Re: Questions about Bulbar onset
I am so sorry to hear about your mother. If she has decided to not do any life prolonging measures I would suggest finding Hospice care. My mother passed away on May 23rd so she lasted almost 3 months to the day of diagnosis. We could not have done it without the wonderful people from Hospice of Cincinnati. The very first day the came to visit they took a list of things we needed which were delivered within 24 hours. A new walker, wheelchair. recliner and an air mattress. Soon after we got a bedside toilet which was a life saver.
My mother was walking from bed to sofa up until a week before she died but with great difficulty. She weighed about 52 pounds at her death. Hospice provided a nurse once a week to check in and an aide twice a week but they were not there all day. My brother took family leave and I used vacation days toward the end. Call the ALS foundation and ask about volunteers instead of using private duty. Hospice also has a group of volunteers to help. It will be a tremendous weight off your shoulder if you let them help. My mom had very little bills left so I paid them off but we paid nothing for Hospice on her medicare plan.
My mom followed all the signs they told me to look for. She lost interest in food, slept almost all day, seemed confused at times and had very little urine out put of bowel movements. I could tell days before she passed that it was coming. She passed in her own bed surrounded by her four children. It was peaceful, pain free and a blessing. Keep me posted!