The first thing that comes to mind is Medicare’s home health coverages, but I believe the amounts (and coverage) comes down to how their Medicare is set up. Your state’s department of Health and Human Services should also have some resources for navigating the selection of a group to handle the health needs of your relative. While checking your state’s resources, look into whether they have caregiver stipends and what the qualifications for the program are if one exists. If another family member can help to supplement the care needs provided by a visiting professional, there could be financial support for those efforts in addition to reducing the suffering your relative is facing.

Additionally, try calling your senators’ and representative’s office and asking after constituent assistance; many times they have staff assigned to helping constituents with challenges connecting to services in situations like yours (results may vary).

Hospice does not cost anything, and a patient can be evaluated for hospice if a medical doctor determines that they will likely die within the next year. Be very careful what hospice company you go with. They are businesses, and they are selling a service. You’re just not paying for it. Research them well.

A nursing home will be $10K/month, and might be a horrible experience. They are to be avoided at all costs. Medicare will pay for a nursing home IF there is some rehabilitation involved. For instance, the patient is getting physical / occupational / respiratory therapy while there. Medicare will not pay for “comfort care”, which is simply keeping someone comfortable while they’re dying.

I don’t think a primary residence can be taken for medical bills, particularly while a surviving spouse is living there, so their house should not be in danger.

Talk to an estate planner to help with safeguarding assets.

As far as home care, I got my dad a home health attendant, which will cost $25-$60/hour to help him around the house for two days per week. This worked out fine until he couldn’t get in and out of the bathtub anymore. At that point, he went into an assisted living facility ($7K/month, which didn’t even include everything), then got worse and moved up one level of care ($8K/month), then had a series of falls and wound up in a skilled nursing facility getting rehab (paid by Medicare), then began dying and was put on comfort care ($10K/month), and died after about two weeks.

It’s an absolute shitfest. Nursing homes are terrible. They basically tortured my dad so they could make more money before he died. I can still hear him screaming and it fucks me up that I put him in that place to try and save some money. They abused him, and I had to move him, while he was dying, to another facility that allowed hospice to have access to him. Hospice gave him good drugs and he died in peace. I feel responsible that his passing wasn’t easier.

Getting hospice involved earlier is a good move from the standpoint of keeping the patient comfortable, and preparing for the different stages that are coming next. They will know what to look for. You will not, and a lot of nurses won’t recognize the early signs of dying either. Get hospice involved.

pulmonary fibrosis, needs oxygen in bed, and can’t walk around even with oxygen

I don’t want to be the bearer of bad news, but… my mom had a lung cancer, that left her with heavily compromised lung capacity. Around November 2022, she got kicked out of the hospital. Even though she could still walk without oxygen, we asked for oxygen for when she was in bed… which, this being Spain, was free. Still, the doctor signing the order laughed and said “What’s the point, she’s going to die soon anyway” (let’s say that pissed us “a bit” at the time). They gave her an oxygen concentrator, which she’d use in bed, while still being able to walk around a bit… and three months later, one night she passed away with it on.

In your case, I’d say that if all he needs is oxygen, then get an oxygen concentrator, they’re like $1500 a pop. By all means try to rent one, or get one for free… and you might want a home assistant like an hour a day to help with hygiene… but the best you can do, is spend time with him, have him make a testament if he doesn’t have one, and arrange for funeral costs, then spend more time with him; that “year or two”, might as well be a “month or two”.

If your in the US then you might look at the Genworth Cost of Care App. Also if they have long term care insurance, this is what it is for. If they do not have it, then it is probably too late to get it. Often end of life care lasts for a couple of years but it can be much longer. For two years nursing facility this is maybe $300K. Typically if you can get away with less then one shift of professional care a day, staying at home may be cheaper. That is if home care is even available. There is an extreme shortage of care in the US. Getting the correct level of care, not too much and not too little, and in the correct setting can both reduce cost and improve quality too. This is hard as it is a moving target and therefore often waiting lists too.

Talk to an elder law attorney and get legal documents drawn up including will, power if attorney, a health directive, and maybe trust documents. They also can talk about asset preservation.

Hospice, an advantage is that care is focused on quality of life not quantity. This can save money too and prevent needless life extension. Things like do not resuscitate orders may help to. Hospice can help avoiding calling 911 too… The emergency responders from 911 will always try to save life not aide in dying. There are rules and processes that their care givers need to understand. Keep in mind that hospice can be part of home care too.

Rather extreme but also some states in the US allow medically assisted suicide for terminal patients.

Lot of the above requires that the patient and their care givers be open and knowlegable about death and end of life so that time and money is applied in the most meaningful and effective way.