In this episode, I continue my series by recounting my efforts to maintain my Medicare and Medicaid benefits and live in a safe, comfortable environment.

Hello, this is Chris Young. Welcome to Episode 114 of Contemplating Life.

In this episode, I continue my series by recounting my efforts to maintain my Medicare benefits and live in a safe, comfortable environment.

When I left off last episode, we had just established a trust fund that would allow me to inherit money when my dad passed away, and it would not affect my Medicare or Medicaid benefits. All we did was execute the documents to establish a trust. We obtained an Employer Identification Number (EIN). It’s a way to identify a business or other legal entity, just as an individual is identified by their Social Security number.

We decided not to put any money into it until we had to. So, we didn’t open a bank account. The trust existed only on paper as a legal entity, with no assets.

In those days, Medicaid conducted an annual review of every recipient. You had to inform them of any increases in your income or any other changes that could affect your eligibility. I decided I should tell them about the trust. I didn’t want to be in a position where, perhaps five years in the future, Dad passed away, and we put money in the trust, and then they discovered it had “existed” for five years, and I didn’t inform them.

They canceled my Medicaid because I refused to give them a bank statement for the trust. I kept resubmitting documents, explaining in cover letters that there was no money and no bank account.

Okay, timeout. I can’t resist. Here is an opportunity to tell one of my favorite jokes that I’ve told a hundred times. In fact, I told it earlier today as I’m writing this. However, I’ve never told it in this podcast.

A guy walks into an ice cream store and orders a gallon of chocolate. The clerk says, “I’m sorry, sir. We’ve had a big run on chocolate today, and we are totally out.”

“Okay. Give me a quart of chocolate.”

“I’m sorry, I wasn’t clear. We don’t have any chocolate whatsoever. We have over 30 other flavors, but we are totally out of chocolate.”

“Well, then give me a pint of chocolate.”

“Sir, can you spell the van in vanilla?”

“V. A. N.”

“Okay, can you spell the straw in strawberry?”

“S. T. R. A. W.”

“Now, can you spell the fuck in chocolate?”

“Uhh, there is no fuck in chocolate.”

“That’s what I’ve been trying to tell you! There is no fuckin’ chocolate!”

[Sound FX: rimshot]

And there was no fuckin’ money in the trust fund and no fuckin’ bank account. Anyway, I finally got it through their thick heads that there was no money.

Eventually, the State of Indiana quit doing detailed annual reviews of everyone. If you had been on Medicaid for a while and had passed all of their reviews, they decided they could just rubber-stamp your continuation of benefits and trust under the pain of law that if there were any significant changes, you would report them.

I don’t recall when the last detailed review of my case occurred. However, they are cracking down now, and everyone has to be reviewed and recertified. My recertification was supposed to occur last month, which was March 2026. If they don’t complete the recertification by the end of April (I’m writing this on April 8th), I will lose my benefits. But that’s getting ahead of the story.

Things went relatively smoothly for the first few years. Dad stayed in relatively good health for his age. I had a few health scares along the way that we’ll chronicle in other episodes someday. Briefly, I had a hole rupture in my intestine in 2006. I had a G-tube placed in May of 2016. I got my trach in December 2016 and my suprapubic catheter in September 2019. I also had a couple of nasty bouts of respiratory issues, as well as countless urinary infections, some of which required hospitalization.

As previously mentioned, we went through countless home health aides and home healthcare agencies over the years. I can’t begin to remember all of the details.

One agency that I had to fire was because the office personnel consistently lied to me. I’ll never forget this story.

The problem was with the woman who was in charge of scheduling. I’m tempted to use her real name because I don’t care if I expose her for the incompetent, dispassionate liar that she was. But I’ll try to be kind, and we will call her Jane.

I had a very reliable aide. Sadly, I don’t remember her name. As with any of my people, things come up. They have doctor’s appointments, their children get sick, or, for whatever reason, they might need a day off. We had also trained a backup aide, whom I really liked. Again, I don’t remember her name either. She could occasionally squeeze me in between two other clients. I knew that when she filled in, she could not be here at my usual time of 9 AM. The soonest she had ever gotten here was about 9:50.

On the day in question, Dad was having cataract surgery. I had some family friends who were going to stay with me. On a day in which I was quite nervous about my dad’s surgery, I had the added frustration that my regular gal couldn’t be there. I called the office, and Jane said she would call the backup person. Jane said that the backup would be here at 9:30. I didn’t think it could be right, but I took her at her word.

When the backup aide arrived around 10 AM, I told her what Jane said. The aide said, “Yes, I know what she told you. I was on the other line talking to her when she said that. I screamed at her, ‘ I told you the absolute soonest I could be there was 9:45, and it would probably be 10:00,’ but she didn’t care. She told you an absolute lie, and she knew better.”

By the way, Jane never answered the phone when I called her direct number. I always had to leave a voicemail and wait for her to call me back. On one occasion, I called her about a schedule change that was two weeks away. She never returned my call. That’s when I went to a different agency.

I should’ve mentioned earlier that an agency provided me with case management services. The Central Indiana Council On Aging, or CICOA, helped me with my initial Medicaid application. They would do routine in-home visits to see if I was getting the services I needed. Once a year, they would do a major review of my needs, and we would set goals for the year. Primarily, my goal was to continue living in my own home, try to stay out of the hospital, and continue enjoying social activities such as concerts, movies, and my hobbies.

They provided these case management services from 2009, when I first applied for Medicaid, until September 2025, when case management was taken over by someone else. More details on that story another time.

I had a variety of case managers with CICOA over the years. All of them were great people. They enjoyed working with me because I didn’t need much. The only time I needed help was when I had to fire an agency. In the case I just described, they asked me, “Do you want us to notify that agency that you have quit them and are going with someone else?”

“Well, normally I would say yes. Let’s have you do it for me. However, this time, I want to call them and leave a voicemail and explain in no uncertain terms exactly why I’m leaving.”

I called the office and explained in no uncertain terms that Jane had lied to me on multiple occasions. She had not returned my call for over two weeks. She was the sole reason why I was leaving their agency. I told him that if they didn’t do something about it, I wouldn’t be surprised if they continued to lose clients because of her.

Jane told me back this time. She explained that she had been on vacation, leave, or something, and didn’t get my message.

“That’s not my problem,” I explained. “You should have had someone monitoring your voicemail. The fact that you didn’t, or that they were incompetent in doing so, is further reason why I can’t do business with you anymore. But let me be clear… You, Jane, are the primary reason I’m leaving.”

I don’t recall exactly what her response was. I think she made some sort of apology, but it was more along the lines of “I’m sorry we couldn’t meet your needs.” Not, “I’m sorry I’m a lying bitch.” She said that if I ever wanted to come back to that agency, they would welcome me back.”

I said, “Not as long as you’re working there.”

I got tremendous satisfaction from telling her she was the reason I left.

I later told this story to a friend at church, Tina Grannan, who was a nurse. I was surprised to learn that Tina had previously worked at that agency. She confirmed that I wasn’t the first and probably wouldn’t be the last client they lost because of Jane. The problem was that Jane was best friends with the company’s owner and would probably never be fired.

Other times that I had to fire an agency were not as dramatic. In most cases, they simply didn’t have any employees who could meet my needs and my schedule. They would try to hire new people, but often they didn’t work out.

This story is a bit out of sequence in my timeline, but it’s a good time to tell it.

An agency sent me a petite 61-year-old woman. Typically, it takes about 15-20 minutes tops to give me a bed bath. It took her slightly over 30 minutes to bath meHim. I could tell she wasn’t going to have the strength to wrestle me into my back brace or reposition me in the wheelchair once she had lifted me with the Hoyer lift. I thanked her, sent her on her way, spent the rest of the day in bed, and told the agency to try again.

The next day, they sent a young lady who was extremely nervous. She was frightened to touch me. We tried to reassure her that we could train her how to do the job safely without hurting me.

The first task was to undress me. I wear a white undershirt, underpants, and socks overnight. I told her to pick up my leg by the calf and take off my socks.

She turned to my roommate, Barb, and asked, “Show me how to do it.” (By the way, we’ll talk about Barb and how she came to be my roommate in the next episode.)

Barb showed her. Then the aide very timidly picked up my leg and peeled off my sock. By the time she had completed that task, she was nearly in tears. She apologized and explained that she had told them she was uncomfortable doing extensive care. Previously, she had mostly done things like housekeeping or companion care, just sitting with an elderly client and keeping them company, or perhaps fixing lunch. She wasn’t going to be able to do the job. We thanked her and set her on her way.

Reluctantly, we moved to a different agency. They were highly apologetic and explained they simply couldn’t find the right person for me. It was an amicable split.

Another time, I signed up with an agency, and the owner said she would be my caregiver until she could find someone to take over my care. That proved to be much more difficult than she anticipated. In those days, I was getting help seven days a week, both in the morning and in the evening. She would get me up in the morning, and her husband, who also worked for the company, would put me to bed at night.

By the way, I had an embarrassing moment. I always try to engage my caregivers in conversation and ask about their families, spouses, children, and whatever else. They had been working for me for about two weeks before I realized they were husband and wife. They both talked about their spouses, but I didn’t make the connection.

Working seven days a week while running the business became quite the challenge for her. I enjoyed working with her, but I could see the strain. She began regularly asking for Sunday off for church activities. I agreed to stay in bed those days.

After this went on for a couple of months, she told me that she, her husband, and children were planning a trip to their home country, Nigeria, to visit family for most of December. It was about five weeks until they planned to leave. I explained to her that we had spent months trying to find someone to take over my care and had been unsuccessful. Even if we found someone before they left for their overseas trip, we had no backup. If something went wrong, they were going to be halfway around the world. I had to sign up with a different agency now, while I still had the opportunity. They completely understood.

Speaking of Nigeria, many people from that country enter the healthcare business. I’ve had at least six people from Nigeria work for me over the years. Also, I’ve had several others from Nigeria in hospitals who cared for me.

One of them stands out as quite memorable. He was a very tall, muscular young man who said I should call him Mr. Dele. He explained that I probably couldn’t pronounce his African name. He worked for me for perhaps six months in the summer and fall of 2010. The reason I can remember that date is that while he was feeding me lunch every day, we watched the FIFA World Cup from South Africa. He was very excited that it was being held in Africa for the first time.

One day, I asked him what his real name was. He said, “Bamidele Adewale.”

I said something like, “What the who da what the what?”

He laughed and said, “I told you so.”

I asked him to write it down. Once he did, I read it perfectly. See the transcript or the YouTube version to see the spelling.

He was one of many people who had to move on because he wasn’t getting enough hours. He had an opportunity for a 40-hour/week job at Larue Carter Mental Hospital. They needed big, strong men who could handle unruly patients.

A few weeks ago, Mr. Dele reached out to me because he needed help with his laptop. He wanted me to make sure it didn’t have any viruses or unnecessary programs slowing it down. He explained that he had been through some very serious health issues. He had a heart problem that required him to be put on a Left Ventricular Assist Device (LVAD). He had to carry a battery pack when he went out or stay plugged into a battery charger overnight at home. He has a preteen daughter whom he is raising. I’m not sure how he’s making ends meet. He was just happy to be alive after all of the things he had been through. And I was very happy to see him again and to know that he was okay despite his difficulties.

So let’s recap. In the last episode, I told you about Riah and Rick, who both had to quit for medical reasons. There will be more start stories of caregivers with medical issues in future episodes. I promise you, I’m not that hard on people. But they keep breaking.

At the end of the previous episode, I hinted that we would begin talking about my father’s death. I managed to avoid it for this episode, but next time we will have to address it.

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Even if you can’t provide financial support, please post the links and share this podcast on social media so that I can grow my audience. All of my back episodes are available, so check those out. If you have any comments, questions, or other feedback, please feel free to comment on any of the platforms where you found this podcast. I will see you next time as we continue contemplating life. Until then, fly safe, everyone.