A relative has late-ish stage pulmonary fibrosis, needs oxygen in bed, and can’t walk around even with oxygen. He’s getting kicked out of the hospital because they can’t improve him, but he might live another year or two and doesn’t want to pay for hospice. I can’t imagine his wife dealing with all his needs (they’re both in their 70s) but I’ve no idea if there are programs that get him care without leaving his wife destitute. They have a fair nest egg and own their house, but he doesn’t want to ‘waste’ their money on health care. I kinda get it, but also: he needs care.
Anyone know of programs to look at? I’m looking for useful links, but I keep hitting things that either look scammy or like they won’t apply (example: if he is deemed ‘disabled’, doesn’t the govt. basically not care at all until you are broke?)
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.
I’m sorry for your loss. That is quite a cautionary tale.
Please don’t blame yourself for the Nursing home issues. They are supposed to be care givers and they failed both you and your dad. Be angry at them – not at yourself. It sounds like you did the right thing in moving him. You DID look out for him. You DID care care work to make things better.
Thanks. The screaming wasn’t something I was ready for, and it stayed with me. The staff’s indifference to someone screaming is equally shocking. This is why hospice is so important. They know what to look for before things get to that point.