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Dad is 88, has moderate Alzheimer’s and now a permanent urinary catheter. He lived with me/my family four years. We managed with help of various agencies and volunteers (we live hours way from any family.) Then prostate cancer led to urinary retention and catheter. After 2 wks in hospital and 6 wks in rehab care, Dad’s round-the-clock supervision/care needs were such that I was advised NOT to bring him home. So I found a good memory care AL where he has been for several months. He’s doing well there, though he takes catheter apart almost every night! I adore my dad – it pains me not to have him home – but I need to sleep!


Assisted living is private pay – NO Medicare/Medicaid funding - and funds are quickly running out. I found a state subsidy program that can help to pay for this special needs memory care AL, but he needs to have been in AL care for 12 months before he would be eligible. He has enough funds to get through 8 mos, maybe 10 when Veterans A&A comes through. If I can’t come up with the funds – he’ll have to be moved to a skilled nursing facility that Medicaid will cover. But Dad’s still in overall good health – he’s very mobile, social, likeable, can independently perform most ADLs with prompting – he likely has many more years. It would be a shame to spend those years in a skilled nursing home, when he could do well in AL.


Dad was an intended beneficiary of his mother’s trust (grandma lived to age 96!) A legal squabble between his brother (executor of grandma’s estate) and the executor of their deceased sister’s estate – resulted in almost all the estate assets going to pay legal and accounting fees – leaving Dad with less than five thousand $$ from the trust. Dad’s share of the ‘lost’ funds would have been enough to pay for another six months of care. I am told that legally there is nothing I can do; no sense spending more (of my own) money to go after funds that aren’t there. I am beside myself!!! For want of funds to pay for two months of care (about $20, 000) – dad will spend many years in SNF, instead of a higher quality of life in AL. Thoughts? Suggestions?


PS: Ah, yes, I’ve reached out to family – sharing the dilemma and my dismay over the outcome of the legal proceedings – asking for help/advice. My speaking up has set off a firestorm of bad feelings and accusations! I feel so alone and abandoned - and like this is tearing the entire family part.

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Dianed58, where is this nice place in New York State? My brother lives in Ithaca NY, and we were going to move mom to Brookdale Ithaca, but then mom had a medical issue that needed care twice daily, and Brookdale Ithaca only has visiting nurses 3 times per week, and the entire Tompkins County has only ONE nurse group that is certified to go to facilities, and you can't hire privately for anyone to come to a facility. Sound familiar?
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Dianed58 Nov 20, 2019
Peregrine Sr Living - there are several around the state. One in Syracuse that I know of.
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This price doesn't seem to out of line to me. My mother is in enhanced assisted with memory care in Maryland / DC area for about $9,000 per month. I wasn't looking for luxury, but this place was the one that called back and they had space. They have doctors and nurses on staff 7 days per week, and they have their own large modern rehab center where mom is guaranteed a spot if she needs it. She has a private room the size of motel room, with windows on the garden, and her own toilet + shower. Very well run place, very responsive to family, staff is great. Too bad the clock is ticking on her funds running out.
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Dianed58 Nov 20, 2019
Sounds very familiar - look into whether your state has a Medicaid subsidy program. There is a growing need - states are realizing this saves money. Good Luck
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Im so sorry you are feeling the stress of being a concerned caregiver and feel for you. Possibly the new director will agree to a draft note/promissory note until the VA comes through?
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Diane; I endorse what CM has said; keep at the facility and the program that might offer the subsidy. And don't discount the idea of a Go Fund Me page!
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Dad was living in your home before AL; does this mean he doesn't own a home or is someone else living in his home?
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Dianed58 Nov 19, 2019
No longer owns his own home. The funds he has left are the proceeds of the house he sold four years ago.
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Well. As a minimum, you are expecting to pay this ALF $80,000 over the next few months without argument. Surely that makes your father an attractive prospect for the ALF, a resident they would be keen to retain if possible? And you think you can round that up to $100K, all being well. So you're short of 20/120 = 1/6th of the total.

Might it be worth seeing what you can negotiate with the ALF, whether you can't come to some sort of understanding with them? Your target is in effect a 16.5% discount for your father, so focus on five good reasons why the ALF might want to agree to that.

Such as, um... he is a popular and valued resident. He is a predictable income source, having a good prognosis and certain funding for the time being. He will be eligible for support from reputable sources. In short - he's a good risk!

You say the program he would then be eligible for would "help" to pay for the specialist care: where's the rest going to come from?

I should forget the family for these purposes. None of them has a duty of care to your father, and their track record doesn't suggest they're any great shakes when it comes to practical solutions either (what sort of advice were you hoping for???). Let the dust settle, then go back to social communication only.

Apart from your uncle and your aunt's executor, who else does the family comprise?
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Dianed58 Nov 19, 2019
You nailed it! The cost of care is about $100K for the year, given that it is a special needs AL. Still half the cost of SNF. Somehow these people are paying that rate.

The remainder of the monthly funds would come from his SS and A&A.
And I will probably have to contribute too, depending on how much A&A.

Yes - I plan to appeal to the fact that he is a well-liked resident... and the fact that I'm very involved in supporting the activities department.

THX
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He has to self pay at an AL for 1 year before he can get Medicaid assistance for an AL so I believe that’s why he can’t just stay in a skilled nursing facility temporarily when his money runs out after 10 months in an AL. Once he goes to a nursing home on Medicaid, he won’t ever have the money to self pay for an AL for an entire year. The OP from the sounds of it has no means of getting the money to self pay for the additional 2 months assuming his VA benefits will allow him another 2 months. She says he can afford 8 months, maybe 10 with VA benefits. Once his money runs out he can’t afford an AL without Medicaid so....that is why he can’t go to a SNF temporarily. It’s because of the 1 year self pay requirement.
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Dianed58 Nov 19, 2019
Thank you - you've accurately described the situation.
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Appeal to the Special Needs program; inheritances should NEVER be counted on.

You wouldn't be having this dilemma if dad were destitute and the program must have many folks who are in THAT situation.
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Dianed58 Nov 19, 2019
I have spoken to the facility (and to subsidy program and to Medicaid and....)
Working on it. Right now there is turnover of administration at facility - so waiting on the new director.
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What type of AL is 20 grand for 2 months? That is crazy and I can imagine that family being asked to contribute had a problem.
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worriedinCali Nov 18, 2019
OP is in NY where assisted livings do run as high as $10k! Unbelievable! But not all run that high. He must be in a fancy one!
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Or can you take Dad home just for a short while, maybe? Or what Joy said makes sense, I was thinking that as an option myself.
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Dianed58 Nov 19, 2019
Taking him home temporarily would not help with the 12 month residency requirement.

And taking him home and then back would be confusing for a person with dementia
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This may seem overly simplistic on my part, and I may be missing something, but does Dad’s placement in the SNF have to be permanent, or can he just stay there until things get figured out?
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Dianed58 Nov 19, 2019
Moving him to SNF - even temporarily - would mean having to apply for Medicaid. And it would not contribute to the 12 mo AL residency requirement.

Since the purpose of the subsidy program is to keep people out of SNF and off Medicaid, one of the eligibility criteria is that the applicant NOT be on Medicaid. Since Dad receives all care at VA - he doesn't need Medicaid except for LTC.  So if he were destitute now - and applied for Medicaid - he would not be eligible for the AL subsidy.  And the AL is not approved for Medicai
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