Re: Questions about Bulbar onset
I'm in the same boat that you are - my mother was diagnosed with late stage bulbar onset ALS on 3-16-2012. Hospice started on 3-19-12. 24/7 in home care began 1 month ago. My mother does not want any life saving measures taken, hence no feeding tube, oxygen, etc. Her DNR document is on the fridge. Mother works to get down what she is able to "eat" at this point (from a spoon)...about 1/2 cup of mango smoothie & 1/2 cup of strained soup each dayOn mom has dropped from 229 to about 170. Mother is now wheelchair bound with assistance, but will still try to walk with assistance. On March 16, Mother's neurologist said that she'd die within 3 months...we're almost to 5 now. My mother cries for death - she was ready to go after 1 month into this journey. Hw is your mom now? And have you been given an idea as to how much longer she must endure thus agony? My mother fears running out of money - she's paid her bills through Dec. 2012, "just in case." Round the clock care is costing $10,000 a month. What to do?!