Before I start answering your questions, since it appears you are in North Carolina, you could try contacting the Joe Martin ALS Foundation in Charlotte. They specialize in providing volunteer home health assistance to PALS. Their phone number is (704) 332-1929. Their "How to Get Help" page is:
https://joemartinalsfoundation.org/how-to-get-help
Now, for your questions:
how others have handled home healthcare in the last stages of ALS.
We scheduled shifts by family, friends, and hired care workers. As my PALS' condition progressed and her needs became more complex, we worked nurses into the rotation. In the last months she had a nurse with her 24/7 (three 8-hour shifts), twice-daily visits by home health aides, as well as scheduled visits by family and friends. I was the only one who knew every aspect of her care, so I trained everyone, worked from home a lot, and was never more than an hour away from home.
Since ALS tends to strike when people still have considerable financial obligations, how do most people handle this sort of situation? Deplete the remaining spouse's retirement funds? Sell your house?
We know some PALS who had life insurance policies, most (if not all) of which policies have provisions allowing benefits to be tapped in the event of a terminal illness.
We know some families who sold their homes in order to move closer to their extended families, making use of both the sales proceeds and the caregiving resources of their extended families.
We know one couple who sold their home and used the money to build a new house and hire care workers in Costa Rica. (Very adventurous!)
Most people have managed to stay in their homes and use their monthly income (every penny of it) to pay for care, which is what we did.
One thing we learned is it is much, much less expensive to find and pay your own care workers (by placing a want-ad on indeed.com) than it is to hire an agency. If you cover 8 hours a day with family and hire three licensed practical nurses (LPNs) to cover the remaining 16 hours, it will cost only a fourth of the $20-25K a month for a nursing home, and your PALS will receive much better care. (accd'g to nursegroups.com, "starting salaries for LPNs in North Carolina vary from $20,000 to $28,000"). For the cost of your nursing home, you could hire 10-12 full-time home nurses--far more than you need.
Depending on the complexity of the care needs, you might be able to find unlicensed care workers who will work for even less money, but you will need to be prepared to work with an unreliable labor pool, as many unlicensed care workers have been known to abandon PALS without notice, especially if the patient's needs are complex. In the final stages, many PALS want to hire nurses, respiratory therapists, or nursing students if they can.
My sister receives Hospice care, but they only come out 3 times a week to bathe her, and her needs continue to increase, so Hospice told my brother-in-law that he must hire home healthcare providers for at least twelve hours a day (11K a month). They would actually prefer that she go to a nursing home for round-the-clock care.
If what you're saying is accurate, it sounds like the hospice is short-changing your PALS. Please see my previous post about the care that a hospice is supposed to be providing:
https://www.alsforums.com/forum/general-discussion-about-als-mnd/37355-myths-about-hospice-care.html
When our hospice tried to short-change my PALS on the care she received, we alerted our state government, which ordered the hospice to provide 16-hours per day of nursing shift care plus twice-daily visits by home health aides. Other PALS have received similar orders. See attached. I do not know what the procedure is in North Carolina to challenge the level of care a hospice is providing a PALS, but you might want to look into it. If the hospice wants your PALS in a nursing home, it sounds like they think she needs nursing shift care, in which case it is their job to provide that care at home. (The federal government’s December 16, 1983 Hospice final rule states that ‘‘hospices are required to provide virtually all the care that is needed by terminally ill patients.’’ (48 FR 56010)) Thus, for severely disabled hospice patients who require continuous in-home nursing care as a medical necessity, providing “virtually all” of that medically necessary care is a federal mandate. If your PALS' hospice doesn't have the resources available to provide all of the required care, they should not have accepted the patient.
Our new non-profit organization, the ALS Action Foundation, is in the process of researching the laws of all 50 states, as well as promoting the development of medical clinical standards for home health care for PALS, to create the resources that will provide a more complete answer to questions like yours. Unfortunately, we are just starting this work, and there are PALS who need the answers now. If you want to send me a private message, I can try to find an attorney in your region who may be willing to volunteer some research time, but finding free legal help isn't easy, so I can't make any promises. You may have to get on the phone with your elected representatives like I did and be prepared to fight for your PALS' rights.