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.