Medicaid question. Will I have to pay back every cent I have received from her?

Your profile says you live in IL and the Medicaid "look-back" timeframe is 60 months (5 years). How long has your mom been living with you and sharing expenses? Have you been keeping records? Since Medicaid rules vary by state I strongly suggest you invest in a consult with an estate planner and a Medicaid planner (yes there is such a thing).

Since you mentioned your health is deteriorating you should know that a study showed that 20% of caregivers die before their LO because of the stress of caregiving on their health. What would be your back-up plan if this happened to you? Also, my perfectly healthy and very fit cousin of 62 just died in his sleep (no foul play, autopsy results still pending). So, if it can happen to him it can happen to anyone. What if it happened to you and there was no care plan for your mom?

You wrote: " If I put Mom into a home (which I never planned to do, but my health is going downhill)..." Dementia and health don't care about your plans. You need to operate in reality and probability, logic and reason. You clearly see that there may be a problem in the future so please don't reinforce the romanticized idea that you'll "never" need to transition her into a nice facility. Many on this forum have had that same bubble burst for them during a crisis that they didn't plan for. Why not plan for the worst and hope for the best? This is good for both of you.

You also wrote: "Her dementia isn't real bad ..." until it is. Or, she could fall and have a profound injury. My 92-yr old mom fell and broke the wrist on her dominant hand. She has arthritis in the other hand. Had a cast from elbow to above her knuckles for 6 weeks. Even now with cast off she can hardly use her hand and needs PT every day and an appointment every week. She's still very lucid and able but it was still taxing to care for her (because I still work full time). So, imagine something like this in your situation, or a worse injury.

Also, I'm hoping your mom has made you her DPoA and has a Living Will (Advance Health Care Directive) that has been submitted to her doctors. Bless you for providing hands-on, loving care of your mom. Please go into the future with your eyes wide open.

Just my opinion. What Mom has paid you will be regularly taken out of her bank statement. Medicaid doesn't worry about consistency. Its logical that you would be sharing expenses. So if asked, what is this money being withdrawn regularly, you answer Moms half of the expenses. You may get a caseworker that excepts that or not.

Medicaid looks for large amounts coming out of a persons account. Like gifting 3k to help a grandson out. So start from here. Have you and Mom do a contract and get it at least notarized. Keep good records. Keep those bills. $10 a day for care is not all that much. Put it down as misc. If asked, then tell them what it means.

Does your mother have assets? What has become of them and how long has it been since she has disposed of them?

The grocery money and the gas money and the utility bills are of no real consequence to Medicaid, but these larger assets are.

I would encourage you to see a Medicaid attorney (not an elder law attorney or an estate planning attorney) to sort out the what ifs. That way you are not in the dark and you can make plans comfortably without wondering about the what ifs.

How long has your mom been living with you? Elderly people do not live for free while their adult children support them financially simply because they become elderly and cannot live alone anymore. Medicaid understands this.
You will not be legally obligated to refund to your mother's bank account what she paid you for room and board and for her own living expenses and personal needs. Ten dollars a day for caregiving and personal expenses will not be scrutinized by Medicaid.

No. I was in the same situation as you and had the same worries when I started to learn about Medicaid rules, but the Medicaid caseworker told me not to worry as we were basically sharing household expenses. My father did have to go to a NH, and with that his SS check went there as well, so I had to then pay all of the expenses which made it harder on me, but there really wasn't another choice. Married couples do get support (the one not in a facility) from Medicaid, but the adult child left alone in the household does not.

There is a five-year look-back law and every state has variations how they do things. You can try a social worker and get advice; most counties have them for free.

No, you will not have to pay her back the money she paid for her share of expenses.

There is nothing wrong with mom paying half the bills.
$10 a day is nothing to add to her expenses for Care.
If mom really can't stay by herself then $100 a day for 24 hr Care isn't too much.

You will need to show how her money was spent and they shouldn't be asking for any money back.

Your mom can have up to $2,000 and be on Medicaid.

If mom sold her house withing I brevet 5 yrs then they would want money.

If mom owns a house, she doesn't have to sell it to be on Medicaid.

You can live in mom's house, just don't sell it or Rent it it out because they would count the Rent monies along with her social checks as income.

In short, keep doing what you're doing.

When my father passed, he left me a Supplemental Needs Trust Fund. I can't remember if it is Revocable or Irrevocable. I believe Irrevocable. I have a trustee that handles the fund and keeps strict records and receipts. I have been on SSD, Medicare and Medicaid.
If the house is yours, and mom is staying there so you can care for her, I would guess that her SS is where the money is coming from. With my SNTF, it can only pay for things the government is not paying for. I was told I could not use it to pay rent bc my SSD is paying for my housing, (in the eyes of the SSD laws).
If the house is yours, and you get $10.00 a day and $100.00 a month, that is $400.00 a month. I am on Medicaid and own a home. My SSD pays the mortgage of $300.00 a month, my utilities of $250.00 a month, telephone and wifi of $100.00 a month. Every year I go thru a review. All they ask for is copies of last utility payment and mortgage, bank statements including trust statement and copy of my SSD yearly statement. The one you get telling you how much you will recieve the following year with COLA adjustments. If she is only receiving SS and Medicare, not on Medicaid or Food stamps, and has assets less than $2000.00, than there is no issue. If she has assets of say, $100,000.00 in an IRA or similar, I would highly advise you talk to an Elder Law Attorney that does Trusts and Wills and knows the Medicaid rules up and down. Call the Bar Association in the biggest city near you like Chicago, and ask for a referral to that kind of attorney. If you go thru the Bar Association, the first consultation may be free. Ask about Supplemental Security Trust Funds aka Special Needs Trust Funds. There are different types of trusts depending on where the money is coming from. If it is her money, she may have to have the state of Illinois as the beneficiary. You didn't mention if she had any assets, but just in case I would do that. Not all lawyers know all the rules. Sounds like the one you talked to didn't. $400.00 a month for room and board and caregiving services is a steal!!! Do have a contract made up and do have a receipt book and everytime you accept payment from her, give her a receipt. If you can, have a deposit receipt or keep your bank statement to show the money went into your account for services rendered. If you buy her clothes, make a copy and keep originals of the receipts. They cannot make you pay her back, nor can she be denied for paying for living expenses. I hope some of this helps you and anyone else who needs it. If I made any mistakes, or someone knows the elder laws and Medicaid rules in IL, please correct me. Best wishes and take care of yourself too. Its lovely what you're doing for your mom.

Couple of things. Do not wait until you only have $2000 in the account to place your LO in a nursing home. You need to be able to self pay about 3 mos or else good luck in finding a quality NH. If you wait till there is only $2000 in the account you will end up placing your LO in s"pending Medicaid" home and it may be substandard. I placed my mom and she can self pay and will apply for Medicaid probably next month. If you place them when you can self pay several months you will have your choice of the facility and then once the money runs out..and LO is Pending Medicaid...the facility CA not kick you out. Once Medicaid is approved they will back pay the facility. Sometimes it takes several months to get approved. If LO is not approved you will have to care for them in your home for the time period of the penalty period.

My elder attorney advised the above. He also said I could have a caregivers agreement with my LO or charge rent. He said it is easier to charge rent. Toy must have a lease agreement signed and a realtor must come in the house and assess how much the rent should be and then he would have to give me a letter stating g what the fair market rental value would be. In my mom's case it was $850. A month. She had a suite in my house with a bath and shared porch and kitchen. I had an automatic draft set up to take those funds from my mom's account to my account.

I hope these tips help.