Keeping Comfortable
There are two phases of "keeping comfortable" — the first starting with diagnosis and the second when it all seems to be heading south.
After Diagnosis
Eat well (real food, high-quality protein, good fats) whether by tube or mouth. Blend real food or use a more natural tube formula such as Whole Story. Don't use corn-syrup-based formulas like Jevity and other junk.
Get enough restorative sleep, adjusting your bed setup and breathing support/secretion management if needed to do so.
Stay hydrated but keep electrolytes balanced — in other words, don't keep throwing water down a feeding tube without the nutrients to compensate.
Start thinking of how to adapt/swap out work, hobbies, passions, etc. for reduced motor function before you have to.
Keep going outdoors and doing things, even if you are sensitive about being seen with BiPAP or a feeding tube. You've probably seen others out and about with far worse, if you think about it.
Don't exercise to exhaustion, but enough to keep things limber. Favor smooth stretching and bending over bouncing or power moves. As moving limbs or extremities becomes difficult, get support from your CALS or other caregiver with passive range of motion exercise for that part.
Don't let compromised joints dangle and don't put undue pressure on them. Foam is your friend.
Closer to the End
Your doctor or clinic may bring up hospice, because they're trained to, not because you have to sign on.
One rationale frequently used in signing on for a palliative care program or hospice is that the PALS should be "kept comfortable" as ALS progresses.
If you find an agency you want to work with, great. Be aware that services and overall outlook on life and death vary widely. and that the hospice takes on all ALS-related and most other medical care/expenses, for a fixed low monthly payment. No one has to sign on to either palliative [comfort-focused acute care, a specialty like cardiology or oncology] care.
If If not, or you want to work the problem on your own, the top 3 ways to address overall discomfort, anxiety, and trouble sleeping are:
Positioning and passive range of motion exercises: (cushioning, angle, joint support) in bed, wheelchair, recliner, etc. I see so many PALS not making the most of their hospital bed and/or wheelchair (seat cushion, neck rest, arm supports that work; the right footwear).
For instance, a bare hospital mattress is usually like sleeping on a rock if you don't have an overlay on it.
If you don't have a bed yet and can afford a more pricey one, get one that includes "reverse Trendelenburg" positioning. If you only have the head/foot/bed up type, for most PALS, the most comfortable position will have head/feet both raised, which should also be the case before you transfer the PALS with the Hoyer.
After the transfer, immediately, to avoid slipping down, you increase the angle for sleep because the drop zone should be shallower to hit the right spot. Never transfer into an upright wheelchair (tilt + recline first) or flat bed!
Very gentle therapeutic massage adapted to the PALS (reducing edema is an obvious use case, for example) and a CALS doing passive range of motion exercise while protecting the joints (for example shoulder and elbow support while bending the arm) can greatly reduce pain and stiffness.
These exercises are especially good in the morning/early afternoon. A PT runs through my late husband's wheelchair routine (that we then implemented ourselves) here.
Comfort often relates to incomplete relaxation. For PALS who run stiff/cold, a low voltage heated mattress pad (yes, even in summer) can go under the overlay or mattress. A fan and/or air purifier can reduce stuffiness.
Machine/furnace filters should be replaced every quarter and humidification of room/machine should be adjusted with the seasons and needs.
Falling asleep in comfort to a movie, audiobook, music etc. can make a big difference. And having a workable alarm system, if needed, to wake up the CALS also reduces stress. This may entail high or low tech.
BiPAP settings and secretion management: If you felt like you were running a race or were underwater every second of the day, you'd be anxious, too. That's what overstuffing muscles that can no longer handle the air volume provided by the machine (the #1 settings issue I see) does. And many machines are not synched to the person in terms of when the bulk of air goes in/drops down for exhalation.
Secretion management -- prevention comes first.
If none of this is enough, of course, there are drugs for pain management, but any PCP or prescribing clinician, from a dentist to a psychiatrist can write them and the CALS can administer them.
Whether a good death is the near-term or "when you're ready" plan, the CALS is the person best equipped to follow the PALS' wishes as to the pace, how and when of passing on.
A peaceful death is the last and best gift. In most cases, though, it does not need to be outsourced.