Are facilities that accept medicaid as bad as people make them out to be in NY?

Basic, you can't help how you feel.

The thing is, sometimes it really helps to talk to a therapist and sort out the why's and wherefores of one's feelings. And separate the rational from the irrational.

Did your wife go into your marriage with the idea that you'd have children? Did SHE expect that caring for her mom was going to happen this soon?

Have you all discussed other possibilities? Mom living on her own with aides, going to daycare?

It sounds like there is no discussion possible.

Basic, you live in NY, yes?

I take it the aides are private pay for now?

When she needs 24/7 aides, she is going to need to be on a Medicaid waiver program. Depending on your county, that waiting list can be quite lengthy. It behooves you to get the process started now. (Is the ECA also from your wife's community?)

I think you need to speak to the local Area Agency on Aging and get MIL a needs assessment from an independent source and case management to guide you in what the possibilities are.

You are maxing your retirement accounts. Is your wife doing the same?

Do you know what kind of dementia MIL has?

Sometimes knowing the trajectory help with the planning. We knew my mom had vascular dementia and thus chances were good that there was 5 years to "get through" so we were pretty sure she wouldn't run out of money.

If a family knows their l.o. has Lewy Body Dementia, they are aware of some of the behavioral symptoms that accompany that, and placement can be planned.

@basictakes99:
You may be better served in the long run by seeking marriage counselling so you and your wife can reconsile your different viewpoints on this issue.
You are here seeking information to do what, exactly?...to build a case so you can convince your wife of the logic and financial practicality for placing her mother into longterm care somewhere that accepts medicaid. You are using logic, realistic and practical considerations in your approach to something that, I can assure you, is NOT your wife's primary concerns when it comes to her mother's care and well being - especially if mother's care team are reinforcing the status quo.
A marriage counselor could help mediate a negotiation/possible compromise between the two of you...while also honoring your wife's feelings about the issue of changing course in her mother's care.
This is way more complicated for your wife emotionally than it is for you.
I can tell you want to respect that, but I can also tell you want what you want.
Tread carefully.

@basictakes99:
I think it very likely you will do whatever your wife wants for her mother, for as long as she wants, whatever the cost.
That was the bargain you accepted going into this marriage. Best to find a way to accept it, and stop looking for loop holes (and sympathy), working at cross-purposes behind your wife's back.
You knew what the deal was.
Best to "man up".

Folks, you have only to read MidKid's current thread to see that elderly folks with dementia eventually need facility care and what havoc ensues when a misguided adult child refuses the possibility of placement.

https://www.agingcare.com/discussions/dh-finally-has-to-step-up-any-advice-480766.htm?orderby=recent

Your profile says your MIL is only 70 so however care is provided, be prepared to plan for 10-20 years (or more!). With that said, does your MIL have any assets that can be used to help with her care? If not, and she is not eligible for Medicaid, you have few, if any, options.

You need to decide if you are prepared to support your wife and her devotion to caring for her mother for what could be a significant amount of time. I was in a similar situation, although it was my mother, and decided not to provide care in any way. My father was still alive at that point so became care giver, but I had to place her in a nursing home as soon as he died.

In the 23 years (she is now 91) my mother has needed increasing and significant levels of care, I have met my husband, had kids, maintained a career, and enjoyed my life. If I had become a caregiver, I would have none of this. I mention this as it will get harder and harder to provide for her. If you wife isn't prepared to consider placement, understand the impact it will have on both your lives.

My mother is in a Medicaid facility (not NY) and it isn't terrible. There is no way I could provide the level of care she needs so it is also the safest place for her.

I live in NY and cared for both my parents at home - dad died 5 yrs ago and mom died 4 months ago - i loved my parents and knew they wouldnt thrive or be happy in a facility and it was the privelege of my lifetime to care for them - i actually miss them so so much and knew while i was caregiving that although it was really hard it would be harder to lose them - i was right - my grief over my moms recent death at home has shattered me - i would give anything to have them back and care for them - that exhaustion was nothing compared to the exhaustion of grief BUT with that said - everyone has a differant relationship with their parents etc - you can apply for COMMUNITY medicaid(there is currently no lookback period to transfer assets and if income is too high - you can do medicaid spendown thru a pooled income trust) - during moms last 2 months of life i finally hired aides via medicaid - they were mostly ALL AWFUL but i was there and i needed help transporting her to bed/bathroom etc - most medicaid facilities in NY(Institutional medicaid - 5 yr lookback) are nursing homes with exception of a nice assisted living on upper east side called vista - they accept medicaid https://vistaon5th.org/financial-info-faqs/

I am going to be blunt.
This may "piss off" a lot of people but here goes.

You knew in advance what "the deal was"
I can tell you now that you might be able to redirect those "College Fund Investments" into Long Term Care Insurance or a good fund that will fund caregivers for you and your wife later on. The way I see things going you will not have children. I think I saw in a comment you made that MIL is in her 70's if this is accurate your wife could be a caregiver for the next 20 years.
The only way things change is if you make changes. And it does not seem like you really want to make any changes
This seems at a standstill.
Your wife will continue to care for her mom
You will continue to work to support this
If you want "play money" stop the college fund

Have you and more importantly your wife toured any facility that would be appropriate for her mom's care?
The Skilled Nursing facilities and Memory Care facilities are different than they were 10 years ago.
The monetary cost is one thing but the cost to her health, both mentally and emotionally and the cost to your marriage is just as important, if not more so.
Can you and your wife continue to care for her for the next 10 years? And MIL will decline making caring for her more difficult.
There will be a breaking point.
Statistic show that a great number of caregivers dies BEFORE the person they are caring for does.
If your wife becomes ill or is injured caring for her mom who will care for both of them? YOU?
Are there plans in place in case something does happen? Are you or would you be able to make those decisions? (if your wife has siblings or if there are other family members they would make the ultimate decision as to your MIL's care or she would be made a Ward of the State unless you agreed to take over her care or other arrangements were made)

Basic, just read your replies. It’s very interesting that MIL’s doctors are advocating for the most expensive care option and also the least financially kind to her family. It’s fair to say that most doctors have a high income and can well afford expensive care options. Take my mother for example, she became completely physically disabled in a matter of minutes and couldn’t do literally anything. A two person assist for every move, along with tube feeding, rotating in bed every few hours, and all personal care. To accomplish this in a home setting would have been astronomically expensive, I cannot even imagine. But a wealthy person could hire this done at great cost in a home setting. My family, no way. And it’s insensitive and even cruel for anyone to place this kind of guilt on your MIL’s family

I'm curious, have YOU actually heard MIL's doctors saying all of these negative things about placing MIL? Like with your own ears, in person? Or are you just hearing these comments second-hand from your wife?

I ask because of this - it seems somewhat "off" to me that MIL's doctors would get so involved and invested in placement of MIL of their own accord. Bear with me - there is a world of difference between a doctor giving an unsolicited opinion about placement of an elderly patient with dementia and being asked a question in a leading manner - like "so doc, I don't think my mom is needing institutionalized care yet, do you? She can still do (a), (b), (c), etc." To which her doctor says "well, it doesn't seem like she needs care yet". Or "So doc, don't you agree that my mom will get better care if she continues living with me?" to which the doctor replies "well, of course she will". Then wife comes home and says to you "well, the DOCTOR said..." Especially if you have started to be vocal about your reluctance to continue along this course of action. Do you get what I'm trying to say? She's not lying to you, per se, but she is somewhat manipulating the truth to her gameplan.

I might suggest that, if you haven't been accompanying MIL to doctor appointments, you might want to make yourself "available" to go to the next one. If MIL doesn't want to go into a facility - and let's face it, very few do - and your wife doesn't want to PLACE her mom in a facility, MIL's doctor(s) might not be getting the full picture of what's going on. And then wife can come home and tell you what the doctor "said" - or maybe a better way of putting it is what your wife/MIL HEARD the doctor say.

Then along the same lines, you need to do your own research on facilities. I think you are going on faith that your wife and MIL's "team" are being straight with you about everything, but I can see maybe the truth being somewhat skewed towards MIL remaining in your home and your wife's care at your expense. And I can certainly understand your reluctance to put your foot down with your wife; but there is going to come a point where it simply won't be sustainable - be it financially or otherwise - to continue on this course. You might want to have some of your own information, found out by you *yourself*, at hand when that time comes.

Yes, I have heard from good sources that some assisted living places are not places where anyone should be. But it seems to me that the people who are there, and/or their POA's made a bad decision to put them there. In one case I was told the person had no choice; there was only that one facility available. I believe that's nonsense. And now they live in hell everyday. The solution: Do research. Start with the best. Talk with the facilities; tell them your situation. Tell them about the patient. Visit the facility. That I believe will give you the best chance of finding a caring and competent place.

Here is a link to a bit of info regarding “are NH as bad as others say.”


https://www.medicare.gov/care-compare/results?searchType=NursingHome&page=1&city=New%20York&state=NY&zipcode=&radius=25&sort=closest&tealiumEventAction=Result%20Page%20-%20Search&tealiumSearchLocation=search%20bar

Here is another link from the Alz site. (not about NH)

It is a Special Report compiled in 2023 and a report we all should peruse.


https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf

Most facilities that accept Medicaid have limited beds that are for Medicaid. In other words you will not have a facility that is ALL Medicaid.
Generally when searching for a facility you will ask if they accept Medicaid. (some facilities are strictly private pay) If they accept Medicaid they would like it if you are private pay for at least 2 years. In most cases the staff is not aware of who is private pay and who is Medicaid. So the type of care does not change.

At this point ALL facilities are under staffed. The staff that is there is over worked and under paid.
"Neglect" is often a byproduct of the overworked and understaffed and not purposeful neglect.
Don't get me wrong there is abuse that happens but the person that is abusive could be in any facility, employed by any agency or working on their own. Predators happen does not matter if it is physical abuse, verbal abuse or financial abuse it can happen anywhere.

When you place a loved one in a facility you are no longer a "direct caregiver" you become a care manager and an advocate. When you step into that role you have to be just as vigilant as you were as a direct caregiver.

Basic, your venting is absolutely valid, and you have a right to feel the way you do. Most of us here advise strongly against using your own funds to pay for someone else's care unless you have a heck of a lot of money and resources and can comfortably afford to do so.

Absolutely not, Do NOT use your money to pay for her care, no.no and then no again.

Your MIL has smart doctors

I don't think tours are a waste of time...for you.

At some point, your mil WILL require more and different care than can be provided in a private home. (My aunt SWORE) she would never put uncle in "one of those places". Until her kids discovered he was beating her black and blue to get the front door key so he could go out strolling...on the highway.)

She will be hospitalized and you'll need to make a decision quickly. Please, get a sense of what's out there.

Do you know about Bogleheads? Great place for financial advice.

Stop taking the word of others and visit places you’d consider in person. I cannot speak for NY but where I live, my mother entered a “top tier” nursing home as private pay, burned through a long term care policy and transitioned to Medicaid. All this in the same nursing home, in the same room. The staff didn’t know how people paid and didn’t care. Mom was given competent and compassionate care for her time there, but there were kinks, it’s never perfect

Basic, it sounds like what MIL needs is Memory Care and not a Nursing Facility.

See here for Medicaid waiver program for NYS; https://www.health.ny.gov/facilities/adult_care/voucher/

As for her agitation, what meds is she on for that?

I do understand Bt99 your predicament. And if you and your wife are not on the same page it makes it especially tough. It likely would be best for your marriage and maybe your conscience to continue caring for her in your home. and although not all Medicaid nursing homes are as terrible as some make then out to be, your MIL will likely do better where she is now based on your description of her.

Basic, what sort of impairment does MIL have?

Is she in her home or yours?

Are there board and care homes in your vicinity?

You don't have to be "covering the costs" of MIL's care. That is very generous of you to do so, and I hope it doesn't sacrifice your own ability to retire or pay for your own care when you get older. If you weren't there (or your wife), what do you think would happen to MIL? She would be placed in a facility if she were a danger to herself living alone. So, if you look at it that way, you are choosing to pay for her care. As long as you and your wife are willing to provide for her, nothing is going to change.

I can only speak of the Medicaid facility my father was in. I have nothing but positive things to say about that facility. The staff was extremely responsive and informed me regularly and in a timely manner of any updates to his condition. Every time I visited him (usually every other day) he was clean and in good spirits. He was happy to be around other people, and the physical therapists did their best for him.

I was able to get him placed in the facility because the social worker knew I couldn't take care of him alone anymore. I had to work and he was no longer safe to be by himself, and I nor he could afford to pay in home caregivers. LTC Medicaid does cover those who are a danger to themselves or can't function independently any longer, or can't feed, toilet clean or dress themselves. What I'm trying to convey is there is a way to place her in a facility, but it won't happen as long as you are willing and able to take on the responsibility to care for her.

It sounds as though your MIL doesn't meet the Medical criteria for Medicaid funding for NH Care.

My mom was private pay in a NH in Connecticut that accepted Medicaid as payment after 2 years of private pay.

When you say her care is becoming "unsustainable" do you mean it's too costly for mIL to afford for long?

Have you consulted an Elder Law Attorney about her financial eligibility for Medicaid?

Even the most expensive facilities have their issues and one being that since Covid they all are running short handed.
Most facilities have to have so many Medicaid beds in them and only the facility manager would know that your MIL was on Medicaid as otherwise they all get treated the same as no one on the floors knows who is on Medicaid and who is not.
If it makes you feel better, there is no such thing as a perfect facility, even the ones that cost $10,000+ a month. Again they all have their issues.
Your job is to find the one that best fits your MIL's needs and price and then stay on top of things to make sure she's receiving the care she requires.
And just remember, it's not about what the doctors say or don't say, but what is best for ALL parties involved(and yes that includes you and your wife)so if things get to be just too much for you, then it's time to looking into placing her.
I am under the impression that it's always best to place someone before things get too bad, so they can adjust to the other patients, workers, and routines before their brain is too far gone.
You and your wife have to do not only what is best for your MIL but for you both as well, because as you know with dementia things only get worse, never better.
I wish you all well.

If he is terminal, get Hospice involved. See what they offer.

My father is barely above getting state medicaid help and to poor to self pay , my frustration is he is a 31 yr navy vet that had a lifetime of saving stolen by a stepchild do to his vascular dementia and he now has life ending cancer and the v.a. in TN. no longer has inpatient or nursing home as of 10 yrs ago due to miss management of the patients.