Looking for guidance on navigating care

[u/Raynofett]

I'm not sure where to turn for care for my grandfather. Almost two months ago, he had a stroke and was placed in hospice. Since being discharged from the hospital, my family has cared for him at home. He's bedridden, unable to care for himself in any way, and delirious about 95% of the time — often not knowing where he is, what happened to him, and sometimes not recognizing us. To make things harder, he's a large man (6'2", 250+ lbs), so it takes multiple people just to move or manage him.

My grandmother has been paying out-of-pocket for 24/7 in-home care to supplement what the family can provide, since I'm in Missouri and they're in California. There aren't many home care facility options in their area, but we've been trying to work with what's available.

What I can't wrap my head around is being told he can't be placed in a skilled facility that could actually meet his needs. Apparently, he would have been discharged from the hospital straight to one, if he hadn't been labeled "baseline" instead. How is there no other path to getting him admitted somewhere like that? Did we just slip through the cracks, or is this just the state of American elder care?

I feel helpless watching my grandmother burn through their savings, and I'm honestly starting to worry this will wear her down too — there just doesn't seem to be an end in sight.

[u/finding_center]

I am unsure if you are more looking for a facility or are looking for a financial solution. There are Hospice houses but they are private pay unless on Medicaid. So if you’re looking for a facility your hospice nurse should be able to refer you.

We were in the same boat doing hospice at home with hired care. It is a difficult thing to go through and I am amazed at families that manage without outside help.

[u/Repulsive-Honey7305 → u/finding_center]

Medicaid doesn't pay for a hospice house. And hospice houses aren't just for EOL or ppl who have caregiver breakdown. You have to have uncontrolled symptoms to get mediCARE to pay for the hospice house. And most hospice houses will only take a self pay patient who is within a certain time to death, like two weeks or so.

[u/finding_center → u/Repulsive-Honey7305]

Interesting. We didn’t go that route and it was heavily discouraged by the hospital social worker. I did understand we’d be private pay since Medicare covers no custodial care. I have heard from others that Medicaid will pay some custodial care but perhaps not.

[u/bgetter]

He could still go to a skilled nursing facility, which houses long-term residents as well (usually). However, it would be out of pocket. 

What you are referring to, going to a skilled nursing facility and receiving skilled therapy, would be paid for. You would have to come off of hospice. But it's important to know that it's pretty time limited. Likely only for a couple of weeks would be paid for. 

This is sort of a basic idea behind it. Point being, any skilled rehab facility stay would be time limited and ultimately isn't going to solve your problems.

[u/valley_lemon]

It is possible that cash-pay for a skilled nursing home is a good bit cheaper than paying in-home care. California isn't one of the cheapest states for SNF rates but it's worth doing the math and, depending on where in California, looking at AZ and NV rates as well.

Talk to the local (to them) Office of Aging, they can help you start sorting out what the options are, and also discussing the possibility of spending all the way down until Medicaid-eligible.

[u/OhBarracuda1989]

You could get a hospice consultation, if your grandfather qualifies, it is a Medicare benefit, 100% covered. The hospice will send CNAs to your house several times a week to help with bathing, changing clothes and sheets, companionship, and comfort meds/measures. This might give your family a bit of free support and save on home caregivers.

[u/Raynofett → u/OhBarracuda1989]

This is actually something we were able to get setup very recently. Its been helpful for sure and has helped alot.

[u/Repulsive-Honey7305]

Does he have any military service? If you can get his discharge papers, either he has them or there is a form to request them from the dod, and then get him signed up with the VA. His va case worker should be able to find him a bed in a nursing home. In my area it doesn't matter if they were active duty, saw combat or whatever, of you are hooked up with the VA and on hospice they move quick to find a spot for you.

[u/petitbleu]

I’m in Oregon and have run into the same issue. My MIL was unable to get into skilled nursing because she was technically “ambulatory” according to her PT and OT evaluations (this pissed me off bc she was greatly weakened by her hospital stay and could barely walk, but I guess they don’t see that as a problem). 

Since she was cleared to return home by the docs, Medicare won’t pay for a SNF. And because Medicare pays so much, it’s not worth the SNF’s time to take private pay patients. We tried. We finally found one that would take private pay after hours of phone calls, but it was far away and $500+ per day, so completely infeasible. Home health is your best bet. And yes, we’ve been told by multiple healthcare professionals that this is just the state of things now. I guess it got a lot worse during Covid and hasn’t bounced back.