My mother-in-law has very advanced dementia (she was diagnosed with Alzheimer's in Venezuela, but based on her symptoms and disease progression, we think it's more likely LBD). My husband, who is a U.S. citizen, brought her from Venezuela to take care of her due to the dire situation in that country in terms of access to medicine, food, etc. He has petitioned for residency for her, but even once that is granted, she will be ineligible for any kind of government benefits for at least 5 years. In the meantime, he and his siblings are footing the bill for in-home care. She is living in our home. First she had a live-in caregiver, but due to a host of problems with that individual, we are now trying to coordinate a couple of caregivers who come for the day, and we take care of her on the weekends ourselves as best we can. Neither of my husband's siblings live in the U.S.; they have been helping a lot financially, thank God, but are not around to help shoulder the day-to-day physical and emotional toll of providing care for someone who does not even know who or where she is anymore, let alone who we are.
She cannot walk, talk, feed herself, use the restroom, anything. Her mind is completely gone; the only thing she can still do is eat. And eat she does. She will keep eating as long as you keep putting it in her mouth. Given this and her lack of any other life-threatening physical health problems, I fear this situation could drag on for years. Meanwhile my husband has had to sacrifice his career to try to care for and coordinate care for her, and the environment the situation has created within our home as well as the constant stress over who is going to take care of her and how it will be paid for is weighing heavily on our household and myself.
Everyone agrees she should be in a nursing home at this point, but at $4,000 a month minimum, it's just not within the realm of possibility. She has some savings but they would run out within a couple of months of nursing home care. Even split among the 3 siblings, trying to afford that level of care for more than a few months would be nearly if not completely impossible. And again, we're talking a minimum 5+ years before she could possibly be eligible for Medicaid, even if her petition were granted tomorrow--which it won't be; the attorneys are saying that these applications are currently taking a year or more to process. The 5 years would start when the petition is granted. So realistically, that means 6+ years. We previously inquired into ALF, but none of them will take her because she can't walk. We almost got financial assistance from Vitas for hospice care, but then they found out about a pension she gets in Venezuela--which would be about $10 a month if you could actually get it out of the country--and we were denied and told it would cost us $5,000 a month for someone to come once a week.
That is my vent and my rant. My question is: Does anyone know of any sources of funding for nursing home care for people who are ineligible for Medicaid but who don't have the means to pay privately? Any kind of charitable funds, foundations, etc.? Every day is filled with anxiety at what will happen if this drags on for years. I know we have to take it one day at a time, but we also have to plan for the future and anticipate that this could go on for years. She's only 76 and again, no serious physical health conditions that we know of besides the severe dementia and Parkinson's, and she is still eating with gusto.
Any advice or suggestions anyone could give would be very well-received. Thanks for reading!