any other health issues such as heart or diabetes? You don't have to answer these questions but it may give you some idea of why it is si difficult to pin down a time.
We have a few people on this forum that have lost their loved ones and they may be able to add more later. Don't wory about long postings, if you have questions we will try to help. Take care.
Dear ALOB,
I too am very sorry to hear about your mom. As a part time caregiver and freind to my special person the thought of losing him questions my mind and soul quite frequently these days. His Health Care Providers from the beginning have not been very optimistic from the beginning and his Dr told him he was going to leave his office and die. This has been very tough on all the people who love him because we do not know what to expect because we have never experienced anything like this before. If I see him frequently I dont notice that he is failing but when I dont see him it can be very depressing and thats when I begin to question myself is he going to be here next time I come by. In my heart I think he will know when its his time and all I can do then is be there for him and be as comforitng as I will know how at that time. I also know that if he becomes sick ie pneumonia or lung infection it wont be a good sign. I pray a lot because he says he is fine but he is one stubborn guy with a lot of will to live and if I can possess his will as well I think we will have more time together but when he needs to give up I will respect this too. Your mother is an individual who handles things differently but we as caregivers can never give up and just continue to love them until Gods deed is done. My prayers are with you and continue with the forum it will be worth it.
ALS About Loving Someone
Hi all. Thank you for your replies and concern. I am booking my reservation to head out for her funeral, as we just lost her about 90 minutes ago. Again, thank you for your concern and any prayers you may have for us.
I am so sorry for your loss. I lost my Mum a year ago from limb onset ALS. When she died my brother called to tell me she was free again and at last at peace. I miss her terribly but take her with me, in my heart, where ever I go and talk about her frequently with my kids. I was honored to help care for her when she needed me and this disease helped teach me what is important in life. I hope you have a celebration of your Mom's life and know there are many of us keeping you in our prayers.

Jane in Edmonton
I am so sorry to hear about your loss. My prayers are with you and your family. I hope you will continue to look in on the forum for maybe some comfort and peace if thats at all possible in this time of saddness. Her suffering is now over and now your healing must begin.
Sincerely Kim
ALS About Loving Someone
ALOB I am also so sorry for your loss. I lost my mother at a young age and don't think it is any easier when they are older. I was second guessing myself today as to whether I should have told you to go right away. Possibly if I had given you other advice you may have been able to be with her. Once again my deepest sympathy.
Dear ALOB.

So sorry to hear about your mom. She is whole again. I lost my dear Henry 2 months ago, and I know it is not easy. Their struggle is over. Thank God. You will find peace and you will be able to remember the good times. I am still having a really rough time, but, each day does get easier. Henry is with me each and every day looking over me, and your Mom will be too. Again, my deepest sympathy to you and your family.

So sorry to hear of your mother's passing. Know she is at peace now. My thoughts and prayers are with you.
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