My father has advanced Lewy body dementia. He's still lucid enough to know something's wrong, but his memory lapses are severe. He shuffles when he walks and sometimes gets confused about where he is. He's been staying with us for three years. We're moving him into an independent senior community's assisted living wing on August 15th. The facility staff say he can stay there unless his condition deteriorates significantly—they have a skilled nursing unit, but it costs $6,000/month and his pension is only $3,800. I see stories all the time where someone's parent had to go to a nursing home because the facility "couldn't handle" them anymore. I'm worried about what happens if he develops behavioral issues or his mobility gets worse and they decide he's too much.
This is the sad truth of the more aggressive dementias, and eventually all of the dementias.
Your father needs to be placed in a memory care facility that excepts Medicaid, which you'll have to apply for for him.
I know that not all states allow Medicaid to pay for memory care facilities(here in NC they do)so you'll have to look into that, but if your state doesn't, then you'll have to have him placed in a skilled nursing facility as they do take Medicaid.
I wish you well in finding the right facility for your father.
It would be good for you to tour a few in your area, just to check them out before you need one. Schedule a meeting with an admissions director who can answer all your questions and tell you about the care he would receive there.
If his pension doesn't quite cover the expense, he will likely qualify for Medicaid assistance which will cover the extra cost.
I went to Social Services and the Medicaid rep helped me with the application. I had all Moms legal papers in a pouch. We did whst we could on the computer then I was given a list of info still needed. She had 2 months worth of money for private pay that gave me time to complete the application. The 3rd month Medicaid took over.
You can go to her state's Medicaid page and download the application and look at it. It's not complicated. You will have to supply the information to the attorney anyway (like her bank statements, SSN, DOB, 3 months of medical bills due, property addresses, etc). You will be paying a lot of money just to dictate this info to an expensive secretary. I did my MIL's. Once a person has no assets other than a house and car, there's not much to fill out. If you are your Mom's PoA or Representative, the Medicaid follow-up will be going to you anyway and not the attorney.
This is a good reminder to be prepared in the event you (anyone) is diagnosed with dementia of any type.
https://dementia-directive.org/
https://www.hemlocksocietysandiego.org/?s=dementia
https://www.amazon.com/Love-Memoir-Loss/dp/0593243943
Contact your local Veterans Assistance Commission and find out if he qualifies for any help/
Then one day I woke up and had an idea (and I talk about this in my other repost)... I wonder if there is specialized care abroad? I had traveled a lot for my career and I knew the world a bit. I talked to my siblings and they seemed dubious. But I looked... and I was shocked at what I found. We could get 1:1 24/7 luxury care by specially trained carers for less than his monthly pension. I thought, this must be a scam. So I emailed. They replied and they seemed real. I called and they sounded real, and Western. So I planned a visit and was blown away. Was I at a luxury hotel or memory care facility? There were more staff than residents, and the residents were mostly from Europe and Australia. How had I never heard about this, how did no one on reddit know about this? How come funky grandma 59 didn't know about this?
Well it was real, and in 2026 it IS real, and we pay the same amount we did on day one, and as we will pay on his last day, because the prices are locked in. But let's be clear, I didn't do this because of the price, the price just made it POSSIBLE to do. I did it because it IS the BEST care in the world. No one on here, or that I've every talked to, can give me a single example of better care. Not one!
Yes, my father's prognosis is not great. Lewy body can be very aggressive, though in his case it seems to not be progressing very fast at all, which I attribute to the clean diet, constant love being showered on him by his care team and the tropical weather.
But I've buried the lead yet again. The reason no one knows about this is because there is no financial incentive to tell you. The politicians can't say it, because it's admitting the system they are a part of is broken and that don't win votes or kickbacks! Facilities in the US obviously aren't going to tell you. The private equity firms that own 40% of the US market aren't going to tell you. And "a place for mom" isn't going to tell you because they are now owned by private equity.
So who's going to tell you? How will people ever learn about what I discovered by sheer panic and luck?
Now I know that some people aren't going to like my response, but this isn't for them. This post is for the people with the courage and fortitude to do what is best for their loved one-- over their fears, over the naysaying, over the well financed and fully coopted voices of "conventional wisdom".
Nuts to conventional. I want the BEST for my father, and looking aboard made that possible for a fraction of cost.
If his state does, he will need a Qualified Income Trust often referred to as a Miller Trust.
Then there is finding a memory care that accepts a Medicaid waiver. Many states don’t and those that do can have very long wait lists.
Proving his medical and financial impoverishment might be simple. It might not be.
The length of time that his finances can be scrutinized to see if he is truly at need is over the past five years from the time he applies. The last three years that he has been living with you, did he manage his own money? Does he have records? If he made payments to you for his living expenses it could appear as gifting which is against Medicaid rules. Did he co-sign a car for a grandchild or pay their tuition? Did he have a house at one time that he sold and what did he do with the money? Was that within the last five years? Did your mom or his last spouse die or is he legally divorced? Does he have life insurance policies or shared interest in a property? The list is endless of what can be important in any individuals narrative and determination in how acceptable they are to a Medicaid approval in your particular state.
We here on this site aren’t attorneys but we know what it took for our loved ones or what didn’t work for us. Outside of personal health and finances, the biggest difference in outcome is the state you apply in. The equalizer in many cases is a certified elder law attorney. The peace of mind knowing I’d done the best I could for my LOs was gratifying. I only needed LTC for one and that only after advanced age but I was and am very grateful it was available. Again each persons situation is different. Wishing you luck with your dad’s transition.
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