the inside of an elevator with the doors shut

Still waiting… like in an elevator, before the doors open.

When you are forced to deplete your funds to apply for Medicaid, they (the enforcers) don’t tell you how to pay your bills after that.

As long as you don’t have any money you can apply for Medicaid. Mom gets to keep $40 of her Social Security check every month. Her prescriptions are almost $300 a month, her new insurance premiums (both Rx and Med) are $270 per month. Her real estate taxes are $600 a year (I’m supposed to pay for everything other than her healthcare, by the way). I made a grand total of just under $4000 last year. If you can’t afford it, you don’t buy it. If you look at it that way, she won’t have prescriptions or supplemental insurance. No drugs and no healthcare. Just Medicaid (if she gets it) and Medicare A&B, and maybe D at some point. Wow. Is that how it’s going to be? Why is it that when you apply for Medicaid, and have a lot of prescriptions, not to mention Alzheimer’s Disease, nobody hears you? Nobody answers the obvious question? Now what? They look at your finances through a microscope (hopefully they have good vision), and are supposed to have done this before and should be able to tell you what lies ahead. But they don’t. I should have kept mom’s last $10,000 dollars to help pay for her future expenses instead of giving it to the nursing home. But that was not what I was told to do. I should have given the nursing home the part of mom’s Social Security income they get and kept the rest. But I didn’t. I wasn’t allowed to. It all had to go, but $2000. If I had done that, told them to go to hell, where do you think mom would be? Think she would have gotten Medicaid? I doubt it. The rules say she cannot have more than $2000. Who set that up? I can’t wait to find out who set that guideline in place. I bet their mother didn’t have Alzheimer’s Disease. So I ask again, now what?

The rules say she cannot have more than $2000. Who set that up? I can’t wait to find out who set that guideline in place. I bet their mother didn’t have Alzheimer’s Disease.

Some people, a lot of people, ok, almost everybody wants to ignore the facts. The facts of life. LOL. I made a joke. It’s too hard for them. I bet in training, they teach them to not become emotional attached. What could be more important? They ignore the fact that my mother is a human being who had a life, and 4 kids she raised mostly on her own. She survived colon cancer 40 years ago when most people didn’t. And melanoma 20 years later. Another big one, she survived. She is a survivor. This she will not survive. She will lose her memories, her friends, her children, and her life in the end. Really, she already has. This is not funny. This is her life. So, I ask you, why is it so hard to get decent, respectable, caring people to help her. To them she is a piece of paper. Flat. 2 dimensional, and easily put away and discarded under a pile of other papers. I get that people are overwhelmed and confused, and poorly trained to handle all they have to do. But they aren’t trying to make it different, to make a change, to make it easier to deal with. They aren’t even recognizing her as a human being. I don’t care if it’s just too much to handle. I don’t care if you have 20 or even 100 cases. Or 1000 cases. Or a million. That is your job. Believe me I know it sucks, because I’ve had jobs like that. However, I was not dealing with people’s lives and deaths. Just weddings and birthday parties. But even that, I took personally. It sure was to them. If it’s not right and you know it’s not right, do something about it. Take a stand. Raise a red flag. Say and do something. And do not stop. Keep pushing. Make change. People can do that. Our numbers are growing. We haven’t even gotten to the crest of the wave of people who are caregivers for aging and dying parents. And then what happens to all those caregivers? It’s a gift, right? I do love and appreciate when people send happy thoughts, hugs, prayers and words of advice and encouragement to me. It helps me and everyone it touches. But I want more, I want them to send my story out to people they know, people who may be able to start making a difference. Do that for me and my mom, please. Do that for someone else who is not being heard. I have opened the book on our lives, not keeping it private. The good and the bad parts are out there. I’m telling our story to whomever will listen and to a few who don’t want to listen…

Wait a second, don’t I have siblings?

Didn’t I say mom had 4 kids? Yes, yes, I did. They all live in Arkansas. But remember, I moved 2000 miles and gave up my life in California because I loved my mother more than I love Napa Valley. Two of them are useless and causing problems. They aren’t helping. They are making this worse for mom and me. My oldest brother is actually the helpful one. He helps me, so he doesn’t have to deal with mom. He helped me, in a big way, moving me back to Arkansas. BTW: he’s done that before after I graduated from college, and needed to start over. He’s helped with work on the house. A lot. He stayed with mom when I needed to get away for a few days. He’s done that 3 times in 3 years. Mom never unpacked her boxes when she moved in here. Never put out her décor, much less her kitchen stuff. She never did any work on the house except fixing the roof, which took years. Ugh. She still had the cats in the basement ‘kennel’ and the washer and dryer down there. The steps down were a big safety problem for her. I took that space over as my art studio and the cats moved upstairs into their own space. So did the W&D. Mom is not a hoarder. Her house was mostly clean and orderly. She folded her plastic grocery bags for reuse. Or made her great-grandkids do it. Mom did cat rescue for over 20 years. She would adopt the un-adoptable ones and give them a better life. After she retired from AT&T that’s all she did. And take care of her grand- and great grandchildren as she could. When my mother could no longer take care of everything in her life my niece took over, but she had a family of her own and worked full time. She pleaded with me a year before I moved back home.

So now, 3 years later, her full time caregiver/son for 3 years gets kicked to the curb. Hopefully I will survive. She won’t. I should be able to get a job and take care of myself. But even my hands are tied behind my back. I have to stay here, in this house, in this town, in this State, because my work as a caregiver is not done, yet. And now, I’m a little angry, and just crazy enough (thanks to familial genes) to take everybody down with me when I fall. That was the ‘jumping off the cliff’ point for me, back in January. I’m on the edge of the cliff and the ground is crumbling… What am I supposed to do? What are my choices? Fall or jump? There is a slight difference between falling and jumping. Not that I would ever really jump off a bridge or out of a perfectly good airplane. When you jump, you are making the decision, you are pushing off. When you fall, you give up. You drop. But when you jump, you take the courage from wherever it comes from and leap.  I grew a pair of wings that day.

What I have learned since then is there are people all over the world who have my same story.

They have lived my life, or they are living my nightmare, right along with me. So this is not just about me and mom. Our story, our future, is about a lot of other people, too. An artist friend of mine, who is very intuitive, said she saw me as a guide helping people cross a bridge. I wasn’t sure what that meant until now. I see it for myself. The encouragement I have received recently, and the responses to these letters, keeps me going. That and the letter writing campaign I’m on. Everybody is going to know my mother.

The elevator doors haven’t opened yet, so I don’t know what floor I’m on, and I don’t know how slippery the floors are going to be this time? The bills keep piling up, and I don’t have any money to pay them. And when I get a job, to pay my own bills, am I supposed to pay her bills, too? I have lived both well and poor. I know both very intimately. This is the poor side. I make a little over $9 an hour at Old Navy, part time, but that is not paying the bills. And for me to get a job that pays the bills costs money: clothes, grooming, gas, internet, time. I know the drill. Whether I get that job here, or someplace else is still in question. And until I get that job, what else am I doing? Going to the grocery store last night after work, was a humbling experience for a foodie who has lived and worked in Napa Valley. I’m all about ‘Senior Discount Day’ at Kroger and coupons, already. This time, I went to the dollar store first to see if they had what I needed at a cheaper price. I am not going on a rice diet. Not because I have any dignity left, but because my metabolism is such that I need to eat vegetables and protein, not starches. I splurged on Kroger brand EVOO. But I had to think about it, and every expense I made to justify in my head (and budget) for that purchase. The black-eyed peas were still in the clearance section since New Year’s. Now they’re marked down to .99 cents. I’m still waiting for our good fortune.

Phil Chwalinski

Son & Caregiver

P.S. It’s 3am (I hope to go back to sleep shortly) and I wanted to update my situation and mom’s. I went to see her yesterday (March 6) after talking to the ‘complaint department’ of long term care units. Lo and behold the DHS person in charge of the regional Medicaid applications sent my letter on to the ‘complaint department’. This was in December. They investigated the nursing home and saw some deficiencies. Then closed the case. WTF? Never contacting me. Never sending me notice. BTW: if the case is closed you cannot reopen it. You have to have new problems, because those past issues have been resolved…. I asked her why they didn’t contact me and she said it was because it was a 3rd party e-mail and they didn’t have an address to send the letter. They didn’t bother to find out my address, either. I gave it to her and explained my displeasure, frustration, mistrust, and anger in this situation where few people are doing their jobs. And that I’m not going away, not giving up, not stopping. Who’s your boss? And their boss? And their boss? I finally got up to the Governor. Already working with his office and having the same issues with them…. What do they say: when you assume you make an ass out of you and me? Follow up people! Do not just assume it’s taken care of. I have to contact the guy in the ‘freedom of information’ department and go through a long process to get the report. Ok, you could have made it simple, but you didn’t. Now I want all the documents on this nursing home. All of it. I am that one mosquito you can’t swat away. Ignore me, and I just get bigger.

You know what? No one in any of these departments has asked ‘How is your mom?’ Some days are better than others. She was fine yesterday, thanks for asking, except she has a new pain in her leg and can barely walk. But nobody seems to care about that at the nursing home. I’ve been asking for over a month for the doctor on duty at the nursing home to look at her leg. Nothing. I asked the nurse on duty (who I like) and she said they did nothing about it. What exactly are they waiting on? Her to fall and break something? Talk about negligence. I am not going away. I am not giving up. I am not stopping. On a good note, she is doing sit ups in her bed. I kid you not. She showed me. Better than I can do…. : )

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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27 Comments

  1. These stories are heartbreaking. My mom died 3 years ago and I guess I was one of the lucky ones. My dad was retired Air Force and 100% disabled veteran and died in 1985. My Mom was lucky, she had VA and SS benefits and a daughter(me) that was an RN. My husband had a good job that allowed me to stay at home and take care of her for 10 years. We also went thru the caretaker blues-no days off, no vacations on call 24/7 for 10 years. I really feel for all of you and the disgusting state our healthcare system that we cannot take care of our elderly. I have no idea what will happen to all of us 60 somethings that will need care, it doesn’t seem to be a priority to our nation, so sad

    Reply
  2. When the impoverished sick spouse has to have medicaid, the state cannot come after the INCOME of the well community spouse. In one more year, my husband will be penniless and I have enough assets to keep him at home for a year after that. Then, to get him into a nursing home, I have to do private pay for awhile (that’s the dirty secret no one tells you about. If you have money, a bed will be made available immediately – if it is a qualified facility, it has to keep him once he qualifies for Medicaid). His income is too high for Medicaid, so it will have to go into a Qualified Income Trust ( you need a lawyer for this), an allowance is given to the well spouse, and the remainder goes to the home, and Medicaid makes up the difference. This must be carefully monitored. But even before that, the state can come after most of my assets, which I may put into a medicaid trust, to convert my money to an income stream, which cannot be touched. When he dies, my only other income will be social security, so I have to find a way to manage whatever money is left. If I die before age 85, I am OK. If I am cursed with long life, I’m screwed. And I am one of the insanely “lucky” ones. Many of you are in desperate financial straits NOW, and see no way out.

    Reply
  3. It’s sad, I know too well and this is why our parents are living with us…so they can get the meds/ care they need. Too much money to qualify but not enough to live on. It’s sickening!

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  4. The problem is that if you have ever worked and been a responsible adult, it is very difficult to get help from the government. I have witnessed that people who have never worked don’t have this problem. Their children get braces, they get all of the recommended tests, really something wrong with this system.

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  5. Sad there should be more done through Medicare we all should be took care of.

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  6. If I have learned anything thru the past years of ailing Granny and Parents is why people are known to hide some of their hard earned cash money whether in mattress or safety deposit box. They refuse for the State to get it should they have to go to a nursing home and apply for Medicaid for their care. I will still never understand why Medicare does not cover more than 20 days of nursing home care.

    Luckily only my Granny had to go the Medicaid route for nursing home care. It was a very unsettling process to apply for. Not to mention that the care for Medicaid nursing home residents seems to me to be quite different than those using private pay or first 20 days of Medicare for nursing home care.

    I remember the nursing home moving my Granny to a different room in a different wing of the nursing home once she was deemed a “Medicaid” resident. The nursing home experience changed much at that point and it took a family member being there everyday to make sure decent care was being given and if it was not, file a complaint. So sad for residents who have no family checking in on them and their care.

    Reply
  7. Cancer #1 in bankruptcy. After our money ran out. Since we had made something of our lives. They said we could on get 15.00 in assists for food. I said that wouldn’t buy him two Boosts protein shakes. What about 50 yrs of taxes.. they said we had to get rid of all assets and be under 3,000 in assets for help! Told me to let my other bills go. Which was so hard to have phone constantly ringing with collecters. It was his Life or keeping our credit. It’s a horrible reality. Know many people going through it alone. 76 yr old with Cancer in 7 places. Another professional whom had custody of gdaughter and was homeless. Kind stranger let her have a room and would care for granddaughter while at chemo. Saw kids holding a sign on frontage road. Saying Help our mother has Cancer. They were terrified as kids of single Mom and no one to help..This was just down from #JerryJones #Nonprofit #NFL . Like this article. I now teach families to hold strong through this journey! #phoenixchemo. This article was right on !

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  8. Looks like you have to be broke to get Medicaid

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    • Pretty much so unfortunately.

      Reply
    • You can own a home, one used car, and have $2k cash. That’s it. Income must stay low, so no investments.

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  9. Phil, thank you for keeping on fighting the good fight. The nightmare of paperwork and logistics when dealing with Medicare, Medicaid, and the VA is enough to send a saint into a mental collapse. My mom is 88, has some form of dementia (mid stage, and worsening, of course), along with multiple health problems. It became unsafe (for both of us) for me to keep her at my home out in the middle of nowhere, so I put her in an assisted living facility with a “memory wing”. Her funds are now down to the point that she is eligible for Medicaid, and I am slogging through the paperwork. A depressing activity at best. They are going to require me to put our family farm up for sale – with a sign that is legible from the road with a working phone number, no less – as part of the process. This farm has been in our family since 1908, and my grandson is the 5th generation to live on it. I have been so depressed, I’m finding it difficult to work on the application forms because it triggers anxiety that is disabling to me. He is living in there old house, and would like to continue to do so. I keep trying, and failing. I feel like I am letting my grandson down because the state is forcing me to put the land up for sale. Luckily, mom is in a good facility, but the minute they heard the word “Medicaid”, they drafted a letter discharging her and told us she would need to go to a skilled nursing facility. Every time I walk in her room, mom begs to come home and we have to go over all the reasons I’m can’t care for her out here by myself. I’m at my wits end, and I feel “frozen” if that makes any sense. Maybe paralyzed is a better word. I think I’ve developed a case of PTSD from dealing with; a) her dementia….she wasn’t pleasant to be around, and I couldn’t trust her for a minute to stay out of trouble if my back was turned. b) I have been dealing with my parents “end of life” for over 11 years now, and I’m just so damned tired. c) I already had been diagnosed with PTSD 13 years ago from an abusive marriage. Wish me luck, I’m going to try to make some headway on the paperwork again tomorrow, God help me.

    Reply
  10. Thank you. There should be an easier roadmap for applying for Medicaid. It’s more like they don’t want you to get the assistance. Some very wrong here. And I’m going after it. I got nothing to loose. I already lost my mother to ALZ. She’s not dead yet, just not the same.

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  11. Thank you Phil for all you are doing and have done..
    I am just now researching Medicaid

    I got it for my mother in law years ago , but I am sure things have changed ..

    When she was on Medicaid they no longer took money out of her Social Sercurity checks .. If I remember right when she went into a nursing home everything was covered including her Meds on Medicaid..

    When she was in Assissted Living I believe we had to pay for her Meds then

    I remember she was able to keep $35 and that was it..

    Then I discovered the Veterans Pension for Aid and Attendance and I got that for her..

    Part of that pension was excluded from the figures while applying for Medicaid , so she was able to keep her Veterans Pension for Aid and Attendance.. She was receiving that pension as a spouse of a Veteran..it was a little over $800 a month at the time..it’s more now..

    It would be different applying for Medicaid for my husband , as I would then become the community spouse and I would not be applying for Medicaid for myself.. The rules are different in that case.. That’s what I am researching now..

    I was reading about other programs Medicaid has here in Florida if a person is 65 or older and or disabled.. Something called an ADA Waiver
    Also a SMMCLTC program..and several others..

    If we can keep writing letters and sharing information, we can make some changes ..

    God Bless You all

    Theresa

    Reply
  12. Thank you. Tell your story. Go public. Write letters. The internet has saved my ass many times. It has made a difference in the outcome of my (our) story.

    Reply
  13. In my position as my wife’s provider and caregiver and as her husband, I found that the policies of various hospitals also could be a huge issue. My wife is young at 55 years old. She has had a full life in spite of a motorcycle accident at 17 years. It is her resolve to survive and have a quality life that has often forced the issue with medical providers. But the issue you wrote about with Medicare and Medicaid is especially frustrating. Her SSD check is about 40 dollars above the line for receiving Medicaid. Her medications are incredibly expensive and her often emergencies and hospital stays are all copay visits on her Medicare wich cost us the 20% of each bill. It is overwhelming. The idea that someone in an office somewhere that is there for the career and not the calling, is determining my wife’s future and with the stroke of a pen deciding her level of income and eligibility for aid is beyond repugnant. And yes, to each of those people sitting in those offices on a chair that needs to be wider every year they are there, my wife and all other patient’s that are in their purview are just a number, a cipher and a pile of documents summarized in a case number. They are not interested in your mother, don’t want anything to do with her, because it is not about your mother or my wife or anyone else that is struggling. They are not called and not inspired, they are there for the career. Someone offered them a job in the office at a given amount per hour or year and they took it. A purely selfish financial decision. I have noticed that the people who work in social care and services who have a heart do not last long. They are either promoted or let go and what remains is the career office worker who is there pushing paper around. In order to effect change, a person has to resort to appealing to the feelings and compassion in individuals that can be reached. And I have been learning, making things public changes people’s perspective. When a social worker, a hospital director, an administrator learns that they are going to be famous or infamous due to my writing, it tends to inspire them to get a new effort underway. Write, write to newspapers, TV stations, radio stations and to any other news people that you can. Find the way to reach the crowd of people out there in every community that do care. Make Mr and Mrs and Mis average citizen ache in their heart for your plight and you will find some allies. Without allies we become Don Quixote tilting at windmills in people’s minds.

    Reply
  14. In the category of YWFBT but it’s true: my sister is now trying to get guardianship over our mother. The nursing home called me this week and told me and I just found out from my brother at 5pm TODAY that the hearing is TOMORROW at 3pm in the Garland County Courthouse. No summons, no nothing. Sounds like she doesn’t want me there. I have POA over both financial and medical. All the work is done (by me), and she now has Medicaid, and is in a nursing home. What’s the point? So I’m missing a full day’s wages to get on the phone at 8am, and get ready to be in court at 3pm tomorrow. I may wear my purple bowtie and I’m taking the poster I made for my trip to the Arkansas State Capitol. BTW. Her lawyer is Tyler Tapp and his phone number is 1-800-792-7362 or 501-566-1484. His website is tapplaw.com. PLEASE feel free to leave a message and tell him what you think of this situation. I’ll be on the phone at 8am all over the place….

    Reply
    • I am a caregiver to my husband who suffers from mental illness,COPD and CHF and has had multiple heart attacks. The problem is I need to work but if I do he loses his Medicaid. Without Medicaid we would not be able to afford all of his meds and Dr appointments. I don’t know what they expect you to do. You’re danged if you do and danged if you don’t. My husband is only 57 and we have accepted he will never get well. The powers that be say I can only make a couple hundred a month. If we go over he loses Medicaid.

      Reply
  15. Update for April and on… Mom was denied Medicaid on their mistake and after I raised hell locally, state wide and nationally they changed their decision. She got it! The nursing home is trying, but not really fixing their problems for the long term. Mom’s Social Security check will now go directly to them. My next problem is finding a resource to pay for her meds now that her funds are depleted as required my Medicaid…. Don’t they think of these things?

    Reply
  16. Thank you. That’s why I’m am telling our story. All our stories….

    Reply
  17. We are going thru this with my grandparents right now. It’s so sad. They have a 50 acre farm that they dream to have stay in the family. They have been in and out of assisted living at $4500 per month! Granddad is 92 and WWll vet. Grandmother had Alzheimer’s. Now they want to come back home again because they miss their home. Setting up home care services will cost out of pocket just as much. My Mom tried filing for Medicaid and no luck because of their assets. So does a person just hand over their farm they worked their whole life to pay off, to a nursing home? And then the bills still aren’t paid because they can’t afford it anymore. In KY, you have to transfer property 7 yrs before hitting the nursing home. Who can convince their elderly to sign everything over to them before they get to this need? It’s so sad and has disheartened me to so much worry. As far as the care you are giving and the bills you are paying….these will be deductible on your taxes. You need to claim them as dependants. Prayers to your family and all who struggle with these decisions.

    Reply
  18. Thank you, Phil, for writing these open letters. When I began the caregiver process with my Mom four years ago, I had no idea how difficult the navigation would be or places it would take me. Waiting for the bills, month after month, knowing if they go up again I will have to find the money, somehow, for her to remain in assisted care. I finally took and have maintained a full time job in education because my Mom is now stable, has her primary needs met, and most of my work can be done on the weekends for Mom. I also know how quickly this could change, what a crisis it will be when it is “paperwork time” again. In December, my Mom was issued an “eviction notice” from her Medicaid approved assisted care facility because I missed 240.00 on the invoice, which I thought would be covered by Medicaid. Eventually it was, but since it was on the invoice I learned, the very hard way (a 100.00 late fee) I still had to pay it because it had been over 90 days since it was submitted to Medicaid. My Mom is now in danger of losing her pharmacy at the assisted care facility because I have tried to apply for part D over the last six months, and it is NEVER approved or completed. I don’t know but hope I can pick up her medications and they will administer them even if they are through another pharmacy. I am holding on for my Spring Break next week as it will allow me to catch up on paperwork and sort through the rest of the bills. Then summer will allow me (I hope) to sort everything out properly to get a good start to the next year. All of that assumes my Mom remains healthy enough to continue with assisted care. With dementia, you always realize in the back of your mind, all things could change in just about an instant. Peace, Love, and all the support to you as you try to distill and share “our” stories. Christine

    Reply
    • Thank you. See, that’s exactly why I’m putting our story out there. It’s not right. My life is like multitasking with ADD.

      Reply
      • I have thought of your post and the realities you are sharing over the last few days. When I started down this road with my Mom I ran into so many situations (and still do) where there is no one to help me navigate the right thing to do, the right paperwork to submit, or the right people to call. Sometimes it seems various doctors and health facilities see care for those with dementia as “pallative care.” This has been hard to deal with, absorb, and consider. I believe I have come to understand this perspective, it makes it no easier to deal with. My Mom is happy, having fun, enjoying her life. She has been taken off her blood pressure medications and her bp is up by over 15 points. Even though I have medical power of attorney, I cannot get a good answer regarding why she was taken off the medications (she is 76) full-time work means I cannot really get good answers or change the course of treatment in a significant way. That has been hard, Phil, to deal with. A heart attack does not mean my Mom would die, it would mean she would have a significantly lowered quality of life. Some days I do not know what to do. I know why you work part-time, I wish there was some way I could do so, I can’t at this point 🙁

  19. When my mother was on a nursing home getting substandard care, I bypassed DHHR and filed a complaint with state licensing dept.They investigated found I had valid complaint, sent me documentation which if I could have afforded it and had not been so physically and emotionally exhausted I could have used in court.However the nursing home only had to write up a plan to correct it. Nothing ever changes!!!

    Reply
    • Thank you. There is a State complaint and a Federal complaint I’m working on. I don’t have money for any of these actions, either.

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  20. Thank you. Each state may be different. Talk to as many ‘experts’ as you can find about Medicaid. Compile a list of questions and answers. Make them accountable. Be the squeaky wheel. Be the mosquito. Talk to the financial/legal person who did the trust. Don’t keep it to yourself. Talk to people. The internet if full of info. Good luck, and press on.

    Reply
  21. I am in the process of filling out application for medicaide for my 91 yo mom. I don’t have intentions of putting her in nursing home, but hoping for in home care. I know she is over the allowable income and I will be forced to use a trust fund for which we have to pay a maintenance fee to pay her bills. I’m not sure I want to do this. I’m confused and worried.

    Reply

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