a man punches a time clock

Two and a half weeks work. Just to pay one bill. No groceries, no utilities, no gas. Just to pay one bill. Homeowner’s insurance. No choice. Well, maybe I could cancel the policy, but then what? Not a better solution. Next up is personal property tax for the house, due in October. 222 hours’ worth. 5 and a half weeks work. Just to pay one bill…

Backdating Medicaid is still up in the air, and I haven’t heard from them. But the nursing home still wants their money. I already have the letter stating if I don’t pay they can ‘involuntary discharge’ mom. They can do that. I hope not. Even though mom has Medicaid and Rx paid now and in the future, it’s cheaper on them to move her to another nursing home, if there is one, and it may not be in the area where we live, than to keep her. That’s what they said. I asked them if they were solvent…. It does not make sense to me to move her to a strange new place, away from familiar faces, where she has lived for over 20 years. And they know she has Alzheimer’s and the damage that can cause.  Can I get a home equity loan they asked? Really? Who is going to give a person dying of Alzheimer’s disease and with major debt, a loan? The house is in her name per the Medicaid application process, and even though I have POA over F & M, I haven’t worked in over 3 years, so I am not a good risk either. I’m working full time hours at one job for now, which will end when the season is over, and still part time hours at another job. And that’s at half the pay I was making, but not in the management position, so I get that it’s not the same. So why would anyone go through this much trouble to care for a parent who has Alzheimer’s disease? It’s too much. I’ve haven’t seen mom in over 2 weeks. I’m working 50 hours a week in 2 jobs, and have less time for myself than when she was at home. How can I help her hold on to what ALZ is taking away from her, when I’m not there? The nursing home doesn’t. Her family doesn’t. I don’t have time to waste on pity, guilt, or anger. I know that won’t help. I went to visit my niece, and then spent a day with my father (who is 83 and has not gotten his future plan together) at the farm. They are helping me with some financial support, which is amazing. Mom’s ex-husband, and her grandchild are helping me get through this.

How can I help her hold on to what ALZ is taking away from her, when I’m not there?

There is no happy ending here. It will surely end the way it does for everyone with ALZ, 100% fatal. But it’s not quick or painless. It’s a slow and lingering death. Little by little it chips away at your brain (to use an old phrase), until you are bedridden, immobile, and just an empty shell. I wonder if Nancy Reagan had not been so private and told her story, where we’d be right now with research and a cure? More and more people are coming forward as this disease has touched them or someone near and dear to them. And you know that helps. That 300 million dollar budget increase is on the table right now. The major piece that is missing is a network of communication and cooperation from all parties involved. None of the government agencies I deal with talk to each other. Not the IRS. Not Medicare. Not Medicaid. Not Social Security. Not local, state, or national government agencies. And you can bet the private companies: retirement benefits, insurance companies, pharmaceutical companies, hospitals, nursing homes, oversight agencies (both government and private) don’t either.

I wonder if Nancy Reagan had not been so private and told her story, where we’d be right now with research and a cure?

What bothers me the most in this situation (other than mom having ALZ) is that this is not a new disease, it’s growing leaps and bounds, and still, it’s like a new day for everyone involved. Everytime. Where is the game plan in place the minute anyone is diagnosed with ALZ? There should be steps in place for every stage, and take into count for every action and decision, what is going to happen in the future. Every decision made by a government agency employee, or private employee affects the future. Why are they not working together specifically for Alzheimer’s disease? Why do you have to deplete your assets to apply for Medicaid and then not be able to pay the IRS income taxes, or any major bills that will be coming? I know there are lots of diseases and causes out there that deserve just as much attention. I hope someone is out there advocating for those. This is my disease and this is my cause. I may be swimming in the middle of the ocean, but I will not stop. I will not shut up. I will not go away.

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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6 Comments

  1. I haven’t been paid for services rendered in over a year! Forcing me to work for free while living in poverty.

    Reply
  2. Excellent article . Only child with two parents who never planned for elder care not even burial. My state enforces filial laws. I can’t not work and I can’t pay their bills. I can’t quit my job to provide 24/7. Care which they are going to need at some point. I have been looking for an advocacy group . No family should lose everything due to serious illness or elder care. I never want my child to ever go through this ever

    Reply
    • Unfortunately that is what will happen.

      Reply
  3. Correction: it was Ronald Reagan’s administration that began the serious brain research which has produced the results today. I believe there had to be 20 years to have valid results ( don’t quote me on the exact number) and had it not started back then we wouldn’t be where we are today. Not a Reagan fan but I am a research fan.

    Reply
  4. The government will do nothing for seniors because it costs them more than a dying senior citizen is worth. That’s the damn truth.

    Reply
  5. Today I got a late certified letter from the end of June that the Medicaid appeal for backdating decision is denied. The date was June 26, after the June 23 appeal hearing. So maybe the nursing home already knew the decision on July 10 when they asked for full payment by August 10 or mom will be discharged home.
    I finally spoke to the State Ombudsman, Kathie Gately, and she wasn’t much help except to say to send a letter appealing the nursing home’s decision to discharge. Done. And she is sending me a list of all the nursing homes in Arkansas who have Alzheimer’s wings to choose from. And to go to her website to ‘compare’ facilities. She also said Federal law prohibits nursing homes from discharging patients into dangerous situations. So why did the nursing home say they were sending mom home and not to another nursing home? They are playing hard ball…. Granted I was not a southern gentleman with her on the phone, however when I asked her if she ever had someone with ALZ, her reply was that when her son was 5 she ‘had to forgo her personal needs’ and send him to a facility 2.5 hours away. The implication being that I’m not doing enough for my mom, and should think of her needs above my own. I wanted to spit in her face, but that wouldn’t be helpful.
    I called Shanee Birl in Miller County who ‘handled’ mom’s Medicaid application and she said the nursing home has to fill out the hardship waiver, not me. So why haven’t they even offered? I have to ask them.
    I have asked the AR DHS Office of Appeals and Hearings for a ‘Reconsideration’. Apparently that’s a thing, too. I can also appeal Wayne Davis, Hearing Officer’s decision through the Administrative Procedure Act with a judicial review by filing a petition in the Garland County Circuit Court. Too bad it can’t wait until August 3rd when I’m there for Vivian’s 2nd guardianship hearing…. I am tired and wondering if this train wreck will ever stop. it just keeps on going, and going, and going!
    One more phone call to the Office of Long Term Care and if I can stand it one to a lawyer, if I come up with $1600 retainer fee. To pay a bill or not pay a bill, that is the question. Drowning, here.
    Oh, and by the way, my visit with mom on Sunday went badly, as expected to happen sooner or later. Word salad from her as her thoughts were all jumbled together. She drew me an unrecognizable picture of a house I am supposed to design for myself and her, then she walked out of her room as I was drawing a picture of mountains (at her request). She went to the dining room for dinner. She usually eats in her room when I visit. I left without saying goodbye.

    Reply

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