My best friend's mother was recently diagnosed with ALS. She is 86 and had been having difficulties with speech and gait for several years before they were finally given a diagnosis. She is wearing herself out working 2 jobs, handling her mother's finances and trying to schedule caregivers around the clock. She gets very little assistance or support from her 3 siblings. She lost her dad 8 months ago.
She has always been very close to her mom, who is a wonderful lady. Her mom worked in nursing homes for about 40 years - another reason my friend hesitates to place her. I have given her as much support and advice as I dare. Most of the time I just listen, hug, and try to distract her with some outside activities. My own mother is in fairly good health except for the dementia/Alzheimer's, although her condition is worsening. We weren't as close as she and her mother are either.
I believe that as her mother's condition deteriorates, it is going to be difficult, if not dangerous, to have people lifting her onto and off a commode and trying to feed her when she is bound to have swallowing/choking issues. From what little I know of ALS (another friend has it), I believe there will eventually be breathing issues as well. This leads me to think she'd be better off in a care facility - maybe hospice - where her needs can be met through the disease's progression.
Yes - I hope there'll be something for her here:
go:http://webuny.alsa.org/site/PageNavigator/UNY_8_SupportGroups.html