I have been helping my wife provide care for her mother. It has been over three years, but the cost is not what I would call sustainable. Everything I suggestion looking into a Medicaid facility I get told all these horror stories. Understaffed, neglect is rampant, many 'problematic' behaviors are solved via medication first before anything else. You get what you pay for. Beyond all of that we have been told she would not even qualify for placement given her level of need requires a lot of supervision but not much active help.
My MIL doctors have even gone as far to say that placement at this time is not necessary. They praise that she is thriving and has made great strides in such a welcoming and comfortable environment and placing her now would run the risk of throwing all that progress away, and they are strongly against it.
So, what exactly are we to do? We spoke with elder care attorney's that specialize in getting Medicaid and despite many attempts my MIL is still what they consider in the safety and supervision stage, and that is not covered.
How do families cope or navigate this broken system that seems to make it unusually difficult for no reason.
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.
Which makes my position harder cause how exactly do I suggest we go against her mother's doctors advice l, especially when they state all the horrible things that they have experienced.
Her doctors are big on providing all care in the home.
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?
I have spoken with elder care attorney's in attempts to appeal but lost each one. Each time we have been told safety and supervision is not a covered need under medicaid.
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.
A judge has told us something similar. With us in the picture she is doing very well thriving evening based off medical notes. So what exactly is the need for Medicaid care.
To get her the Care paid for by medcaid I have to stop offering support. This largely seems cruel and unusual not only towards my MIL but also my wife.
Is she in her home or yours?
Are there board and care homes in your vicinity?
She appears to be more oriented to person rather then place. For example home is pretty much where ever my wife is. Even with aids if my wife is not around she gets hyper panicking with a desire to find her.
Thankfully she is still able to complete her ADL and IADL's we just found without supervision she it can be risky. Putting plastic on the stove, eating until she gets sick. To name a couple these have not been an issue since about a year after moving her into our house.
Atm in terms of physical limitations none she is able to do any task you give as long as you baby her through it ao to speak.
We have one, but my MIL became visibly frustrated and you can tell her she was already planning her great escape. My wife keeps focusing on the negatives if placement. I do blame her if my doctors told me doing x is nor advised by them I would not do x. Problem is funding x is rough on my income alone.
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?
The social worker has pointer out that waiver and said medicaid does not cover the cost of assisted living memory care only skilled nursing facility memory care which she has claimed to my wife to be vastly different in scale and approach of care.
Her doctors are aiming for something called free standing memory care if placement is needed. They are strongly against SNF memory care which what we have be told is pretty much all medcaid will cover.
They made us aware of places that have a two year spend down and switch to medicaid eligibility. Though not sure if turn the social worker told me it does not automatically switch to Medicaid it is a wait list. So your two years could come and go but no medicaid beds are available and the facility goes down the list.
Once again problem is I have no blood ties so hard for me to do the legwork or get info largely due to privacy polices.
All I can do is wait for them to be ready. Just frustrating cause I have tried to setup tours but as a good friend told me that is a waste cause if they are not ready they will find something wrong even with the best place.
Just annoying all around I wish I could report these doctors and social workers that quote their experience as reasons why places that provide care are horrible and toss around phrases like in our medical advice, or studies show that parents have a sharp decline when placed.
I get that but they have no regard for the caregiver and everything makes me feel like a horrible person cause I do not want to struggle or fund my MIL's care till she dies. This shit is expensive.
I also don't want to ruin / lose my family either. I get I sound like a man child. It was not her fault she got sick, just frustrating. In a perfect world I wish it was as simple person x needs care they get the care no matter the cost. Problem is care is a finite resource and people should plan for their futures better.
I say this but us doing this makes that slightly more stressful to do. I can still max out retirement contributions but the money we are spending on our mother could be used to expand our own wealth.
Just frustrating cause had this happened when we were older this is different, we are nor even 30 yet. This is the time we should be using our youth to bolster ourselves for the future. Sorry for venting.
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.
My MIL would be screwed if I stopped paying for support. Doctors should work with patients to reach realistic goals not idealist ones.
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.
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
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.
Of course the doctor is advocating for their patient. MIL. Neurologist for My DH Aunt told me she would do better at home. She did do well at home for about 13 yrs. well actually about 10, not as well the last few years.
Op has to advocate for his family, marriage and self.
Balance is key for all.
We are well off but yes that is my fear as costs go up when care goes up it will be hard to sustain.
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)
I wish her doctors and people she trusts would be more honest with her when it comes to the reality of costs. That is my concern we can afford to keep doing this now, but once care goes up so does cost. Home health care is not a charity it is a for profit business and offers a service that is in high demand. Sooner or later the out of pocket cost will be too much, and while we were well off we are not paying for private care well off for 10 or maybe 20 years.
This is part of the issue I have long terms, short term is an different issue which why I split the threads. This one is mean mostly complaining while the other one is for looking for real long term solution.
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
Which is why I am trying to get information. I love my MIL I do enjoy the time spent with her but I am also no fool that this cannot be a forever thing.
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.
https://www.agingcare.com/discussions/dh-finally-has-to-step-up-any-advice-480766.htm?orderby=recent
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".
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.
I do understand that I have two threads going and never broke down in detail the cost that is my fault. To my knowledge what I have posted is not against the rules. I am came here seeking informative and viewpoints from those that may gone through the NYC system when it comes to getting care, and I did get some very helpful information.
I also made a post when to vent how I was feeling in a low point. Isn't that generally a use for a support forum? Is my situation not valid because my MIL is not in such a dire position or because we can currently afford to pay for aids and day programs? I am just confused why do you seem to have an issue with me.
I also understand I made a commitment but I also understand this is not going to get cheaper. Which does put me in a weird position I get what I promised and that is why I am conflicted. I know I should not feel the way I do. My wife was honest with me from the start.
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.
To my knowledge she has unspecified dementia without behavioral disturbance. They have tried to do an MRI and PET scan for her but she is unable to stay claim during the process and would require general anesthesia for her to get through the entire sequence. During the MRI they were barely able to get through half of one sequence of the brain w/o contrast.
They said the information they could gather from the MRI and PET scan does not outweigh the risks of putting someone with dementia through general anesthesia. I did ask for a second opinion but was not my call.
The ECA is a close friend of mine, they are not part of the community but they are well aware of my wife's position on the subject. I have been told waiting is not the best thus why I have gone behind her back to seek out information.
Is the waiver program you are talking about the same as the Nursing home transition and diverse program? This was the waiver program I was also told to look into.
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.