In this episode, I fast-forward through events after my dad died in February 2019 up until July 2025, after I made the decision to actively pursue placement in a skilled nursing facility. It includes a video of a speech I gave at my 70th birthday.
This is part four of my continuing series recounting my efforts to maintain my benefits and live in a safe, comfortable environment.

Hi, this is Chris Young. Welcome to Episode 117 of Contemplating Life.

Over the past three episodes, I’ve been chronicling my struggles to maintain my benefits and to continue to live in my own home where I could be safe and maintain the quality of life that I’m accustomed to. I’ve been telling the story mostly chronologically. However, we are going to fast-forward through some of these events to reach the current conditions.

I was going to tell the story of how I met my roommate, Barbara, and our history as friends for nearly 40 years. I will eventually go back and talk more about our friendship. I had an episode chronicling her early years, half written. We need to skip those details and move quickly through several years of history to get to where we need to be in this saga.

After my dad died, I tried to recruit a roommate who would take over my care. My old friend Barb, whom I met online in 1981, moved here with her adult son Josh on Sunday, May 12, 2019, which was Mother’s Day.

This kept me out of a nursing facility for over six years, including throughout the COVID pandemic.

Over the years, we had our ups and downs. Ultimately, Barb had severe burnout as my caregiver. I wasn’t able to give her very much time off. I have a wonderful respite nurse, Toni, who is here on Tuesdays and Thursdays from 9:30 AM until 4 PM. Occasionally, my sister Carol would come for a few days so Barb could have a weekend off. Barb had a boyfriend who lived in Toledo, whom she would occasionally visit. Sometimes he would come here for a visit for several days. Unfortunately, that relationship eventually ended.

Barb loves to sew. She developed a business selling quilted items such as blankets, table toppers, and soup bowl cozies. She tried selling them on eBay and Etsy. However, her biggest success was selling at weekend craft shows.

Carol would stay with me while Barb and Josh went to the craft shows. They did this several weekends throughout 2023. However, for 2024, Carol said it was too much. Carol had other obligations, helping her daughter Alaina with her new baby boy Beckett.

Without sufficient time off, it was just too much for Barb as well. She and Josh announced they would be leaving by the end of the year.

In May 2024, Barb and I both began having severe health problems. Over the course of six weeks, each of us was hospitalized three times.

The straw that broke the camel’s back was when Barb delayed going to the hospital because she was concerned about who would stay with me. I had friends and family who could be emergency backup. I was going to be okay. I just couldn’t deal with the idea that she was risking her health and life for me.

In episode 66, I told the story of how an incompetent nurse nearly killed me during one of those hospitalizations. While I was in the emergency room before the nurse tried to kill me, Carol and I concluded that this could not go on any longer. Barb was miserable. I couldn’t bear living with someone who didn’t want to be here. The guilt was too much for me. Her health was failing. So was mine.

It seemed like every decision I was making had at its root, “Whose life am I going to ruin the least based upon my decision?”

Carol agreed to come in and take over my care. We would ask Barb and Josh to leave earlier than they had planned. We set the deadline for the end of September. It was one of the most difficult choices I have made in my life. Naturally, they were both pretty pissed off.

I will spare you the details out of respect for my friends.

They finally found an apartment and moved out in early October. Carol moved in and took over my care. I still had my home health aides to get me up in the morning and put me back to bed at night. We still had the respite care on Tuesdays and Thursdays.

Carol had found a really good skilled nursing facility called Wellbrooke in Avon, a suburb about 30 minutes west of my house. She put me on a waiting list.

We had a heart-to-heart conversation. I asked her to at least let me try to find a new roommate. The problem was that I had limited finances. I still do. We had to have a massive repair job done on our plumbing system. We incurred about $14,000 of high-interest credit card debt. We later added to that debt because we needed a new water heater and a new furnace. Money from my trust fund and from some financial supporters who would prefer to remain anonymous has been used to service this debt and cannot be used to pay for a caregiver.

On the advice of a friend at church who is a realtor, we tried to obtain a home equity loan or a home equity line of credit. We would get a much better interest rate than on our credit card. We could also use some of the money to fix up the house so it would be easier to sell when I eventually moved to a nursing facility. You can put $20,000 into a house and increase its selling price by $40,000. If we were forced to sell the house as is, the purchaser would probably fix it up and flip it for a profit. Carol and my other sister, Karen, own the house. They should benefit from those profits. Karen is also dealing with high-interest debt. She could benefit from leveraging her home equity to improve her financial situation.

Carol had been babysitting her new grandson for nearly a year and had not been working. When she moved here, I could give her some of my home health aide hours. But it wasn’t enough work history that she could obtain a loan. The bank took a long time to tell us that. That’s a long story not worth telling.

I have to admit, I felt a positive side effect of this plan was that it might keep me in the house a bit longer. From October 2024 until June 2025, I admit I didn’t do much to move beyond the status quo of Carol staying here. I didn’t think I could pursue a roommate until our finances were in better shape.

Over Thanksgiving 2024, Carol’s oldest daughter, Britney, who lives in Texas, came to visit with her husband and her daughter, Lilianna. Brittany’s adult son Jordan didn’t make the trip. Alaina and her kids also moved in for the weekend, and we had a magnificent time playing games, eating, and just having a blast. It had been years since I had that much fun with family. I will treasure the memory of that weekend for the rest of my life.

Off and on throughout this period, Carol’s youngest daughter Heather, who is in her early 30s, was living here with her dog Stevie. Stevie is not housebroken, and Heather seems unmotivated to do anything about it. The dog also barks excessively. Any time the car drives by or a neighbor comes out of their house, the dog goes wild. We’ve had to remove the carpet in my office and bedroom because we couldn’t get the dog stains out.

Heather had planned to drive to Texas with Britney after Thanksgiving and then move to Arizona to be near her half-brother Tony. Although Brittany and her family helped Heather load a storage pod before leaving for Texas, Heather didn’t move until February 2025.

Ultimately, she didn’t like it. She tried to get a job but couldn’t find one close to her apartment. She wanted to be able to go home for lunch to check on the dog. After a few months, she moved back here. She is currently living here. She’s been living off an inheritance from her father, who passed away from COVID. Pardon me for speaking ill of the dead, the idiot, God rest his soul, refused to get vaccinated even though he had respiratory issues.

His story angered me so much that I wrote a sci-fi motor mystery about a guy who wanted to kill off all the stupid people who refused to get vaccinated. More on that story someday. The villain represented more of me than I would like to admit.

Anyway, still a bit traumatized by losing her dad, and I understand that, Heather seems unmotivated to do anything with her life. I really worry about her.

For a while, I used her as an excuse not to move forward with any of our plans. Carol didn’t know what she would be doing once I was in a facility. Heather had nowhere to go. I was content to live with the status quo.

The wake-up call came in June 2025 when Carol developed pneumonia. In the past, if something happened to Barb, I had Carol as a backup. But when Carol got sick. I had no backup.

Carol and Heather went to the Indy 500 on May 25. Carol must have caught something in the crowd of over 300,000 people. On the 30th, she went to the ER, and my friend Rich stayed with me.

Meanwhile, my dear friend, Father Paul Landwerlen, whom I’ve spoken about much in these episodes, passed away on May 26 at age 91. I missed going to his visitation on June 1 because Carol was sick.

On Wednesday the 4th, it looked like Carol was doing better. On Thursday, my nurse Toni was here most of the day, and I didn’t see Carol. She stayed in her room. I was happy to let her rest. It was her day off. Toni would handle things. However, shortly after the nurse left at 4 PM, I went in to talk to Carol. I should’ve checked in on her sooner before the nurse left. Carol was in terrible shape. I asked the question I didn’t want to ask, but I knew I had to.

“If it wasn’t for me, would you be going to the ER right now?”

She said, “Yes.”

“Then let’s make that happen.”

From the minute Barb moved out, I swore that I would not make the same mistakes with Carol that I had made with Barb. Now it was déjà vu all over again. Someone was delaying their health needs on my behalf. I couldn’t deal with that.

I called my friend Rich to see what his availability would be. He and his wife Kathy were out to dinner with some of Kathy’s friends. He would not be able to get here until later that evening. I called Nurse Toni, and she was able to come back until Rich could get there.

Rich arrived around 9 PM and stayed the night. That was a first For both of us. Carol came home in the wee hours of the morning. That morning, while one of my aides was getting me dressed, my G-tube came out. That meant an ambulance trip to the ER for me. In a weird way, it was fortuitous. Carol didn’t have to deal with me all day.

Over the weekend, my niece Alaina, her kids, and their giant dog, Groot, moved in to help Carol and me. I had fun with my great-nephew Leighton as we tried out a new drone I had just purchased. I lost the old one. Long story for another time.

Throughout the weekend, Alaina had some choice words for me about how this could not go on. I told her that Carol’s illness was a wake-up call for me. I assured her that Carol and I would be having some serious conversations once she recovered. But in the meantime, this is a decision for me and Carol to make. Her opinion is duly noted, but she doesn’t get a vote.

Alaina stayed until Monday. By Tuesday, Carol was doing much better. I had my aide Tre’Sean stay with me while Carol took a previously planned trip to Illinois for a memorial service for Britney’s grandmother.

Over the next couple of days, we had some big adventures a bit unrelated to our current story, but I will mention them anyway.

On June 16, I had an intake appointment to begin seeing a mental health counselor. When I first made this decision to seek help, it was because my old issues with fear of death had been rising to uncomfortable levels. I struggled with this in my late 20s, right before I returned to the Church. As I have explained in previous episodes, those issues were mitigated once I got involved in church. It wasn’t so much that I now had faith in an afterlife. It’s just that I was so busy living, I didn’t have time to think about dying. See episodes 12 and 14 of this podcast for details.

These days, I don’t have the opportunity to do much fulfilling work. I occasionally work on assistive technology designs. I’m struggling to get published as a fiction author with no success. I do this podcast, which keeps me busy but doesn’t get much positive feedback, so I don’t feel like I’m contributing much to the world. I’m not living as fully as I used to, so there is more time to think about dying. Consider that I was worried about death in my late 20s. Think of the impact that concern has in my late 60s. Those fears are much more realistic.

Now, in addition to those issues, I had to face the question of what to do about my living situation. I just needed someone who wasn’t involved to talk to. I wasn’t necessarily looking for advice or answers to my problems. Unless they could cure SMA or give me thousands of dollars, there were no solutions to my problems. I just needed to vent.

On June 18, I had an appointment with my pulmonary doctor. On the way home, we were southbound on I-465 on the west side just north of the I-65 exit. Suddenly, we heard a loud rumbling noise. We both thought it was a semi coming up behind us or to pass us. The van had been wiggling back and forth a bit, but I thought it was just from the wind. Carol also thought the wiggle was just wind. At one point, I began to wonder if it was a low-flying airplane about to crash. I never heard anything like it. Carol eventually realized we had a flat tire and pulled over to the shoulder of the road. Up ahead, we could see mile marker 20.1. I’ve included a Google Street View link.

It was the left rear tire. Had it been a front tire, we could’ve easily lost control and crashed.

We determined that my AAA roadside service had expired. Carol called them to see if they could renew it over the phone and send us some help. All the while, cars and trucks are speeding past us, inches away, at 60 mph. There was a guardrail on our right. If I needed to get out of the van, there was no room to open the wheelchair lift. We would have to limp another quarter-mile down the road to an exit ramp.

While Carol was on the phone with AAA, there was a knock on our passenger side window. We looked up to see a truck parked behind us. It was a guy from a program called Hoosier Helpers. It’s paid for by the Indiana DOT. They have trucks constantly roaming the interstates looking for people who need help. We did. Carol told AAA we had help. Thanks. We will renew was later.

Our spare tire is stored underneath the van in the rear. Our van is over 20 years old. I don’t know if or when that tire has ever been used. The van belonged to my cousin Nancy before she passed away. The guy had trouble loosening the bolts to get the tire out from under the van. He eventually got it loose.

It was a very hot and humid day in the high 80s. We had to turn off the engine and the air conditioning while he worked. We opened up doors and windows, but it didn’t help much.

The guy is a superhero in my opinion. Working on the left side of the van with vehicles speeding by in terrible heat and humidity, he rescued us. We tried to offer him a tip, but he said he had to refuse. it was against policy.

It was scary enough as events unfolded. Over the next few days, I couldn’t help but think about how much worse it could have been. I really wondered if I would ever have the guts to get back in the van. I knew I wouldn’t until we had four new tires.

Then becomes one of those awful decisions when you are a person my age, my condition, and scared to death of dying. You don’t buy the most expensive set of Michelin tires because you know you’re not going to live that long. Carol got five new tires at a reasonable price. Not the top of the line.

On Saturday, June 21, Carol and I had the discussion I’d been avoiding for eight months. “Do I need to move out of here?” I asked.

“Yes,” was the immediate answer.

We talked it out. How did we get here?

I explained why I had been dragging my feet for so long. I admitted I had been using Heather as an excuse. I figured as long as she was here, there was no motive to do anything fast.

I talked about the need to get our finances in order in order to hire a roommate. I told her that when we had talked months ago, I had asked her to let me pursue the roommate option. Even though I had not done anything directly to that effort, I was willing to let that go. Everything I did to try to get my financial situation in order was part of that pursuit. So, to the extent that I could not solve the financial issues, that constituted an attempt and a failure at the roommate solution. I was ready to actively begin pursuing the transition to a skilled nursing facility.

On June 22, I had my first online counseling appointment. I had plenty to discuss.

Carol and I began making appointments to tour nursing facilities. On July 2, we began with Wellbrooke of Avon, where we thought I was 3rd on their waiting list. It turns out the guy keeping the list didn’t work there anymore. They had restarted the list. I was now number eight.

My only previous tour of such a facility was the one in Greenwood that Rich and Kathy took me to visit before my dad died. Greenwood only had shared occupancy rooms that were very small. Avon had private rooms that would be ideal. There would be plenty of space to set up a computer desk, my laser printer, my 3D printer, and a bookcase for my electronic gadgets. I was in love with the place. The video version of this episode shows what the rooms look like.

Now I was in the horrible position of waiting for eight people to die so I could have a decent place to live. Well, let’s say maybe they got better and went home. The list is further complicated by the fact that they already have people there for assisted living or rehab. If those residents need to move up to long-term skilled nursing, they get to jump the line. I checked Avon a month or so ago. I’ve moved up from 8th to 7th in almost a year.

The next day, I began calling other nursing facilities, especially those owned by the same chain as the one in Avon. I also went public on Facebook with my plans to actively pursue an SNF placement.

Back on my 60th birthday, we had a big party in Saint Gabriel’s cafeteria. We joked about meeting again in 10 years. I suggested some of the people at the party wouldn’t live that long. I was right. Many friends and family had died over those 10 years. I didn’t seriously think I would live another 10 years. So, it was time to celebrate again.

We planned a big birthday bash here at my home. It would not only celebrate my 70 years of survival, but it would be one last party in the house that has held so many celebrations of birthdays, Christmas, Easter, Thanksgiving, baby and wedding showers.

The celebration was everything I hoped it would be. It was not just about celebrating my birthday but about celebrating this home that has meant so much to me, my family, and my friends.

At my 60th birthday, we took a photo of me with four of the most important people in my life: Rich and Kathy Logan, and Judy and Anne Chapman. It has served as my Facebook banner photo for 10 years. We recreated that photo for my 70th birthday. The layout of the photo doesn’t lend itself very well to being my Facebook banner. So, I still have the one from my 60th on Facebook. If you can see the photo in the video version of this podcast.

I’m going to conclude this episode with a video of a speech I made on my 70th birthday. I provided a link to the video I made on my 60th birthday.

Here is an excerpt from a video I shot on my 70th birthday. I have linked the full video. It begins with shots of people arriving and eating all the food we had. Then I made a speech. Here’s what I said.

– – – – – – – – – –

So, I want to thank everybody for coming out to help me celebrate. This is a hell of a milestone. Ya know, 10 years ago we had a big party for me. Everybody said, “Well, 10 years from now, we’ll get together and do it again.” I’m thinking, “Yeah right” (sarcastically) [crowd laughs] “I’m going to be here in 10 years?”

But I made a joke. “I’m not going to buy the stamps for the invitations ‘cause I think some of you people won’t be here in 10 years.”

And uh… Unfortunately, that was true. In the past 10 years, we lost my dad, my Uncle Keith, my Aunt Barbara, my Cousin Nancy, a good friend, George Brake, and Stu’s brother Charlie. Some people I worked with back when I was working as a programmer. My good friend “Buz” is gone. [See episode 78 for details.] My good friend Mike Gregory from college is gone. [See episode 45 for details.]

I’m really beating the odds every day.

(Judy: “Yeah”)

I’m on about five different Facebook groups for people with my disability. And as far as I can tell, I am the oldest.

(Judy: “Are you the oldest?”)

I think I’m the oldest. Nobody has claimed… (Judy says, “Applause”) [everyone applauds)

People say I should call the Guinness Book of Records. Maybe I will.

I did find one guy with my disability who made it to 76. But he is gone, so that’s something to aim for… another record.

I’m only here because I’m so blessed to have all of you supporting me. As I have explained before, I look around at all the support I’ve had. The only logical explanation is that there is a God who loves me and put you in my life. And I do my best to be a blessing to you whenever I can. I could never pay it back, but I try to pay it forward as much as I can.

So, as you all know, we’re going to be… We are shopping for a nursing facility for me. So, I’ll be leaving this place. I’ve been here since I was three years old.

You’ve been here in this room for countless birthdays, baby showers, anniversaries, Easter breakfast, Thanksgiving dinners, Christmas, every kind of celebration…

(Cousin Kathy: “First Communions”)

Yeah, all that stuff.

So, this is a celebration… (Kathy: “New Year’s Eve”)

Yeah, New Year’s Eve.

So, this is a celebration to say goodbye to 3119 because it’s probably the last big bash we will have here. So, I’m glad you could all be here to share this with me.

I know a lot of times when I talked about moving into a facility, People say, “Oh, we can’t let you do that.” Well, be honest. There’s not much you can do to help me beyond what you’ve already been doing. So, it’s time to move on.

I don’t think people really appreciate what it takes to keep me here. The two people that know the most are Carol, who has been living here off and on since Dad died, and my good friends Barb and Josh, who are here. Who gave me over five years of their time, and love and care, and I’m deeply indebted to all of them for everything they did to get me this far.

It’s time to move on, and I’m looking forward to it. If I can just get through the waiting list, we’ll be in good shape.

So, anyway, thanks for coming, and I think y’all want to sing. So go ahead.

Kathy: “We’re going to sing.”

Stu: “Oh no.”

Kathy: “Yep, we’re singing, Stu. You’re leading us off.”

Stu: “I forgot the words.”

Kathy: “1, 2, 3…”

All sing: “Happy birthday.”

– – – – – – – – – –

The video continues with a montage of photos taken that day, including the photo of me, the Logans, and the Chapmans.

I really did mean it when I said I was enthusiastic about the move. Avon was so much better than Greenwood. I could easily see myself living there comfortably for the rest of my life. These days, I’m not so sure. We’ll get to the explanation soon.

Shortly after my birthday, I applied to Guinness World Records. It only costs $5 to apply. I claimed that I was the oldest living person with Spinal Muscular Atrophy Type 2.

The first step in applying is to do a search to see if there is an existing record. The only SMA record on file was for the largest single charitable donation for medical treatment.

Zolgensma is a one-time gene therapy treatment available only to children 24 months or younger. When it was first approved by the FDA, Zolgensma was the most expensive drug on the market. Since then, it has dropped to number six. The other expensive drugs are also one-time gene therapy treatments. On June 16, 2021, in the United Arab Emirates, the Red Crescent covered the cost of treatment for a Syrian girl. The donation was for 8,045,596 AED (2,190,469 USD). By the way, the SMA treatment I use daily costs above $350,000 per year and is covered by Medicare and Medicaid.

Recently, the FDA approved Itvisma for patients older than 2 years. It is the same drug as Zolgensma with a different delivery method appropriate for older children and adults. Zolgensma can be given to infants by IV. Itvisma requires a spinal injection with a course of steroids before and after treatment. Its wholesale price is listed at $2.59 million. My guess is that it doesn’t include the cost of the entire treatment protocol.

I don’t think it’s something to be proud of that such a potentially life-saving treatment is the most expensive, or that it required a charitable donation to cover the cost. If I could set the world record for being the oldest SMA patient, it would be a much more positive story.

Guinness said it usually takes 12-20 weeks to get a response. I waited months for an answer. The only way you could expedite a claim was to pay $1,000 to fast-track it. I put out some feelers to Genentech, the company that makes Evrysdi, the drug I’m on. I thought it might be good publicity for them to say that someone taking their treatment had lived so long. They weren’t interested.

I wasn’t so interested in becoming famous for the record. I would be excited to find someone who was older than me with SMA Type 2. If I could get official recognition, I knew it would mean a lot to the SMA community as a whole. I’ve had a positive impact on people in the online groups I participate in. People look up to me. It also might be good for fundraising. In September 2025, I participated in a fundraiser for SMA, and they were impressed that I had lived to age 70. I was hoping I would get word that I had been awarded the rivage before that event in September.

After about seven months, they finally got back to me and said that they would not recognize medical records unless it had been published in a peer-reviewed journal. I thought it was ridiculous. I had my medical records confirming my diagnosis. I have a birth certificate. The distinction between SMA Type 2 and Type 3 is that people with Type 2 never walked. I was willing to get testimony from my friends Stu Byram, Michael, and Pat McGraw, all of whom are older than me and have known me my whole life. They could swear I never walked, confirming I was Type 2 and not Type 3.

It wasn’t enough.

I still claim the record for anyone who asks. I encourage them to prove me wrong. So far, no one has. I recently wrote a draft of my obituary. I included the claim that I was the oldest living SMA Type 2 before I died.

By the way, I will turn 71 on July 12 of this year. That’s 35 days after I’m writing this script.

Okay, that’s all for today.

There will be a brief bonus episode coming next, and then we will continue with my struggle to find a suitable placement for me in a skilled nursing facility that will provide safety and quality of life that keep me comfortable for the remainder of my days.

So, as always… if you find this podcast educational, entertaining, enlightening, or even inspiring, consider sponsoring me on Patreon for just $5 per month. You’ll get early access to the podcast and other exclusive content. I’m not in this for money, but every bit helps.

As always, my deepest thanks to my financial supporters and everyone who supports me in any way. That means more to me than words can express.

Even if you can’t provide financial support, please share the links to this podcast on social media so 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.