Finding Paid Caregivers
Keeping it real, few spouses/partners/friends manage full-time jobs outside the home, even with paid help, if/when the PALS loses meaningful limb movement.
However, even when a CALS isn't working for pay, paid help can be not only an opportunity to get some things done, but meaningful social interaction for the PALS. They can share nature, music, movies, museums, and more. They can debate politics or watch a bird feeder.
Feeding, toileting, hygiene and transfers can take a lot of time, but ongoing efforts to improve procedures and equipment can pay big dividends.
Linguistic note -- everyone talks about "caregivers." Yes, I know the lingo, I work in health care, and it's the heading here for Google's sake.
That said, that's actually not whom you're looking for. You (the CALS) are the caregiver. What you're hiring is an aide, an assistant, a companion, whatever you like to call it. I think of it as unskilled work with paid training. In this context, a CNA or HHA (these are certifications you can get in a trade school) or just aptitude/interest (students, semi-retired) is fine.
If you go the agency or even individual route expecting 8+-hour shifts, that's more difficult to achieve, for several reasons. Of course, I never recommend agencies anyway. For those who need FT help, you can still split shifts. Let the aides do it among themselves, once you get a group together.
After all, family members with no formal training take care of PALS even with tracheostomies. So why artificially limit your options to someone who's a "professional caregiver?"
Taking care of someone with a feeding tube, BiPAP and so on does not require a nursing degree, though agencies will assert otherwise for insurance reasons. However, legalities aside, the interaction between your aide and your PALS is your moral accountability, end of day. Choose wisely.
Post a help wanted listing at local colleges and CNA trade schools. Network live wherever you go. Post on your social. Once you have a good student, ask them for other recommendations. Good students who are good people have friends and friends of friends who are the same.
Vet everyone on line (social nets as well as Google) and check references for diligence, honesty and teachability, even if it's not for clinical experience (which 99% of PALS don't need). You can tell in the interview if they really are interested in the ALS challenge. A CNA or NAC certification is a good start, but not enough.
Most important is the willingness to solve problems and respond to the moment, not living by a checklist. One proved this point a bit too well, though, since my routine check found that she was a serial thief. She was not hired.
None of the >10 pre-nursing students we used over the years had home health experience and only one had ever known anyone with ALS. All are now in nursing or other health care roles (having benefited from my stellar recommendation letters for schools and internships).
As per above, be flexible on part-time hours and let people swap out with each other.
Don't expect organizations or care.com to help you with this need. The professional ALS caregiving ecosystem is often a sad, scary place. The caregiver list from our local ALSA chapter was the worst assortment I've ever seen or spoken with.
We did not typically leave caregivers alone with my husband. If that is a necessity, they do need some basic "what if the PALS is choking" training, including what to do with the BiPAP, if applicable. On the other hand, if the BiPAP is set up appropriately and you're managing secretions proactively, choking shouldn't be common. If it is, that's a cue not to take off anywhere.
Of course, it is wise not to venture too far, especially in the beginning, and everyone should have everyone's numbers pinned in voice and text apps.