a man whose shoelaces have been tied together

When I started this journey over 3 years ago I thought I had a noble purpose: to take care of my mother. Caregiving is supposed to be a gift. Countless people said what a ‘good son’ I was, and how fortunate my mom was to have such a son to help her. And now we get to the part I was in no way prepared for. Not by the books I read or the so called experts out there I listened to. We had a 3 year plan and almost made it but stumbled before ‘making it home’.

I thought I was doing the right thing, taking care of life business, pushing that rock uphill over and over. Then it rolled back over me.

All along no one would tell me what would happen after. For instance, when you apply for Medicaid your assets are limited to $2000 cash, a house, and a car. No one could answer my question about how to pay bills after the money is gone. Her Social Security check is supposed to go to the nursing home, except for $40 dollars she gets to keep. For some reason her Social Security portion is billed at a greater rate than she actually gets. How is that possible? Sounds like another error. Her prescriptions and colostomy supplies are over $300 a month.

What about supplemental insurance? Forget about it. No outside doctor visits, no dentist, no eye care, no hearing care, or hospital visits. And why would a person with Alzheimer’s Disease confined to a nursing home have to sign an ‘intent to return home’ document in the application process, when that is not reality. And a car? Really? I did say Alzheimer’s Disease. BTW: she was denied Medicaid benefits April 1. But I will get to that.

Guess what else happens in April, say on April 15? Taxes! Her State and Federal taxes due are $5000. And that is because we had to spend down her assets prior to January 1, 2015 making them taxable in 2014. Sorry Uncle Sam, mom’s broke. Sorry credit cards, mom’s broke. Sorry doctors and lawyers, mom’s broke. Sorry nursing home, you can have her whole Social Security check, but how will I pay for her prescriptions?

So let’s talk about Medicaid fraud from the inside. What do you call it when it happens from the inside of Medicaid? And throw in a few mistakes on top of that. My Medicaid application case worker is in Miller County. She doesn’t answer her phone, and it’s a desk job right? The Garland County DHS office is right down the street from where I live. I pass it every day. But they don’t handle applications in their own county. Too personal. What could be more personal than Human Services. I can’t stop in and ask questions, or drop off documents because why? So I get it. Their job is to see you don’t get Medicaid for whatever reason they can find. That’s the inside Medicaid fraud: that you don’t get it.


Way back in December I requested 5 years of bank statements at a cost of $300, getting ready to apply so they could go back that far. Don’t give anything away for the last 5 years. Record everything. They didn’t ask for that. She can’t have a trust and apply for Medicaid either, so we got the house out and her retirement out. New deeds, and bank statements covered that. Our Miller County case worker asked for a full copy of the trust, anyway. $20 dollars later she had one. When I questioned her on it, she said she didn’t really need it after all. She asks for monthly bank statements which note her balance, but not the last one. Not March. So on April 1 she denies mom her Medicaid benefits because of ‘assets over the limit’. Had she or her supervisor in Little Rock, checked on April 1 they would have seen that her assets were well below the limit. Seems like another random mistake to me. A very costly mistake which puts mom back on private pay at a rate of $170 per day, going back to January, in a nursing home where I have a Federal complaint and a State complaint registered.


I’m still not over that shock and it has taken me several weeks to even act on it, and I am working 2 jobs now to pay my own bills. I replied to the Miller County case worker that I would need a hardship waiver, and would appeal of her decision. I haven’t heard back from her, or her supervisor or the assistant director of DHS in Little Rock. Next I am closing mom’s checking account and signing over her Social Security check to the nursing home. I am slowly erasing my mother’s life. Bit by bit. Not only will Alzheimer’s Disease take her identity, but real life is doing it to her as well.

Yep, I am April’s Fool for trusting the people in charge to do the right and true and fair thing. So what is this Fool to do? Backed up against the wall again, but this time really more like being put in a cage and dropped into the river. So much for this caregiver. So if I survive this, I might be a little different from now on. Not so nice…

Written by Phil Chwalinski
Phil spent 25 years as a specialist in catering and special events in Arkansas, then Florida, and ending up in California for 11 years. He was a Catering Sales Manager at a hotel and as a Wine Educator at a luxury winery in Napa Valley, CA. For the last 3 years he has been a full time caregiver for his mother who was diagnosed with Alzheimer's disease, back in Arkansas. One thing hasn't changed over the years - Phil is also an artist.

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  1. After much worry, duck rowing, and mental prep for the Medicaid appeal hearing yesterday, I think I did ok. I won’t know the decision until I receive a letter. We were under oath (just the facts ma’am) so I read her bank statements and her bills…. This is how it went: I showed up to the local DHS office and signed in. Name and why you were there. PC. Medicaid Hearing. When they called my name they asked me who I was to see. ‘I don’t know. It’s a hearing.’ After much talk amongst themselves, they said someone will come out to get me. ‘Janie’. ‘Janie’, ‘Is there a Janie, here?’ Oh damn…. I said ‘Janie’ is my mother, I’m Phil. She is in a nursing home. Then she takes me to an empty office, and said ‘that’s all we have to do, is provide a phone’. Ok. I lay out my ducks on the desk and wait for the phone call. Call comes. Introductions. ‘Raise your right hand and swear….’ (In an empty office with no witnesses), but I do it anyway. It’s me and the ‘judge’ and the caseworker from Miller County who handled the application. Opening statements. Hers: More than $2K. Me: Bank statements and bills. Questions. ‘judge’ asks a couple. Closing statements. Hers: No statement. Me: When my mother was diagnosed almost 4 years ago, we had a plan…. Then it was over. We’ll see if they can do math. BTW: Mom has Medicaid, and it will continue, no problem. I am asking for backdating on the start date.

    • Denied. Apparently, they can’t add. It doesn’t matter that your bills exceed your finances. Really? Another appeal.

  2. So good to hear some good news Phil.. I will add here .. If any one else is going through this and you are caregiving for someone who is 65 or over and served in the military .. Please check out VETERANS Pension for Aid and Attendance..

    This will help pay costs of assisted living or home care

    Take care
    Theresa Loder

    • Thank you. Good news.

  3. God bless you Phil. You seem to have run right into the middle of the “perfect storm” for caregivers. Red tape, public servants that do every thing BUT serve the public, more red tape, poorly run skilled care facilities……omg. I’ll bet your blood pressure is sky high, so please keep an eye on it. With that amount of frustration, it will be a miracle if you don’t have a stroke and pass away before your mom. I’ve been hit with a some of what you’re facing, and I hope to hell it doesn’t keep going downhill. I suspect it will though. I don’t have any words of wisdom, but I do want to send you a huge virtual hug. Please hang tough!

    • LOL. Thank you. Yea, It’s a lot to handle. It ain’t just being a caregiver. What saves me is telling my story and all the support I have received.

  4. I have an update: Medicaid reversed their decision without a hardship waiver, appeal, or re-application. And mom gets her meds, too. Finally some good news in this horrible situation. But we aren’t done yet….

    • I’m so glad to hear!

      • Thank you. I’ts a long journey and I’m hanging in there.

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