I'm going to dispute that the biggest expense in ALS is "medical care." For most, it's more custodial care that is not covered by medical insurance, which includes lost income if/as caregivers leave paid work and/or cash out investments to care for their PALS. There is a widespread myth that most PALS need skilled nursing for a long period of time, which is not true.
I bring this up not for semantics but to point out that considering future options is something to do early and often, particularly if there is no one around who is willing or able to deliver care 24/7. It can be done with family alone but it is much harder if there are not other family/friends/part-time hands in the mix, at least to show up and hang out from time to time.