I have been helping my husband provide care for his mother since 2019 after his father passed. My husband works as lawyer and last year he was able to use his connections to get her approval for 84 hours of in home care despite not technically meeting the requirements through the fair hearing process.
This is where the issue lays, the help he has gotten his mother was not done in a legit or proper manner. He had doctor friends submit documentation, and knew the Judge that was overseeing the fair hearing. He tried doing it the proper way but kept hitting road blocks. It is great we have the care, problem is I want her out now, I thought I could get by with the extra help, but I want my space and house back. I want our home to look like a home of 30 something year olds, not a pseudo nursing home.
I know placing his mother would 100% destroy him, but her being her is destroying me. He would not be the same person if he had to place her before he is ready. As my therapist has stated this is a situation where if it no longer works for one it no longer works for anyone. I know my husband is kind, he will go out of his way to help those in need, I am in need now, and the only thing he can do to help me is place his mom.
We spoke about it in the past and he knows his limit. He knows he will not be able to stand seeing his mother placed, he knows hearing the phrase can I go home with you would eat him up. He knows seeing others in that situation will just remind him what is to come. He also knows none of her friends or family will visit her.
She is happy here, she has friends in the neighborhood, she is active part of the church albeit with our assistance. She loves her day program, my husband regularly funds trips through connections he has made for the day program. I am just done, I love my husband, we have been married for 10 years. He has been my rock through everything, and now I feel horrible because in his time of need I am no longer able to be his. In short leaving him lost at sea.
I am not sure what exactly I wish to accomplish with said post, but I need something other than being told I am kind, and such a great wife for doing this. I knew marrying someone on the spectrum would be rough, but I do not think I have it in me to help him through another downward spiral of guilt like he had when his father died. Even to this day he still wonders what more he could have done even though he knows nothing could be done. In this case something could be done I am just not willing to be part of that something so it breaks down.
Do not get me wrong he helps in anyway he can, he just does not leave it up to me or the aids. He does work long hours though so he is not as readily available as he would like. He does make sure to make time if needed, and generally leaves work at work.
Thanks for letting me vent.
https://youtu.be/wKyJQrUdS-I
"shockingly common" "involves a lot of money" "who's committing these frauds?"
Well worth watching if you're thinking about finding "loopholes."
Good luck! & hugs 🤗
Or they could get the MIL her own apartment that she can pay for considering the state is picking up the tab for all of her fraudulent services. This way the OP would not even have to pass her in the hallway because she'd be living somewhere else.
II Corinthians 6:17
Unfollowing this thread before the OP's connected husband decides to sue the posters and aging care.
No one needs a sermon from you or anyone else. Keep the fire and brimstone to yourself.
My favorite thing is putting an irrevocable trust in place so that loved ones can get on Medicaid if it’s in place before the the 5 year look back and protect their assets. This enables their family to inherit.
How is that any different? And this is LEGAL.
There are plenty of ways to game the system.
Maybe the system needs to change.
In short the issue is people broke the first law of cargiving. Don't compare your situation to others.
How is the latter situation more ideal over the former?
The tax payer comments I do not have the numbers but I am sure Congress pet projects make up far more in terms of wasted taxpayer dollars.
Based off the comments especially those that state if they would report us. What does that solve? His mother would still need care. It is not safe to leave someone with mental health issues alone. I am certain any medical professional would agree with that. It is better to have her in a community where she has friends and activities that keep her comfortable and at peace, with the aide provides safety and supervision.
Every adviser echos one statement when it comes to elder care. Never use your own money to provide care. So, would it have been better to leave her alone outside those 28 hours and wait until for the worse to happen?
Some of the moral grandstanding does not match up, you do not care about the person that is sick. All you really care about is the fact that someone is not having to give up everything because the system is broken to the core.
I am going to leave it at that. Thank you for the other suggestions. I will be doing my best to make use of this time I have, I do not have my house back but at least I have some freedom. The shed / tiny home idea is awesome, and will be one of the first things I invest in after I get a job.
And you got something else, right? Some (many?) here don't think you are so great for making excuses for apparent Medicaid fraud.
"You are posed with two options, get the Medicaid in home care hours, or wait until the progress or something catastrophic happens and are forced to drop them off the ER then refuse to take her home leaving it up to the social worker to find placement. Based off this forum alone those options of placement are not great.
How is the latter situation more ideal over the former?"
Well, you came here complaining that your MIL is in your house. Option 2 would seem to meet your apparent great need (despite all the caregiving hours the taxpayers fund) to have your house to yourself again.
The elder care system is designed to maximize suffering for the elerly and family caregivers.
Thats why many caregivers die before the person they are caring for.
Thats why many caregivers are financially ruined. Thats why many caregivers are mentally and physically broken.
We should all work together to find loopholes for ALL caregivers. Loopholes and preserverance to find said loopholes are the path to freedom for all caregivers.🗽😄
And I am going on 14 hours without water right now. I can guarantee you if i could find a loophole to get the water back on i would do it in a heartbeat.
I know for certain I would. Only reason we are upset is because while we are forced to give up our futures, or riddle ourselves with grief by placing our LO before we are ready.
People like the OP get to still have lives. It sucks but that is not the OP's fault. Friends with benefits has been a thing probably since the dawn of humankind.
Fraud is unacceptable.
Don’t water it down .
It is not a technicality . It is not scamming the system. The law applies to everyone needing mental health services. Not everyone is aware of these laws. Becoming aware and obtaining a fair hearing to access these mental health benefits (same benefits provided if you were physically ill) is not fraud.
The system is required to pay for these benefits by law. It does not take fraud, friends, cronies to access these fair hearings on a technicality. You just need to know about it.
It would not be an appropriate placement for your Mil to be in a SNF because they do not provide mental health services there. People needing this kind of care are often placed in a group home or board and care to obtain the supervision required if their family cannot provide it. However, the board and care homes are very limited in the physical care they provide. The law allows for these caregiving hours even if the majority of the Mil needs are supervision and behavioral issues, and not just post stroke physical care.
I feel that the OP has unwittingly misrepresented what she believed to be a "technicality" in accessing services for her Mil. The fair hearing judge did not likely do anything illegal in approving the hours. imo. Maybe in these cases, it just takes a "friend", or a strong advocate to listen. Definition of an advocate
is judge.
So, maybe the OP did not fully understand the law which provided the caregiving hours?
Why are common sense caregivers jumping to conclusions and literally judging this poster and her husband? No one here has ever been in their thirties?
Sure it sucks her husband moving mom in is ruining her life, just like so many others caring for elderly parents but it is what it is.
Its like regular people who think their recycyling is going to save the environment when the biggest environmental destroyers are still destroying said environment daily and regular people who recycle get to pretend their small part is making an impact even though it's not.
Is comparable to willingly committing fraud .
I will tell everyone exactly what my husband’s friends told us. “Everyone in these fields do it, and have been doing it for years.” The standards they apply for mental or behavioral issues is ridiculous when it comes to getting assistances through Medicaid. Doctors and Lawyers are always using their connections to get ahead of the system.
I agree it is unfair, but that unfairness has more to do with the system itself. If the system was not stacked against people then maybe people would not have to do that.
The OP and her husband are committing fraud and swindling the state so the MIL can get free homecare paid for by Medicaid.
You certainly should judge and so should everyone else.
They are not desperate people. The husband is a lawyer. He got his doctor cronie friends to commit fraud by signing off on more homecare than the MIL needs.
The judge who oversaw the fair hearing proceeding is also a friend of his.
When your friends are doctors and judges, you're not hurting for money.
They should both be ashamed of themselves and I truly hope the get caught.
If a patient does not qualify for inpatient SNF services because of a physical illness it does not mean the patient's son committed fraud to get the care and supervision his mother requires with behavioral problems. A hearing may have been required because there is no parity for mental illness, but the law requires it.
There are approximately 730 hours in a month.
Making accusations against this couple is way out of line with the purview of
this forum.
The patient requires supervision, maybe 24/7.
The reality is doctors and nursing homes have been gaming the medicaid and medicare systems for a long time.
Why anyone would begrudge a regular person getting proper help no matter the gray area to do it is beyond me.
Today nursing homes are raking in record money whole warehousing old people. The rates are outrageous for the staff to patient ratio.
Doctors rake it in by having a revolving door if constant office visits, ordering this test or that test or surgery. It's truly disgusting.
Ignore the haters, they still think the universe plays fair. In reality its a dog eat dog world. Be the dog. Don't get eaten.
I usually agree with you , but not this time. Working the system is one thing , what this lawyer did is beyond that .
Furthermore , these are not “ regular” people, who were ignorant or had no other choices and felt compelled to lie because they were in dire circumstances .
OP rationalizes their shady actions on the state requirements being too difficult and unfair . Well it’s unfair to all, but not all are committing fraud . This MIL was not going to end up on the streets without care .
These are privileged people who have the means to pull strings that the regular people don’t have , and their caregiver issue is solved , yet OP complains . Cry me a River , NOT .
She is no longer stuck at home with the MIL . The caregiver issue is solved for her . She can get a job and get out . So many other people are in worse situations , stuck at home caregiving . This isn’t even a caregiver issue any longer , it’s a marital issue .
That being said the healthcare system is a racket like you said , but in my book two wrongs don’t make a right and is even more aggravating when this OP had other choices . She said her husband did it ( fraud ) for her . Why didn’t she go get a job and her husband hire caregivers ?
This is a lawyer and a wife who could be , but is not working . She admits they are not hurting financially . The wife wants her home to , “ not look like a pseudo nursing home” . Boo hoo . None of us wants that. She should get a job and get away from this shady lawyer .
I do sympathize with OP to a degree , she obviously has been taking care of the MIL for quite some time and has every right to stop doing the caregiving . But this couple are not in dire straights financially . I do not applaud this husbands methods. The wife can get a job , and the lawyer not commit fraud. I believe OP is blinded by her commitment to her husband to see this situation for what it really is .
If OP was smart she would leave this situation entirely . This husband just sounds like too much to handle , he will never get unmeshed from this mother . So much so that he commits fraud . Obviously the mother comes first . It’s already been going on since 2019.
The term for not "technically" meeting the requirements and getting the services anyway is FRAUD. You talk about a fair hearing process so I'm assuming you're swindling Medicaid for the free homecare for your MIL.
You get 84 hours a week of free homecare and your MIL is in a day program?
So basically, you don't have to do anything for her. She's happy in your neighborhood, your man is happy, and you don't actually take care of her.
Do her a favor and find her a place of her own in your neighborhood. You're ripping the state off for enough homecare hours that between that and her day program she'll never be alone.
Then count your blessings that the homecare hours you and your husband are fraudulently stealing are not being provided by my homecare agency.
If they were you would be reported to the state for fraud so fast your heads would spin.
7/31, 7:17 am
I posted yesterday but want to add that I think getting yourself a job is the best idea. You will broaden your own horizons and you are taking care of you. You cannot sacrifice your life to taking care of her as a long term arrangement .
Plus being employed it is a good fall back position just in case of the worst scenario your husband chooses his mother over you and you cannot handle it. You will be better able to move on if you do this.
I hope that does not happen but it is a possibility.
Sunday July 30, 2023
Correction on the movie title:
"Mozart and the Whale" (2005)
If she needs too much help to be in AL, then I'm confused as to why she couldn't go into a nursing home? I might have missed a response addressing this, sorry if that is so. Does she have any assets? Or literally just her monthly SS? Could she live independently in subsidized housing where she would pay only what she could afford? My MIL did that for years because all she had was her fairly low SS cuz she had a low paying job.
You can avoid home as much as possible but that isn't a great solution for you. Not long term anyhow. When do you and hubby ever get to spend time together? Dates? You are young and need to have date nights and time with friends, etc. Time to put YOU first.
Good luck.
7/30/2023
Sunday
To: Lostsea90,
The suggestions that I am giving you are meant to help you design a life for yourself within the context of your marriage. But separate from the enmeshment that requires you to be a caregiver for your Mil. With some improvements in your relationship with your husband.
Some things cannot be fixed, but can be improved.
Fully informed, not many women would have taken this on, to live this way.
You don't have to leave your husband to make things more tolerable for you.
Breaking through to you will not be easy, because I think I detect a bit of denial, and a bit of over-protectiveness. You don't have to answer this, but when, if ever, has your husband had a "meltdown"? That does not make him a bad person. What does it mean to you that he had to move a lot when he was younger for behavior reasons? He seems very different now.
Stay with us, keep talking. If you feel judged, ignore that and take what you can use to your benefit. You may just be what your husband needs to get by in life. Do you feel he may require his Mom to get by also?
Have you read books? The Other Half of Asperger's? Or,
The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man's Quest to Be a Better Husband
by David Finch.
Have you watched some movies? Noah and the Whale is one.
Take some time, don't get scared away.
We voluntarily are here to support you.
I cannot see that it is good for you, or your husband to be emptying urine from waste baskets. Is there a work-a-round? What about diapers? It is truly not necessary for you to be living a quiet life of desperation. imo.
I know I probably cannot change my husband but I can alter my situation, going to look to get back to work to give me an escape from house drama. Will spend more time with my own family. We have other support at home now with the 12 hour aides. I need to learn to let go, and use some of that time for myself.
I know based briefly what I have read here, and on other forums our situation could be a 100x worse. My MIL is a peach compared to other situations. I am going to try and find a way for me to cope with the situation instead of push for my husband to find a solution. I trust that when the times comes he will place her. If I want to prevent a downward spiral it has to be on his terms, if I force it he will just be riddled with guilt and what if’s and I will forever lose him.
If I can find a means of coping I can manage cause this will not be forever.
You likely will not be able to get thru to DH if the therapist failed. He'll be unable to care for her long term, as will you, bc you're both out of your realm with what's involved with dementia as it progresses. And it's ugly.
You may have to separate for a month or two to give dh a feel for how it is to live w/o you. But again, if he's hellbent on caring for mother, there's probably nothing that will change his mind. I was married to a man on the spectrum for 22 years and I know how their minds work 😑
Good luck.
Her doctors said it could be attention seeking behavior or something flips when she is alone. As for the dementia, the way her doctors explained it to us. Her baseline has not altered from the moment she had her stroke, and said stroke is the sign of damage that can be seen. She is able to complete tasks and function with a person present. By herself she is all over the place and confession sets in. In short makes it hard to determine what is what. I think what they call it is show timing.
Even with that being said, from what I have gathered dementia in itself is still not enough to get someone in LTC with Medicaid. Based off what all the professionals have told us dementia in itself is not considered a skilled medical need under our state guide lines. Her issues are also not physical in nature, she does not need physical assistance to complete tasks, more so social or emotional support. We are in the wait for it to progress phase. They doctors keep calling it the gray area. Where to be safe they need someone to watch them, but do not need physical assistance. In turn gives insurance companies a way out of providing care.
I agree we are out of our depth, I am not built to be a caregiver. I do not have the patience or mindset to simply blame the disease. I cannot separate the disease from the person. I know they do not understand, but in my head I feel they should understand.
I was present for each nursing assessment each one stated she is functionally extremely capable. The way they explained it to be is confusing, but the nurse stated need is calculated based the task, each task has an amount of time associated with it. My MIL’s issues even with me exaggerating the frequency only got her 28 hours a week.
So yeah I do not know. I know my husband would not lie to me, and going based off what I have personally seen and been told by the nurses, and the social worker that came to the house. You appear to need to be a complete wreck to get any sort of meaningful assistance the legit way. If you personally have no funds.
It’s time your husband takes this off your hands, somehow . I hope a therapist can tell your husband that . Otherwise , if I was you , a divorce lawyer may be your next stop.
If so, no wonder you are not okay with that. The penalties for fraud can be major.
His mother needs the support, she meets all other requirements besides their requirements for “physical assistance” they ignore that safety and support play an important role when caring for someone with cognitive issues.
I do not think he defrauded the government just did what Lawyers do find loop holes around problems. The issue I have noticed is by him doing it this way is any LTC placement will see she does not meet the medical requirement. So she is stuck with us until she gets to that point, and who knows how long that will be. From what I gather vascular cognitive impairment is related to vascular damage that do not meet the criteria for a diagnosis of dementia yet.
Her doctors have told us everyone progresses at different rates, they have seen people progress slowly, or rapidly. Without my husband doing what he did I would have lost my mind.
You are already hard-pressed into service of your husband, supporting him beyond what you expected ("I knew marrying someone on the spectrum would be rough").
The results of forcing him to place his mother may not be the result you get.
Prepare your husband gently by telling him that he is great to offer others the shirt off his back, but not your's. Let him think about it. Just a note here: I may not agree that your husband knows his limitations. He may know to avoid emotional issues that will be a problem for him to confront, but if you look at his real focus, you can find out more. In fact, if you look up one of the characteristics of people on the spectrum, they are egocentric. Look that up.
Then, after you have thought this through, show him what withdrawing your support (of his mother)will look like.
You may decide to stop going on day trips to supervise his Mom.
Have you explored if the aides can go on those trips? Maybe get help reworking the aides schedule to bring about some free-time for you. Make use of the suggestions of a geriatric care manager.
Instruct the aides in some simple changes to the housekeeping which would allow for a less NH appearance to your home. Maybe some areas will be off-limits for an incontinent person? For example, some have a family room and a living room. One is her area, one is yours?
Arrange for Mil to be out for a couple of hours when dH gets home from work, have a nice dinner together, alone. Or, do not neglect the two of you going out at night, leaving an aide to watch Mil.
These are just some suggestions that may help you a bit, until a better solution can be found.
In the meantime, take a lesson from Mil's friends, who said: "They are friends, not caregivers."
Start touring some board and care homes for Mil.
Was not sure how else to label it, not sure if incontinent is the right word. She has this thing if she is left alone and has to go the bathroom for whatever reason she goes in a waste basket. If she is around people this never happens. Though to be on the safe side we do have commodes in her “favorite” bathroom locations. In her head she thinks we have more than two bathrooms.
Thankfully with the additional aid support this has not been an issue, we got the hours in January, and she has not used the commodes once if someone is around her.
I do believe my husband does have a care manger that would sometimes go on appointments with her if he is not able to, I will be sure to ask him if they can do more or provide more insight as to what we can do in the future.
If nothing else, I will start spending more time at my families house, just to get some time away from this. I feel for my husband, not only is his job stressful, but the home life is stressful. I know comparatively his has far more on my plate and a part of me does feel I am being ungrateful. If my family needed this level of support he would do it with a smile and say nothing else.
If he is not receptive and if you value keeping your marriage intact, there might be an option of compromising by moving into a mother-daughter home that would have a separate space for your MIL. That way she won't be living in your space.
Your MIL is very young. You don't write what her health issues are but this could go on for years.
Good luck to you.
You and your husband sound like awesome, caring people.
Placing his mother doesn’t mean abandoning her down a rabbit hole never to be seen again. I don’t know what her issues are - dementia and other stuff will change this answer a bit - but you can visit, take her out, what about arrangements with that day programs she likes? Even when someone is placed it can be a ton of work still, but you see the compromise here…
Your husband may feel destroyed placing her, but he’ll also feel destroyed if you get destroyed. Sometimes out of lousy options only, you have to pick the least lousy one.
As for friends and family who don’t visit after someone is placed…BOOO!!! Yup this happened with my mom. It sucks. Very scant short visits are not too much to ask. They’re not good friends if they only sail in fair weather, huh?
It won’t be easy of course but I really think you guys can work through this. Really wishing you the best!
-Madisoncuckoo
7/30/23
I am so with you. I like my home a certain way. Having strangers coming in an out would drive me crazy. If your husband was home all the time I would bet he would not enjoy this.
When did MIL start showing signs of ALZ? 66 is young for any Dementia. I really don't know what you can do. Maybe a separation to see if he then sees the problem. Autistic people look at the world so much differently than others.