To add - we hired a private duty caregiver for my MIL when she was in home hospice. There is particular criteria that must be met for inpatient hospice (like Casey House).

Medicare only covers inpatient hospice if there are clinical needs that cannot be managed at home, like IV pain meds. Otherwise, hospice care is provided at home and caregiving is not a covered benefit (with the exception of an aide for twice weekly bathing); the family still provides care, or hires a private-duty caregiver.

Anonymous wrote:OP, saying this all sensitively but is there a DNR order? Is your FIL on meds that are extending his life (blood pressure, statins as examples)? Asking because my recently deceased parent took all of these meds literally until death, that ended up being sudden.

No one could find the DNR order and following protocol 911 was called. Terribly upsetting and I was on scene. My parent kept refusing hospice and most especially talking about end of life matters.

Get this conversation going now. Decide on hoodie care and what this will look like. Remember that hospice is a caregiving model and not a place so your FIL can enter hospice where he is. And if there’s a DNR order, post it and make copies.

This is good advice.

Hospice care

OP, saying this all sensitively but is there a DNR order? Is your FIL on meds that are extending his life (blood pressure, statins as examples)? Asking because my recently deceased parent took all of these meds literally until death, that ended up being sudden.

No one could find the DNR order and following protocol 911 was called. Terribly upsetting and I was on scene. My parent kept refusing hospice and most especially talking about end of life matters.

Get this conversation going now. Decide on hoodie care and what this will look like. Remember that hospice is a caregiving model and not a place so your FIL can enter hospice where he is. And if there’s a DNR order, post it and make copies.

My dad stayed at the Casey House which is Montgomery Hospice’s inpatient place for two or three weeks before he passed at no cost to us. His pain couldn’t be managed at home. They were absolutely wonderful. Maybe see if there’s an inpatient hospice place for your FIL?

Anonymous wrote:If FIL has stated he does not want to be put in a nursing home, I would respect his wishes. Would you want to be in a nursing home in the final stages of your life? I would look into govt agencies that may be able to help and leave the final decision to your husband and his siblings.

Then you should show up for OP and her family and provide all the exhausting, demoralizing, often embarrassing and always time consuming help they’re looking for. There are no “government agencies that may be able to help.” That’s Medicare/Medicaid.

All that said, “hospice” is a concept/ethic and a benefit program. It is not necessarily provided in a “nursing home.” Indeed, the most common mode is home hospice with primary care by family members. That’s what OP’s father seems to be getting.

A generic “I don’t want to go to a[n unspecified] nursing home” is not the same as “I’m unwilling to give my family a respite while I get better care under their supervision in a place dedicated to providing exactly such care.” There may be a place where OP’s father would be comfortable in a comparatively non-clinical setting that would meet his needs without exhausting his family or destroying them financially.

I wonder if OP’s father, despite being in some kind of hospice program, simply isn’t ready to let go and thinks of “home” as a safe place despite the realities. I wouldn’t blame him for that, and I certainly don’t think anybody should be hurrying him along. I knew a man whose family took him to an inpatient hospice with the explicit idea that he was going there to die. I don’t know how he felt about it, but it made me feel like the last trip to the vet with a dog, except in this instance the person knew what was coming.

OP’s family seems to have tried the “at home” option and found it inadequate. If they can get more home resources via Medicare/Medicaid that would be great. If not, a dedicated hospice facility might be a better choice.

If FIL has stated he does not want to be put in a nursing home, I would respect his wishes. Would you want to be in a nursing home in the final stages of your life? I would look into govt agencies that may be able to help and leave the final decision to your husband and his siblings.

Anonymous wrote:The Medicare hospice benefit may make the Medicaid process irrelevant.

You can be in a medicaid bed and still get hospice.

Some hospices have their own facilities. Montgomery Hospice does. That could be an option. For Medicaid, you have to find a very hard bed, then apply. Its Medicaid pending so nursing homes don't want to take it as they risk not getting payment if you aren't approved.

The Medicare hospice benefit may make the Medicaid process irrelevant.

You should check out the states Area Agency on Aging to see if there might potentially be other free or low cost services that could help some.

And, start the Medicaid process now, even if you don't end up using it. I would NOT assume that it would be a fast process or that something would be immediately available when/if it is needed.

That sounds like Medicare hospice benefit would cover everything or nearly so.

You need to shop carefully. Some “hospice” programs are a banana peel and downward incline where morphine is the answer to every question. Others are true to the hospice ideals of really living the end of life without denying what it is.

Some hospice facilities have a significantly less clinical feel than repurposed nursing facilities.

OP again- current prognosis is 2-4 months

FIL is on hospice still being cared for at home in a patchwork manner with paid nurses and family members. He is adamant that he doesn’t want to go into a nursing home but the care plan as it exists isn’t enough. We are out of state and paying about $4k/month for the nurse in the afternoons. Two other children are local and trying to manage the care when the nurse isn’t there but it’s too much. As I am the DIL I can’t force the nursing home issue but this all feels unsustainable. FIL doesn’t have assets so it would be a Medicaid bed. We can afford to help for a while but around the clock care at home (17k/month) will wipe us out if it goes more than 2 months.

Suggestions? If it were my parents I would push the nursing home but, to be fair, they have more assets and would get a better place.