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I am about to lose my mind dealing with all the impossible bureaucratic demands. I am wondering what the downside is to just walking away from MIL’s finances and letting the state deal with it. We could still visit and phone her, right?


FIL lived in another state, died suddenly three months ago. Kept no records, refused to discuss finances. Never saved any money, never had a plan for the future. MIL was totally dependent on him. He kept her at home but neglected her.


MIL has dementia, is continent and mobile, but needs 24-hour care and assistance with most ADLs. Thankfully, after moving her here and going nuts trying to care for her at home, we were able to get her on Medicaid and into a nursing home. So grateful!! She is getting good care. But the bureaucracy is driving me insane. I worked in business for many years, thought I knew how to get things done — but nothing about this situation is simple or easy.


One example: right after she was approved for Medicaid, we got a request from DSHS asking for proof of her pension. They gave us 10 days to respond, and it took 6 days just to get the letter. The pension administrators took three weeks to respond to our request, and then they wanted us to fill out another form (after we sent them FIL’s death certificate and MIL’s POA). We were forced to set up an Internet pension signon in MIL’s name. It was the wrong way to do things, but it was the only way to satisfy DSHS in time to keep her Medicaid.


Another example: DSHS suddenly decided that her Social Security had doubled and she should pay more towards her nursing home. I called them and asked how that was possible, and they said they didn’t know but needed a letter from SS to fix it. Luckily, SS had just sent us a benefits letter showing that her SS stayed the same, but I am worried that this will happen again, and I can’t hack SS like I did the pension admin.


Because of DSHS’s errors, the nursing home keeps sending erroneous bills. I have to call them twice a month to get things straightened out. I have to call repeatedly until I get a person because the business office person doesn’t respond to messages or emails.


Those are just a few examples. Don’t even get me started on trying to figure out her tax status, etc. She signed a POA when she was still competent, but it’s a huge struggle to get anyone to accept it. Just getting access to her $500 checking account took three two-hour visits to her bank.


I know we are very lucky that she is being cared for. But how do you cope with the constant benefit crises? Does it get easier? Would she be better served if we just bowed out and let the state deal with the finances? I would love to hear if anyone has gone this route and if it worked; or if you didn’t, why not.

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When it comes to Social Security and any other government related organization, be prepared to wait, and wait and wait and then to get a non-answer. My sister is in a nursing home and when I took over her her finances, I found that she was in a horrible financial mess. IRS was sending her threatening letters, with thousands in late fees and interest. Any time I called IRS I got a different answer. I finally contacted my local state congressman to help with getting my sister's IRS issues. They were VERY helpful. They have connections you and I don't have. I also needed a W2 from her former employer, a state related job. A state senator in her state gone it done for me in less than a week. Any government related issue, go to these folks. They want your vote in the next election so they will work for you. Think of it, you pay their salary every time you pay a tax.
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The bureaucratic sh*t will get less. If State takes over, it will be much more of a headache. & they will put her anywhere. Her care will be terrible. You’ll regret it. An elder law attorney can help you so you don’t have to do all the paperwork. MIL’s $$$ used for this purpose. If they want to get SS & /or pension directly to facility…it might make it less stressful for you. Are there any adult children to help? Hugs 🤗
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First of all, do not let your MIL become a ward of the state because this will also mean that family will not be making her healthcare decisions or that they can move her to another facility anywhere they want and anytime without even telling your family.
Second, you do not owe the nursing home any access to her bank accounts or assets. Insist that they send you a bill every month. A written and detailed bill. Many nursing homes have dedicated staff who take good care of the residents because some actually care.
The business and 'administration' of all nursing homes operate in underhanded and often illegal ways. Families with a loved one in a facility don't know this so they just hand everything over all at once. Even money they are not entitled to.
Insist on a written detailed bill every month from the nursing home. Totally itemized for everything they're billing for. You will find that they are probably demanding cash payment for things that are paid for by Medicare and Medicaid.
Make sure you communicate with Medicare and Medicaid regularly to know what they're paying for and what they aren't.
If Medicaid is already paying then your MIL's money would be owed to them not the nursing home.
Proof of your MIL's pension and Social Security is called a bank statement. This money is directly deposited into her account and that is proof of how much it is.
When my father was in the nursing home after his stroke I was bombarded with sometimes up to 15 and 20 calls or voicemails a day from the nursing home's business department. This harassment was because I wasn't making their life easier by allowing them to just take what they wanted. I insisted on every bill and went over it with a fine-toothed comb. They were billing every months for drugs and medical therapies that his insurance was paying for. They were trying to bill us separately for services that were included as part of his room and board in the facility. Ignore some of the calls. Screen them. Examine and question every bill too.
My father's nursing home had to refund us almost $8,000 that they illegally stole because Medicare and his secondary insurance were paying 100% at the time. This only happened because I requested proofs from Medicare. A packet about 500 pages front and back that I had to sift through to find the proof that they paid.
It was a very hard time for some time with these people. It is the same for you right now and will be for the next several months.
When the business end of your MIL's nursing home realizes that you will not back down, they will begin to.
Also, make a call to the probate court once a week in the town your MIL is in to make sure the nursing home isn't petitioning for conservatorship behind your back. They do this too and tried with me.
If you stay a thorn in their side they will walk the straight and narrow and your MIL will be well cared for. Also, Medicaid will allow you to make pre-paid funeral arrangements for your MIL paid for out of her funds. It's a good idea to do that. No one is owed any insurance policies that are over five years old either.
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bundleofjoy Mar 2022
amazing and great answer.
:) :)
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The initial process to sign my Mom up for Medicaid was an exhausting process, but I had a great contact at the County DSS office who took the time to answer all my questions, and continued to do so over the years. As I noted on another post, I was not only Mom's son, but her full-time caregiver. This contact guided me on how to set up a pooled trust account for her spenddown, which meant the trust would pay certain bills each month from the amount automatically deposited in her account. Later, she assisted me as I signed Mom up for our state's Medicaid Managed Long Term Care Program, which paid for items like Mom's pull-ups, the pads I used on her bed and chairs, and her medical alert pendent. Living on a very tight monthly budget, it was a great help. I always kept good records, so providing requested information was no big deal. When Mom died in January, I called the contact to thank her for guiding me through the Medicaid maze.
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It's been three months, and you're already ready to hand her over to the state??

Yes, it's a PITA to deal with this stuff, but once it gets rolling and the kinks straightened out, it'll be fine. I would never relinquish control to the state. That's a one-way trip, and you probably won't like how they handle things.
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Sainne Mar 2022
How many months must this go on before I’m allowed to feel overwhelmed and terrified?
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THANK YOU to Tidalblue for the clarification about the status of a ward of the state in NJ. Either my brother was given incorrect information from some poorly informed person OR he misunderstood the part about visitation rights.

In the end, as I wrote, our family was able to get Mom settled in a decent NH not far from where my brother lives, we are pleased with her care, and (best of all) she has a nice roommate and seems to like most of the aides who care for her.
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tidalblue Mar 2022
You're very welcome. This stuff isn't easy, and easy to get confused by. Very glad you were able to get your mom situated well.
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Sainne: Perhaps you need to retain an elder law attorney.
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CaregiverL Mar 2022
I agree she needs an attorney
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Would it be better for your sanity, if not your pocket book, to turn this over to an eldercare lawyer. Legal mumbo jumbo is what they do. Or at least to get advice on how to respond to the bureaucrats. I have found if you can get through to a human being and plead your incompetence (and I would certainly throw myself on their mercy) they can be helpful. Sometimes the state senior agency, county, city, can also be helpful. They jump through these hoops continually. Good luck.
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NO! Do you realize that they could take away for visiting rights and refuse to give her the care she needs!!! Absolutely do NOT give her over to the state!

She needs family in charge who care about her. The state does NOT!

If you feel you are unable then ask someone in the family to take your place.
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JanaLouise Mar 2022
I totally agree with you!!!!!
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My best answer refers to your sanity, since each state seems to have a different set of rules, and Medicaid/Medicare is a system I still don't understand after 5 years of assisting 2 of my parents.

I sent my somewhat estranged biological father and his sweet wife to Assisted Living after about 14 months of daily care for their administrative needs. That was in Nov. 2021. They still call me quite often and ask me to do things. The partially state funded AL does very little to help them, although they're big talkers. They have massive turnover, and I suspect the boss is a tyrant on the side. But the deal is this: that I recognize in myself the distinct signs of PTSD.

When they moved into AL, I finally moved home to my own state. I had spent nearly 5 years living in a state I hate, taking care of my mom who raised me, my step dad, and my mentally handicapped auntie. And then I moved my father and his wife nearby, and their needs mushroomed until they took up +20 hours every week - and I work full time for myself. My mom's dementia worsened, and both my dads have a lot of physical issues. As I reply, it's now early March and I can still feel it in my body, although it's calming down. Still, when I call any one of them, although it's been nearly 5 months now, I feel a physical response in my body that isn't good. Worse still when they call me.

So all I can say is this: some people can handle this journey. I could not. And that's OK. I'm not saying this to whitewash your decision, only you will know, but I started this healthy, 30 lbs lighter than I am now, and with a glorious life, thinking I'd help out for just one year. I may never recover from the strain.

Please, put the oxygen mask on yourself first. You're all you've got. xoxo
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tidalblue Mar 2022
First, *hugs*, SeniorStruggles.

Not the OP, but if you don't mind my asking, and if -- and only if -- you've got the strength and capacity to answer: If you knew then what you know now, how do you think you'd have handled things differently? What would you have done instead?
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My sympathies! My brother has managed all Mom's bureaucratic/tax/financial affairs, but just barely. If matters had been any more complicated than they were, he says he would have needed the help of some professionals.

Regarding SS and pension, my brother had them assigned to the NH/Medicaid. Let them figure things out! It hasn't been a year yet, so I don't know if he still has to file a tax return for Mom every year. I'll probably hear about it if he does....

One thing I still wonder about, after reading all the responses: if you engage professionals to manage the financial matters, wouldn't payment to them come from your mother's assets, rather than yours? And wouldn't that payment have priority over Medicaid? In other words, a tax preparer or CPA, etc., would get paid first, as an acceptable expenditure by your MIL of her money, and then Medicaid would get what is left. I'm certainly not sure about this, and I hope someone else can clarify this point.
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Maryjann Mar 2022
That's what I was wondering. The suggestions to get an elder care attorney or to let an attorney handle it assumes money to pay the attorney.
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If the NH is the payee, then if the IRS comes after her bank account, she would be protected, yes? That’s a great idea. I’m not 100% sure she will be staying at the same place, but presumably the payee can be changed.

She doesn’t have any money to pay lawyers or accountants, but DH & I are able to pay some reasonable fees just to protect ourselves.
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Angst74 Mar 2022
Oops, I see that I missed the fact that your MiL doesn't have any money to pay lawyers, etc. Hmmmm, there is SS, but likely it's not enough to cover any fees a professional would charge, which means they probably wouldn't be very eager to take her case.

As for changing the payee if you move your MiL, I'm pretty sure that can be changed.....BUT it'd probably be yet another bureaucratic hassle, requiring umpteen documents, in triplicate, signed in blood, etc......sigh....
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I want to say again, that if you are paying Moms SS and pension from her account every month you may want to consider allowing the NH to become her payee. The main reason I did it was when Mom passed I would not have to deal with SS and her pension. SS tends to claw back too soon. Then you have to fight to get it back. I figured the home could do the fighting. It was nice not having to worry about sending the money every month.
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JanaLouise Mar 2022
I don't understand why you are paying mom's SS and pension. Is SS to be paying her every month?
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Thank you for all the helpful responses, and most of all for making me feel less overwhelmed! It was helpful to hear that things settle down somewhat. Also helpful to hear the process for giving up POA. In my fantasy, I would just hand a stack of paper to her caseworker and change my phone number. It was a useful dose of reality to hear the actual process.

In answer to some of the questions, in our state, DSHS handles Medicaid acceptance. I will say that they were good about approving her — it only took three weeks! We did have to submit proof when we first applied, but they learned that her pension can get a cost of living raise twice a year, so that’s why they wanted another pension letter almost immediately. (Her pension actually did go up by about $1, ha ha.)

The tax preparer suggestion is a good one. We did send in the IRS POA paperwork and ask for a transcript, but that was 7 weeks ago and we’ve heard nothing. We suspect that FIL may have unpaid taxes (and MIL’s name would be on the returns too). If I can just dump this problem on a professional to handle, it would be worth whatever they charge. We were trying to do the right thing, but now I wish we hadn’t told the IRS we were involved! Hopefully they will continue to ignore our letter.

The phone company comment made me laugh. Of all FIL’s creditors, the only one that has been impossible to work with was the cable company. They are worse than all the others put together!

Thanks so much to all who replied. I do feel better just having vented and hearing some other experiences and reality checks.
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AlvaDeer Mar 2022
I found the IRS impossible. Just getting an EIN from online process a nightmare with them asking questions with a simple answer, then telling me 9 months in a row, every three months on the dot, that they would get back to me with the eventual answer to a question I never asked. Calling them resulted in two hours online and a woman working from home who was hopeless and helpless. I finally got EIN through my lawyer. Remember, the MIL estate pays for all you need to handle it including attorney and including accountant. Make use of them.
Yep, after hours and hours of getting a phone in for my bro Spectrum magically just shut it off. To get it back on took me an entire day talking to people all over the USA and in a couple of countries as well. It can make you laugh when it is over, but at the time I thought I would go mad.
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Yes, you can resign you POA and were I you I would do so. You are not legally liable to care for your Mom nor handle her finances. To be honest, if she is on medicaid there is no way for anyone to pay those bills out of what is left to her, so the bills coming to the house are kind of irrelevant, if annoying.
I was POA and Trustee of Trust for my bro who was in my state but on the other end of it. I have dealt with banks, with IRS, with SS, and with SPECTUM phone which was amazingly the worst of all. I know what it is to be anxious to the point of unable to hear, to wait hours and hours on the phone.
So yes, you can resign. Do it legally with an attorney and that means sending your letter of resignation to every entity you gave your POA papers to, whether that is bank or credit company or facility your Mom is in.
This means they must get a Social worker to get a judge to appoint a fiduciary to manage your Mom's care. As she has nothing, the state will pay for this. BUT know that at that point you will have nothing to say about where your Mom is placed or in what condition. You will have given up rights to act for her.
Consult an elder law attorney in your Mom's state; this can be done by phone or zoom almost certain. Have the basic facts at hand. As Mom is already on medicaid likely that will be easily done, and she has nothing, so there is nothing really to declare.
Tax status is easy. You get her taxes done with a CPA; she has no income. He will help you decide how to file, likely with her making a mark and you signing POA, but do know that POA isn't recognized by IRS and they want a whole OTHER set of filings. If you haven't done that yet you will be, yes, more frustrated than you are right now. EVERYONE want something different and different papers, SS, IRS and banks. It can be a nightmare. I have been there. I have been there with my little bottle of 5mg valium, 10 pills for one year, cluthing it in my hand and thinking "OK, can you do this without 1/2 valium or must you take it now". Hee hee. It's a trip. I could write a book. And that was with an organized, with it, financially comfortable, agreeable brother with a diagnosis of probably early Lewy's Dementia. Am I glad I did it? Yes. Would I do it again? Not on your life.
Do talk to an attorney. Get all the pros and cons lined up.
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Angst74 Mar 2022
I agree with AlvaDeer about the consequences of becoming a ward of the state. My brother (state of NJ) looked into it and learned that the state could place her anywhere AND that he would have no say in her care NOR would any of us (including him) be allowed to visit her. Whether the rules are different in other states, I can't say, but it certainly ended that option for our family! Right now Mom's in a decent NH not far from where my brother lives, and he visits her at least twice a week.
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Why does DSHS get involved? When my Mom applied for Medicaid she had 20k in assets and was bringing in $1700 a month in SS and a small pension. Since I had worked with Medicaid for my nephew and SS I took what documents I was sure they would ask for. This included 5 yrs of bank statements that Mom had kept. On those bankstatements it showed her SS coming in every month. Its been 5 yrs but I am sure they got proof of SS benefits and her pension. Mom spent down her assets by paying privately for 2 months in the NH May and June. I confirmed in June that she had spent down and the caseworker received everything needed and her Medicaid started in July. In the 5 months she was in the NH, I never had anyone ekse ask for proof of SS or pension. All that info was given at time I applied for Medicaid. Mom would not have been excepted without that information. I also allowed the NH to become Moms payee. They then directly received her SS and pension. Maybe thats why I wasn't harassed. I was no longer in charge of her money. You will yearly need to fill out a renewal form. You will be asked to supply copies a statements so keep good records.

Does ur POA stipulate its only in effect if a Doctor or Doctors declare Mom incompetent. If so, you may want to get a letter from the Dr/s stating this and keep with your POA. I live in a small town so I had no problem with my POAs being excepted. I had the 8 x 14 in document shrunk down to 8x11. Easier to copy on my home printer. Mom and I banked at the same bank so they knew us. The bank had a copy on file. All Moms doctors had a copy. Government entities like SS do not honor POAs. I am also immediate POA for my nephew and have never had a problem there either. But I know members on the site have had problems. Thats why I always suggest using a lawyer to write up POAs.

Now her taxes. Because most of Moms money was SS she did not need to pay taxes to IRS or the State. Moms pension was only 2400 a year, just her pocket money. There is a cap of what you can earn a year over and above SS. If you don't go over that cap, then there is no need to pay taxes on SS and anything under that cap after ur a certain age. My Mom and MIL both got letters from IRS telling them they no longer needed to file taxes. Both also Widows. Check with a good tax preparer about this.
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Our situation hasn’t gotten “better” so much as getting “different”.

The only helpful (for me as POA) thing I’ve learned to do is to deal with PEOPLE as often as possible.

This is of course a HARD THING TO DO since the pandemic, but even just talking to a HUMAN on the phone rather than recorded voice on the phone, is worth being on hold as long as it takes.

I just went through a situation like this because I had no 1099 from SS. I know that it would have been easier on me and SS if I’d gone online, but by sitting “on hold” for 15 minutes or so I had the assurance of having a NAME and a commitment of 7- 10 days, and the needed for came in 5.

Good luck with this.
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Yes, it does get better. Giving Medicaid the "proofs" drove us nuts too, dealing with snail mail and then having 1 week to respond back or we'd have to reapply for her. The first year is challenging with the paperwork and bureaucracy, then once all the main answers are satisfied, less is required of you since your MIL has less to report or verify. That's how it's been in MN with my MIL in LTC on Medicaid since 2016. Hang in there!
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I think the situation is worst when the person is first signed up for Medicaid, same for other accounts the POA has to access. Going forward, hopefully it will get easier. I'm kind of surprised you weren't asked for proof of income and assets when you applied for Medicaid for her. When we applied for Medicaid for my husband's brother for whom he has POA we had to supply proof of pension and social security; for the pension, they were willing to accept his monthly statements, and for social security we had the annual statement. The initial Medicaid application was the worst when it came to the amount of documentation we had to provide, but for the annual recertification it was very simple. For filing taxes, assuming you have all the documents, you could use one of the home tax prep programs such as Turbotax or H&R Block, and the IRS also has a free tax filing option which works fine for most simple returns.

I agree that the bureaucracy can be maddening. We sent back some paperwork to DHHS in December indicating that some of my brother in law's information had changed -- social security went up, health insurance went down, less money left in his IRA -- and we never received acknowledgement and the amount he has to pay toward his care hasn't changed even though his monthly income is now slightly different. His annual renewal is in April, so presumably they will catch the changes then.

Best of luck!
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